Hi, has anyone else been diagnosed with celiac disease? I was diagnosed with celiac about 11 years ago (and have since adhered to a strict gluten free diet) and was just diagnosed with lymphocytic colitis. Has anyone found the healing process/treatment different for those with celiac?
thanks!
Celiac disease
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
Hello Miriam, Welcome. Many on the board have celiac disease and/or gluten sensitivity. Do you know what triggered your LC? My celiac genes and CC was triggered by a bad reaction to an anti-biotic. Most of us are gluten free, soy free, dairy free, sometimes egg free. Many are also sensitive to a vast number of other food products.
Microscopic colitis, including lymphocytic and collagenous, doesn't have a simple fix. Our esteemed moderator, Tex, has written a thorough and scholarly book that will give you all the information you need to understand MC. This board got me on the road to recovery when my doctor didn't understand the connection between MC and food. I'm sure Tex and others will chime in and answer any questions you have. You can read posts, primarily on the main message board, search the archives, check out polls and Enterolab results, etc.
Feel free to ask anything. We have heard it all and nothing much shocks or offends anyone. We have all been through the same misery and sincerely empathize with you.
Sheila W
Microscopic colitis, including lymphocytic and collagenous, doesn't have a simple fix. Our esteemed moderator, Tex, has written a thorough and scholarly book that will give you all the information you need to understand MC. This board got me on the road to recovery when my doctor didn't understand the connection between MC and food. I'm sure Tex and others will chime in and answer any questions you have. You can read posts, primarily on the main message board, search the archives, check out polls and Enterolab results, etc.
Feel free to ask anything. We have heard it all and nothing much shocks or offends anyone. We have all been through the same misery and sincerely empathize with you.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Hi Miriam,
I did not get a biopsy to dx celiac because I was already GF, but all my docs tell me to assume I have it. I have the DQ2 gene and very severe gluten intolerance plus other autoimmune issues. When discussing my LC with the famous celiac doc Dr. Fasano, he said "we used to think celiac was confined to the small intestine, now we know otherwise." So he thinks LC is celiac of the colon. I had Cyrex Labs celiac cross-reactivity testing done, which showed I was reactive to sesame seeds, amaranth, buckwheat, coffee and milk protein (and they all went right through me, so no surprise there). I think celiacs really need to consider whether we should eat ANY grains. I started the Autoimmune Paleo elimination diet in October and felt so much better without grains. I have since reintroduced rice and small amounts of quinoa. I've learned that corn is a big trigger for me -- not sure of it's a GMO thing, or the likelihood that corn gets contaminated with wheat during production. But if you want to get fairly quick relief, I would do a trial of no grains. This means you can still have tapioca, potato starch and arrowroot starch. I think rice is safe for most too. But no sorghum, GF oats, corn starch, etc.
I did not get a biopsy to dx celiac because I was already GF, but all my docs tell me to assume I have it. I have the DQ2 gene and very severe gluten intolerance plus other autoimmune issues. When discussing my LC with the famous celiac doc Dr. Fasano, he said "we used to think celiac was confined to the small intestine, now we know otherwise." So he thinks LC is celiac of the colon. I had Cyrex Labs celiac cross-reactivity testing done, which showed I was reactive to sesame seeds, amaranth, buckwheat, coffee and milk protein (and they all went right through me, so no surprise there). I think celiacs really need to consider whether we should eat ANY grains. I started the Autoimmune Paleo elimination diet in October and felt so much better without grains. I have since reintroduced rice and small amounts of quinoa. I've learned that corn is a big trigger for me -- not sure of it's a GMO thing, or the likelihood that corn gets contaminated with wheat during production. But if you want to get fairly quick relief, I would do a trial of no grains. This means you can still have tapioca, potato starch and arrowroot starch. I think rice is safe for most too. But no sorghum, GF oats, corn starch, etc.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi Miriam,
Sorry, I apparently missed your post previously. As Zizzle has pointed out, celiac disease and MC are both symptoms of gluten sensitivity, and they may not even be different diseases, because histologically, they are very, very similar, and there are numerous medical research articles to back up that claim (many of which are cited in the book). We used to think that the treatment was different, because with MC we tend to have many more food sensitivities.
But research shows that celiacs who are refractive to treatment, are refractive simply because they have additional food sensitivities (besides gluten) that must be eliminated from their diet in order for them to achieve remission. In fact, the reason why so many celiacs are subsequently diagnosed with MC is probably because they have been producing antibodies to those additional foods long enough to develop the additional diagnostic markers of MC, even though they may not have been experiencing the clinical symptoms of MC previously.
I too have a celiac gene, and I showed all the effects (including the neurological problems associated with celiac disease), but my doctors (in their infinite wisdom) never bothered to even look for celiac disease, so it was never diagnosed.
Most of us show signs of significant malabsorption problems, which obviously would not be possible without small intestinal involvement.
Tex
Sorry, I apparently missed your post previously. As Zizzle has pointed out, celiac disease and MC are both symptoms of gluten sensitivity, and they may not even be different diseases, because histologically, they are very, very similar, and there are numerous medical research articles to back up that claim (many of which are cited in the book). We used to think that the treatment was different, because with MC we tend to have many more food sensitivities.
But research shows that celiacs who are refractive to treatment, are refractive simply because they have additional food sensitivities (besides gluten) that must be eliminated from their diet in order for them to achieve remission. In fact, the reason why so many celiacs are subsequently diagnosed with MC is probably because they have been producing antibodies to those additional foods long enough to develop the additional diagnostic markers of MC, even though they may not have been experiencing the clinical symptoms of MC previously.
I too have a celiac gene, and I showed all the effects (including the neurological problems associated with celiac disease), but my doctors (in their infinite wisdom) never bothered to even look for celiac disease, so it was never diagnosed.
Most of us show signs of significant malabsorption problems, which obviously would not be possible without small intestinal involvement.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.