Either going GF or the Asacol has stopped the D, so as long as I am GF and eating a lot of other foods I won't really know what foods are irritants until I am weaned off the Asacol? I can eat popcorn and it doesn't bother me. All though I can eat something and I can feel gurgling, is that a sign not to eat it?
Barb
Thanks for being patient with all the questions.
Newly DX - much needed advice
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Barb,
That gurgling is a sign that it's giving you at least a little trouble for now. I had gurgling as an only symptom a few months back - no followup problems. Now, if I have significant gurgling, I am pretty suspicious about any new or unusual food I have eaten. For me also, the gurgling comes on much sooner than the D, which is almost always the next day.
That gurgling is a sign that it's giving you at least a little trouble for now. I had gurgling as an only symptom a few months back - no followup problems. Now, if I have significant gurgling, I am pretty suspicious about any new or unusual food I have eaten. For me also, the gurgling comes on much sooner than the D, which is almost always the next day.
What type of testing have you had for your food allergies/intolerances?
I've read about IgA test, what is it?
I am seeing a Dr. tomorrow about some blood work for food allergies and I want to see if there is any other testing I can ask him to do, and suggestions?
Thank you,
Barb
I've read about IgA test, what is it?
I am seeing a Dr. tomorrow about some blood work for food allergies and I want to see if there is any other testing I can ask him to do, and suggestions?
Thank you,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
I just took myself off Asacol, I've been sick for 4 days thinking it was a bug but when it didn't get better I figured it was probably Asacol. I had a bad stiff neck, sore ache back and chest muscle, chills and fever. It got worse at night and tylenol didn't touch it, only ibuprofen would work and your not to take it with that med. And of course the D came right back as soon as I quit. I have been GF, but apparently not long enough :( I am not positive it is the Asacol, but I amgoing to see if it is the problem.
I got the results back from my blood work and I am slightly allergic to celery, pecans, lobster, lettuce and highly allergic to buckwheat.
I was looking at other choices of meds, but everything else, steroid, immunomodulators and biologic therapy look to be a lot stronger (as in more than what I need) than mesalamine. If I can't tolerate mesalamine (Asacol) I am assuming I won't be able to take any other in that family :(
Help! What else can I investigate before I call my dr. I was nice not having to worry about having a bathroom near.
I'd appreciate any suggestions.
Thanks,
Barb
I got the results back from my blood work and I am slightly allergic to celery, pecans, lobster, lettuce and highly allergic to buckwheat.
I was looking at other choices of meds, but everything else, steroid, immunomodulators and biologic therapy look to be a lot stronger (as in more than what I need) than mesalamine. If I can't tolerate mesalamine (Asacol) I am assuming I won't be able to take any other in that family :(
Help! What else can I investigate before I call my dr. I was nice not having to worry about having a bathroom near.
I'd appreciate any suggestions.
Thanks,
Barb
Hi Barb,
I'm sorry I missed your previous post. Unfortunately, the blood tests are worthless for the type of food-sensitivities that we have. Those tests will only reliably detect IgE-type reactions, (classic allergy reactions), and the type of food-sensitivity reactions that we have, take place in the gut, (not in the blood), so they are only reliably detected by testing for IgA antibodies in the gut or stool.
For example, the classic blood tests will only detect fully-developed celiac disease - they will not detect earlier stages of the disease. That's why it usually takes so many years to get a diagnosis of celiac disease. The stool tests will detect IgA antibodies to gluten at least several years before the antigliadin antibodies in the blood can build up to a level where they can be detected by the classic blood tests.
Quite a few other members here have reacted negatively to Asacol. Many of us react to the lactose in it, (which is not in the other brands of mesalamine), but if you are not avoiding dairy in your diet, then it would be almost impossible for the slight amount of lactose in the Asacol to have made a difference in your response to dairy. Mesalamine is related to the salicylates, so it's possible for it to cause the same prostaglandin-mediated inflammatory reaction that NSAIDs can cause for anyone with MC. IOW, yes, mesalamine can make MC symptoms worse, for anyone who is sensitive to NSAIDs. Doctors who prescribe Asacol, (or Asacol HD), don't understand MC very well, because the other brands of mesalamine are much safer choices, (since they don't contain lactose). Of course, it's also possible that you did have a virus.
Most members here who choose to take a med to speed up their remission, use Entocort. Only about 15% of it is absorbed into the bloodstream, so it has only a fraction of the side effect risks of the other corticosteroids, and weaning off it is not a problem, the way it is with prednisone, for example. It's the most effective, yet relatively safe medication available for treating this disease.
Most of us find it necessary to avoid not only gluten, but also all dairy products, and about half of us have to avoid soy, if we are to stop our symptoms. Some of us have additional food-sensitivities. Dairy is pretty much guaranteed to be a problem, because as soon as our intestines become inflamed, the small intestine will stop producing sufficient lactase enzyme to digest lactose, and as a result, everyone who has enteritis, will automatically be lactose intolerant, until the inflammation clears up. In addition to that, probably 80 to 85% of us are sensitive to the primary protein in all dairy products, (casein), and so it is almost as big a problem as gluten.
I hope that you can get your treatment back on track, promptly.
Tex
I'm sorry I missed your previous post. Unfortunately, the blood tests are worthless for the type of food-sensitivities that we have. Those tests will only reliably detect IgE-type reactions, (classic allergy reactions), and the type of food-sensitivity reactions that we have, take place in the gut, (not in the blood), so they are only reliably detected by testing for IgA antibodies in the gut or stool.
For example, the classic blood tests will only detect fully-developed celiac disease - they will not detect earlier stages of the disease. That's why it usually takes so many years to get a diagnosis of celiac disease. The stool tests will detect IgA antibodies to gluten at least several years before the antigliadin antibodies in the blood can build up to a level where they can be detected by the classic blood tests.
Quite a few other members here have reacted negatively to Asacol. Many of us react to the lactose in it, (which is not in the other brands of mesalamine), but if you are not avoiding dairy in your diet, then it would be almost impossible for the slight amount of lactose in the Asacol to have made a difference in your response to dairy. Mesalamine is related to the salicylates, so it's possible for it to cause the same prostaglandin-mediated inflammatory reaction that NSAIDs can cause for anyone with MC. IOW, yes, mesalamine can make MC symptoms worse, for anyone who is sensitive to NSAIDs. Doctors who prescribe Asacol, (or Asacol HD), don't understand MC very well, because the other brands of mesalamine are much safer choices, (since they don't contain lactose). Of course, it's also possible that you did have a virus.
Most members here who choose to take a med to speed up their remission, use Entocort. Only about 15% of it is absorbed into the bloodstream, so it has only a fraction of the side effect risks of the other corticosteroids, and weaning off it is not a problem, the way it is with prednisone, for example. It's the most effective, yet relatively safe medication available for treating this disease.
Most of us find it necessary to avoid not only gluten, but also all dairy products, and about half of us have to avoid soy, if we are to stop our symptoms. Some of us have additional food-sensitivities. Dairy is pretty much guaranteed to be a problem, because as soon as our intestines become inflamed, the small intestine will stop producing sufficient lactase enzyme to digest lactose, and as a result, everyone who has enteritis, will automatically be lactose intolerant, until the inflammation clears up. In addition to that, probably 80 to 85% of us are sensitive to the primary protein in all dairy products, (casein), and so it is almost as big a problem as gluten.
I hope that you can get your treatment back on track, promptly.
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.
Barb,
I can't remember whether you've tried any of the OTCs - I hesitate to recommend Pepto Bismol, because not everyone can tolerate it in a dose high enough to help. But it really made a huge difference for me. It's something you could attempt while waiting to meet your doctor.
I took Asacol many years ago, and though I had no idea about the diet connection, I did find that I was suddenly and spectacularly lactose intolerant - a spoonful of ice cream sent me sprinting for the bathroom. That's when I looked at the fine print and saw lactose in the ingredients... As Tex says, I don't think that can account for your whole set of symptoms, but it might be worth removing all other dairy at this time, just to speed up your healing. Down the road, you may be lucky enough to be able to add it back in, but for now, I'm sure your biggest priority is feeling better.
I used the Pepto that comes in capsules (I started with chewables, but found them icky). I started with 8 capsules/day, and though I had seen the recommendation to take that dosage for 8 weeks, I was uncomfortable with that idea, so started reducing the dose after only a week or so. It had a very positive effect for me, and I was lucky not to have the side effects, which can be concerning.
I hope whatever route you take that you feel better quickly,
Sara
I can't remember whether you've tried any of the OTCs - I hesitate to recommend Pepto Bismol, because not everyone can tolerate it in a dose high enough to help. But it really made a huge difference for me. It's something you could attempt while waiting to meet your doctor.
I took Asacol many years ago, and though I had no idea about the diet connection, I did find that I was suddenly and spectacularly lactose intolerant - a spoonful of ice cream sent me sprinting for the bathroom. That's when I looked at the fine print and saw lactose in the ingredients... As Tex says, I don't think that can account for your whole set of symptoms, but it might be worth removing all other dairy at this time, just to speed up your healing. Down the road, you may be lucky enough to be able to add it back in, but for now, I'm sure your biggest priority is feeling better.
I used the Pepto that comes in capsules (I started with chewables, but found them icky). I started with 8 capsules/day, and though I had seen the recommendation to take that dosage for 8 weeks, I was uncomfortable with that idea, so started reducing the dose after only a week or so. It had a very positive effect for me, and I was lucky not to have the side effects, which can be concerning.
I hope whatever route you take that you feel better quickly,
Sara
Sara, Tex, thank you for your replies, but how can I tell if I am sensitive to dairy? (especially now that I am off asacol) or does it just go hand in hand with gluten? I wasn't eating dairy, but when I got the blood tests back I started again, not a lot, no milk mainly butter and cheese.
Tex, I have a dumb question, what does IOW mean?
Thanks,
Barb
Tex, I have a dumb question, what does IOW mean?
Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis
Well, one way is to cut it out of your diet for a couple of weeks, to see it that will bring remission. If it does, that's pretty strong evidence, and you can wait about a week, and try some dairy again, and a reaction response to that "challenge" would verify that you are indeed sensitive to it.Barb wrote:but how can I tell if I am sensitive to dairy?
If avoiding it doesn't bring remission, though, then you can't conclude anything, one way or the other. In that event, the only way to tell for sure would be by means of a casein test from Enterolab.
IOW means "in other words".
Here's a list of abbreviations and acronyms commonly used on this site:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=845
Tex
P. S. There are no "dumb" questions on this site.
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.
FWIW (for what it's worth), I and a few others here have had pretty miserable experiences with Pepto Bismol. Most people can tolerate it, but you should know that some people react to it. However, if you can tolerate it, it can be very helpful.
Gloria
Gloria
You never know what you can do until you have to do it.
Lesley,
Black stool is a benign consequence of taking Pepto... I think that's why the put so much of that awful pink in the mix, to hide its coal-black nature. It's the other side effects that are more concerning.
(It's a little scary that your doc told you to stop it because of that - it's listed in the package inserts as no big deal, along with black tongue... still, many people do not tolerate it well, as Gloria mentioned - so I'm not trying to push you back in that direction!)
Black stool is a benign consequence of taking Pepto... I think that's why the put so much of that awful pink in the mix, to hide its coal-black nature. It's the other side effects that are more concerning.
(It's a little scary that your doc told you to stop it because of that - it's listed in the package inserts as no big deal, along with black tongue... still, many people do not tolerate it well, as Gloria mentioned - so I'm not trying to push you back in that direction!)
My doc knows enough to have done the biopsies for MC, but has no idea about diet. In fact, in spite of the articles to which Tex directed me, insisted that there is no evidence that diet affects MC.
I did react to the capsules. I had an allergic attack. My lip an eyes swelled enormously. But that didn't happen with the liquid.
How much pepto would I take as treatment? And what are the other side effects? I would rather take the Pepto than steroids any day.
All the doc in my health plan think the same way. All trained to think the same way.
I did react to the capsules. I had an allergic attack. My lip an eyes swelled enormously. But that didn't happen with the liquid.
How much pepto would I take as treatment? And what are the other side effects? I would rather take the Pepto than steroids any day.
All the doc in my health plan think the same way. All trained to think the same way.
WOW, that's good thinking on your part - it must some ingredient in the capsules. At one point my husband brought home a generic brand, but there were differences in the inactive ingredients and I was not in a risk-taking mood.
I believe the dose for the liquid is the same - and you might do a little label investigation, to see if you can figure out what was in those capsules, but not in the liquid, so you can put it on your "red flag" list. YIKES! to allergic reactions.
I know what you mean, about all doctors being trained to think the same. It's about time we stopped calling that "thinking" in my not-so-humble opinion! My husband went to a new doctor yesterday (it only took 1.5 years of monthly nagging, followed by several weeks of daily e-reminders in his Google calendar!). He has classic white-coat sky-rocketing blood pressure. His doctor didn't bat an eye - he said, I can tell you don't have true hypertension, because your EKG is totally normal - and that level of high blood pressure would have a noticeable effect on EKG. I am thinking of switching, just based on the quality of this first conversation. (I'm going to wait to see how their second talk goes, though.)
Sara
I believe the dose for the liquid is the same - and you might do a little label investigation, to see if you can figure out what was in those capsules, but not in the liquid, so you can put it on your "red flag" list. YIKES! to allergic reactions.
I know what you mean, about all doctors being trained to think the same. It's about time we stopped calling that "thinking" in my not-so-humble opinion! My husband went to a new doctor yesterday (it only took 1.5 years of monthly nagging, followed by several weeks of daily e-reminders in his Google calendar!). He has classic white-coat sky-rocketing blood pressure. His doctor didn't bat an eye - he said, I can tell you don't have true hypertension, because your EKG is totally normal - and that level of high blood pressure would have a noticeable effect on EKG. I am thinking of switching, just based on the quality of this first conversation. (I'm going to wait to see how their second talk goes, though.)
Sara
In my previous post about asacol and going off of it because of a bug (I needed to take ibprofen to get relief), I started back on it after I felt better; but now that is has been 5 days all the symptoms came back, I feel like I am being poisoned by it, achey, headache, stiffness, tired, and chills.
Now that I am back to square one what do you thing the chances are I'll be intollerant to the other mesalamine? Dr. gave me a new rx for aprisol, but I haven't filled it yet, I think I need to clear out my symptoms from asacol and fell better first. Has anyone used more than one mesalamine because of the side effects?
Thanks,
Barb
Now that I am back to square one what do you thing the chances are I'll be intollerant to the other mesalamine? Dr. gave me a new rx for aprisol, but I haven't filled it yet, I think I need to clear out my symptoms from asacol and fell better first. Has anyone used more than one mesalamine because of the side effects?
Thanks,
Barb
DX with MS, Hashimothyroiditis, Hypothyroid, Raynauds, Lymphocytic Colitis