the patient celiac

Spring 2016 Celiac Research Round-Up

4 comments March 22, 2016

I figured that there’s no better way to celebrate the sixth anniversary of my celiac disease diagnosis (March 2010, I have no clue what my actual date of diagnosis was) than by scouting out the medical literature for interesting new articles. I love doing this, but lately it’s been on the back burner.

  1. “Risk of Headache-Related Healthcare Visits in Patients with Celiac Disease: A Population-Based Observational Study.” By Lebwohl, B, Alaedini, A, Green, P, and Ludvigsson, J. Published in the March 12, 2016 issue of Headache.
This was a retrospective study in which almost 30,000 Swedish patients with biopsy-confirmed celiac disease were compared with controls (people without celiac). The research team found that those with celiac disease had 50% more doctors’ visits for headaches than the control population did. Interestingly enough, patients with elevated celiac antibody levels, but normal biopsies (aka "potential" celiacs) also had a significantly higher risk of headaches.


Take Home Point(s): Patients with celiac disease have a high risk of headaches. Headaches can be a presenting symptom of celiac disease.

  1. “HLA typing using buccal swabs as accurate and non-invasive substitute for venipuncture in children at risk for celiac disease.” By Adriaanse, M, et al. Published in March 2016 issue the Journal of Gastroenterology and Hepatology.
The two main genes associated with the development of celiac disease are HLA-DQ2 and HLA-DQ8. Testing for the celiac genes is typically done via obtaining a blood sample (requiring a blood draw, which can be challenging in toddlers and young children). In this study researchers compared gene analysis from buccal swabs (tissue samples obtained from swabbing the inside of the mouth) vs blood samples. They found that the buccal samples were of good enough quality to do gene analysis in all 77 subjects who were tested.


Take Home Point: Celiac genetic testing can now be performed in children without having to have blood drawn. This testing can also be done at home.

  1. “Decrease by 50% of plasma IgA tissue transglutaminase antibody concentrations within 2 months after start of gluten-free diet in children with celiac disease used as a confirming diagnostic test.” By Lund, F. et al. Published in the April 2016 issue of the Scandinavian Journal of Clinical Lab Investigations.
This article’s title is a mouthful, so bear with me! In children with biopsy-confirmed celiac disease, TTG-IgA antibodies on average decrease by 50% after 2 months on the GF diet.  In this study researchers examined a group of children who had suspected celiac disease (high TTG-IGA antibodies and symptoms) but who went GF without ever having a small bowel biopsy.  They found that this group of children (suspected or presumed celiacs) also experienced a 50% decrease in celiac antibody levels after starting the GF diet.   The researchers conclude that the significant response to the GF diet can be used as a way to to diagnose celiac disease.


Take Home Point(s): TTG-IgA antibodies decrease by half after two months in children with celiac disease after the GF diet is initiated.  In the future, the response to the GF diet may be used as a way to diagnose celiac disease in children who have not had biopsies.

  1. Infant feeding and risk of developing celiac disease: a systematic review.By Silani, S., Agostini, C., Sanz, Y., and Guandalini, S. Published in BMJ Open on January 25, 2016.
The authors reviewed 16 studies for evidence for the association of breast feeding, breastfeeding duration or the timing of gluten introduction and the later development of celiac disease. They concluded there is no evidence on the optimal breastfeeding duration or the effects of avoiding early (<4 months of age) or late (≥6 or even at 12 months) gluten introduction in children at risk of celiac disease.


Take Home Point: At the present time, there is no scientific evidence that the timing of gluten introduction and/or breastfeeding can prevent the development of celiac disease.

  1. Celiac Disease and Drug-Based Therapies: Inquiry into Patients Demands.” By Branchi, F., et al. Published in the journal Digestion in Jan. 2016.
This was a survey of 372 Italian celiac patients. Although 88% of those sampled accepted the gluten-free diet as treatment, 65% believe there is a need for alternative therapies for treatment of celiac disease.


Take Home Point: Per the authors, The GF diet is favorably accepted by most celiac patients. Nevertheless, a proportion of patients pronounce themselves in favor of the development of alternative drugs.”

Have any of you came across any recent celiac research of interest? If so, please share in the comments section.


In reply to ana pimenta.
Thanks so much for sharing dear Ana! I was just thinking of you the other day and wondering how you’re doing. I would love to connect via email this summer :)
7/19/2016 4:52:50 PM
ana pimenta
Am J Gastroenterol 2016; 111:561–567; doi: 10.1038/ajg.2015.434; published online 2 February 2016
Neurological Dysfunction in Coeliac Disease and Non-Coeliac Gluten Sensitivity
Marios Hadjivassiliou , MD 1 , Dasappaiah G. Rao , MD 1 , Richard A. Grünewald , DPhil 1
, Daniel P. Aeschlimann , PhD 2 , Ptolemaios G. Sarrigiannis , MD 1 , Nigel Hoggard , MD 3
, Pascale Aeschlimann , BSc 3 , Peter D. Mooney , MD 4 and David S. Sanders , MD 4
OBJECTIVES: Non-coeliac gluten sensitivity (NCGS) refers to patients with primarily gastrointestinal symptoms without enteropathy that symptomatically benefi t from gluten-free diet (GFD). Little is known about its pathophysiology, propensity to neurological manifestations, and if these differ from patients with coeliac disease (CD). We investigated the clinical and immunological characteristics of patients presenting with neurological manifestations with CD and those with NCGS.
METHODS: We compared clinical, neurophysiological, and imaging data of patients with CD and NCGS presenting with neurological dysfunction assessed and followed up regularly over a period of
20 years.
RESULTS: Out of 700 patients, 562 were included. Exclusion criteria included no bowel biopsy to confi rm CD, no HLA type available, and failure to adhere to GFD. All patients presented with neurological
dysfunction and had circulating anti-gliadin antibodies. Out of 562 patients, 228 (41%) had
evidence of enteropathy (Group 1, CD) and 334 (59%) did not (Group 2, NCGS). The most common
neurological manifestations were cerebellar ataxia, peripheral neuropathy, and encephalopathy. There
was a greater proportion of patients with encephalopathy in Group 1 and with a greater proportion
of neuropathy in Group 2. The severity of ataxia did not differ between the two groups. Patients in
Group 1 had more severe neuropathy. All patients from both groups responded to gluten-free diet.
Anti-tissue transglutaminase (TG2) antibodies were found in 91% of patients in Group 1 and in
29% of patients in Group 2. Comparison between those patients in Group 2 with HLA-DQ2/DQ8 and
those without as well as those with positive TG2 compared with those with negative TG2 antibodies
identifi ed no differences within these subgroups. Serological positivity for TG6 antibodies was similar in the two groups (67 and 60%).
CONCLUSIONS: The neurological manifestations of CD and NCGS are similar and equally responsive to a GFD suggestive of common pathophysiological mechanisms.

Best regards, Ana Pimenta
7/19/2016 4:52:32 PM
Linda Fortson
This is to Jess:
I have a story, I should say my family has a story.

My Sister, Ann, at age 46, was given the diagnosis of CD but none of the other siblings; another sister, Deany, and brother (Al) and myself paid much attention to it. At the time my mother was critically ill in the hospital. Ann wanted them to test Mama for CD and they looked at her like she had 3 eyes.

This was in 2009. By 2010, my Dad died at the age of 94. As the service ended and family left, Al made a dive for the pool in his backyard. He had been in terrible pain for several days with a terrible rash on his arms and back but had said nothing to us. When he had a chance to go to the doctor, he asked if anyone in the family had CD, and he had to say “Yes”. So he was given an apt. to be checked out and he is now positive for CD.

Our mother passed away the in 2011. Then it was Nov. 2011 following my mother’s death, My husband and I were shopping and stopped for a bite and I had to make a mad dash to the restroom. This was the beginning of a winter long stretch of diarrhea and constipation. Had a colonoscopy in the Spring and it was IBS. Still could eat pretty good.

This past Nov. 2015 had to have my Gallbladder removed and the attacks of diarrhea and constipation were more extreme causing me to miss work and the weakness I was feeling was making it difficult to concentrate and do my job. I went back to my Internist in March for help and had a lot of blood tests done to see what could be causing the exhaustion. I threw out the CD just because my Ann and AL brother have it, plus now my Ann’s son has it and now my son has something that is similar to gluten sensitivity with a rash on his back when he eats pizza.

My blood test came back indicating CD. I’ve read so much on the Internet about CD. Both my parents are gone only one sister left who does not have it. I have one daughter left who at 45 has no signs of it
yet. For that I am thankful.

I had so many of the thyroid problems that go back to my early teens, menstrual problems, miscarriage, hair loss, brittle nails, depression, seizures, migraines, etc. arthritis, spinal stenosis. Both my Dad, brother and I have had surgery for that.

I could go on and on with things that I have read that seem to be in the category of CD. I am on so much medication for seizures and I can’t help but wonder if that is the cause. I wasn’t born with them they came in my early 30’s after about 8 years of trying to get pregnant, I finally had two children with the help of clomid and then came the complex partial seizures.

I could go on but I could also write a book but, it wouldn’t take away a life that I have fought to have and at age 72, after staying home until my children were grown, I went back to my career. A decision I do not regret.

I’m interested in your comments on so many in one family having CD. All seeming to be documented except for my son who has no insurance at the moment and seems to be doing fine eating correctly.

Coming from a small town during a time when all doctors were general practioneers, I think played a part in why this wasn’t diagnosed in one of my parents and I would guess it would have been my father. doctors
7/19/2016 4:51:47 PM
Rafal Swiecki
I am not a medical professional, but an engineer with common sense and this is what I discover:
My body can’t tolerate:
1. Cow’s milk, while it has no problem with goat’s milk.
2. Any form of breads made of flours and yeast, while it has no problems with breads made with natural ferments sourdough/levain ( )
So, I became interested in the use of fermentation to produce allergen free food.
Now, I eat pancakes made of whole wheat, rye or oats flour, sea salt, related ferment and water.
To develop a proper ferment, I mix a sauerkraut juice with the flour in question, water and raw garlic cloves in glass jar covered with muslin fabric and placed in a warm dark place for few days.
I replaced vinegar with kombucha ferment. Since, I have access to Ilex guayusa leaves, these replace tea leaves in making the kombucha.
I ferment as well cabbage, carrots and apples – sauerkraut, beets – beet kvass and cucumbers – pickles.
I ferment cow milk with kefir grains.
The fermentation is a forgotten art of cooking.
7/19/2016 4:50:49 PM
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