Sympathetic Gastroenterologists?

[The Horticulturalist]

Just wondering if any of you have found, or heard of, any GI docs that would acknowledge the possibility of non-celiac gluten intolerance? From just reading around the internet it seems to be mainly naturopath type docs that would be willing to consider this.

I know my own doc probably isn't one who would consider this, given that he thinks it's IBS as I have -ve on all my tests.

thanks

[Katie B]

I'm thinking that non-celiac gluten intolerance would be included under the umbrella of IBS. Some doctors now believe that a lot of IBS is caused by small intestinal bacterial overgrowth (Dr. Pimental) and that a diet that includes wheat aggravates this condition. This also includes fructose malabsorption and lactose intolerance - if the intestines can't process certain foods then it leaves undigested food for the bacteria to feed on and multiply - making bloating, diarrhea/constipation, nausea even worse.

I'm currently on the low FODMAP diet for bacterial overgrowth and it's working very well. My GI specialist was the one who recommended it and it's a scientifically-based diet for functional problems (vs colitis or crohn's):

Open Original Shared Link

Note that it isn't gluten-free but it is easy to modify to be gluten-free. As mentioned in a recent article featured on this site a lot of celiacs still have symptoms after they've gone gluten-free. This may be because they're unknowingly consuming gluten and/or the damage to their intestines is so extensive that they just can't process foods well enough - leaving leftovers for the bacteria. In my case, I never did get a clear diagnosis because the damage to the villi can be due to bacterial overgrowth and/or celiac disease and all of my other tests were inconclusive.

Anyways, hope this helps!

[Kay DH]

I don't think that most medical doctors know much about gluten, this includes GI doctors, and as such they dismiss symptoms. I've also found them too inclined to believe tests than to think about what symptoms may mean. My gluten intolerance started a year ago, after getting the flu. I did have minor symptoms before this, such as low D vitamins and thyroid, inflammatory arthritis that went away 20 years ago, and (undiagnosed) symmetrical skin rashes or a few decades. I had a celiac panel 2.5 years ago and it was negative. After the flu my symptoms were quite severe and my tolerance for bread dropped from the loaf to the crumb level. Symptoms included joints, brain fog, muscle aches, lethargy, D, C, cramps, bloating, rashes, sores in mouth, and so on. So, I went to a doctor for the stiff joints, and he did nothing. So, I researched arthritis, and gluten popped up. I went off gluten a couple of months after the flu, and my GI problems resolved in 3 days, the joints and other problems within a few months. I had a celiac panel 2 months after gluten-free, and it was negative. I had colonoscopy/endoscopy 6 months after gluten-free and the GI only had me on the gluten challenge for a (sick) week and only took 1 biopsy of my duodenum, which was negative. He dismissed most of my symptoms and assigned the rest to diverticulitis. Needless to say, I did not have any diverticuli or unfriendly bacteria/parasite blooms. He wouldn't even discuss the gluten problem, just said I only had a 10% chance of celiac with my HLA-DQ8 gene, and my Dad died of GI cancer because of food storage/prep techniques early last century. I am negative for wheat/gluten allergies. So, I have probably have celiac but don't know, and won't be tested again unless one can be gluten-free. By the way, this particular GI doctor was not directly recommended on the local celiac website, although another doctor at his practice was, followed by "(also coworkers)". I misinterpreted this to mean other doctors in the practice.

[Kay DH]

Another point is that the gluten probably was an immune system irritant for me for decades, but the flu was the trigger. I have a number of friends and family members that would not fit under the celiac umbrella in that they do not have anemia, short stature, thin, etc., but they have significant associated symptoms. I haven't seen much information about people having gluten sensitivity, or sensitivity that morphs into celiac due to environmental triggers, but I suspect it is one of the reasons that the market for gluten-free foods has expanded so quickly. Too bad medical science is slow to catch up. I have a friend that is an internist and she said they only studied celiac for a few minutes in school. She said "it seems to run in families?".

[mushroom]

This is one area where the patients are way ahead of the doctors, because the medical profession has no tests that we can pass It is not the fault of the patients with the problem, it is the fault of science and their inability to devise the test.

[cassP]

interestingly (and strange maybe)- BOTH my General Practitioner AND my GI AND some of their nurses- were totally sympathetic to and in complete acknowledgement of NONCeliac Gluten Intolerance.

i was surprised- cause they're both still traditional docs who didnt know as much about Celiac as most of us do- and also didnt want to diagnose me without the Biopsies- YET- they were completely open to people having gluten intolerance or sensitivity.

[T.H.]

Mine would be, I believe.

My GI was one who was telling me to tell the office all my symptoms, all the foods that made me feel bad, whether or not I had tested as being allergic to them, because 'tests don't tell us everything.'

So yeah...he was great. :-)

[cassP]

oh- and ps- my GI actually told me to go to the online community - that i could probably learn even more than from him- (that would be all of you guys

[Skylark]

Just wondering if any of you have found, or heard of, any GI docs that would acknowledge the possibility of non-celiac gluten intolerance? From just reading around the internet it seems to be mainly naturopath type docs that would be willing to consider this.

I know my own doc probably isn't one who would consider this, given that he thinks it's IBS as I have -ve on all my tests.

thanks

Out of curiosity, why does it matter? Your doctor does not control what you eat. The only treatment for non-celiac gluten intolerance is to go on a gluten-free diet (sometimes casein-free too). If there are still lingering GI problems gluten-free, the diet will not affect your doctor's ability to treat you.

By the way, I have yet to run across a doctor who has not been supportive. They all say I should not eat something that makes me sick and I am getting care that includes testing for deficiencies. Not one of the four family medicine doctors I've run across in the past five years has thought I should worry about testing or formal diagnosis.