A little background about me: I grew up in Switzerland, worked there as a dietician (the only IBD we talked about in school at that time were CD and UC) before moving to the United States in the late nineties. I now work as a freelance translator translating medical records. I am allergic to carrots and celery (the most common food allergy in Switzerland).
Overall I have been very healthy until March of this year when I had a feeling of a lump in my throat. I was put on Omeprazole, which didn’t help. Gastroscopy, laryngoscopy, CT of the neck, Barium swallows, pressure measurements of the esophagus followed. Acid reflux was seen, as well as spasm of the esophagus. The Omeprazole dose was doubled, still did not help against the feeling of a lump in my throat, but actually made the reflux worse (I assume due to acid rebound) to the point where I could feel the acid and my voice became hoarse. In June I started having intermittent abdominal pain on my right side, about every two weeks, with bad diarrhea for a day or two. I’d be fine and two or three weeks later it would start again. I went back to my gastroenterologist in September, was taken off the Omeprazole (I can’t feel the acid anymore and my voice is back to normal since being off the medication) and lots of tests were ordered. The stool tests showed fecal fat but normal pancreatic elastase, D-Xylose absorption test, and celiac comprehensive panel (gliadin antibody, IgG, IgA serum, tTG IgA antibody, reticulin IgA screen, gliadin antibody, IgA and the endomysial Ab (IgA) screen). A colonoscopy was performed due to the diarrhea (which started being a more frequent occurrence). It revealed lymphocytic colitis, as well as some polyps that were removed. I also had an ultrasound of the right upper quadrant because of the pain on the right side that seems to be there nearly daily. Aside from some small polyps in the gallbladder everything else in the ultrasound looked fine. At the end of September, when the biopsy results came back, I was put on Budesonide for 8 weeks. At that time, I decided to see whether Budesonide alone would do the trick (as my gastroenterologist suggested), and hoped that maybe the LC was due to the Omeprazole, and that I would not need to change my diet (wishful thinking of a Swiss girl who loves her cheese and homemade bread). The worst of the diarrhea went away. But after 4 weeks on Budesonide I still had days of abdominal cramping with weird stools. In September I also started having pain in my rib cage (both sides), and on the right side of my abdomen wrapping around towards my back, and more frequent pain in the front of my hips, especially the right side. I also frequently have an itchy feeling on my thighs and buttocks, sometimes my face. In the meantime I devoured Tex’s book and came to the conclusion that a) the acid reflux was due to the LC and the Omeprazole wasn’t working because it was not treating the origin of the problem and b) that there is something in my diet that my body does not seem to tolerate anymore (whether I like the fact or not, wishing it away won’t work, not even while on Budesonide). I ordered the test from Enterolab (gluten, casein, soy, eggs plus gene test for celiac disease) and am waiting for the results. I left away the gluten about three weeks ago and dairy about ten days ago (after feeling terrible after days on which I had eaten a lot of cheese and my own homemade organic yogurt).
I had lost about 6 pounds before leaving away the gluten, the weight stabilized after, but now that I left dairy away, I lost another 2 pounds. And I have had again days with diarrhea and abdominal pain this past week, causing me to lose more weight and wonder what else I am not tolerating. I am currently on 2 capsules of Budesonide a day, trying to taper it off.
Here are my questions:
1. What exactly does the Budesonide do? Does it actively help with the healing of the intestine or speed up the healing? Should I ask my gastroenterologist for another prescription of it to extend the time I am taking it? Or is it not working that well if I still have diarrhea while on it and am obviously not tolerating some foods that I am eating? In that case I might as well taper it and be done with it and try to figure out what it is that I am not tolerating. I have been keeping a diary of what I eat for a month now, but it is not that obvious what the offending foods are.
2. Is it typical to have pain in the rib cage? What is the actual mechanism between MC and pain in joints/muscles? I saw my PCP about the pain and she said everything felt normal to her and that the pain was not really in the joints but where the muscles attach to the bones (both on ribs and hips). She ran all kinds of blood tests to rule out other autoimmune diseases, check the blood count, etc. Everything was normal except that I am vitamin D deficient (I received a prescription for vitamin D).
My PCP and my gastroenterologist do not think that the pain is related to MC (as that is not an official symptom) but they don’t know what is causing the pain either.
3. I assume that since they found fat in my stools there must be damage in the small intestine. How likely is it that I actually have celiac disease? Had I known all that I know now, I would have asked to have biopsies of the small intestine done during the gastroscopy in spring but at that time celiac disease or LC was never even on my radar. The gastroscopy report said that the duodenum “looked” normal but no biopsies were taken.
4. I kind of wish I had ordered more extensive testing from Enterolab, but I didn’t (cost was one reason, the other is that I was in a bit of denial that I might have more food intolerances than gluten, casein, soy and eggs and I still don’t have the results of these tests). Should I do an elimination diet?
I am torn. I do not want to lose more weight, and I think I would lose more weight on an elimination diet, at the same time, not knowing all my food intolerances with resulting diarrhea and malabsorption will only let me absorb so many nutrients. (Having worked as a dietician twenty years ago seems pretty ironic now that I am asking these questions!).
What would be the best timing? Do an elimination diet while tapering off from the Budesonide? Wait until after being done with the Budesonide? Wait for the Enterolab results? I should get the results within 1-2 weeks. I have about 36 capsules of Budesonide left.
I apologize for the superlong post!
Thank you Tex for writing such a well-researched book about microscopic colitis and responding to people’s questions!
Thank you to all of the contributors on this forum. I am SOOO grateful for your posts that I have been reading and I look forward to your input!!!
Newbie who needs advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Patricia,
I'm sorry that your symptoms are persistent, but I'm glad that you decided to join us. Welcome to our Internet family.
You appear to be taking the right steps to stop the inflammation, and bring the LC under control. And the EnteroLab results will be a big help for making diet decisions, after you receive the results.
I'll try to answer your questions:
This means that when inflammation is present, taking a corticosteroid will significantly increase the rate at which vitamin D reserves in the body are depleted, as it is used up to suppress inflammation. This suggests to me that the budesonide may no longer be working well for you simply because your body is running low on vitamin D. (But that's just my opinion, not medical advice).
At 3 weeks on a GF diet, your anti-gliadin antibody level (in your gut, not in your blood) hasn't had time to decline much, because the half-life of anti-gliadin antibodies is 120 days. Therefore, gluten is still dominating your immune system's attention. As long as that is happening, it's very difficult to detect other food sensitivities, because we seem to react to anything and everything. I had the same problem when I was recovering — at first my food/reaction diary made no sense. But after some time (to allow the anti-gliadin antibodies to decay), reaction patterns to other foods became evident.
When MC was originally described, pain was not noted as a symptom of the disease (because not everyone who has MC has pain), but most of us do have all sorts of pain associated with the disease (which is a mystery to GI specialists and most other doctors, of course). Your PCP is wrong — the pain associated with the joints is actually in the joints, and it's due to partially-digested peptides being deposited there by the bloodstream. MC is associated with increased intestinal permeability (leaky gut), and this allows peptides from gluten, casein, etc., to enter the bloodstream to be carried to other organs, resulting in pain and inflammation at those remote locations. This can cause debilitating symptoms very similar to rheumatoid arthritis. And the muscle pain has been misdiagnosed in some cases as fibromyalgia.
How long ago did you send your sample to the lab? Your results might be available soon. The turnaround time used to be around 3 weeks, but I'm not sure what it is at the moment. If you didn't order the test panel for the 11 additional antigenic foods, you might still need to do an elimination diet in order to test for those foods.
)
Healing takes a long time (years), so if we wait until we are tapering off the budesonide before adjusting our diet, we will almost surely relapse. Healing certainly doesn't have to be complete before remission can be achieved, but it has to at least be underway.
If I were in your situation (assuming that you do not have access to additional Entocort), I would drop the dosage to 1 capsule per day, I would start taking a potent dose of vitamin D (to make the most of the Entocort that remains), and I would start taking an antihistamine (to take the place of the reduction in the budesonide dosage). As an added benefit, we've found that the increased vitamin D intake prevents the formation and development of polyps (apparently this is the mechanism by which vitamin D helps to prevent colon cancer).
Long posts are not a problem — on the contrary, the details are very helpful for understanding your situation, so that we can customize the information that might be useful for you.
Thank you very much for your kind words. Again, welcome aboard, and please feel free to ask anything.
Tex
I'm sorry that your symptoms are persistent, but I'm glad that you decided to join us. Welcome to our Internet family.
You appear to be taking the right steps to stop the inflammation, and bring the LC under control. And the EnteroLab results will be a big help for making diet decisions, after you receive the results.
I'll try to answer your questions:
Practically speaking, the budesonide masks symptoms. Research shows that corticosteroids actually retard healing slightly, but they do help to suppress inflammation. Many members here use it to mask their symptoms to make life easier while allowing time for the diet to control the inflammation. You won't find this in the mainstream medical knowledgebase, but technically, according to my research, corticosteroids work by providing a synergistic effect for vitamin D. IOW, vitamin D (in it's active form) actually does the work of suppressing the inflammation, after the budesonide promotes the expression of additonal vitamin D receptors.Patricia wrote:1. What exactly does the Budesonide do? Does it actively help with the healing of the intestine or speed up the healing?
This means that when inflammation is present, taking a corticosteroid will significantly increase the rate at which vitamin D reserves in the body are depleted, as it is used up to suppress inflammation. This suggests to me that the budesonide may no longer be working well for you simply because your body is running low on vitamin D. (But that's just my opinion, not medical advice).
At 3 weeks on a GF diet, your anti-gliadin antibody level (in your gut, not in your blood) hasn't had time to decline much, because the half-life of anti-gliadin antibodies is 120 days. Therefore, gluten is still dominating your immune system's attention. As long as that is happening, it's very difficult to detect other food sensitivities, because we seem to react to anything and everything. I had the same problem when I was recovering — at first my food/reaction diary made no sense. But after some time (to allow the anti-gliadin antibodies to decay), reaction patterns to other foods became evident.
It's not typical, but it's not rare, either. In some cases that pain may be due to gas, but it is also common for gallbladder issues to be associated with MC (because any part of the digestive system can become inflamed with MC). Those symptoms typically resolve as the inflammation in the intestines that causes the MC is brought under control. If the pain is severe, it could be due to costochondritis (which has caused problems for a few members).Patricia wrote:2. Is it typical to have pain in the rib cage? What is the actual mechanism between MC and pain in joints/muscles?
When MC was originally described, pain was not noted as a symptom of the disease (because not everyone who has MC has pain), but most of us do have all sorts of pain associated with the disease (which is a mystery to GI specialists and most other doctors, of course). Your PCP is wrong — the pain associated with the joints is actually in the joints, and it's due to partially-digested peptides being deposited there by the bloodstream. MC is associated with increased intestinal permeability (leaky gut), and this allows peptides from gluten, casein, etc., to enter the bloodstream to be carried to other organs, resulting in pain and inflammation at those remote locations. This can cause debilitating symptoms very similar to rheumatoid arthritis. And the muscle pain has been misdiagnosed in some cases as fibromyalgia.
As noted in the book, small intestinal damage is very common with MC. Whether or not you actually have celiac disease mostly depends on whether or not you have one of the common celiac genes. If you have the gene, since you already have LC, continuing to consume gluten would almost certainly cause the disease to develop (if it isn't already developed). But even without a celiac gene, MC typically causes some degree of small intestinal damage, especially in the ileum, because there are many other non-celiac genes that predispose to gluten-sensitivity, associated with MC. Whether or not you have celiac disease is a moot point though, because the proper treatment for MC also resolves celiac disease symptoms.Patricia wrote:3. I assume that since they found fat in my stools there must be damage in the small intestine. How likely is it that I actually have celiac disease?
EnteroLab usually keeps samples in storage for at least a few months, so you could still add to the order if you want. They used to keep samples for a year or more, but they finally had to shorten the interval because of storage space limitations due to increased demand for tests.Patricia wrote:4. I kind of wish I had ordered more extensive testing from Enterolab, but I didn’t (cost was one reason, the other is that I was in a bit of denial that I might have more food intolerances than gluten, casein, soy and eggs and I still don’t have the results of these tests). Should I do an elimination diet?
How long ago did you send your sample to the lab? Your results might be available soon. The turnaround time used to be around 3 weeks, but I'm not sure what it is at the moment. If you didn't order the test panel for the 11 additional antigenic foods, you might still need to do an elimination diet in order to test for those foods.
The earlier a safe diet is being used, the sooner the intestines can begin to heal. While Entocort can help to suppress inflammation, the inflammation will continue to be regenerated as long as any food that promotes the production of antibodies remains in the diet. That's why most people relapse after weaning off Entocort (but of course most GI specialists still insist that diet has nothing to do with MC.Patricia wrote:What would be the best timing? Do an elimination diet while tapering off from the Budesonide? Wait until after being done with the Budesonide? Wait for the Enterolab results? I should get the results within 1-2 weeks. I have about 36 capsules of Budesonide left.
) Healing takes a long time (years), so if we wait until we are tapering off the budesonide before adjusting our diet, we will almost surely relapse. Healing certainly doesn't have to be complete before remission can be achieved, but it has to at least be underway.
If I were in your situation (assuming that you do not have access to additional Entocort), I would drop the dosage to 1 capsule per day, I would start taking a potent dose of vitamin D (to make the most of the Entocort that remains), and I would start taking an antihistamine (to take the place of the reduction in the budesonide dosage). As an added benefit, we've found that the increased vitamin D intake prevents the formation and development of polyps (apparently this is the mechanism by which vitamin D helps to prevent colon cancer).
Long posts are not a problem — on the contrary, the details are very helpful for understanding your situation, so that we can customize the information that might be useful for you.
Thank you very much for your kind words. Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome Patricia
One of my close friends is Swiss born, from village Ticino (her family are still there)
Sorry you had to find us
One thing that comes to mind is that even though you have removed gluten and now dairy from your diet, that there is still another major trigger. The elimination process is like a roller coaster ride, you remove a major trigger, start to feel better, then feel worse, remove another trigger, start to feel better and then feel worse etc etc. as you remove a major trigger, another item becomes more reactive.
The enterolab tests will maybe confirm this, but other common major triggers are eggs, soy, fibre, artificial sugars.
Are you eating a low inflammation, low fibre, well cooked eating plan? Ie. avoiding raw fruit and salads?
The sooner you figure out and eliminate major triggers, the quicker you will heal.
I reiterate Tex's suggestion to start high doses Vit D3,
The other thing tex mentions is taking anti-histamine, take the time to read the posts on histamine/mast cells, as this is a common cause of inflammation for Mc'ers.
You may have read in some of the previous discussions, The tricky part of MC is there is no guaranteed solution or one size fits all protocol. We are all different. A med that works fantastically for one, can cause major chaos for another. Read the posts in the success stories area, and in the medication /diet area, and see what others are doing.... This may give you some short cuts or common things to avoid, and it may also give you some info in case you have to investigate a plan B.
Hope this helps.
Take care
One of my close friends is Swiss born, from village Ticino (her family are still there)
Sorry you had to find us
One thing that comes to mind is that even though you have removed gluten and now dairy from your diet, that there is still another major trigger. The elimination process is like a roller coaster ride, you remove a major trigger, start to feel better, then feel worse, remove another trigger, start to feel better and then feel worse etc etc. as you remove a major trigger, another item becomes more reactive.
The enterolab tests will maybe confirm this, but other common major triggers are eggs, soy, fibre, artificial sugars.
Are you eating a low inflammation, low fibre, well cooked eating plan? Ie. avoiding raw fruit and salads?
The sooner you figure out and eliminate major triggers, the quicker you will heal.
I reiterate Tex's suggestion to start high doses Vit D3,
The other thing tex mentions is taking anti-histamine, take the time to read the posts on histamine/mast cells, as this is a common cause of inflammation for Mc'ers.
You may have read in some of the previous discussions, The tricky part of MC is there is no guaranteed solution or one size fits all protocol. We are all different. A med that works fantastically for one, can cause major chaos for another. Read the posts in the success stories area, and in the medication /diet area, and see what others are doing.... This may give you some short cuts or common things to avoid, and it may also give you some info in case you have to investigate a plan B.
Hope this helps.
Take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you so much for taking the time to write such detailed answers, Tex. It is so helpful!!! javascript:emoticon(':lol:')
I had asked my PCP whether she could do some vitamin D testing because of the malabsorption going on (fecal fat). She agreed to the testing but said that there was no malabsorption going on if my weight had stabilized. Once the results came back showing a vitamin D deficiency, her assistant called me and said that they called in a prescription for 50,000 units of D3 per week for 12 weeks, to be followed with 1000 units per day (over the counter). The container that I received from the pharmacy, however, says 50,000 units of D2.
When I had seen my PCP I had also told her that I started on a gluten free diet. She tried to convince me to go off the gluten free diet making it sound like it was something risky. She said there was celiac disease, which was a true disease, and everything else regarding gluten was more a fad than anything else and to discuss it with my gastroenterologist. I was a bit surprised by her response, I really like her and she is very thorough. But I disagree with her opinion on gluten.
My gastroenterologist seems to be more open to gluten free diets. He said that some of his patients do a lot better on gluten free diets and he encourages those to continue, whether the blood tests show anything or not.
Regarding Enterolab: Thanksgiving will mark 3 weeks after they have received my test kit. I will make sure to let you know what the results are once I receive them. In the meantime I continue GF DF and I will reduce the Budesonide to 1 capsule a day. Of the 36 capsules that I have left, how many should I take at the rate of 1 capsule a day before going to 1 capsule every 2nd or 3rd day?
I had asked my PCP whether she could do some vitamin D testing because of the malabsorption going on (fecal fat). She agreed to the testing but said that there was no malabsorption going on if my weight had stabilized. Once the results came back showing a vitamin D deficiency, her assistant called me and said that they called in a prescription for 50,000 units of D3 per week for 12 weeks, to be followed with 1000 units per day (over the counter). The container that I received from the pharmacy, however, says 50,000 units of D2.
When I had seen my PCP I had also told her that I started on a gluten free diet. She tried to convince me to go off the gluten free diet making it sound like it was something risky. She said there was celiac disease, which was a true disease, and everything else regarding gluten was more a fad than anything else and to discuss it with my gastroenterologist. I was a bit surprised by her response, I really like her and she is very thorough. But I disagree with her opinion on gluten.
My gastroenterologist seems to be more open to gluten free diets. He said that some of his patients do a lot better on gluten free diets and he encourages those to continue, whether the blood tests show anything or not.
Regarding Enterolab: Thanksgiving will mark 3 weeks after they have received my test kit. I will make sure to let you know what the results are once I receive them. In the meantime I continue GF DF and I will reduce the Budesonide to 1 capsule a day. Of the 36 capsules that I have left, how many should I take at the rate of 1 capsule a day before going to 1 capsule every 2nd or 3rd day?
Thank you for the warm welcome, Gabes! This forum is wonderful. It is so nice to hear from other people what actually helped them and receive advice different than "come back in 4 months".
And yes, it does feel like a roller coaster. I made some changes to my diet, felt better, and out of nowhere the diarrhea and abdominal cramps are back. It is good to know that this is "normal", and not to think that the diet is not working. I don't have any artificial sugars in my diet and hardly any regular sugar. I reduced but did not cut out raw fruits and salads. I should probably try that. I love salad but I did notice that its transit time is very short. A few days of eating mostly rice (risotto) and baked pumpkin seems to calm down my system.
I will continue reading posts on here as there is so much to learn. I am glad I finally posted my story. It is so nice to get individualized advice and input!!
And yes, the Ticino is beautiful. It's the Italian speaking, southern part of Switzerland with palm trees and delicious Italian cuisine....
And yes, it does feel like a roller coaster. I made some changes to my diet, felt better, and out of nowhere the diarrhea and abdominal cramps are back. It is good to know that this is "normal", and not to think that the diet is not working. I don't have any artificial sugars in my diet and hardly any regular sugar. I reduced but did not cut out raw fruits and salads. I should probably try that. I love salad but I did notice that its transit time is very short. A few days of eating mostly rice (risotto) and baked pumpkin seems to calm down my system.
I will continue reading posts on here as there is so much to learn. I am glad I finally posted my story. It is so nice to get individualized advice and input!!
And yes, the Ticino is beautiful. It's the Italian speaking, southern part of Switzerland with palm trees and delicious Italian cuisine....
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
The reason that this forum exists, and has so many members is because of the 'come back in 4 months' approach.
sadly the roller coaster is semi normal. (pretty sucky hey..)
I would remove the raw fruit and salad (for now) and any other items that you notice have a short motility, either wait for the results or remove eggs and/or soy.
if there is a meal that settles well, stick with it, the less inflammation the better you will feel.
It is a big adjustment to read things here. It can feel like you have landed in another planet! all the things we were taught about foods, nutrition kinda dont apply anymore in MC world. It is a big adjustment to modify and make the changes that our bodies need.
Also keep in mind that triggers are not just food based.
Stress (emotional/mental/physical) is a major trigger for me. Adrenalin/Cortisol causes me to react.
Linked to the histamine/mast cell issue there are environmental triggers, mould, chemicals, pollen,
keeping a journal is a great way to pinpoint what is affecting you. List foods, meds, activities, supplements, symptoms sleep patterns etc. We cant always eliminate all triggers, but we can minimise impact and juggle our schedules so that reactions happen when we are at home and not at work or social gathering.
ie, I always react to dental visits (even just a clean) so I schedule these later in the day on a Friday.
When i was working, I would block time before long meetings so I could have some quiet time and toilet time. Schedule the potentially intense/stressful ones later in the day so I was at home should there be a reaction...
I would do cook ups on the weekends, so i had lunches, snacks ready for the week.
it can all seem full on at first, take it a meal at a time, a day at a time, make gradual changes. within a few weeks things will get easier and 'your MC management plan' starts to fall into place and be part of the routine
sadly the roller coaster is semi normal. (pretty sucky hey..)
I would remove the raw fruit and salad (for now) and any other items that you notice have a short motility, either wait for the results or remove eggs and/or soy.
if there is a meal that settles well, stick with it, the less inflammation the better you will feel.
It is a big adjustment to read things here. It can feel like you have landed in another planet! all the things we were taught about foods, nutrition kinda dont apply anymore in MC world. It is a big adjustment to modify and make the changes that our bodies need.
Also keep in mind that triggers are not just food based.
Stress (emotional/mental/physical) is a major trigger for me. Adrenalin/Cortisol causes me to react.
Linked to the histamine/mast cell issue there are environmental triggers, mould, chemicals, pollen,
keeping a journal is a great way to pinpoint what is affecting you. List foods, meds, activities, supplements, symptoms sleep patterns etc. We cant always eliminate all triggers, but we can minimise impact and juggle our schedules so that reactions happen when we are at home and not at work or social gathering.
ie, I always react to dental visits (even just a clean) so I schedule these later in the day on a Friday.
When i was working, I would block time before long meetings so I could have some quiet time and toilet time. Schedule the potentially intense/stressful ones later in the day so I was at home should there be a reaction...
I would do cook ups on the weekends, so i had lunches, snacks ready for the week.
it can all seem full on at first, take it a meal at a time, a day at a time, make gradual changes. within a few weeks things will get easier and 'your MC management plan' starts to fall into place and be part of the routine
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Yes, despite the fact that published research demonstrates conclusively that D2 is very inferior to D3 (and recommends that D2 shouldn't be used for supplementation), doctors continue to practice using obsolete knowledge, and all prescription vitamin D is in the form of D2.Patricia wrote:The container that I received from the pharmacy, however, says 50,000 units of D2.
You would be much better off buying OTC vitamin D (because it is all in the form of D3), and taking 10,000 IU per day for 12 weeks and then either testing your level, or dropping your dose to 5,000 IU per day (more during the winter, if you live in the northern part of the U. S.)
Apparently your GI specialist is much more open-minded and willing to learn from his patients than your PCP. She is apparently still lost, regarding the non-celiac gluten sensitivity problem associated with MC and many other health issues.
You may have to make that decision based on your response (symptoms). But with such a limited supply, allocating approximately equal time for each phase (if you want to end with a rate of 1 capsule every 4 days), would require dropping from 1 capsule per day to 1 every other day after about 18 days. That would leave 18 capsules, 9 of which would be used over the next 18 days. Reducing to 1 every 3 days for the next 18 days would use another 6 capsules. That would leave 3 capsules, which would last for 12 days at the rate of 1 every 4 days.Patricia wrote:Of the 36 capsules that I have left, how many should I take at the rate of 1 capsule a day before going to 1 capsule every 2nd or 3rd day?
If you want to stretch it out so that the last phase would be at 1 capsule every 5 days, you would need to shorten the length of each stage to 16 days, except that you would use 1 every 3 days for only 15 days, and the last stage (at 1 capsule each 5 days), would last for only 15 days.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you so much Gabes and Tex for all the info.
I am going to taper according to your suggestion, Tex. My gastroenterologist just told me to take the Budesonide for 8 weeks and then I'd be good to go. When I asked him about tapering he said it would be a good idea to taper the last week. But that was the extent of that. I am grateful that you provided me with a much more detailed plan on how to actually do the tapering.
Regarding the vitamin D: I ordered D3 from Amazon (5000 IU per softgel). My PCP had given me a prescription for D2, 50,000 IU once a week. Should I take 10 softgels per week? That would equal 50,000 units per week? I could take 1 softgel one day and 2 the following day and then again 1 on the third day. My vitamin D level is 18.3.
Also, I ordered the magnesium spray (Ancient Minerals Magnesium Oil) since I think I am most likely also magnesium-deficient. How much do you apply, Gabes?
The last two days weren't that great. Tuesday was kind of stressful anyway, add to that 7 bowel movements, dizziness in the afternoon, and an evening event where I had to stand for 2 hours. My right groin area was so painful from standing. I don't think I had that before. I am not sure whether that was due to something I ate (I think I had traces of dairy on Sunday night, but definitely no gluten), my period, all the bowel movements, the stress, .....My ribcage has been a lot more painful, too. I was unable to sleep from Tuesday to Wednesday (and normally I always fall asleep as soon as I hit the pillow and don't wake up before the alarm clock). I guess I just have to wrap my mind around the fact that microscopic colitis is not as "microscopic" as it sounds and not just a little bit of diarrhea and that's it.
Do the partially digested peptides usually get deposited in joints or muscles closest to the intestines?
How do I know if histamine/mast cells are a problem for me or not?
Regarding supplements: I take a multivitamin (one a day women's) from Bayer. I called them and asked about gluten, dairy, egg and soy. They said that there was no dairy or eggs in it. Soy: a small amount of highly refined soy, the amount is so small that they don't have to declare it. Gluten: they don't add any but the vitamins are produced in a factory where other gluten-containing products are manufactured and they cannot guarantee that there isn't any cross contamination. Do you recommend any particular brand of multivitamins that can actually guarantee that?
I still didn't get back the Enterolab results but I hope they will be correct. I didn't make a connection between Budesonide and stool testing until I read something on this website about. I don't recall reading on the Enterolab website about it. I think I was on Budesonide for 1 month exactly at the time of my stool test.
I am going to taper according to your suggestion, Tex. My gastroenterologist just told me to take the Budesonide for 8 weeks and then I'd be good to go. When I asked him about tapering he said it would be a good idea to taper the last week. But that was the extent of that. I am grateful that you provided me with a much more detailed plan on how to actually do the tapering.
Regarding the vitamin D: I ordered D3 from Amazon (5000 IU per softgel). My PCP had given me a prescription for D2, 50,000 IU once a week. Should I take 10 softgels per week? That would equal 50,000 units per week? I could take 1 softgel one day and 2 the following day and then again 1 on the third day. My vitamin D level is 18.3.
Also, I ordered the magnesium spray (Ancient Minerals Magnesium Oil) since I think I am most likely also magnesium-deficient. How much do you apply, Gabes?
The last two days weren't that great. Tuesday was kind of stressful anyway, add to that 7 bowel movements, dizziness in the afternoon, and an evening event where I had to stand for 2 hours. My right groin area was so painful from standing. I don't think I had that before. I am not sure whether that was due to something I ate (I think I had traces of dairy on Sunday night, but definitely no gluten), my period, all the bowel movements, the stress, .....My ribcage has been a lot more painful, too. I was unable to sleep from Tuesday to Wednesday (and normally I always fall asleep as soon as I hit the pillow and don't wake up before the alarm clock). I guess I just have to wrap my mind around the fact that microscopic colitis is not as "microscopic" as it sounds and not just a little bit of diarrhea and that's it.
Do the partially digested peptides usually get deposited in joints or muscles closest to the intestines?
How do I know if histamine/mast cells are a problem for me or not?
Regarding supplements: I take a multivitamin (one a day women's) from Bayer. I called them and asked about gluten, dairy, egg and soy. They said that there was no dairy or eggs in it. Soy: a small amount of highly refined soy, the amount is so small that they don't have to declare it. Gluten: they don't add any but the vitamins are produced in a factory where other gluten-containing products are manufactured and they cannot guarantee that there isn't any cross contamination. Do you recommend any particular brand of multivitamins that can actually guarantee that?
I still didn't get back the Enterolab results but I hope they will be correct. I didn't make a connection between Budesonide and stool testing until I read something on this website about. I don't recall reading on the Enterolab website about it. I think I was on Budesonide for 1 month exactly at the time of my stool test.
Hi Patricia,
That vitamin D treatment plan should work fine.
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Freeda makes vitamins and minerals for people who have food sensitivities, and many members here use their products. The link below lists their multivitamin and mineral options, for example:
Multivitamins & Minerals
But there are a number of other manufacturers who offer safe choices for vitamins and minerals also. Hopefully others will post their favorites if they happen to read this thread. Note that any multivitamin that contains vitamin E probably contains soy.
Tex
That vitamin D treatment plan should work fine.
They can wind up just about anywhere. Back when I was reacting, my main arthritis problems were in my neck, my knees, my left elbow, and the joints of the fingers on my right hand. And of course brain fog was a regular problem, because gluten peptides can cross the blood/brain barrier. Of course those symptoms slowly resolved as my gut healed, but since much of the damage of arthritis cannot be reversed, several of the fingers of my right hand clearly show how serious the inflammation and physical damage was at the time. They are permanently crooked and twisted.Patricia wrote:Do the partially digested peptides usually get deposited in joints or muscles closest to the intestines?
Here is some basic information about mast cells, and how mast cell issues are associated with microscopic colitis:Patricia wrote:How do I know if histamine/mast cells are a problem for me or not?
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Freeda makes vitamins and minerals for people who have food sensitivities, and many members here use their products. The link below lists their multivitamin and mineral options, for example:
Multivitamins & Minerals
But there are a number of other manufacturers who offer safe choices for vitamins and minerals also. Hopefully others will post their favorites if they happen to read this thread. Note that any multivitamin that contains vitamin E probably contains soy.
That won't have any significant effect on your EnteroLab test results. You would have to have been using it for at least several months for the effect to become significant enough to cause a problem with the accuracy of the results.Patricia wrote:I think I was on Budesonide for 1 month exactly at the time of my stool test.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you so much for all your help, Tex, and for the info about mast cells. I started reading it and will have to look more into it. I definitely do not have symptoms within minutes of eating. It is more within hours. But I often have itchy skin (still do) and before I left away dairy my face would sometimes be red and itchy as well.
So sorry to hear about the arthritis and your fingers. What food can do to us!!
I have been a "foodie" all my life. I have always loved to cook, bake, eat, go out to dinner....no limitations aside from my carrot/celery allergy. But all of a sudden it is so different. I eat something a little more adventurous than rice, baked pumpkin, eggs, applesauce or bananas and the next day I feel like I have been poisoned: nausea, diarrhea, dizziness, fatigue. Reading the section with the success stories definitely gives me a lot of hope
Glad to hear that 1 month of Budesonide should not have a significant effect on the EnteroLab testing!
I am so grateful for all your support and help!!!
So sorry to hear about the arthritis and your fingers. What food can do to us!!
I have been a "foodie" all my life. I have always loved to cook, bake, eat, go out to dinner....no limitations aside from my carrot/celery allergy. But all of a sudden it is so different. I eat something a little more adventurous than rice, baked pumpkin, eggs, applesauce or bananas and the next day I feel like I have been poisoned: nausea, diarrhea, dizziness, fatigue. Reading the section with the success stories definitely gives me a lot of hope
Glad to hear that 1 month of Budesonide should not have a significant effect on the EnteroLab testing!
I am so grateful for all your support and help!!!
Hi Patricia:
Welcome to the forum! Just to add a few things to the good advice you've already gotten. Regarding the Entocort, 2 months is a very short time to be on it. It doesn't help everyone, but most people that have improvement on it, find they revert if not on it 4-6 months. Will your doctor not prescribe for longer? The Entocort helps with the symptoms, so that you can work on your diet in the meantime.
I have also had terrible issues with joint stiffness, primarily in my hands. I have been on Entocort for the last 6 months (currently weaning off, taking one every other day), and have no joint issues. I hope they do not come back when I get off of it.
Keep your diet simple. I agree that it is very hard to identify food sensitivities, when everything seems to trigger it. You don't mention any meat in the foods you are eating-are you eating animal protein? That can help you heal. It is good you did the Enterolab, and will get your results soon. I get an itchiness in my cheek from certain higher histamine foods, and will start coughing and be sniffly. I do ok with most foods with a higher histamine content if I keep the portion small, but have the reaction described especially with alcohol and walnuts. I also freeze foods, to avoid the issue with increasing histamine in leftovers (I am ok eating leftovers the day after, but no longer)
Lisa
Welcome to the forum! Just to add a few things to the good advice you've already gotten. Regarding the Entocort, 2 months is a very short time to be on it. It doesn't help everyone, but most people that have improvement on it, find they revert if not on it 4-6 months. Will your doctor not prescribe for longer? The Entocort helps with the symptoms, so that you can work on your diet in the meantime.
I have also had terrible issues with joint stiffness, primarily in my hands. I have been on Entocort for the last 6 months (currently weaning off, taking one every other day), and have no joint issues. I hope they do not come back when I get off of it.
Keep your diet simple. I agree that it is very hard to identify food sensitivities, when everything seems to trigger it. You don't mention any meat in the foods you are eating-are you eating animal protein? That can help you heal. It is good you did the Enterolab, and will get your results soon. I get an itchiness in my cheek from certain higher histamine foods, and will start coughing and be sniffly. I do ok with most foods with a higher histamine content if I keep the portion small, but have the reaction described especially with alcohol and walnuts. I also freeze foods, to avoid the issue with increasing histamine in leftovers (I am ok eating leftovers the day after, but no longer)
Lisa
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Gabes-Apg
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MC is definately whole of body!!I guess I just have to wrap my mind around the fact that microscopic colitis is not as "microscopic" as it sounds
This is an indicator that there is histamine /mast cell occurring,But I often have itchy skin (still do) and before I left away dairy my face would sometimes be red and itchy as well.
that is the same for alot of us! pre MC, I used to do cake decorating. For now stick to the bland, give your body the time it needs to heal. I get that it is not ideal timing with Thanksgiving and Christmas etc if you can stick to the bland, minimal ingredients and allow your gut to do some more healing, things will get better.I have been a "foodie" all my life. I have always loved to cook, bake, eat, go out to dinner....no limitations aside from my carrot/celery allergy. But all of a sudden it is so different. I eat something a little more adventurous than rice, baked pumpkin, eggs, applesauce or bananas and the next day I feel like I have been poisoned: nausea, diarrhea, dizziness, fatigue. Reading the section with the success stories definitely gives me a lot of hope Smile
I got my Dx on 22 Dec 2009, I had spent the 3-4 months before this, including my 40th birthday quite poorly having poop accidents, xmas day 'on the toilet'. There is no good time for this to happen.
Once you know the major triggers, and remove them, get regular Vit D3 etc all going well things should improve in a few weeks.
The magnesium - i use the spray on my legs every time i go to the toilet. Spray on my legs, neck, arms morning and night, and through the night if I wake up with pain /headache (i have multiple AI issues)
I also take magnesium orally.
Normal RDI is about 400-600mg
those with inflammation health issues need at least 800mg.
It will take dosages above 800mg for 2-4 months to correct deficiencies
hope this helps
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I received my Enterolab results yesterday afternoon. I guess the good news is that I am not IgA deficient and they found antibodies. So my money is not wasted. As you had predicted, Tex, one month of 9 mg Budesonide a day did not have a significant effect on the results (I don't know if the results are lower or not).
The bad news is that they found antibodies to all four: gluten, dairy, soy, and eggs! I expected gluten and dairy, but soy and eggs is a big surprise!
And 2 copies of a gene, which may or may not affect my children.
Fecal Anti-gliadin IgA 58 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 26 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 31 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
Interpretation of HLA-DQ Testing:
Although you do not possess the main HLA-DQB1 genes predisposing to celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity, in your case HLA-DQB1*0202 and HLA-DQB1*0202. While most individuals with celiac disease possess the HLA-DQ2*0201 subtype, the possibility of developing celiac disease with other DQ2 subtypes still exists. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.
Where do I go from here? Do I have to leave not just those foods away but also foods or medications where it says "processed on shared equipment with wheat, etc."? I am not sure if I should do a true elimination diet for the next few months (what if there are other food offenders?) or if I should just try to eat a very simple diet including only a few safe foods. But what are safe foods if there might be even other food offenders aside from those big four?
Lisa: you brought up some good points. I have never been a big meat eater, I prefer seafood on any day. A year ago exactly the little finger on my one hand was swollen in one joint, a few weeks later in another joint, same finger, extremely painful, the inflammation went away, but it did leave a little bump or nodule. I remember my grandma whose fingers were not deformed or crooked but they all had swollen joints/nodules. When I saw my PCP I had asked her about it and she said at the time that it could be the beginning of arthritis. I think she said rheumatoid arthritis. At the time, a year ago, I looked up anti-inflammatory diets and saw that they recommend a healthy diet (which I had), but basically no coffee and no meat, and more fish. I stopped drinking my 3 espressos each day Christmas last year (because of the severe pain in my finger), but I still drink green tea and black tea (all day long, that's my one thing). And I reduced my already low meat intake. Ever since then my finger has not been painful anymore, whether that's a coincidence or not, I don't know. Also, my oldest daughter recently declared she was now a vegetarian, but would still eat fish, but no more meat. So all in all, we have not had that much meat, maybe once every 2 weeks, but fish 1-3 times a week. I am not against eating meat daily if that will help me. I don't have an aversion or anything like that. It's just not my favorite food.
Surprising myself, I am not even sad or upset about leaving away all these foods even though I have always had a really high intake of gluten and dairy. My number one goal is to get better, to not have diarrhea, to not have pain in my ribs/abdomen/hips/groin, and not to lose more weight. If I can achieve that with a really strict diet and without medication, I'd be very, very grateful!
Regarding the medication: you asked if I could have Budesonide for a longer time. According to Tex' tapering plan that I am following, I will still be taking Budesonide for another 2 months. One capsule a day for the next two weeks, but then slowly going to one every second, third, fourth, fifth day. I could ask my gastroenterologist for another prescription. I don't know if he would give me one or not, he might be open to it. However, I am not sure if I should or not. I don't like taking medication for one. Second, I don't know how much it is doing for me if I have watery D (like I had yesterday), while on it. It seemed to work the first 2 or 3 weeks, but by week 4 I had again fatty stools (I was still eating gluten and dairy) and the diarrhea was back, even though I was still on 9 mg of Budesonide a day. Maybe it stopped working because of my vitamin D deficiency. Or maybe it's just not doing that much for me in general. I actually don't know if it worked for me the first 2 or 3 weeks either because I never had diarrhea every single day, it was every 2 or 3 weeks for a day or two. So maybe the first three weeks were just good ones anyway.
I am still reading on mast cells and histamine. I feel like I have been doing a crash course in all of this and have only learned the tip of the iceberg yet. I started taking Claritin this week, I still had some at home, but stopped it again after a day. I used to take it for seasonal allergies in spring for years, but last year and this year I found that I had a racing heart after taking it. So I tried to weather the allergies without taking anything. When I took Claritin this week, the fast heart rate came back. I will have to find and try a different antihistamine, but am not sure which one right now.
That's so interesting what you wrote about histamine and itchiness in your cheek. Does the histamine content increase in leftovers over time?
Thank you for the encouragement, Gabes, and the magnesium info.
It's so nice to read these posts and see that I am not alone in all of this and that it's not in my head either! It gives me so much hope to return to a healthy me again. Without all of you, I'd be very desperate right now, wondering what is wrong with me. Especially since my PCP and gastroenterologist think it's "just diarrhea". But the muscle and joint pains worry me just as much. They don't know what it is and they don't think it's connected to MC. It's good to read on here that other people experience those pains, too.
The bad news is that they found antibodies to all four: gluten, dairy, soy, and eggs! I expected gluten and dairy, but soy and eggs is a big surprise!
And 2 copies of a gene, which may or may not affect my children.
Fecal Anti-gliadin IgA 58 Units (Normal Range is less than 10 Units)
Fecal Anti-casein (cow’s milk) IgA 14 Units (Normal Range is less than 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 26 Units (Normal Range is less than 10 Units)
Fecal Anti-soy IgA 31 Units (Normal Range is less than 10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0202
HLA-DQB1 Molecular analysis, Allele 2 0202
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
Interpretation of HLA-DQ Testing:
Although you do not possess the main HLA-DQB1 genes predisposing to celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity, in your case HLA-DQB1*0202 and HLA-DQB1*0202. While most individuals with celiac disease possess the HLA-DQ2*0201 subtype, the possibility of developing celiac disease with other DQ2 subtypes still exists. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity may be more severe. This test was developed and its performance characteristics determined by the American Red Cross - Northeast Division. It has not been cleared or approved by the U.S. Food and Drug Administration.
Where do I go from here? Do I have to leave not just those foods away but also foods or medications where it says "processed on shared equipment with wheat, etc."? I am not sure if I should do a true elimination diet for the next few months (what if there are other food offenders?) or if I should just try to eat a very simple diet including only a few safe foods. But what are safe foods if there might be even other food offenders aside from those big four?
Lisa: you brought up some good points. I have never been a big meat eater, I prefer seafood on any day. A year ago exactly the little finger on my one hand was swollen in one joint, a few weeks later in another joint, same finger, extremely painful, the inflammation went away, but it did leave a little bump or nodule. I remember my grandma whose fingers were not deformed or crooked but they all had swollen joints/nodules. When I saw my PCP I had asked her about it and she said at the time that it could be the beginning of arthritis. I think she said rheumatoid arthritis. At the time, a year ago, I looked up anti-inflammatory diets and saw that they recommend a healthy diet (which I had), but basically no coffee and no meat, and more fish. I stopped drinking my 3 espressos each day Christmas last year (because of the severe pain in my finger), but I still drink green tea and black tea (all day long, that's my one thing). And I reduced my already low meat intake. Ever since then my finger has not been painful anymore, whether that's a coincidence or not, I don't know. Also, my oldest daughter recently declared she was now a vegetarian, but would still eat fish, but no more meat. So all in all, we have not had that much meat, maybe once every 2 weeks, but fish 1-3 times a week. I am not against eating meat daily if that will help me. I don't have an aversion or anything like that. It's just not my favorite food.
Surprising myself, I am not even sad or upset about leaving away all these foods even though I have always had a really high intake of gluten and dairy. My number one goal is to get better, to not have diarrhea, to not have pain in my ribs/abdomen/hips/groin, and not to lose more weight. If I can achieve that with a really strict diet and without medication, I'd be very, very grateful!
Regarding the medication: you asked if I could have Budesonide for a longer time. According to Tex' tapering plan that I am following, I will still be taking Budesonide for another 2 months. One capsule a day for the next two weeks, but then slowly going to one every second, third, fourth, fifth day. I could ask my gastroenterologist for another prescription. I don't know if he would give me one or not, he might be open to it. However, I am not sure if I should or not. I don't like taking medication for one. Second, I don't know how much it is doing for me if I have watery D (like I had yesterday), while on it. It seemed to work the first 2 or 3 weeks, but by week 4 I had again fatty stools (I was still eating gluten and dairy) and the diarrhea was back, even though I was still on 9 mg of Budesonide a day. Maybe it stopped working because of my vitamin D deficiency. Or maybe it's just not doing that much for me in general. I actually don't know if it worked for me the first 2 or 3 weeks either because I never had diarrhea every single day, it was every 2 or 3 weeks for a day or two. So maybe the first three weeks were just good ones anyway.
I am still reading on mast cells and histamine. I feel like I have been doing a crash course in all of this and have only learned the tip of the iceberg yet. I started taking Claritin this week, I still had some at home, but stopped it again after a day. I used to take it for seasonal allergies in spring for years, but last year and this year I found that I had a racing heart after taking it. So I tried to weather the allergies without taking anything. When I took Claritin this week, the fast heart rate came back. I will have to find and try a different antihistamine, but am not sure which one right now.
That's so interesting what you wrote about histamine and itchiness in your cheek. Does the histamine content increase in leftovers over time?
Thank you for the encouragement, Gabes, and the magnesium info.
It's so nice to read these posts and see that I am not alone in all of this and that it's not in my head either! It gives me so much hope to return to a healthy me again. Without all of you, I'd be very desperate right now, wondering what is wrong with me. Especially since my PCP and gastroenterologist think it's "just diarrhea". But the muscle and joint pains worry me just as much. They don't know what it is and they don't think it's connected to MC. It's good to read on here that other people experience those pains, too.
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Patricia,
Your results are similar to mine and many others of us here in that you tested positive to all of the big 4. Clearly you have to eliminate them. I found it useful to have the 11 antigenic foods tested too. I did this after I got my first set of results. They save the sample for a period of time. I tested positive to most of those foods too. I found that information very helpful as well, especially since I tested positive to beef, chicken and rice, very common foods and, at least for chicken and rice, foods that many if not most people do not have trouble with or at least believe to be safe. I have not found it necessary to avoid foods that are listed as being processed with the same equipment as gluten, soy dairy etc.
Lots of people have lots of ideas about what one should and should not eat. I have swollen finger joints too. Although they looked deformed they do not seem to be getting worse. I eat a very careful diet and have for the past 2.5 years, but it does include 2 cups of coffee a day and some meat everyday, along with fish. In fact meat has been the cornerstone of my diet. Protein is needed to support healing. The meats I eat are pork, lamb, and venison. The fish I eat are cod and sardines (fresh frozen not canned because of the high histamine content of canned fish) with occasional wild caught salmon. I eat lots of veggies now, but that's a recent addition. For a long time I ate very few vegetables and always well-cooked to avoid the fiber. Two years in and I can handle veggies again, even raw. I eat no grains, no legumes, no eggs, no dairy, no gluten no sweetners. The only fruit I eat are a few berries. I do eat a variety of nuts. At first I only ate nut butters. Now I can eat some whole. I also use coconut oil and olive oil.
This has been working for me, along with a few supplements (D3, b vitamins, Magnesium). When I joined this forum 2.5 years ago, I could barely leave the bathroom. Now I can leave the house without worrying about accidents. So I say, pick a few foods that seem safe and stick with them and don't worry about meat. People tend to name it as the culprit in almost every health problem, but I am very skeptical of the claim. I am careful about the quality of the meat I eat and I certainly don't eat any meat that has any additives.
Jean
Your results are similar to mine and many others of us here in that you tested positive to all of the big 4. Clearly you have to eliminate them. I found it useful to have the 11 antigenic foods tested too. I did this after I got my first set of results. They save the sample for a period of time. I tested positive to most of those foods too. I found that information very helpful as well, especially since I tested positive to beef, chicken and rice, very common foods and, at least for chicken and rice, foods that many if not most people do not have trouble with or at least believe to be safe. I have not found it necessary to avoid foods that are listed as being processed with the same equipment as gluten, soy dairy etc.
Lots of people have lots of ideas about what one should and should not eat. I have swollen finger joints too. Although they looked deformed they do not seem to be getting worse. I eat a very careful diet and have for the past 2.5 years, but it does include 2 cups of coffee a day and some meat everyday, along with fish. In fact meat has been the cornerstone of my diet. Protein is needed to support healing. The meats I eat are pork, lamb, and venison. The fish I eat are cod and sardines (fresh frozen not canned because of the high histamine content of canned fish) with occasional wild caught salmon. I eat lots of veggies now, but that's a recent addition. For a long time I ate very few vegetables and always well-cooked to avoid the fiber. Two years in and I can handle veggies again, even raw. I eat no grains, no legumes, no eggs, no dairy, no gluten no sweetners. The only fruit I eat are a few berries. I do eat a variety of nuts. At first I only ate nut butters. Now I can eat some whole. I also use coconut oil and olive oil.
This has been working for me, along with a few supplements (D3, b vitamins, Magnesium). When I joined this forum 2.5 years ago, I could barely leave the bathroom. Now I can leave the house without worrying about accidents. So I say, pick a few foods that seem safe and stick with them and don't worry about meat. People tend to name it as the culprit in almost every health problem, but I am very skeptical of the claim. I am careful about the quality of the meat I eat and I certainly don't eat any meat that has any additives.
Jean
Hi Patricia:
Yes, it's a lot to take in, and a big adjustment. I also had antibodies for the big 4-gluten, dairy, soy and eggs. As far as testing other foods, I'd start with just eliminating those, and higher fiber foods like raw veggies, fruit and legumes (which are also related to soy). Once you have done some healing, you may find that there are other foods that bother you, but eliminating those will hopefully help a lot at this point. The only fruit I had at that point in healing was banana. Bananas are also high histamine, however not as high when just ripe, versus more ripe, so I only eat them at that point, and freeze them when just ripe, to keep them that way. As foods ripen, including leftovers, they do get higher in histamine. Histamine is a cumulative effect-many foods have histamine, and you can't not eat all those foods, but you don't want to eat too many higher histamine foods together. You will figure out what works for you. For instance, if I'm having spinach, I won't have avocado at the same meal, as they are both higher histamine. Here is a list, and there are others online, but as they don't test histamine levels in food, the lists aren't always consistent:
http://www.histaminintoleranz.ch/downlo ... 8EN%29.pdf
I used to take one antihistamine in the morning, and a Benadryl at night. I no longer take the one at night. I take Claritin Reditabs-the regular version has lactose in it. If Claritin doesn't work for you, many take Allegra or Zyrtec. I hope one will work better for you, and not give you that reaction.
My own experience with Entocort, is that I got some relief in the first 30 days, but not that much. As many here said they were helped immediately, I was discouraged. I continued with it, and improved more in the second month, but am still not having Normans, just reduced D a few times in the morning, and no watery D. I may still have food issues that I haven't figured out. As far as weight goes, I was also dropping more than I wanted. Make sure you eat enough carbs-I ate a lot of sweet potatoes, and also add coconut oil to things, for more calories. Good you are eating fish, you might see how you do adding some more protein in. I stick mostly with meat (beef, chicken, turkey, pork-many have good success with lamb, I just don't like it), well cooked veggies, and carbs like sweet potatoes, or regular potatoes. I eat fish, 1 or 2x a week. Everyone has different sensitivities, so you have to find what works for you. This is a slow process, try to be patient, and enjoy the small improvements along the way, and keep in mind, you will likely have bumps in the road.
Lisa
Yes, it's a lot to take in, and a big adjustment. I also had antibodies for the big 4-gluten, dairy, soy and eggs. As far as testing other foods, I'd start with just eliminating those, and higher fiber foods like raw veggies, fruit and legumes (which are also related to soy). Once you have done some healing, you may find that there are other foods that bother you, but eliminating those will hopefully help a lot at this point. The only fruit I had at that point in healing was banana. Bananas are also high histamine, however not as high when just ripe, versus more ripe, so I only eat them at that point, and freeze them when just ripe, to keep them that way. As foods ripen, including leftovers, they do get higher in histamine. Histamine is a cumulative effect-many foods have histamine, and you can't not eat all those foods, but you don't want to eat too many higher histamine foods together. You will figure out what works for you. For instance, if I'm having spinach, I won't have avocado at the same meal, as they are both higher histamine. Here is a list, and there are others online, but as they don't test histamine levels in food, the lists aren't always consistent:
http://www.histaminintoleranz.ch/downlo ... 8EN%29.pdf
I used to take one antihistamine in the morning, and a Benadryl at night. I no longer take the one at night. I take Claritin Reditabs-the regular version has lactose in it. If Claritin doesn't work for you, many take Allegra or Zyrtec. I hope one will work better for you, and not give you that reaction.
My own experience with Entocort, is that I got some relief in the first 30 days, but not that much. As many here said they were helped immediately, I was discouraged. I continued with it, and improved more in the second month, but am still not having Normans, just reduced D a few times in the morning, and no watery D. I may still have food issues that I haven't figured out. As far as weight goes, I was also dropping more than I wanted. Make sure you eat enough carbs-I ate a lot of sweet potatoes, and also add coconut oil to things, for more calories. Good you are eating fish, you might see how you do adding some more protein in. I stick mostly with meat (beef, chicken, turkey, pork-many have good success with lamb, I just don't like it), well cooked veggies, and carbs like sweet potatoes, or regular potatoes. I eat fish, 1 or 2x a week. Everyone has different sensitivities, so you have to find what works for you. This is a slow process, try to be patient, and enjoy the small improvements along the way, and keep in mind, you will likely have bumps in the road.
Lisa