Celiac disease

Celiac disease, a gastrointestinal disorder that may affect up to 3 million people in the US, has long been underdiagnosed and undertreated. The Wall St. Journal has an interesting article today exploring why that is so. The bottom line: celiac can be completely alleviated by avoiding gluten, so there is no real need for a pharmaceutical product or medical treatment once the disease is diagnosed. As a result there has been little funding for the disorder and patients often go for decades not understanding what’s wrong with them. The Journal article says that celiacs experience symptoms for 11 years on average before they are diagnosed. Along the way they may end up being treated for all kinds of other things that they don’t actually have.

The article doesn’t mention it, but the food industry is responding and may be the key to improving the situation. For example, Whole Foods has many products certified as gluten free and an entire section devoted to Celiac on its website. Consumer resources such as the Gluten Guard databank help consumers find gluten free foods. Consumers can even use a handheld barcode scanner to check on products in the supermarket.

It’s probably healthier for everyone if celiac is addressed outside of the medical establishment.

December 9, 2005

6 thoughts on “Celiac disease”

  1. There is still a need for research to define the types of wheat-induced illnesses, of which classical celiac disease is only one type. For years the dogma was that there were no common IgG-based food sensitivities, even though doctors knew of many patients with positive wheat IgG tests and relief of symptoms following avoidance of wheat. This is finally changing, as indicated by the research paper linked to below (Zar et al. 2005 American J Gastroenterology 100:1550). The take-home message is that you should not assume that a food sensitivity to wheat is necessarily classical celiac disease. No one really knows the prevalence of the IgG-based wheat sensitivities; they may turn out to be of similar importance to classical celiac disease.

    http://www.amjgastro.com/showContent.asp?DID=4&SessionGUID=48BB08A3-60A7-4299-AFF3-B0E49ED0B5F9&id=ajg_4134872005&type=abstract

    Food-Specific Serum IgG4 and IgE Titers to Common Food Antigens in Irritable Bowel Syndrome

    METHOD:One hundred and eight IBS [52 diarrhea-predominant (D-IBS); 32 constipation-predominant (C-IBS); 24 alternating (Alt-IBS)], and 43 controls were included in the study. IgG4 and IgE titers and skin prick testing (SPT) to 16 common foods including milk, eggs, cheese, wheat, rice, potatoes, chicken, beef, pork, lamb, fish, shrimps, soya bean, yeast, tomatoes, and peanuts were measured.

    CONCLUSION:Serum IgG4 antibodies to common foods like wheat, beef, pork, and lamb are elevated in IBS patients. In keeping with the observation in other atopic conditions, this finding suggests the possibility of a similar pathophysiological role for IgG4 antibodies in IBS.

  2. David, this is an excellent blog site if I may say, and hugely relevant to the shakey health economics of the NHS in the UK. I have just recommended and linked you to NHS BLOG DOCTOR

    In the UK all coeliac sufferers are entitled to gluten-free food on prescription – i.e free to them and paid for by the tax payer.

    So when I issue a prescription for a coeliac patient now, it is like a large grocery order (bread, pasta, biscuits, savouries…the list seems endless)and indeed the prescription request is often dropped in on the way to the weekly supermarket shop.

    Crazy.

    What happens in the US? Presumably, the patients pay for it all themselves?

    Apologies for the quaint spelling of “coeliac”!

  3. Celiac disease is not just a gastrointestinal disorder.
    I recently have been diagnosed (in my early 40s). I have atypical symptoms and had neuropathy as my presenting symptom. Was then diagnosed with B-12 deficiency, but neuropathic sx did not improve despite parenteral B-12. Fast forward 2 years – finally found a neurologist (my 3rd one) who suggested celiac neuropathy as the cause of my symptoms. Duodenal bx showed “chronic inflammation” c/w celiac dz. Given that my mother had similar symptoms as me and died from a T-cell NHL, I figure that I am at risk of lymphoma as well. So the disease is not as benign as it appears. And “avoiding gluten” is no easy task.
    What needs to be done is to determine a better way to screen.
    Few doctors even consider celiac dz in adults. I work at a teaching facility/medical center and curbsided one of the GI docs to ask about celiac dz after it was suggested by my neurologist. The GI guy dismissed it as a differential diagnosis because I would have “malabsorbtion” (I am overweight).
    So, despite the recent NEJM review articles and many articles showing that the incidence is likely 1 in 250-300 in the US population, it is grossly underdiagnosed.

  4. We list celiac disease as one of the most common diseases in our Neurological Syndromes diagnostic software (www.simulconsult.com/neurologicalsyndromes/) since celiac disease frequently leads to neuropathy. If the GI folks miss the diagnosis the neurologists should get it, but it is best to catch it much earlier.

  5. The bottom line is that there is no profit to be made by physicians or pharmaceutical companies in the correct treatment of celiac disease. The WSJ article strongly implied that, at least in the USA, celiac is actually being addressed outside of the medical establishment, and that thousands of patients are suffering needlessly as a result.

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