Research - Hungarians, Celiac and IBD

Beautiful Budapest and the "Chain" Bridge

Raleigh-Durham is host to a vibrant Hungarian community, and you don't find that just anywhere in the US.  The diaspora of Hungarians since the second world war has led to some notable communities forming in Toronto, Canada, and Chigago, IL.  But smaller ones exist here and there.  Today's article is part tribute and part informational.

I was once proud to be partly Hungarian, now I feel like I have to explain my pride in it.  I may not be able to control what happens politically, and I  even condemn some of the actions taken by Hungary today (Syrian refugees).  But I can keep healthy, and celebrate those things that are going right... like Celiac research by brilliant Hungarian scientists.

So let's explore the special Hungarian specific risk of IBD with Celiac today.  This discovery by Hungarian scientists could explain part of my experience of my grandmother's health.  Her health mirrors mine quite a bit.  She might have been, like many old world parents, "too strict for me" but I still loved her.  I do wish she'd have gone to a doctor though.  Then I wouldn't have to guess so much. Many of my family are "doctor averse" and usually for very good reasons.  Maybe we can shed some light into the specific health issues of Hungarians today.   

Prevalence of inflammatory bowel disease among coeliac disease patients in a Hungarian coeliac centre
BMC Gastroenterol. 2015; 15: 141.
Published online 2015 Oct 19. doi:  10.1186/s12876-015-0370-7
PMCID: PMC4612406
Dorottya Kocsis,1 Zsuzsanna Tóth,2 Ágnes A. Csontos,1 Pál Miheller,1 Péter Pák,3 László Herszényi,1 Miklós Tóth,1 Zsolt Tulassay,1 and Márk Juhász


Fifteen years ago, an adult CeD centre was founded at Semmelweis University, 2nd Department of Internal Medicine, aiming to diagnose, care and follow-up CeD patients in a uniform manner. The number of treated adult patients has reached 300 by 2015, 50 % from Budapest and 50 % from the countryside. Thanks to the numerous presentations and publications on the activity of this adult CeD centre nationwide, this adult centre has gradually become a referral centre accepted and [sought] by every gastroenterology outpatient settings in Hungary. Focusing on the closer region of our centre, the proportion of celiac patients ever recorded in this centre is estimated to be 30–40 % of all adult celiac patients diagnosed and living in the central region of Hungary, with a total number of inhabitants of approximately 2.5 million people. Concerning IBD, the same department is one of the 11 centres of Hungary, having a state permission to provide IBD patients with biological therapy. The aim of this study was to establish the prevalence of IBD in our coeliac centre over a 15-year-long study period.

(later in the article) In our setting, in patients with both CeD and IBD, initial CeD serological testing were performed in most of the cases with EMA, which are highly specific for CeD and are not found in IBD [22]. tTG can be false positive in some chronic disorders such as type 1 diabetes mellitus and chronic liver diseases. Di Tola et al. and Farrace et al. both detected increased tTG IgA antibodies levels in patients with CD and UC [23, 24]. These results suggest positive tTG autoantibodies may be a [phenomenon] of autoimmunity and loss of specificity in CeD [25].

Alphabet soup:
CeD -  celiac disease, illness of the small intestine (with other downstream autoimmune effects)
CD - Crohn's disease, illness of the large intestine or "bowel"
UC - Ulcerative Colitis, illness of the large intestine
EMA - one of the official tests for Celiac disease, but not the primary screening test
tTG and IgA - the official screening test used in the US to detect Celiac disease
Note:  they use commas (,) for decimal points (.)

So we're talking about 30-40% of all Hungarians who have Celiac Disease, half of which are living in Budapest.  And they are now going back, 15 years later and studying the trends they saw.

I noticed for instance they say that IBD often follows Celiac diagnosis, with a delay of 5-10 years.  And they discuss at the end of my excerpt, a "loss of specificity" of tests. 

They're using EMA testing, for good reasons given.  This is different from the standard screening test in the USA, tTG+IgA. The way this reads, it suggests to me that tTG and IgA could be detecting (when positive) either Crohn's or Ulcerative Colitis, both diseases of the bowel, not the small intestine.  They also then cover the other bet... people without evidence of Celiac, but with Crohn's disease have also shown vilious atrophy in the small intestine.  "However, [a] number of studies [have] found intraepithelial lymphocytosis and villous atrophy in CD patients without any evidence of CeD."

This is leaning toward a spectrum of gut illness in Hungarians.  It may begin from either the bowel side or the small intestine side.  It may be triggered by gluten or it may be more general ("loss of specificity").  It may be the cause or result of liver problems or diabetes type 1.

My take home message about it is that I should keep a watch on any gut health changes because one of these illnesses is already bothering me.  They've made a case for a link in Hungarians between Celiac and IBD, and that the prevalence is higher among Hungarians than other groups:

The prevalence of CeD (1:100) multiply exceeds that of IBD (CD 0,1–16:104, UC 0,5–25:104) in general population [8]. Previous studies showed, that the prevalence of IBD is 5–10 times higher in CeD compared with that of the general population [912].  [......]  In our cohort of patients with CeD the prevalence of IBD was 3,2 %.

My grandmother's health showed this effect.  She had what she considered a  mild form of the "gut illness" that ran in our family.  But I look at her in pictures and I can see the thyroid damage, which leaves a specific signature on the structure of the face.  Both of her daughters are and were great beauties and so is her grandchild, my cousin.  Yet my grandmother's face doesn't show it.

As I get older, and especially when I'm sick and before my thyroid was properly medicated, I started to look like her before I was even 40.  After several years I visited my family and they hurtfully said "awww, you were once so beautiful."  I'm sure they were just being honest.  But the truth is, I already knew and I could see it on my face.  The truth hurts, and it's nobody's fault, but it might have been better to not say it out loud.

We're talking so often about "anxiety" and "depression" when we discuss Celiac online.  Why isn't it more popular to discuss the face changes?  How can a person be confident and happy if their face isn't just getting older, but becoming distorted by thyroid illness (secondary to gut problems triggered by gluten in my case)?  The search for beauty could just as well be described as a search for health.  Women know what they're talking about.

So keep in touch with Hungarian science because we haven't really had a chance like this in decades:  to benefit our specific health based on current studies.  The long dark night of Hungarian medicine is over and we are making contributions once more, as we always did.  Let it also benefit those of us in the diaspora, who certainly need some personalized medicine from time to time. Good health to you!


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