the patient celiac

Fall 2014 Celiac Disease Research Round-Up

11 comments November 21, 2014

I haven’t done a “journal club” type post for a while on here, and there have been some really interesting studies published in the last 4-6 weeks, so here goes…

1. “Altered Duodenal Microbiota Composition in Celiac Disease Patients Suffering from Persistent Symptoms on a Long-Term Gluten-Free Diet.” Authors: Wacklin, P., Laurikka, P., Lindfors, K., et al. Published online in the American Journal of Gastroenterology on Nov. 18, 2014.

Background: Many celiac patients continue to have symptoms while on a strict GF diet.

Objective: To see if there is a relationship between persistent digestive symptoms and abnormal intestinal microbiota (gut bacteria) in patients with treated celiac disease.

Methods: Researchers compared gut bacteria in 18 celiac patients with persistent symptoms and compared them to 18 celiac patients who had no symptoms. Both groups were on the GF diet, and all 36 had experienced a normalization of celiac antibodies and intestinal healing prior to the study.

Results: Celiac patients with persistent symptoms had less diverse bacteria in their small intestines as well as increased numbers of Proteobacteria species.

Conclusion: Some celiac patients may have persistent symptoms due to dysbiosis (an imbalance of gut bacteria).

My opinion: Further evidence that probiotics may someday be part of the medical “standard of care” for celiac disease. As some readers may already know, I am a huge fan of probiotics.

2. “Bone Mineral Density at Diagnosis of Celiac Disease and after 1 Year of Gluten-Free Diet.” Authors: Pantaleoni, S., Luchino, M, Adriani, A. et al. Published online in The Scientific World Journal on October 14, 2014.

Background: Celiac disease is associated with problems with low bone mineral density (osteopenia and osteoporosis).

Objective: To evaluate osteopenia and osteoporosis in patients with newly diagnosed celiac disease, and to see if bone mineral density changes after one year of being on the GF diet.

Methods: 169 subjects with celiac disease had their bone mineral density checked by DXA scan at diagnosis and then at the 1 year GF mark.

Results: The initial study population had 169 subjects. 42% of the subjects with celiac disease had normal bone mineral density at time of diagnosis and were excluded from further analysis. 76 subjects were retested at one year, and there was a significant improvement in bone mineral density average scores across the board.

Conclusion: Over half of newly diagnosed celiacs have low bone mineral density, especially if diagnosis is when > 30 years of age.  The authors conclude that DXA scans should be offered to those newly diagnosed with celiac disease.

My opinion: I did not have a DXA scan performed when I was diagnosed in 2010 because my medical insurance refused to cover it. Looking back, I probably should have fought harder for coverage, but at least this journal article made me feel better that, either way, my bone mineral density has probably improved quite a bit since then.

3. The changing clinical profile of celiac disease: a 15-year experience (1998-2012) in an Italian referral center.” Authors: Volta, U., Caio, G., Stanghellini, V., and DeGiorgio, R. Published in BMC Gastroenterology, 2014, 14:194, online November 18, 2014.

Background: Many patients with celiac disease have “atypical” symptoms, or, in some cases, no symptoms at all.

Objective: To see if celiac patients’ presenting symptoms have changed over time.

Methods:  A retrospective review of 770 patients with celiac disease over a 14 year time period.

Patients were classified into 3 groups (Oslo definitions):

  1. Classical celiac disease: malabsorption syndrome with diarrhea and weight loss
  2. Non-classical celiac disease: Gastrointestinal symptoms (except for diarrhea) and extraintestinal symptoms
  3. Subclinical celiac disease: no symptoms or mild symptoms
The 3 groups were compared over 2 time periods, 1998-2007, and 2008-2012.

Results:

1998-2007: 47% classical, 43% non-classical, and 10% silent/subclinical

2008-2012: 58% non-classical, 29% silent/subclinical, and 13% classical

Frequent gastrointestinal symptoms in all subjects: diarrhea (27%) , bloating (20%), aphthous stomatitis (canker sores) (18%), constipation (13%), and gastroesophageal reflux disease (12%).

Frequent non-gastrointestinal symptoms: anemia (34%), abnormal liver function tests (29%), and recurrent miscarriage (12%). 52% had abnormal bone mineral density and 26% of the celiac patients in this study population also had autoimmune thyroiditis.

Conclusion: The clinical presentation of celiac disease has markedly changed over time, with the bulk of celiac patients having a non-classical presentation at time of diagnosis.

My opinion: Based on these findings, I feel like everyone should be screened for celiac at some time during young adulthood, as reflux, constipation, etc. are such common symptoms in the general population.

As always, thank you so much for reading, and please feel free to share any research that you have come across and found to be interesting in the comments section.

 

 

Comments
Janice
In reply to IrishHeart.
My son was diagnosed with Celiac Disease 5 years ago. He is very careful not to ingest gluten but still has severe symptoms. It’s reassuring to read study #1 and know that others are also experiencing these problems, but we need a strategy for changing the microbiota. We have tried all sorts of diets and supplements. He has been taking probiotics for over a year but still has dybiosis. I recently read that 70% of our prebiotics come from wheat so I am going to try to increase vegetable intake and supplement with a prebiotic powder. What do you think?
Thanks,
Janice
7/21/2016 5:59:38 PM
Jess
In reply to Sue Harbin.
Hi Sue,
I am sorry to hear about your new problem of ataxia. There is a clear association between celiac disease and ataxia. Ataxia is one of the most common neurological complications associated with celiac disease. Dr. Hadjivassiliou in the UK has done most of the research on gluten ataxia. A link to one of Dr. H’s articles is here. Christine Boyd wrote a very good article about Gluten Ataxia for Living Without Magazine in 2012. The link to her article is here.

I hope this helps. I will post more references as I find time to. All the best to you.

Jess
7/21/2016 5:58:39 PM
Sue Harbin
i was DX’d with Celiac in 1998. Despite the routine removal of wheat, rye, barley and oats from my diet, I have had to remove GMOs and pesticides also. I had my DNA tested by Dr Luca, Miller School of Medicine in Miami, who found that a recessive gene was causing an autoimmune response in my feet and hands and now my cerebellum, called demylenating cerebellar ataxia. My balance is extremely poor, causing me to fall frequently despite strengthening PT x3 weekly. My feet have become extremely painful lately, making walking nearly unbareable.
I don’t know of any recent studies regarding these symptoms but would appreciate any information to share with my doctors, who are at a loss also.
7/21/2016 5:57:48 PM
Sharon
Had an undiagnosed anemia as a child and was plagued with severe asthmatic bronchitis on antibiotics from April to November every year until age 12.

In my early 30s (two plus decades ago) became so anemic was one step away from transfusion. Zippo iron stores at the time. Hematologist seeing no improvement with iron therapy was ready to perform a bone marrow biopsy until he did an osmotic fragility test because my spleen was so enlarged, and I had hereditary spherocytosis – which served to assist numerous relatives and their children who had varying degrees of anemia – one close to a splenectomy as I had been. Massive doses of folate and iron eventually reversed it. Prior to that also had intestinal candida treatment so I got on the probiotics back then and still to this day.

Around that time I started to lose height and prior to that had been wearing a lift due to a shorter leg that had been causing back issues specifically sciatica. Suddenly lost more length in that left leg requiring a lift adjustment inside my shoe and outside. So started my bone density testing that then and every few years and post-menopausal have thankfully been perfectly normal despite with my celiac diagnosis three years ago – actually a few years before that having Vit D level in the teens. That is what clued my doctor into testing for the celiac.
My point to all of this? Celiac presents so differently in each individual which is part of the challenge for MDs and their patients in terms of assessment of collateral damage and subsequent treatment. I believe that I read in Dr. Green’s book that depending upon where the villi damage lies in the small bowel – some folks have it throughout others just the upper or middle or lower – determines what vitamin or mineral deficiencies will present as certain ones are absorbed in particular areas of the small intestine. My calcium levels were fine not sure about phosphorus but somehow the low D gratefully didn’t Impact my bone density – it’s all a complex process anyway hormonally and component wise.
Talked to my hemotogist whom I had not seen in decades. He said today celiac testing would have been on the top of his list.

In my 20s had been diagnosed with Raynaud’s. Also in Dr. book was the one line that shook my being: When he sees a patient diagnosed with Raynaud’s he thinks celiac.
Despite all of this I finished college and grad school with a technical career in healthcare and biotech – and never missed more than a few days of work. Thought frozen shoulder, back issues, tendonitis, bowel issues, joint pain, etc. were the norm that is until my husband had to help me get out of bed and I was going bald.
The diagnosis saved my life but to fully recover you need to ID what other than gluten makes you ill – eliminate it – and have your doctor ID your vitamin and mineral deficiencies and get treatment/supplementation. Jennifer Esposito in her book noted that her doctor advised liquid vits when she was not effectively absorbing tablet forms.
7/21/2016 5:57:09 PM
dkwtexas
In reply to Jess.
Thank you Jess
7/21/2016 5:56:48 PM
Jess
In reply to dkwtexas.
Hi Donna,
Thanks so much for writing. I am sorry to hear about your grandson and hope that he starts to feel better soon.
I am not able to give out medical advice on this page, but I did have no qualms about starting my own youngest, C, on a probiotic when she was an infant :)
Jess
7/21/2016 5:56:25 PM
Jess
In reply to IrishHeart.
Thank you IH. I agree with you on probiotics and I think we are just a few years away from them becoming part of the “standard of care” for those of us with gluten issues. We should probably all buy stocks in them now!
Jess
7/21/2016 5:56:05 PM
Jess
In reply to Laura.
Hi Laura,
Thank you so much for taking the time to comment and share info. This blog has become my neglected “5th child” these days, so I apologize for my delay in getting back to you.
I am intrigued by the oats study, as some previous research has shown that a subset of us may react to oats (I do not and can eat oats without a problem). The study that you cited did get a lot of press and it seems to have started to freak people out in social media world. I was unable to pull the entire article to read, but it appears that the authors concluded that “the low rates of T cell activation after a substantial oats challenge suggests that doses of oats commonly consumed are insufficient to cause clinical relapse, and supports the safety of oats demonstrated in long-term feeing studies.” So the authors conclude that oats are safe, despite the immune reaction elicited.
I am not surprised by the research that those of us with celiac react to non-gluten portions of wheat…I think that our innate immune systems are probably doing this as an extra precaution to prevent those of us with celiac from ingesting wheat. As to whether or not this relates to other food intolerances, I am not sure. The more that I read and learn, it seems that the additional food intolerances (and possible innate immune reactions to other foods) are somehow mediated by our gut bacteria/microbiomes and our mast cells. I hope to share more about this on my blog as I learn and read more.
Thanks for reading and I hope you are well.
7/21/2016 5:55:45 PM
dkwtexas
Jess, I have a question non related to article. I have a 9 month old grandson that has a double ear infection. He’s underweight for his age. He weighs 17 lbs and was not breast fed. Would you think it wise to put him on a probiotic? He to me is not thriving like I would like. His doctor is not concerned. Maybe its the grandma just worrying. Just cant help it though. He’s always sick. Any thing will help. Thank you Donna
7/21/2016 5:55:18 PM
Irish Heart
As you know, I am a huge ” probiotics pusher” as I agree that a healthy gut population is key to
overall good health. My doctor tested me back in 2010 and the results showed no detectable good bacteria…none.!..that seems impossible, but explains so much. Years of treating gut symptoms with antibiotics had upset the balance and back then, I knew nothing about the GI tract or gut health.
The more I read about the need for a healthy microbiome, the more I hope to see doctors accepting
that probiotics may be a good addition to everyone’s regime. (and not just celiacs)

I also agree with your opinion on screening and DXA scans. I had one done after DX and again 2 years later and I showed some improvement and I suspect yours has as well. :)
Thanks , Jess!
7/21/2016 5:54:42 PM
Laura
Thank you so much for this roundup. Your blog is such a useful resource for celiac sufferers like me who are not MDs. I’d love to hear your thoughts about two new studies.

One seems to say that 8% of celiacs may react to a protein in oats: Hardy, Tye-Din, Stewart, et al. Ingestion of oats and barley in patients with celiac disease mobilizes cross-reactive T cells activated by avenin peptides and immuno-dominant hordein peptides. Journal of Autoimmunity, 2014; DOI: 10.1016/j.jaut.2014.10.003

Another seems to say that celiacs may react to non-gluten components of wheat: http://pubs.acs.org/doi/abs/10.1021/pr500809b

Taken together, do you think that these studies mean that at least some celiacs may react to a wider range of proteins than just gluten? Could this explain why so many people with celiac disease find that they also react to soy, casein, etc.?
7/21/2016 5:54:17 PM
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