Notes from the CDF conference: Part 1

[Guest guest]

I just returned from the Celiac Disease Foundation’s 20th anniversary conference in LA yesterday and wanted to pass along some bits and pieces of interest.

Here are a few notes from the keynote speakers. Keep in mind that they all spoke very fast and gave lots of information. I only wrote down a few points of interest to me; any inaccuracies are mine.

From Dr. Green, Director, Celiac Disease Center Columbia University and author:

The incidence of CD in the US has increased from .2% 50 years ago to over 1% today (based on blood from drawn soldiers in the 1950’s and frozen since then) . He attributed this to environmental changes, but they don’t know exactly what changes caused the increase. (My thought: today’s hybridized wheat is more toxic than varieties 50 years ago; could this account for the increase?)

Babies born by C-section have an increased risk of celiac disease. Perhaps caused by the difference in intestinal bacteria compared to babies who are vaginally born.

In Finland, 70% of celiacs are diagnosed.

To diagnose CD in those with dermatitis herpetiformis, a biopsy can be taken 1 milimeter from a blister.

Dental enamel defects are predictive of CD in childhood (but not in adults due to dental work).

Strict adherence to the gluten-free diet lessens the risk of developing associated autoimmune diseases.

The best panel for serological testing (blood tests) for CD: Tissue Transglutaminase (tTG), Immunoglobulin A (IgA), and Diamidated Gliadin Peptide (DGP). The anti-endomysial antibodies (EMA) test is expensive and not necessary. DGP is the best test for kids. (Note: don’t make any decisions based on this information alone; remember, I was just jotting down notes and may not have picked up all the details.)

The biopsy is a tarnished gold standard for diagnosis because many doctors do not take the required 4 to 6 pieces necessary for diagnosis. Also, it requires an experienced pathologist to interpret the results.

With regard to gluten-sensitivity, there is a problem knowing how common this diagnosis is because there is no ICD code for it yet. In those with gluten-sensitivity there is evidence of damage to the microvilli and epithelial abnormalities. The incidence of gluten sensitivity may be greater or equal to that of CD.

C. Adelman, M.D., of Alvine Pharmaceuticals, Inc.:

Three companies are working on pharmaceutical products for celiacs, each with a different approach: Alba is working on trying to block absorption through controlling the permeability of the intestine. Nexpep’s approach is to tolerize T cells to peptides to decrease inflammation. Alvine hopes to use a combination of 2 proteases to degrade gluten in the stomach (this approach is a compliment to the GF diet, not a replacement).

Sheila Crowe, M.D., Gastroenterologist at the University of Virginia, wife of a celiac, and author of Celiac Disease for Dummies:

70 % of celiacs on a GF diet should see clinical improvement (change for the better of symptoms) in 2 weeks, and most will improve by 6 weeks. Serelogical improvement (blood tests) should improve in 4 to 6 weeks. Histological (endoscopy) improvement should be seen in 2 years. Neuropathy may or may not improve.

Follow-up: check antibodies until normal. Check bone density each 2 years. Repeat biopsy (controversial).

Genetic testing: 95% of celiacs have DQ2; 5% have DQ8.

Risks of untreated CD: mal-absorption, anemia, decreased quality of life, infertility, malignancy (4-fold increase, but that is still a really low risk), refractory celiac (leads to a small increase in mortality) (this is a partial list; I didn’t get them all).

Fertility improved in both men and women when they were GF.

Non-response to diet could be caused by coincident disorders: lactose intolerance, pancreatic insufficiency, small intestinal bacterial overgrowth, microscopic colitis, irritable bowel syndrome. Untreated CD can lead to inflammatory bowel disease.

Other causes of non-response to diet: Food Protein Induced Enterocolitis; adverse reactions to “FODMAPS”: Fermentable Oglio- Di- and Mono-Saccharides And Polyols (the best I can understand is that these are non-allergic gastrointestinal reactions to certain foods; I don’t know why it’s not FODMSAP).

5% of celiacs have Refractory CD (more men than women have it). (My comment: perhaps this is related to the fact that more women than men are diagnosed with CD: men wait until they are sicker to seek diagnosis.) There are two types of refractory CD based on the type of t cells involved. Type I: phenotype normal; Type II is associated with monoclonal expansion of IEL bearing CD3 and is associated with intestinal lymphoma. For more information, follow this link to Celiac.com .

While mortality in those with CD is higher than normal, survival on a GF diet is better than CD that goes untreated (I’m not sure whether to say “Whew!” or “Duh!”).

That’s all I have time for tonight. Tomorrow I’ll try to finish up the speakers’ notes and talk about all the amazing GF vendors there.

Pam