Curious, does your GI doc link gluten to MC?

IDreamInColor · Post by **IDreamInColor** » Wed Oct 27, 2010 9:32 pm

Thankfully I found this message board and learned about the gluten connection to MC, otherwise I never would have known, because my doctor says "gluten has nothing to do with it." grrr
So I'm curious, does your GI doc tell you to avoid gluten with MC? Or does he feel it has nothing to do with it.

wonderwoman · Post by **wonderwoman** » Wed Oct 27, 2010 10:54 pm

My GI says there is no reason to avoid gluten with CC. If I had Celiac, then he said it would be necessary to eliminate gluten.

I have been GF since early March. Had some minor screwups right in the beginning as many of us do when beginning this new lifestyle.

natythingycolbery · Post by **natythingycolbery** » Thu Oct 28, 2010 1:21 am

Mine does, but he said its not common, I pointed him in the direction of this forum.

MaggieRedwings · Post by **MaggieRedwings** » Thu Oct 28, 2010 5:11 am

For the most part and from our experience here - GI doctors seem to refuse the connection between our disease and gluten. They for the most part say if you are a celiac then avoid the gluten not for CC/MC. Also they fail to realize that recommending more fiber in the diet does not work at all for us. As a whole, they have a good bit to learn.

Love, Maggie

JLH · Post by **JLH** » Thu Oct 28, 2010 6:07 am

Mine does now that I have told her about what I have learned and experienced from the info on this site. She knows that I have not taken either of the meds (Entocort or Lialda) that she was going to prescribe.

On each visit, I take important information that I have found here. She is receptive about the diet but I don't know about EnteroLab, yet. I worked up to that on my last visit. I took her a post that Tex had written to a newbie about EnteroLab plus the brochure from their site.

I also took her Polly's post about no more visible MC on her last colonoscopy. I think that is proof that diet works.

Zizzle · Post by **Zizzle** » Thu Oct 28, 2010 8:32 am

I went to see the foremost researcher on Celiec disease on the East Coast, probably the whole country, Dr. Alessio Fasano. He admitted "We used to think celiac disease was confined to the small intestine and the large bowel was spared...we now know otherwise."

Polly · Post by **Polly** » Thu Oct 28, 2010 11:52 am

Not originally, but she has become a believer since listening to my experience over the past 10 years. She now even believes that other foods, not just gluten, can be a problem too.

Love,

Polly

Gabes-Apg · Post by **Gabes-Apg** » Thu Oct 28, 2010 3:49 pm

No, and neither does majority of the GP's i have seen.

I am now seeing a GP who focuses on nutrition/environmental type medicine, she was not totally convinced when we first discussed it, by the end of the appointment she was willing to accept it based on my strong conviction to diet management.

a bit part of that is
a) not many doctors specialists have treated a mc patient before and even if they have as evident by this site no 2 MC patients are identical with symptoms and treatment success
b) as we have frequently discussed there are only a small amount of published articles and studies that talk about benefit of GF diet for these conditions and
c) as the diet/ingredient managment takes time ie it can take up to 12 months for your body to heal, it is hard to prove measurable improvement to those with scientific mind.

Post by **tex** » Thu Oct 28, 2010 4:35 pm

Gabes wrote:c) as the diet/ingredient managment takes time ie it can take up to 12 months for your body to heal, it is hard to prove measurable improvement to those with scientific mind.

That's an excellent point. Most research test trials investigating treatments, are for 6 to 8 weeks, and if anything happens past that time frame, it is pretty much off their radar. Medical professionals are accustomed to dealing with much faster responses, (if a drug doesn't work withing 6 weeks, they assume that it isn't going to work, and I have a hunch that they apply that standard to just about everything else, also).

As far as my experiences with doctors are concerned, I have been treated for various issues in the past 5 or 6 years, (unrelated to MC), and while I haven't encountered a single one who will admit to believing in non-celiac gluten sensitivity, (I usually manage to work that into the conversation, regardless of what I am being treated for), anytime that I have been in a hospital, when asked about allergic reactions to drugs, etc., I've always stated that I'm sensitive to gluten, and I've never had a doctor question that claim. They always take my word on it, without any hesitation. (They probably just assume that I'm a celiac).

Tex

Joefnh · Post by **Joefnh** » Thu Oct 28, 2010 4:44 pm

I was fortunate with my second GI doctor regarding gluten. During my first appt he mentioned that many with MC can have intolerances to gluten and or soy. He did not bring up dairy. My doctor was sharing with me some articles he had on the subject, Tex I think I sent you a copy of that article that he gave to me.

In my discussions with my GP, he is not willing to consider gluten as an issue for any health condition beyond 'true' coeliac disease.

--Joe

Celie · Post by **Celie** » Thu Oct 28, 2010 5:37 pm

My GI doc does not think a GF diet is necessary unless you have Celiac disease. She is not against trying to gain control with diet. But,she says that in her practice patients who tried diet to control colitis have not had much success.

Celie

Gloria · Post by **Gloria** » Thu Oct 28, 2010 7:54 pm

My GI listens to me, but doesn't take a stand on the issue either way. His attitude is: if it helps, then do it. I don't think he recommends being GF to his MC patients. He prescribes Entocort and sends them on their way. If I had success from just eliminating gluten, he'd be more impressed, but my journey hasn't been that simple.

Gloria

harma · Post by **harma** » Fri Oct 29, 2010 7:02 am

My GI mentioned during one of my visits when I told him about the gluten free diet, that based on some researched that there might be a relation between gluten and MC. Lets just say, he didn't rule it out and said that is a lot about MC that is unknown. I am sure he will never advice any patient to try a gluten free diet with MC. But at least he admits that there might be a possible link.

grannyh · Post by **grannyh** » Fri Oct 29, 2010 5:24 pm

My family doc told me early on that he has seem many of his patients become intolerant to milk products and gluten as they get older.. celiac or not. Although I was diagnosed with CC, the gastro doc said it was up to me to find out what I could and could not eat.. since he had/has several patients with various kinds of colitis he knew nothing works for everyone:)
grannyh

Linda in BC · Post by **Linda in BC** » Fri Oct 29, 2010 11:37 pm

I don't have a GI doc, and my GP had never even heard of Lymphocytic Colitis ( I kid you not!) He just listens to what I tell him about it, keeps copies of the info I bring him and basically lets me manage my own disease, giving me what I ask for for prescriptions but very stingily, ( for 1 month at a time, usually.)

Linda