Ulcerative Colitis Vs. Gluten Sensitivity

[paulstefano]

Hello,

I was diagnosed with ulcerative colitis 4 years ago. Well, I say 4 years ago, but it's not that cut and dry. I was first told I had Crohn's disease by a Gastroenenterologist in 2000. Based on a convenience, I started seeing another doctor. He also told me I had Crohn's disease. After moving, again, I sought out another doctor. He did 2 colonoscopys over 2 years and decided I actually have Colitis, located in the extreme distill colon. Now, after over a year of trial and error therapy with steroids and mesalamine, I was still having problems. My doctor was about to suggest using immune suppressant therapy with a drug called imuran. This scared the heck out of me. These drugs suppress the immune system to stop it from causing symptoms. The side effect is the body is exposed to all other germs, with a weakened defense system. After discussing, my Doctor suggested seeing a pharmacist friend of his who runs a natural medicine shop. He finally suggested the link between Celiac and colitis. He suggested going on a gluten free diet, while using some natural supplements. Immediately, I noticed a difference. Although I only stayed on the diet a month, I noticed I felt signifcantly better. Nearly all of my colitis symptoms went away. I recently started eating gluten again. I started off, for instance by eating a whole pizza. It took 3 days, but after that time, I felt terrible again. It's my opinion, that I have at least a gluten sensitivity, if not full blown Celiac disease. I am now back on a gluten free diet, and will remain on it for the foreseeable future.

So what's the moral of the story? Ask questions. Do research on your own. I live in Baltimore, home of the Johns Hopkins University Hospital, perhaps the finest medical institution in the world. All 3 of the gastroenterologists I visited were graduates of Hopkins, yet it took visiting a pharmacist (who graduated from University of Maryland, not exactly a correspondence school) to suggest the gluten connection. Luckily, my current Hopkins disciple, is very open minded. It was he who referred me to the natural medicine center. He suggested seeing an acupuncturist, and is very interested in what I have discovered about my own situation, so that he may share it with other patients.

Now there is significant research to suggest that a build up of gluten in the system can cause a celiac like response. There is an article on this web site that makes that argument. The problem is, there is a build up. Unlike classic Celiac disease, I don't have immediate reactions. I can eat an entire loaf of bread and feel fine that night. If I do that for several days in a row, though, the symptoms flare up. The same is true in reverse. If I start a gluten free diet, it is not an immediate cure. It took a few weeks for me to notice a difference, and even then I had symptoms. I'm hoping that in a few months I will be symptom free. We'll see.

The bottom line is there is no clear cut answer to the Ulcerative Colitis vs. Gluten Sensitivity question. Maybe some day.

[burdee]

I've read in Ron Hoggan's "Dangerous Grains" book that gluten intolerance (autoimmune reactions or antibodies to gluten digests) can affect every inch of the digestive system and even affect the whole body when those gluten digests leak from the intestines into the blood stream. That's why there are soooo many different symptoms associated with celiac disease.

Unless any of your doctors actually did celiac blood tests or small intestinal biopsies to detect damaged villi (in addition to all those coloscopies), they may have missed detecting the celiac disease damage which influenced your other symptoms. However, many of us believe successful resolution of symptoms after following a gluten free diet is a better 'gold standard' to diagnose celiac disease than the 'old' standard (ala Ron Hoggan) of intestinal biopsy. That test can be very hit and miss according to whether the biopsy actually targets a damage piece of small intestine. Similarly, blood tests are only accurate if the gluten antibodies have begun to leak from the gut into the blood stream. Many have celiac disease symptoms and do well with the gluten-free diet but don't show positive blood or biopsy results.

I agree that we have to do our own research. There is no classic celiac disease pattern. Many get abdominal symptoms of diarrhea or constipation with pain, bloating and gas. Some get acid reflux, nausea or vomiting. Others get headaches or various body aches and fatigue. Still others get DH. Some get delayed reactions to gluten ingestion. Some get more immediate reactions. The only celiac disease classic symptom seems to be a variety of reactions sometime after ingesting gluten.

BURDEE

[KelBelle]

I know this is a really old thread, but I find it interesting.

I was diagnosed with ulcerative colitis almost seven years ago. I spent many years on steroids and having allergic responses to nearly every other med tried. I was very, very, very ill for a long time. I refused to take the immunosuppressant meds for the obvious reasons. I was told by numerous docs that diet made no difference and supplements were a waste of money. I was even referred to see a doc at the University of Chicago that was supposed to be the 'best' doc for women and IBD. They all said I needed surgery to have my colon removed. I couldn't go three weeks without a severe flare up and sometimes being hospitalized. Last year I nearly had a blood transfusion and afterwards barely made it through a bad case of c-difficile that went undiagnosed for maybe four months.

After all that monkeying around, I decided, with my primary doc/homeopath to go gluten free (even with past neg blood results). I began the gluten free diet in May of 2007. Since then I have not been on any steroids or been to the hospital or even had any symptoms unless I was 'glutened'. My reactions are not immediate, but within hours. They are rashes, gas/bloating and diarrhea. Prolonged exposure (accidental through seasonings was my recent bout) leads to intestinal bleeding, mucous, migraines, blurred vision, anemia, brain fog and probably other things that I haven't linked to it yet. For some unknown reason, other docs I see refuse acknowledge a connection. One even called it 'coincidental luck' and told me not to hold my breath. Yet, none of the naysayers can explain the sudden elimination of my colitis symptoms in any other way.

My sister is now working for a GI clinic in another state and the very first test that they do when a patient presents with crohn's or colitis symptoms is for celiac. They are running at about an 85-90% positive rate now. They recommend a gluten-free diet for anyone with any GI issues as well. I wonder what a biopsy would have shown for me...

[dbmamaz]

  KelBelle said:

My sister is now working for a GI clinic in another state and the very first test that they do when a patient presents with crohn's or colitis symptoms is for celiac. They are running at about an 85-90% positive rate now.

OMG, thats wild! I SO wish we could push for the AMA to make that a recomendation, a protocol for all crohns, colitis and ibs patients. 85-90% positive! Wild!

[horsesjapan]

That is amazing! I want to go see that dr. (I'm in Italy for three years though, so not likely to happen!)

Nancy

[deschnell]

I was officially diagnosed with "mild" UC in Dec '02 (symptoms had started the previous July, but as most men, I didn't go to the doctor right away - and since I was new in Calgary (Alberta), I only had walk-in doctors, then a 2 month wait to see the GI). Anyway, I've never been really bad needing hospitalization or long treatments of prednisone, but I did use it for about 2 months a couple years ago. My main med was the mesalamine, and I did go on imuran, the immuno-suppresant for a little while. All meds have been stopped for almost a year, though I still have uncontrollable diarrhea, and occasional blood. I know that I have a sensitivity to gluten, just from my own experimentation. (Isn't it amazing how many "normal" "everyday" foods have wheat or gluten in them?!).

After a little thinking, and reading, I'm starting to wonder if I have celiac instead (or) as well (if possible). I had one biopsy back in '02, but only from the sigmoid area. I had a colonoscopy about 20 months ago, and the GI (a different one) confirmed "pan-colitis" - the entire colon infected. Now my treatments are with chiropractic (using koren specific technique), naturopath, and emotional counseling. (plus diet/lifestyle). I'm hoping things will get better without meds.

Anybody here have any recommendations for natural doctors and practitioners in Alberta Canada?

[nesseca]

My daughter was diagnosed just today with ulcerative colitis. She had been having bloody stools for several months so we took her to a pediatric gastroenterologist. After an endoscopy and colonoscopy he has come to this conclusion. Blood tests and the endoscopy don't show that she has celiac disease. Currently she is taking Asacol and Prevacid. Her symptoms have gone away. The doctor suggested that she have an allergy test to rule out allergic colitis.

I self-diagnosed through Enterolab that I am gluten and casein intolerant. I also have the genetic markers that make it likely that my children will also become (or already are) gluten intolerant. In the back of my mind I have a sneaking suspicion that perhaps she is gluten intolerant as well. I'm tempted to get her tested from Enterolab to see what that may show. I would hate to see that she was misdiagnosed and a number of years down the road she may have to get a colectomy when it may have never been necessary to get one in the first place.

[Nancym]

From Dr. Fine's site:

  Quote

Can I have gluten sensitivity if screening blood tests for celiac sprue are negative or indeterminate?

The answer to this question is definitively yes. Originally screening tests for gluten sensitivity/celiac sprue consisted of blood tests against the damaging protein in gluten called gliadin (antigliadin antibodies). However, with heightened awareness of the possibility of gluten sensitivity in family members of diagnosed celiacs, or in people with syndromes associated with celiac sprue, it has become clear that not all people suspected of being immunologically intolerant to gluten have positive blood tests. This is problematic because these individuals are told outright that they are not gluten intolerant based on negative blood tests. Many times patients themselves are able to deduce that it is wheat that causes them to feel ill or have intestinal symptoms, but when blood tests are negative they are diagnosed with irritable bowel syndrome or sometimes "wheat allergy". It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea about a year ago that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood. This turned out to be the case based on extensive analysis of more than 500 normal people or people with various medical syndromes (including bonafide celiacs, patients with microscopic colitis, a form of colitis genetically and clinically related to gluten sensitivity, and patients with chronic diarrhea of unknown origin). Based on this research and its importance, I have brought this new test to the public directly via the internet from www.EnteroLab.com This new stool test can detect antigliadin antibodies in stool whether a person has symptoms or not. It is ideal for children who do not have to be stuck with a needle. Samples can be mailed from your home without having to go to the hospital or a doctor's office. Furthermore, you can decide if you want to be tested and do not have to beg a doctor to test you for gluten sensitivity.

Thus, because the antibodies produced as the result of gluten sensitivity are mainly secreted into the intestine rather than the blood, analyzing stool turns up many more positive tests than blood tests. It is only when the immune reaction has been present for long periods of time and/or the process is far advanced that antibodies are produced in quantities sufficient to leak into the blood.Top

I think his own daughter had microscopic colitis which cleared up on a gluten-free/CF diet.

[DMT]

  deschnell said:

I was officially diagnosed with "mild" UC in Dec '02 (symptoms had started the previous July, but as most men, I didn't go to the doctor right away - and since I was new in Calgary (Alberta), I only had walk-in doctors, then a 2 month wait to see the GI). Anyway, I've never been really bad needing hospitalization or long treatments of prednisone, but I did use it for about 2 months a couple years ago. My main med was the mesalamine, and I did go on imuran, the immuno-suppresant for a little while. All meds have been stopped for almost a year, though I still have uncontrollable diarrhea, and occasional blood. I know that I have a sensitivity to gluten, just from my own experimentation. (Isn't it amazing how many "normal" "everyday" foods have wheat or gluten in them?!).

After a little thinking, and reading, I'm starting to wonder if I have celiac instead (or) as well (if possible). I had one biopsy back in '02, but only from the sigmoid area. I had a colonoscopy about 20 months ago, and the GI (a different one) confirmed "pan-colitis" - the entire colon infected. Now my treatments are with chiropractic (using koren specific technique), naturopath, and emotional counseling. (plus diet/lifestyle). I'm hoping things will get better without meds.

Anybody here have any recommendations for natural doctors and practitioners in Alberta Canada?

I know that you posted this some time ago, but if you are still looking for a natural doctor I have a good one to recommend. A bit of history....I was diagnosed with UC in 2001. By the time they found out what was wrong with me i had to be hospitalized for a month. I underwent a treatment called TPN. Basically they were feeding me through a tube because my intestines were so ulcerated that I could absorb nothing and was not healing. I was also taking steroids interveniously, on asacol and had to undergo a blood transfusion. It was good times! Once I got out of the hospital I was still on steroids for almost a year. Every time I tried to wean myself off of them, as per my GI, I would flare again. I went to a naturopath who told me to avoid wheat, dairy, corn, spelt, yeast and sugar. For quite some time I was extremely strict with this diet. My symptoms went away and i was feeling great.

Over the years I would flare every-once-in-a-while, usually when I was stressed. Each time I have needed steroids to recover. After one flare, I even went to see a surgeon about having my colon removed to cure me of this beast. He recommended I wait and I'm glad now that he did.

My story comes to you because you were asking about natural doctors. In the last 3 years, I have started seeing a Natuopath in Calgary by the name of Dr. Jason Ahlan. He works out of the Paradigm Health Group just off Heritage Drive. He is amazing. I have started treatments called a Myers IV. It is basically and iv full of vitamins and minerals that your body isn't able to absorb properly because of the disease. He has also recommended some great natural products that have helped speed my healing. My flares are no where near what they used to be. I still need drugs most times, but the pain is signicantly less and they don't last as long. I would recommend him in a heart beat. He has also been able to recomment other means of achieving health through accupuncture, nutritionists speacializing in natural nutrition and homeopaths. I have even seen a medical intuitive. Perhaps it helps that I find all of this fascinating. Like I said, I'd recommend him in an instant. He has made a big difference in my battle.

[GirlinBlk]

Would it be possible to get the name of your doctor at JH? I live in the Baltimore area and my husband is suffering from UC. I have taken him off gluten and all grains, which is helping. We are both unhappy with his doctor and would like to switch to one with a more open mind than 'take drugs the rest of your life or have surgery'. Thanks.

Hello,

I was diagnosed with ulcerative colitis 4 years ago. Well, I say 4 years ago, but it's not that cut and dry. I was first told I had Crohn's disease by a Gastroenenterologist in 2000. Based on a convenience, I started seeing another doctor. He also told me I had Crohn's disease. After moving, again, I sought out another doctor. He did 2 colonoscopys over 2 years and decided I actually have Colitis, located in the extreme distill colon. Now, after over a year of trial and error therapy with steroids and mesalamine, I was still having problems. My doctor was about to suggest using immune suppressant therapy with a drug called imuran. This scared the heck out of me. These drugs suppress the immune system to stop it from causing symptoms. The side effect is the body is exposed to all other germs, with a weakened defense system. After discussing, my Doctor suggested seeing a pharmacist friend of his who runs a natural medicine shop. He finally suggested the link between Celiac and colitis. He suggested going on a gluten free diet, while using some natural supplements. Immediately, I noticed a difference. Although I only stayed on the diet a month, I noticed I felt signifcantly better. Nearly all of my colitis symptoms went away. I recently started eating gluten again. I started off, for instance by eating a whole pizza. It took 3 days, but after that time, I felt terrible again. It's my opinion, that I have at least a gluten sensitivity, if not full blown Celiac disease. I am now back on a gluten free diet, and will remain on it for the foreseeable future.

So what's the moral of the story? Ask questions. Do research on your own. I live in Baltimore, home of the Johns Hopkins University Hospital, perhaps the finest medical institution in the world. All 3 of the gastroenterologists I visited were graduates of Hopkins, yet it took visiting a pharmacist (who graduated from University of Maryland, not exactly a correspondence school) to suggest the gluten connection. Luckily, my current Hopkins disciple, is very open minded. It was he who referred me to the natural medicine center. He suggested seeing an acupuncturist, and is very interested in what I have discovered about my own situation, so that he may share it with other patients.

Now there is significant research to suggest that a build up of gluten in the system can cause a celiac like response. There is an article on this web site that makes that argument. The problem is, there is a build up. Unlike classic Celiac disease, I don't have immediate reactions. I can eat an entire loaf of bread and feel fine that night. If I do that for several days in a row, though, the symptoms flare up. The same is true in reverse. If I start a gluten free diet, it is not an immediate cure. It took a few weeks for me to notice a difference, and even then I had symptoms. I'm hoping that in a few months I will be symptom free. We'll see.

The bottom line is there is no clear cut answer to the Ulcerative Colitis vs. Gluten Sensitivity question. Maybe some day.

[mizzilie]

Mh, I live in Germany and I am also diagnosed with Ulcerative Colitis and Celiac Disease. My doctor says it doesn't have anything to do with each other. I am not convinced! So it is interesting to read this thread.

[JuliaCinSC]

I registered just to talk with you about this... I know it's been some time since you posted. Here is my story, and if it helps at all...

I was dx'd with UC 4 yrs ago, and I was immediately put on Imuran (azathioprine), Colazal, prednisone, and I also took Levsin and Phenergan as well as Lortab for severe pain. I was on the meds for 3 months and still had the bloody diarrhea and severe pain, weight loss.

After some research, and my uncle being dx'd w/ Celiac, I started on the Specific Carbohydrate Diet, which goes on the supposition that gluten is "bad" for those with UC and Crohn's (as well as several other medical conditions). Within 2 weeks, I had no blood and less pain, and within 4 weeks no more diarrhea. It's a very restrictive diet when you start out, but I feel that it was so worth it in my case. My GI doc was threatening Remicade treatments before I started on the SCD diet because I'd lost so much weight, but we canceled the Remicade when I got on the SCD and started gaining weight back. (Remicade scared me like Imuran did you.)

This is just my testimonial, but if you look up the SCD, you'll find lots of others who have had similar success. My GI doc of course told me that "diet and UC are not related." I told her that she might say that, but I'm a believer that it is. Been in remission, with only mini-flares, now for 3 yrs (knock on wood!).

Good luck and good health to you!

Julia C.