New Study On The Association Between MC and Celiac Disease

[tex]

Hi All,

This association has been reported before, of course, but this report has some new statistics, (such as the fact that celiacs are 70 times more likely to develop MC, than anyone in the general population). What caught my eye, though, is the mention that they found that while most of the subjects with MC had pancolitis, 16% had only right-sided colitis. That means that those cases would be missed, every time, if a sigmoidoscope were used to take biopsies. 16%, is an unacceptable number of missed diagnoses, IMO. I've whined about that situation before, but this study actually assigns some numbers to the risks.

I've also maintained that histology usually does not return to normal, once MC develops, and subsequent biopsies are likely to show residual markers, despite the resolution of symptoms. Their findings seem to agree with that viewpoint:

Follow-up biopsies revealed that the colitis persisted in 57% of the patients with celiac disease and microscopic colitis, despite improved diarrhea symptoms; the diarrhea resolved in most of the patients.

Also, this is an interesting observation:

Patients with celiac disease and microscopic colitis have more severe villous atrophy and frequently require steroids or immunosuppressant therapies to control diarrhea.

The red emphasis is mine, of course.

http://www.sciencedirect.com/science?_o ... 7699e9e2c7

Tex

[angy]

THat's got me thinking......i'm convinced I have celiac disease even though that weak test says negative. I'm also convinced that undetected celiac has progressed into cc. Somehow that makes sense for me.
Medical researchers really need to try and get a handle on an accurate celiac test that detects early stages of cd and not one that detects later stages. I hope this will happen in the future for all those poor people who are at risk of getting mc because of undetected celiac disease. Sigh!!!

Does that make sense lol!!!

[harma]

this keeps interesting me, the link between cd and mc. Not all celiac patients get mc. But is this because the gluten intolerance is early diagnosed and stop eating gluten? What I have read before, in most cases or quite often, if celiacs have MC, the damage of the villi is bad (total atrophy). That means that cd is diagnosed in a far developed stage of the disease CD. Could this suggest that all Celiacs in the end would get MC if they would not quit eating gluten? Are maybe a lot celiacs at the moment they get diagnosed have already a mild form of MC, which will recover once they stop eating gluten.

On the other hand is there any evidence that MC people later on in life develop a CD if they keep on eating gluten? I mean it is for sure now that there is a relationship with CD and MC. Like it says people with CD have a 70% higher change on developing MC. But how is this possible if they already stop eating gluten? Could it than be the milk or soy?

These are probably questions that can't be answered yet, but it keeps my mind busy.

[Lucy]

The other "allergens" can definitely do damage, even if more slowly than gluten.

In terms of who gets what combination of autoimmune conditions and how severe, etc., I think the permutations are endless. There are no doubt other genes/proteins relationships involved, so we're looking at a long, long time in putting all the little bricks in place, unfortunately. Hopefully, each layer of the wall will offer some new way of helping people til the whole thing is done, which it may take forever.

Perhaps there will be a meta level finding some day that will bypass some of the nitty grit building blocks -- let's just hope so.
Yours, luce

[tex]

Angy,

It makes a lot of sense. I agree with you, and trying to convince the hard-headed mainstream GI docs that celiac disease can indeed be diagnosed before it fully develops, is exactly what Dr. Fine has been trying to do, for over 10 years. If more research continues to point in the same direction as his discoveries, then eventually, even the hard-heads will begin to see the light, (I hope).


Harma,

I have a hunch that some of the celiacs who develop MC, may be people who either occasionally "slip" on their diet, or who are unaware that some of the foods in their diet contain gluten, (IOW, they are not being adequately treated), but I suspect that many of the celiacs who develop MC, are those who were diagnosed so late in the game, that they have developed additional food intolerances, and as Luce pointed out, those foods, (such as milk, or soy), continue to damage the intestines, even though these people are following a strict GF diet.

Many, many members of celiac discussion boards, discuss their issues with other food intolerances, as if other food intolerances is a natural part of celiac disease. It is not. Classic celiacs should not have additional food intolerances. By definition, the GF diet should bring remission for anyone with celiac disease, and the GF diet should maintain remission, indefinitely. I believe that the additional food intolerances are the distinguishing characteristic between "classic" celiacs, and those who also have MC.

Dr. Fine has mentioned, (years ago), in some of his articles, that refractive celiac disease, (where a patient does not respond to the GF diet), is almost always due to MC. Obviously, most of those celiacs who talk about their other food intolerances, are unaware of his findings, and they don't even recognize the paradox in the statements that they make.

On the other hand is there any evidence that MC people later on in life develop a CD if they keep on eating gluten?

I'm not aware of any research on this, but I would think that if someone with MC, who is sensitive to gluten, continues to eat gluten, then they certainly might eventually develop "classic" CD. I'm thinking that we might have one or two members who were first diagnosed with MC, and then later with CD, but, of course, in most cases, the CD diagnosis comes first, and the GI doc never even bothers to look for MC, unless the patient continues to complain about symptoms that are not resolved by the GF diet. I think there are probably many, many, undiagnosed cases of MC in the world, simply because once a GI doc reaches a diagnosis of CD, they don't bother to look any further, IOW, they don't routinely do a colonoscopy with biopsies, when looking for CD. Unless a GI doc suspects cancer, when a patient has a positive blood test, then the GI doc will do an upper endoscopy, (with biopsies of the small intestine), to confirm the diagnosis, and they won't see a need to do a "lower" endoscopy, if the "upper" shows villus damage consistent with celiac disease. Even if they should do a colonoscopy, many docs don't take biopsies, unless they suspect cancer, or MC, (but they rarely suspect MC, of course).

Tex

[angy]

I have to agree with you tex regarding gi docs and their priorities when taking biopsies. I was only offered a biopsy to be taken because I was so I'll and couldn't keep any food down. My guess is my doc wanted to rule out cancer. I don't think he believed me when I told him I was sure I was celiac. He couldn't really agree with me I guess because he needed to do both colonoscopy and endoscopy. The gi doc that did the procedures said I had a beautiful colon lol!! But decided to take biopses because they couldn't see anything with the camera procedures. Then when I saw my gi doc for diagnosis he said he hadn't seen a case of cc in 2 years and they didn't know much about it, now that was reassuring....not. He also said to continue eaten gluten for the next 6 months and then he would do another blood test. I said no I am not making myself Ill for 6 months. I had already stopped gluten 8 months previous to those procedures...And I will continue to stay gf as best I can. sigh... I'm droning on now lol!!!

[Gloria]

My GI said he automatically does a biopsy when a woman 50 years or older presents with IBS symptoms. That's getting closer, but he's still associating MC as an older women's disease. He's not quite there yet. Then again, neither am I.

Gloria

[tex]

Yep, that's why they think it's a disease of older women. That's where they look, so that's where they find it - it's a self-fulfilling prophesy.

Tex

[Stanz]

I am recently diagnosed (this Wed. after a colonoscopy) w/MC, after 3 yrs. of unremitting symptoms. Was tested 5 mos. ago for celiac and was negative, nevertheless I went GF about 10 wks ago and plan to continue being GF at least until I get through 8 wks of treating myself as naturally as possible for the MC, as I have a deathly fear of steroids.

In addition to Pepto and Immodium, I plan to take coconut oil, probiotics and my Naturopath has recommended L-Glutamine, which I will take once assured that my MSG allergy/reaction won't be triggered by it and as I understand there is some controversy on that. I've been looking into LDN as well.

I have a history of chelation for lead toxicity and looking back, it is likely that I've had MC for many years, but it has always gone into remission until these last 3 yrs. Was told I had Illeitus, Typhlitis?, was nuts and imagining it, LOL. I do take Premarin {.625 for many years as I had a hysterectomy at 26) and really don't want to stop taking it, but understand I may have to. Have a very strange medical history in general, but where it relates to intestinal issues, I had a nearly complete intestinal blockage that went on for 8 yrs. until they clipped the scar tissue that had wrapped itself around a loop of intestine and restricted flow.

I would greatly appreciate any guidance any of you may care to share about my protocol. I guess I fit the classic case of who gets this. I am 60.

[tex]

Hi Stanz,

Welcome to our internet family. I hope you can find the information and support here, that will enable you to control your MC without steroids, (or any meds, for that matter). It's certainly doable.

Like gluten and MSG, glutamine readily crosses the blood/brain barrier, so that has to be considered, if you're having any neurological symptoms, along with the MC, as some of us do.

There are some past threads about L-Glutamine, and LDN, that you might be interested in, (you can access the "Search" function, in the group of links toward the top of the page). I'm not referring to the Google search, but rather the built-in board "Search" link, above the "Google search".

Many of us have been able to achieve and maintain remission of all our symptoms by diet alone. Most of us who do so, also have to cut out all dairy products, (in addition to gluten, of course), and about half of us have to cut out all soy products and derivatives. Some have additional intolerances that they have to remove from their diet, but the diet does work, if all the intolerances are totally avoided.

FWIW, I had to deal with an intestinal blockage issue, myself, for a number of years, only mine was due to a stenosis, (narrowing), in the Sigmoid colon.

Please feel free to ask any questions that come to mind, and again, welcome to the board.

Tex (Wayne)

[ant]

Dear Stanz,

This is a great place to help all those with MC. I am sure you have already read many posts. It is really worth learning from all the information here and best of all to know you are not alone.

All the best, ant

[angy]

hi stanz



Sorry to hear of the diffiulties you have had and continue to experience. You have come to the right place and i hope you will find the information and answers to your questions here. Our family here are fantastic and will hopefully answer your questions, thats if you have not already read most of the posts here...Tex is the man for the scientific stuff... I wish you all the best on your road to recovery and remission...

[Stanz]

I felt at home immediately when I first saw the supportive conversations here and truly appreciate being able to learn from all of your experiences with this. I've been an avid researcher since I became internet savvy and even before that have always been wary of Western Med. in general, as I imagine many here are also. Most of the time it seems we must diagnose ourselves, as I did with my lead poisoning and in spite of the implications of MC, I am at least relieved to know it is not cancer, or another blockage - as surgery sucks.

In spite of my struggle with this, I have a very active life and career. I am a caterer who works in the film industry, so I work with the same crews all the time and I have now become one of "those people" who is an "extra needs" person I've had to accommodate over the years. I have a whole new understanding now and over the years I have found flourless cake recipes, cookie recipes and have been slowly adapting to an MC diet for a long time, as so many people, I feed have issues with foods. So, like it or not they are eating a lot of Quinoa, and if anyone here is interested in GF recipes, I have em and many of them are my own creation.

I will do the search for information on LDN and L-Glutamine, as you suggested, Tex. I am curious as to how many here have used the tests for celiac that Dr. Fine's site talks about, and if you have, which test did you order?

Again, thank you for welcoming a newbie, I look forward to getting to know people here and learn about how to get well.

[tex]

Here is a partial list of members' test results from Enterolab, to give you an idea of which tests people order. There are many members here who have been tested, but their results are not listed, simply because I'm not aware of their results, unfortunately.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

[Stanz]

I will look into this when I can, I am starting a 6 day job in the morning, so...with 16-17 hr. days, I won't have time to get back to anything about this for a week.