Hello everyone, I’m Tanya and I’ve been lurking around your site for several months. I’ve recently been diagnosed with MC indeterminate type. The colonoscopy also showed scalloping in my small intestine-after 10 months of being totally gluten free. My blood tests are negative for Celiac, however I can feel my fingers again when I start IV’s and I feel waaay better so go figure. I also have Hashimotos, Vitiligo and Alopecia Universalis so have really hit the genetic autoimmune jackpot! I’m an ER nurse in Iraq I eat in a cafeteria which is a challenge.
I do have questions....do I just throw them out to you guys? Do I address some moderators for say-mast cell/histamine issues? How does this work?
Sure glad you all are here.
Tanya
New Member Hello 😁
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Tanya,
Welcome to the forum. The celiac blood tests have been shown by medical researchers to be very insensitive — the test misses most cases of celiac disease until the disease is fully developed. It even misses approximately 30 % of cases when celiac disease is fully-developed (Marsh 4, or complete flattening of the small intestinal villi). Virtually all of us are sensitive to gluten, but most of us have non-celiac gluten sensitivity, and the medical community doesn't even have an approved test to detect non-celiac gluten sensitivity.
But the gluten sensitivity usually leads to other food sensitivities, such as casein (dairy), soy, and for many people, eggs and other foods. MC opens the door to the development of other autoimmune (AI) diseases, so many members here also have multiple AI diseases. But successfully controlling our intestinal inflammation often attenuates or eliminates other AI symptoms.
Eating out can make it extremely difficult to impossible to comply with a restricted diet. If you can't get your symptoms under control after a reasonable length of time, you may have to start bringing your own food prepared at home from scratch. Recent published research shows that more than half of restaurant foods that are claimed to be gluten free are not. Cross-contamination is a huge problem and it's widespread.
Just post your questions, many members will probably know the answers because they have had to deal with the same problems themselves. I may be able to help you with mast cell/histamine issues because I've been dealing with that problem myself for a few years, so I have some personal experience and I've done a lot of research on the problem.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. The celiac blood tests have been shown by medical researchers to be very insensitive — the test misses most cases of celiac disease until the disease is fully developed. It even misses approximately 30 % of cases when celiac disease is fully-developed (Marsh 4, or complete flattening of the small intestinal villi). Virtually all of us are sensitive to gluten, but most of us have non-celiac gluten sensitivity, and the medical community doesn't even have an approved test to detect non-celiac gluten sensitivity.
But the gluten sensitivity usually leads to other food sensitivities, such as casein (dairy), soy, and for many people, eggs and other foods. MC opens the door to the development of other autoimmune (AI) diseases, so many members here also have multiple AI diseases. But successfully controlling our intestinal inflammation often attenuates or eliminates other AI symptoms.
Eating out can make it extremely difficult to impossible to comply with a restricted diet. If you can't get your symptoms under control after a reasonable length of time, you may have to start bringing your own food prepared at home from scratch. Recent published research shows that more than half of restaurant foods that are claimed to be gluten free are not. Cross-contamination is a huge problem and it's widespread.
Just post your questions, many members will probably know the answers because they have had to deal with the same problems themselves. I may be able to help you with mast cell/histamine issues because I've been dealing with that problem myself for a few years, so I have some personal experience and I've done a lot of research on the problem.
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.
I’ll just jump in and say 
too to you, Tanya. You have definitely come to the right place. The advice I received here is the reason I am in remission and working and have a life. I saw that you are an ER nurse in Iraq and my first thought was that you are doing remarkably well for having such a high stress career. Going gluten free is a vital first step. Feel free to ask anything.
Best wishes,
Carol
too to you, Tanya. You have definitely come to the right place. The advice I received here is the reason I am in remission and working and have a life. I saw that you are an ER nurse in Iraq and my first thought was that you are doing remarkably well for having such a high stress career. Going gluten free is a vital first step. Feel free to ask anything. Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thank you for your kind words. As far as working in Iraq? My husband is an ER physician and he is here as well. My philosophy is that I can shi* anywhere, so I might as well have adventures while I can. I have a list of the places with most amazing views while I sat, places in China with a hole in the ground and no TP, boats in the Galapagos and a hotel in Dubai with two TWO! bidets. (every bottoms best friend). First place for best view? Top of a pass hiking in Joshua Tree National Park. I have a shi*-ton of autoimmune conditions, but they don’t have me nor are they going to!!!
My energy has improved in the last year I’ve been gluten free so that’s a BIG help. I was sleeping a lot on my days off before and had lost sensation in my fingers. Oddly enough it was a co-worker who had celiac disease that said, “those labs are almost always wrong. You for SURE have it.” I’ve had two negative tests now and wouldn’t eat gluten again to save my life. (Ok maybe an exaggeration).
Recently I had the good fortune to spend several weeks in Italy. Up to 20% of Italians have celiac disease and they take it very seriously. Restaurants display certifications for the national board in the windows and all meals are cooked in a separate part of the kitchen with separate pots, pans and utensils. I had delicious bread, wonderful pizza and pasta that was out of this world-small amounts mind you, but it was delicious!
At this point I’m on about week 6 of Budesonide 9mg granuals. The GI I saw also gave me fiber-which I ditched after several weeks. Ugh! Not helping.
What is the general advice about weaning down on the Budesonide? I won’t have access to any till March, tho I do have a good supply of Methypredneslone. My thought was to start skipping every 3ed day, and try and wean down. Should I then switch to taking 10mg of steroids every other day till March? Thoughts?
My energy has improved in the last year I’ve been gluten free so that’s a BIG help. I was sleeping a lot on my days off before and had lost sensation in my fingers. Oddly enough it was a co-worker who had celiac disease that said, “those labs are almost always wrong. You for SURE have it.” I’ve had two negative tests now and wouldn’t eat gluten again to save my life. (Ok maybe an exaggeration).
Recently I had the good fortune to spend several weeks in Italy. Up to 20% of Italians have celiac disease and they take it very seriously. Restaurants display certifications for the national board in the windows and all meals are cooked in a separate part of the kitchen with separate pots, pans and utensils. I had delicious bread, wonderful pizza and pasta that was out of this world-small amounts mind you, but it was delicious!
At this point I’m on about week 6 of Budesonide 9mg granuals. The GI I saw also gave me fiber-which I ditched after several weeks. Ugh! Not helping.
What is the general advice about weaning down on the Budesonide? I won’t have access to any till March, tho I do have a good supply of Methypredneslone. My thought was to start skipping every 3ed day, and try and wean down. Should I then switch to taking 10mg of steroids every other day till March? Thoughts?
Hi Tanya,
Regarding preventing a rebound effect (from mast cells) when a budesonide treatment is ended, most members here find that the slower the dose is tapered, the better the chances of success (preventing a relapse). Most members here drop the dose from 3 to 2 and then 1 capsule and spend about 3 or 4 weeks on each of those stages After reaching the 3 mg (1 capsule) per day level, many members stay at each level for 2 weeks (or more) before dropping to the next level (that is, 1 per day, 1 every other day, 1 every third day, 1 every fourth day, etc.). Some stop after the 1 every third or fourth day level, and some go on to 1 every fifth or sixth day. But everyone is different, so you have to listen to your body. At any stage, if you become constipated, it's time to drop to the next level.
I consider prednisolone to be a much riskier drug than budesonide because it has so many adverse effects on the body because of it's systemic characteristics. Research shows that less than about 18 % of budesonide ever gets outside the colon to cause systemic effects.
Tex
Regarding preventing a rebound effect (from mast cells) when a budesonide treatment is ended, most members here find that the slower the dose is tapered, the better the chances of success (preventing a relapse). Most members here drop the dose from 3 to 2 and then 1 capsule and spend about 3 or 4 weeks on each of those stages After reaching the 3 mg (1 capsule) per day level, many members stay at each level for 2 weeks (or more) before dropping to the next level (that is, 1 per day, 1 every other day, 1 every third day, 1 every fourth day, etc.). Some stop after the 1 every third or fourth day level, and some go on to 1 every fifth or sixth day. But everyone is different, so you have to listen to your body. At any stage, if you become constipated, it's time to drop to the next level.
I consider prednisolone to be a much riskier drug than budesonide because it has so many adverse effects on the body because of it's systemic characteristics. Research shows that less than about 18 % of budesonide ever gets outside the colon to cause systemic effects.
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.
Constipated? Ahem...ha.. hahahahahaha
Seriously? If only
. OK. So given my limitations-I live in Iraq and won't have access to Budesonide till March; And I'm not on capsules but sachets-of which I have two more months supply. What would you suggest? I would ask my GI but along with the Budesonide he gave me a generous dollop of fiber...with predicable results. I looked like a 61year old pregnant lady. So I'm thinking MC isn't his specialty.
I've been on steroids for very short bursts in the past, but would much prefer to manage my sachets so I don't run out. Honestly, I really don't care if I have to eat rice and bananas and zucchini forever and take Budesonide if whatever I DO eat doesn't hurt.
For supplements I'm taking D3 5k units, NAG, hi dose fish oil, L-Glutamine, Boswellia Extract, and mag chloride and calcium. How does that sound?
Seriously? If only
. OK. So given my limitations-I live in Iraq and won't have access to Budesonide till March; And I'm not on capsules but sachets-of which I have two more months supply. What would you suggest? I would ask my GI but along with the Budesonide he gave me a generous dollop of fiber...with predicable results. I looked like a 61year old pregnant lady. So I'm thinking MC isn't his specialty.I've been on steroids for very short bursts in the past, but would much prefer to manage my sachets so I don't run out. Honestly, I really don't care if I have to eat rice and bananas and zucchini forever and take Budesonide if whatever I DO eat doesn't hurt.
For supplements I'm taking D3 5k units, NAG, hi dose fish oil, L-Glutamine, Boswellia Extract, and mag chloride and calcium. How does that sound?
Hi Tanya,
I wanted to say a quick hello. My hands and feet also went numb for about a year -- for me that was one of the scariest symptoms and a sign that something wasn't right with my body. I can't imagine having to start IVs like that!
Thankfully, the numbness has now gone away. Diet has been a big part of it but I've also found that the right daily dose of magnesium glycinate helps the problem. If I miss taking magnesium for a few days then the tingling can come back.
Wishing you well!
Lisa
I wanted to say a quick hello. My hands and feet also went numb for about a year -- for me that was one of the scariest symptoms and a sign that something wasn't right with my body. I can't imagine having to start IVs like that!
Thankfully, the numbness has now gone away. Diet has been a big part of it but I've also found that the right daily dose of magnesium glycinate helps the problem. If I miss taking magnesium for a few days then the tingling can come back.
Wishing you well!
Lisa
If you could keep your diet pure (with no cross-contamination and no cheating. and no bad luck), you shouldn't need budesonide by March.
As for your supplements, I would switch to magnesium glucinate — it's less likely to cause diarrhea. And I would drop calcium. If you have read any of my posts on the subject you should know that almost no one needs to take supplemental calcium. People who have osteoporosis either have untreated gluten sensitivity or a vitamin D or magnesium deficiency — never a calcium deficiency. Vitamin D allows us to absorb the calcium already in our diet into our bloodstream and magnesium activates insulin so that it can carry the calcium from our blood to our tissues where it is needed.
When calcium is supplemented, if there is plenty of vitamin D to absorb it, then the calcium will cause the body to waste magnesium to get the excess calcium out of our bloodstream and purge it (because too much calcium in the blood can cause cardiac events. A calcium supplement combined with a magnesium deficiency can result in a fatal heart attack in some cases. Virtually everyone (including those on a limited diet) has enough calcium in their diet — they just need enough vitamin D to absorb the calcium and enough magnesium to get it transported to our bones and other tissues.
Tex
As for your supplements, I would switch to magnesium glucinate — it's less likely to cause diarrhea. And I would drop calcium. If you have read any of my posts on the subject you should know that almost no one needs to take supplemental calcium. People who have osteoporosis either have untreated gluten sensitivity or a vitamin D or magnesium deficiency — never a calcium deficiency. Vitamin D allows us to absorb the calcium already in our diet into our bloodstream and magnesium activates insulin so that it can carry the calcium from our blood to our tissues where it is needed.
When calcium is supplemented, if there is plenty of vitamin D to absorb it, then the calcium will cause the body to waste magnesium to get the excess calcium out of our bloodstream and purge it (because too much calcium in the blood can cause cardiac events. A calcium supplement combined with a magnesium deficiency can result in a fatal heart attack in some cases. Virtually everyone (including those on a limited diet) has enough calcium in their diet — they just need enough vitamin D to absorb the calcium and enough magnesium to get it transported to our bones and other tissues.
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.
I eat almost no dairy, aside for a bit in my coffee or tea. I’m a petite white woman is my mother and was my grandmother. Osteoporosis is in my genes. I was raised a vegetarian and have some understanding of health and diet. I don’t have the ability to buy the Magnesium you recommended. Again, no mail and leaving base isn’t allowed. Due to my concerns about diarrhea am only taking 64mg of the Magnesium Chloride-and certainly opted against the Citrate. I’ve given too much of it for constipation! I’m taking 1200mg of Calcium qhs. Take less?
That bit of dairy in your coffee or tea may be the reason why you are still reacting. With this disease, we can't tolerate even traces of the foods that cause us to react. It's a cruel disease. Diet restrictions have to be 100 % — nothing less will work.
Osteoporosis is not in your genes — gluten sensitivity is in your genes. Gluten sensitivity is the primary cause of osteoporosis. If you successfully treat gluten sensitivity, you will automatically successfully treat osteoporosis. But you have to have an adequate level of magnesium, or your body cannot transport the calcium from your blood to your bones.
The residents of the countries with the highest dairy intake have the worst osteoporosis problem. Haven't you ever wondered why osteoporosis patients continue to worsen, despite the fact that they're taking massive amounts of calcium supplements? That's because most doctors don't know how to properly treat osteoporosis. How did your mother and grandmother fare in the long run? Did taking calcium supplements resolve their osteoporosis problems? Please give this some serious thought.
Dietary calcium is good for our health — calcium supplements are not. I assume you've seen all this stuff:
Calcium Supplements May Damage the Heart
I wish I could send you some magnesium glycinate, but I don't see a way to do that if you can't receive any mail.
Tex
Osteoporosis is not in your genes — gluten sensitivity is in your genes. Gluten sensitivity is the primary cause of osteoporosis. If you successfully treat gluten sensitivity, you will automatically successfully treat osteoporosis. But you have to have an adequate level of magnesium, or your body cannot transport the calcium from your blood to your bones.
The residents of the countries with the highest dairy intake have the worst osteoporosis problem. Haven't you ever wondered why osteoporosis patients continue to worsen, despite the fact that they're taking massive amounts of calcium supplements? That's because most doctors don't know how to properly treat osteoporosis. How did your mother and grandmother fare in the long run? Did taking calcium supplements resolve their osteoporosis problems? Please give this some serious thought.
Dietary calcium is good for our health — calcium supplements are not. I assume you've seen all this stuff:
Calcium Supplements May Damage the Heart
I wish I could send you some magnesium glycinate, but I don't see a way to do that if you can't receive any mail.
Tex
Hi Tanya,
Just a note to say hello. I never would be doing as well as I am today without this board. I took Budensonide when first diagnosed (used it for about 8 months with slow tapers the whole time). The best thing I learned though was the importance of controlling my symptoms through my diet. I used Enterolab and tested for sensitivity to gluten, casein, soy and egg. After months of sticking to a very strict diet (safe protein, white rice, overcooked carrots - 3 meals/day), I have been able to expand my diet and can now eat some fruit, more vegetables, and items with eggs that are baked in them (gluten free breads/muffins). I feel terrific. My hands get tingly sometimes but the numbness has subsided. I have energy and the brain fog is gone. I noticed that you mentioned that you still use a small amount of dairy. If you have access to something like almond or coconut milk, you may want to try substituting that for the dairy you are using in your coffee/tea. I think that even small amounts of dairy can throw things off if you have problems with casein or lactose.
Good luck!!!
Pam
Just a note to say hello. I never would be doing as well as I am today without this board. I took Budensonide when first diagnosed (used it for about 8 months with slow tapers the whole time). The best thing I learned though was the importance of controlling my symptoms through my diet. I used Enterolab and tested for sensitivity to gluten, casein, soy and egg. After months of sticking to a very strict diet (safe protein, white rice, overcooked carrots - 3 meals/day), I have been able to expand my diet and can now eat some fruit, more vegetables, and items with eggs that are baked in them (gluten free breads/muffins). I feel terrific. My hands get tingly sometimes but the numbness has subsided. I have energy and the brain fog is gone. I noticed that you mentioned that you still use a small amount of dairy. If you have access to something like almond or coconut milk, you may want to try substituting that for the dairy you are using in your coffee/tea. I think that even small amounts of dairy can throw things off if you have problems with casein or lactose.
Good luck!!!
Pam
Quick question. I may have someone that can mule in the correct type of magnesium. Tex, how many mg per day? 400? 600?
Also to give you an idea about the cross contamination....the DFAC cooks about 9k meals a day. Yes that number is correct. The lead chefs are terrific and very helpful. But going thru line? Conversations are usually..."does this have flour in it? On no ma'am!! Very spicy".
Also to give you an idea about the cross contamination....the DFAC cooks about 9k meals a day. Yes that number is correct. The lead chefs are terrific and very helpful. But going thru line? Conversations are usually..."does this have flour in it? On no ma'am!! Very spicy
".Sorry for the late reply — I went to bed early last night and had a project I had to finish this morning, so I'm just now getting to the discussion forum. I take 300 mg per day, 1 tablet (100 mg) with each meal, but if you are still recovering and concerned about it causing diarrhea, it might be a good idea to start with 2 tablets per day, to see how that works. You can increase it if that works OK, but I would limit it to 300–400 mg per day, especially while you are still recovering, so as not to tempt fate.
I hear you about serving lines. It's a minefield for MC patients, and decisions have to be made quickly. I don't envy you in that situation.
Tex
I hear you about serving lines. It's a minefield for MC patients, and decisions have to be made quickly. I don't envy you in that situation.
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.