Family/Celiac/multiple sclerosis

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Family/Celiac/multiple sclerosis

Postby ljm » Thu Apr 20, 2006 7:57 pm

Not terribly exciting. But I was recently in contact with my brother, a rather infrequent occurance, and communicated to him that I may have MS, as useful family medical information. He responded that he has recently been diagnosed with celiac disease. That means three of four siblings in my family have a confirmed autoimmune disease. And my mother died two years ago in a confusion of conflicting diagnoses including RA and Lupus. Anyhow. I believe that celiac disease can have neurological symptoms, including lesions. I intend to get tested, I guess, well, it could be that a similar reaction to glutein could be contributing to my condition, or, that we all genetically have a wierd vulnerability thats expressing itself different ways (I was on a glutein free diet but eased up a bit when the allergy test came back negative: I think the celiac tests are somewhat different)
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Postby Melody » Fri Apr 21, 2006 6:17 am

Yes the test for celiac is separate from the standard allergy test. I Canada it cost $120 but we got $80 or so back from our insurance company. Well worth running it takes some of the guess work out and lets you look in other directions if it doesn't apply to you. John does not have celiac nor any intolerance to gluten. He lucked out
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby mrhodes40 » Fri Apr 21, 2006 10:39 am

Threre is a disease called gluten ataxia in which the gluten causes not just lesions but a slowly progressive ataxia (looks like ms but not well defined relapses/remissions).
This is a more recently described disease. IMHO the people who do well on gluten free diets and SWEAR it cures their "MS" are right....but they had GA all along not MS. In order for them to be tested they'd have to eat gluten for a month or two then get the blood tests. They do not need to have the typical changes of celiac in the bowel lining to have this issue
The researcher for this is Mario Hadjivassiliou MD and he has produced many papers on this subject. He discovered GA essentially. Here's an abstract:

Hadjivassiliou M, Maki M, Sanders DS, Williamson CA, Grunewald RA, Woodroofe NM, Korponay-Szabo IR.

Department of Neurology, Royal Hallamshire Hospital, Sheffield, UK. m.hadjivassiliou@sheffield.ac.uk

OBJECTIVE: To investigate the presence of autoantibody deposition against type 2 tissue transglutaminase (TG2; a reliable marker of the whole spectrum of gluten sensitivity) in the jejunal tissue and brain of patients with gluten ataxia and in control subjects. METHODS: The authors evaluated jejunal biopsy samples from nine patients with gluten ataxia and seven patients with other causes of ataxia for the presence of TG2-related immunoglobulin deposits using double-color immunofluorescence. Autopsy brain tissue from one patient with gluten ataxia and one neurologically intact brain were also studied. RESULTS: IgA deposition on jejunal TG2 was found in the jejunal tissue of all patients with gluten ataxia and in none of the controls. The intestinal IgA deposition pattern was similar to that seen in patients with overt and latent celiac disease and in those with dermatitis herpetiformis. Widespread IgA deposition around vessels was found in the brain of the patient with gluten ataxia but not the control brain. The deposition was most pronounced in the cerebellum, pons, and medulla. CONCLUSIONS: Anti-tissue transglutaminase IgA antibodies are present in the gut and brain of patients with gluten ataxia with or without an enteropathy in a similar fashion to patients with celiac disease, latent celiac disease, and dermatitis herpetiformis but not in ataxia control subjects. This finding strengthens the contention that gluten ataxia is immune mediated and belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis.

Please note that the people did not have to have enteropathy for the brain issue to appear, that means that an intestinal biopsy would be negative. So if you went to the gastroenterologist and got tested, and he did the biopsy of your gut, he'd give you a diagnosis of NOT having celiac disease, but if you have the antitissue transglutaminase IgA you ight have GA.

This is one of those things that makes me think it's no wonder what works for some does not work for all. before Hughes syndrome was described and people could be diagnosed with that, you would be diagnosed usually with MS if you had the neuro presentation. Now with GA being defined as well, here is another group that may well be fractured out of the MS population. There's over 100 kinds of arthritis. It's interesting!

Certainly be tested and get the whole panel not just the antigliadin antibody test ( which many doctors will do as a first pass test) esp in the US where diagnosis of this is terrible), you need to know about the feedback on the antitissue transglutaminase.
Blessings
Marie
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Postby LisaBee » Fri Apr 21, 2006 6:12 pm

The observed ties between celiac disease and MS are really interesting. Another point besides the immunological issue is that a feature of celiac disease is malabsorption, and people with celiac disease typically exhibit varying symptoms of malabsorption and deficient nutrition. This does not mean that all celiacs get really thin, although some certainly get dramatically so - the most severely affected people are more likely to get accurately diagnosed. Some less-affected people may actually overeat to compensate for not absorbing nutrients.

On the sibling/celiac/autoimmune disease front raised by ljm: My sister was diagnosed with Graves disease (in remission) and was found to be allergic to wheat years ago on what I presume was a standard allergy battery but she didn't stop eating wheat. She had skin symptoms for the last 15+ years that might have been dermatitis herpetiformis (DH), a skin disease highly associated with celiac disease. She also had a lot of GI complaints. I was poking around on the website and found a lot about DH and told her - she has since found out much more. Both she and I have been on an essentially gluten-free diet for the last 1.5 years in what started as an experiment. Her skin has almost completely cleared up (that took a while), GI problems and other allergies are now gone or much mitigated. I had milder GI problems and a possible/probable MS diagnosis. After avoiding gluten-containing foods, I am generally feeling much better, B12 and folate levels have improved on my new diet (I do have measurements of those from 1.5 years ago and recent measurements), and I haven't had any identifiable relapses since diagnosis. Although someone could say this all a placebo effect, the rise in B12 and folate and the drastic reduction in gut cramps and etc. is suggestive of at least better nutritional status. Something positive happened. Do I have celiac disease? I don't know for sure. Neither my sister nor I have been formally tested for the antibodies found in celiacs - the tests have changed since my sister was tested for food panel allergies years ago and I have never had an allergy test of any kind. But we are feeling so much better we are not inclined to challenge by eating gluten again and getting a test. I can live without gluten-containing foods.

Not eating gluten is somewhat difficult on some levels, because it involves eliminating a lot of processed convenience foods in addition to all the typical baked goods, and it gets socially awkward at times, but if changing my diet helped me this much, it is a small price to pay. I have become an avid reader of food labels. One upside is that it puts a lot of junk food off-limits. Another upside is that I eat a greater variety of foods than the average person and that has become quite fun. In the course of a day an average American could eat a bagel, wheat crackers, a sandwich, and pasta and think that is a lot of carbohydrate variety - it is actually all variations on wheat flour products. In contrast, for my carbs I may eat some rice or buckwheat cereal, some corn at lunch, some millet-flaxseed crackers, and a mixture of root vegetables with dinner, getting a much better variety of carbs.

The best thing to do if concerned about celiac status is get tested for celiac disease. However, if that is not possible, and especially if anyone is experiencing GI symptoms of any kind, I would suggest going gluten-free for a couple of weeks and see what happens in the spirit of an experiment rather than some sort of deprivation exercise. This is totally innocuous, and other non-gluten grains such as rice, quinoa, millet, etc can be eaten instead gluten grains (wheat, rye, barley, probably oats). Both my sister and I noticed an improvement in GI symptoms within this short two-week time frame and that was our clue to continue - other improvements came more gradually over weeks to months. I've heard people say they would die if they couldn't eat bread, but really it is not THAT bad- - there is life without bread, indeed, there are gluten-free breads available for those truly addicted. There is literature out there that suggests about one in 250 people in the U.S. have celiac disease, making celiac disease much more common than previously thought. And more common than MS.

Although this article doesn't link celiac disease with MS, it is a good overview for the curious:

http://www.aafp.org/afp/20021215/2259.html

Is celiac disease related to MS? Do people with neurological symptoms associated with celiac disease sometimes get diagnosed with MS, as Marie discussed? If celiac disease is just coincidentally associated with MS in an individual, would having malabsorption, and reduced nutritional status, make the MS worse in that person? These are all interesting issues to explore, and certainly the third is a no-brainer. Having untreated celiac disease is not condusive to good health for anyone. Regardless of my own unofficial status, a healthy gluten-free diet made me feel better than a gluten-loaded one so I'm staying with it. I do miss good bagels.....

Lisa
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Postby LisaBee » Fri Apr 21, 2006 6:18 pm

For ljm: a paper on prevalence of celiac disease among relatives of individuals with celiac disease:


Am J Gastroenterol. 2003 Feb;98(2):377-81. Related Articles, Links


Prevalence of celiac disease among relatives of sib pairs with celiac disease in U.S. families.

Book L, Zone JJ, Neuhausen SL.

Division of Pediatric Gastroenterology and Nutrition, Department of PediatricsUniversity of Utah, Salt Lake City, USA.

OBJECTIVE: Celiac disease is a familial malabsorptive disorder with an estimated prevalence in first-degree relatives of 10-12%. The prevalence for first-degree and more distant relatives has not been determined in families where there are two affected first-degree relatives. The aim of our investigation was to estimate the prevalence and relative risk for celiac disease in relatives of two siblings diagnosed with celiac disease. METHODS: We ascertained sib pairs with celiac disease, and then identified all living first-degree relatives and available second-degree relatives to minimize ascertainment bias. We measured IgA endomysial antibodies, a highly specific and sensitive assay for celiac disease, in all subjects without a confirmed biopsy diagnosis. For those individuals with positive serologic tests, IgA tissue transglutaminase antibody tests and human leukocyte antigen DQA1 and DQB1 genotyping were performed for additional confirmation. Individuals with positive biopsy and/or serology were considered affected. We calculated the relative risk of being affected with celiac disease using the lambda(R) statistic. RESULTS: The prevalence of celiac disease in relatives of affected sib pairs was as follows: 21.3% (13/61) of siblings (lambda(S) = 53); 14.7% (10/68) of offspring (lambda(O) = 37); 17.2% (28/163) of first-degree relatives; 19.5% (16/82) of second-degree relatives; and 17.8% (52/292) of all relatives (lambda(R) = 44.5). CONCLUSIONS: In these families, we identified a sibling risk approximately double that found in previous reports, as well as significant risk for more distant relatives, probably because of sharing of a common gene. In families where at least two siblings have been diagnosed with celiac disease, relatives are at high risk for celiac disease. Screening should be considered for all family members.

PMID: 12591058 [PubMed - indexed for MEDLINE]
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Postby ljm » Fri Apr 21, 2006 7:10 pm

Marie/Lisa
Thanks for the info, its exactly what I need, I'm going to see about necessary tests, you've given me the best possible argument for resolving this (high incidence when sibling has celiac, possibility of some symptoms being due to glutein ataxia or celiac).
I appreciate very much.
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Postby Arron » Fri Apr 21, 2006 8:06 pm

go team! Nicely done.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Nick » Mon Apr 24, 2006 2:26 pm

Lisa Bee Goode

Bravo Lisa. I have also fared well by avoiding gluten in my life despite being a former junkie for pizza, bread, etc. Unfortunately I also have to avoid dairy, legumes yeast and eggs too. I do however, feel much the better for it and after nine years on a revised diet I am now repulsed by that which was my former staple.

I concur with your mention of the high prevalence of undx'd celiacs. In my world I come upon many folks who, after avoiding gluten, have had excellent results despite not being a formal celiac.

Autoimmunity aside, processed foods are bad news for any human, especially in the quantity and frequency of our present generation.

Cheers
Nick

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Postby butterfly » Fri Apr 28, 2006 7:11 am

Certainly be tested and get the whole panel not just the antigliadin antibody test ( which many doctors will do as a first pass test) esp in the US where diagnosis of this is terrible), you need to know about the feedback on the antitissue transglutaminase.

Marie,

Could you state specifically what we should ask for in the US if wanting a complete panel of celiac evaluation?

My mom has celiac disease....diagnosed later in life. I asked my GP to test me and he ran one blood test (probably antigliadin antibody test....I'll have to check my records) which was negative.

Thanks for you assistance.
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Postby mrhodes40 » Fri Apr 28, 2006 5:02 pm

Hi butterfly
ask for the celiac panel. That'll do it. Mario Hadjivassiliou did a paper which has no abstract and a for pay citation on hidden gluten sensitivity in MS patients. I'll be getting that through the library as it interets me. Celiac disease is fairly common but rarely diagnosed in the US. It takes 2 years on average to get diagnosed here and 2 weeks in the UK, thus my comment that we do not diagnose it well here. We just are kind of behind in recognizing it. In the US few years back the diagnosis rate was 1 in 4500 when blood bank samples show that 1 in 120-250 people actually have this issue. That's many times more prevalent than MS. Gluten ataxia looks a little different and would likely get a diagnosis of "idiopathic sporadic ataxia" but COULD be mistaken for MS. There will not be oligoclonal bands, headaches are more common, but bright spots on mri and ataxia are common to both. One importatn thing is that you msut be eating gluten for agod reading onthe test. If you eat gluten free already then it wil not be as good.
There are other people who see gluten disease as much more prevalent. Kenneth FIne and MD researcher gastroenterologist tests stool samples for antigliadin antibodies and finds them in 30% of samples in people with chronic illness. His theory is that hey, this stuff harms the bowel lining and since it does that why not look for it in the bowel, maybe it doesn't have to be in the blood to cause problems for people. This idea plays nicely with the gluten free for MS idea. You can be tested and interestingly enough can have the HLA types done also through his lab finerhealth.com.
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Postby LisaBee » Mon May 01, 2006 2:55 pm

FYI to those interested on celiac prevalence:

Here is an abstract by a U.S. researcher that estimates 1% of the population are celiac:

Gastrointest Endosc Clin N Am. 2006 Apr;16(2):307-16. Related Articles, Links


Capsule endoscopy in celiac disease: diagnosis and management.

Green PH, Rubin M.

Department of Medicine, Columbia University College of Physicians and Surgeons, 161 Fort Washington Avenue, New York, NY 10032, USA.

Celiac disease is estimated to occur in about 1% of the population. The disease is usually diagnosed by serologic testing which leads to endoscopic duodenal biopsy. Because of the specificity of the visual endoscopic markers of celiac disease, capsule endoscopy may replace endoscopy and biopsy in selected patients. Characteristic endoscopic findings in the duodenum for patients who have celiac disease include reduced duodenal folds; scalloping of folds; mucosal fissures, crevices, or grooves; mosaic pattern and visible submucosal vessels. Additional studies are needed to determine the role of capsule endoscopy in the diagnosis and management of celiac disease.

PMID: 16644459 [PubMed - in process]


Here is another paper of prevalence in Swedish schoolkids. It roughly agrees with the first article

Scand J Gastroenterol. 2006 May;41(5):553-8. Related Articles, Links


Prevalence of celiac disease: Before and after a national change in feeding recommendations.

Carlsson A, Agardh D, Borulf S, Grodzinsky E, Axelsson I, Ivarsson SA.

Department of Pediatrics, Lund University Hospital, Lund, Sweden.

Objective. A national change in infant feeding recommendations was proposed in 1996 in Sweden: a slow introduction to gluten during weaning was stressed, the recommendation being introduction at 4 instead of 6 months of age. The aim of the present study was to compare the prevalence of celiac disease in healthy young children born before and after the new feeding recommendations in 1996. Material and methods. Sera from 679 children at a median age of 2.9 years (range 2.5-4.2 years) born between January 1996 and November 1997 were investigated with IgA-antigliadin antibodies (AGA) and IgA-endomysial autoantibodies (EMA) and compared with 690 age-matched children born between July 1992 and June 1993. Children with a positive test for EMA and AGA or EMA only were re-tested, and if positive at follow up, investigated with intestinal biopsy. Results. At baseline, 2.2% (15/679) children were positive for EMA and another 0.6% (4/679) for both EMA and AGA. One child refused to be re-tested and eight children were still EMA positive at follow-up. Intestinal biopsy was performed in seven children (one declined biopsy), of whom three showed total villous atrophy. Two children with EMA titers 1:640, respectively, refused further participation in the study, but were strongly suspected to have celiac disease. In total, 0.7% (5/679) (95% confidence interval (CI) = 0.1-1.4%) were considered to have celiac disease compared with 1.3% (9/690) (95% CI = 0.4-2.2%) in the control group (p=0.4217). In addition, 0.3% of the children were diagnosed with symptomatic celiac disease compared with 0.7% in controls (p=0.0134). Conclusions. The prevalence of symptomatic celiac disease declined after the infant dietary recommendations were introduced in 1996, but we could not find any difference in undiagnosed celiac disease between the screened children born before and those born after 1996.

PMID: 16638697 [PubMed - in process]
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Postby SarahLonglands » Wed May 03, 2006 3:56 pm

Hi, Lizz, I'm a trifle out of date here, but I want to wish you the best of luck with the research about celiac and your brother. As Arron said, "Nicely done, team!"

I just wanted to add a little bit about the MS direct material: I am not remotely intolerant of wheat or dairy, but have never eaten much in the way of processed food. It didn't stop me from getting aggressive SPMS though.

Please let us know how the testing goes: I didn't know about your mother and four other close family members.

Take care,

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby LisaBee » Thu May 04, 2006 2:59 pm

Here is an new abstract indicating the incidence of celiac disease may be as high as 1:67.

Curr Opin Allergy Clin Immunol. 2006 Jun;6(3):191-6. Links


Update on the evaluation and diagnosis of celiac disease.

Leffler DA, Kelly CP.

Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.

PURPOSE OF REVIEW: Our understanding of the pathophysiology of celiac disease has advanced with associated improvement in diagnostic modalities. Recent studies have placed the prevalence of celiac disease in Western populations at between 1:250 and 1:67. Celiac disease is common throughout the world and most cases go undiagnosed. Understanding the risk factors, clinical presentations and diagnostic modalities is necessary to identify and treat patients with this commonly misdiagnosed disorder. RECENT FINDINGS: Increased prevalence of celiac disease in individuals with autoimmune diseases, reduced bone mineral density and undiagnosed liver disease have been confirmed. However, celiac disease may not be associated with Down's syndrome or epilepsy. Evidence supports high sensitivity and specificity of endomysial- and tissue transglutaminase-based tests in most settings. In children, high or low tissue transglutaminase levels may preclude the need for duodenal biopsy. Cost-effectiveness studies suggest using tissue transglutaminase or endomysial initially, while distal duodenal or jejunal biopsy may confirm celiac disease in the absence of proximal changes. SUMMARY: There is insufficient evidence to support mass screening for celiac disease. However, case finding in individuals with risk factors for celiac disease is recommended. Further study is necessary to define diagnostic algorithms and target populations likely to benefit from testing.

PMID: 16670513 [PubMed - in process]
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Postby mrhodes40 » Thu May 04, 2006 6:35 pm

great post Lisabee. I am flummoxed at the idea that mass screening is not indicated. Makes you wonder how often something has to occurr to warrant regular screening doesn't it? 8O

IMHO people with MS ought to be screened period. With all due respect to the gluten free position (if it helps you then by all means do it), I still suspect that notable cases like Roger MacDougall may well have been glutan ataxia which in his time was not defined (they didn't realize it existed yet) and the merely given the label of MS for lack of a better answer. His experience may well be unique and applicable to some but not all of us with MS. BUT it might be THE issue for at least some of us. Medicine is an evolving science, not a done deal.

In my mind the "expense" of the test is utterly inconsequetial compared to the potential benefits, and by goodness if you are not positive you might try the gluten free diet for a good trial to see if it affects you positively but if not then bail feeling OK that you've tried both the blood test and a personal test. I am sensitive myself.
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Re: Family/Celiac/multiple sclerosis

Postby lyndacarol » Fri Mar 07, 2014 11:07 am

Although the issue of gluten sensitivity was discussed MANY years ago, there were many good opinions, abstracts, and information posted that may be of interest to members who joined since 2006.

Therefore, I am resurrecting this Family/Celiac/multiple sclerosis thread again.

Unfortunately, LisaBee, mrhodes, et al. no longer post here.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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