Hello -
I'm a newbie to this forum. I'm sorry it's taken me so long to find this amazing and informative site.
I was diagnosed with collagenous colitis as well as collagenous gastritis 19yrs ago. (I'm 39yrs old). I have tried most of the conventional treatments for CC/MC without success over the past 19yrs. Over the past 5 yrs (since I have had children), my condition has become progressively worse - with up to 10 BM on a bad day now. I used to have a good grasp on the type of foods I could eat and what I couldn't in order to keep my bowel functioning okay (1-3 x/day) but it seems my gut now reacts to most foods including those that I once considered the friendly foods.
I have read that a gluten free diet is now the first line of treatment for MC but I'm not sure that it will benefit me because over the years, I have been tested for coeliac disease as well as gluten sensitivity/intolerance more than 10 times through biopsies, blood tests and stool tests (the latter through Enterolab when I visited the US 11years ago). All tests have come back negative.
I'm just wondering if any person/s in this group has tested negative to gluten sensitivity, in particular with the Enterolab stool test (I've read it's the most accurate), yet still went on to trial a gluten free diet anyway? And if so, were there improvements in your condition.
Cheers, Elissa
Is a GF diet necessary if tested -ve for gluten sensitivity?
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Hi Elissa,
Welcome to our internet family. I'm sorry that you've suffered so long with this disease without any treatment benefits. Hopefully, we can provide the answers that your doctors have failed to provide for you for 19 years, so that you can get your life back.
The EnteroLab test uses ELISA test methods to test for IgA antibodies. 1 in 300 people in the general population have selective IgA deficiency. That means that they are not capable of producing normal amounts of immunoglobulin A. It also means that any IgA-based testing will show false negative results, including the blood tests for celiac disease. If your doctor failed to test your blood for possible IgA deficiency, then that may be why all your other gluten antibody-related test results have been negative. Do you know if you have a celiac gene? If you do, then I can virtually guarantee that eliminating gluten from your diet will be very beneficial for long-term health, for many reasons other than MC.
Yes, the EnteroLab test is by far the most sensitive and the most reliable test available for detecting food sensitivities. However, like all anti-gliadin antibody tests, it is extremely selective. It only tests for antibodies to the alpha gliadin peptide. Most people who are sensitive to gluten are sensitive to the alpha gliadin peptide. But there's no reason to believe that everyone falls into that category, and you might be an exception. So there's another possible reason why your EnteroLab test result may have been negative even though you might be sensitive to gluten. There are at least 300 other known peptides of wheat, barley, rye, and oats that can cause the production of antibodies for some people. Most of these are far less potent than the alpha gliadin peptide, but they can still cause many of us to react if we happen to be sensitive to any of them. Sensitivity to any of those would not be detected by the EnteroLab test (or any other known test)
There is one other possible reason why you have been unable to see any treatment benefits. You might have drug-induced MC. Were you taking (and are you continuing to take) any drugs that are known to trigger MC, such as NSAIDs, PPIs, SSRIs, SNRIs, bisphosphonates, beta blockers, or antibiotics? Unfortunately, even HRT, and in some cases oral or transdermal contraceptives can keep some women from achieving remission, despite treatments that should normally work.
Have you ever tried the GF diet for a trial long enough to give it a fair chance? I believe that if I had been reacting for as long as you have, without finding relief in any other treatment, I would certainly give it a trial. I would avoid all gluten, dairy, and soy (and probably eggs), for at least 6 months before giving up on it. Why so long? Because as long as you have been reacting, if you are actually sensitive to gluten then you will have accrued a heck of a lot of damage by now, and it will take a long time to heal (some of the damage will almost surely never heal).
If you want to touch all the bases, you could ask your doctor to check your blood for selective IgA deficiency first, because if you do indeed have selective IgA deficiency, then that pretty well confirms that you almost surely have gluten sensitivity that cannot be detected by any known standard test.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that you've suffered so long with this disease without any treatment benefits. Hopefully, we can provide the answers that your doctors have failed to provide for you for 19 years, so that you can get your life back.
The EnteroLab test uses ELISA test methods to test for IgA antibodies. 1 in 300 people in the general population have selective IgA deficiency. That means that they are not capable of producing normal amounts of immunoglobulin A. It also means that any IgA-based testing will show false negative results, including the blood tests for celiac disease. If your doctor failed to test your blood for possible IgA deficiency, then that may be why all your other gluten antibody-related test results have been negative. Do you know if you have a celiac gene? If you do, then I can virtually guarantee that eliminating gluten from your diet will be very beneficial for long-term health, for many reasons other than MC.
Yes, the EnteroLab test is by far the most sensitive and the most reliable test available for detecting food sensitivities. However, like all anti-gliadin antibody tests, it is extremely selective. It only tests for antibodies to the alpha gliadin peptide. Most people who are sensitive to gluten are sensitive to the alpha gliadin peptide. But there's no reason to believe that everyone falls into that category, and you might be an exception. So there's another possible reason why your EnteroLab test result may have been negative even though you might be sensitive to gluten. There are at least 300 other known peptides of wheat, barley, rye, and oats that can cause the production of antibodies for some people. Most of these are far less potent than the alpha gliadin peptide, but they can still cause many of us to react if we happen to be sensitive to any of them. Sensitivity to any of those would not be detected by the EnteroLab test (or any other known test)
There is one other possible reason why you have been unable to see any treatment benefits. You might have drug-induced MC. Were you taking (and are you continuing to take) any drugs that are known to trigger MC, such as NSAIDs, PPIs, SSRIs, SNRIs, bisphosphonates, beta blockers, or antibiotics? Unfortunately, even HRT, and in some cases oral or transdermal contraceptives can keep some women from achieving remission, despite treatments that should normally work.
Have you ever tried the GF diet for a trial long enough to give it a fair chance? I believe that if I had been reacting for as long as you have, without finding relief in any other treatment, I would certainly give it a trial. I would avoid all gluten, dairy, and soy (and probably eggs), for at least 6 months before giving up on it. Why so long? Because as long as you have been reacting, if you are actually sensitive to gluten then you will have accrued a heck of a lot of damage by now, and it will take a long time to heal (some of the damage will almost surely never heal).
If you want to touch all the bases, you could ask your doctor to check your blood for selective IgA deficiency first, because if you do indeed have selective IgA deficiency, then that pretty well confirms that you almost surely have gluten sensitivity that cannot be detected by any known standard test.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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.
Hi Tex,
Thank you so much for all that valuable information. It makes SO much sense to me. And it got me investigating into my own medical history. Over the past 10 days I have gone through all of my medical records that I have received and yes, I do have an IgA deficiency - tested 19years ago! So with that in mind, I feel that it is imperative that I get tested for the Coeliac gene as well as putting myself on the gluten free diet, as well as dairy and soy free, as you suggested.
I believe my CC was induced by NSAIDs and yes, I would have been taking them throughout any treatments I had for CC, hence why they didn't have any effect! I haven't taken NSAIDS now for 7yrs (since realising the connection of CC and NSAIDS) but haven't had any CC treatment since then as I have been pregnant or breastfeeding since.
Anyway, I just wanted to say thanks again to you and this wonderful forum, I feel I finally have answers and a plan of attack to get on top of this condition once and for all, for the first time in 19years!
Cheers, Elissa
Thank you so much for all that valuable information. It makes SO much sense to me. And it got me investigating into my own medical history. Over the past 10 days I have gone through all of my medical records that I have received and yes, I do have an IgA deficiency - tested 19years ago! So with that in mind, I feel that it is imperative that I get tested for the Coeliac gene as well as putting myself on the gluten free diet, as well as dairy and soy free, as you suggested.
I believe my CC was induced by NSAIDs and yes, I would have been taking them throughout any treatments I had for CC, hence why they didn't have any effect! I haven't taken NSAIDS now for 7yrs (since realising the connection of CC and NSAIDS) but haven't had any CC treatment since then as I have been pregnant or breastfeeding since.
Anyway, I just wanted to say thanks again to you and this wonderful forum, I feel I finally have answers and a plan of attack to get on top of this condition once and for all, for the first time in 19years!
Cheers, Elissa
Elissa,
Excellent detective work!
I hope that your treatment program goes smoothly from here on, and I'm confident that you will soon have your life back. It does take some time for the diet to show results, because the damage to the intestines caused by gluten tends to heal very slowly, but careful attention to the details of your diet, and patience and perseverance will pay off.
You're very welcome, and please keep us posted on your progress,
Tex
Excellent detective work!
I hope that your treatment program goes smoothly from here on, and I'm confident that you will soon have your life back. It does take some time for the diet to show results, because the damage to the intestines caused by gluten tends to heal very slowly, but careful attention to the details of your diet, and patience and perseverance will pay off.
You're very welcome, and please keep us posted on your progress,
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 was given a blood test by my doctor and I was not celiac (gluten sensitive) he said. I believed this posting board and the people on it more than my GI so I immediately cut out gluten. I did feel better right away. When I inadvertently consume gluten I get a run-down, fatigued feeling, a lingering headache, and the runs. The proof was in the pudding that despite my GI's opinion there was a dietary (GF) link.I'm just wondering if any person/s in this group has tested negative to gluten sensitivity, in particular with the Enterolab stool test (I've read it's the most accurate), yet still went on to trial a gluten free diet anyway? And if so, were there improvements in your condition.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)