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Sprue-Nik Press on Distillation

The Sprue-Nik Press, published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan, Volume 7, Number 5, July/August 1998. Dr. Peter Ernst is Senior Scientist at the Dept. of Pediatrics, University of Texas Medical Branch. He is the son of Canadian Celiac Association (CCA) co-founder Kay Ernst, and is a celiac himself.

During Dr. Ernst’s talk, he indicated his philosophy toward celiac disease which is, "Don’t exclude anything if it is unnecessary." As a result he made three assertions which may provoke no major objection from Canadian celiacs but are controversial among US celiacs. Dr. Ernst’s first assertion is that it is almost impossible for

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'gliadins

Prolamins or simple proteins that can be obtained by alcoholic extraction of gluten from wheat and rye, which has been identified as the culprit which causes intestinal damage in those with celiac disease.'); return false">gliadins to be in distilled products. For instance, many people avoid distilled vinegar; Dr. Ernst believes this is almost certainly unnecessary. In his mind, there is no "celiac" problem regardless of anecdotal evidence to the contrary. [This is a view shared by the CCA and many experts, including USDA grain expert Donald Kasarda. However, many US celiac organizations, including our support group and CSA/USA, recommend against the use of distilled products unless the source is anon-gluten grain. Each celiac must make their own decision regarding the use of distilled products.—ed.]

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You only need one positive on the celiac panel. I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage. Good luck!

Welcome to the forum. First, you need to get copies of your celiac test to confirm you actually had it done and what the results were. Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy. Were the doctors gastroenterologists? Third you need to research celiac disease. Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast. here is a good place to start: http://www.cureceliacdisease.org/screening/ You might think you are a silent celiac, but ever been anemic? Had your bones checked?

That's good to know about Texas Children's, unfortunately I don't believe they accept our insurance. Our former pediatrician joined with one of their medical groups and we had to find a new one due to insurance. I'll check out their site though.

9 months ago I went to my doctor for normal blood work. She called me to tell me everything looked great, but o yeah, my gluten sensitivity levels were extremely high. I should probably stop eating gluten since it looks like I have celiac. She hung up and I never heard from her again. I cut out gluten completely, even though I have never experienced one single symptom of celiac. 9 months later, I decided to reach out to another doctor to get a second opinion, as I experienced absolutely zero change on 9 months of strict gluten free diet. All this doctor did was request the results from the previous doctor, tell me it is confirmed I have celiac, and hung up the phone. This angers me tremendously on two counts. One, I have absolutely zero symptoms of celiac, and would NEVER know if I was "glutened". Two, the complete lack of information or support from both doctors is horrifying to me. And finally, I simply do not believe the diagnosis and as considering just starting to eat a normal diet again. I would never know the difference. I am really just venting because this situation upsets me so much, and I have suffered mentally and socially from going gluten free. Since I have absolutely zero symptoms, even if I was actually celiac, I highly doubt anything would ever come of it if I continued to eat gluten. I could just pretend I never heard from either terrible doctor and go on living my life. Someone has to have been in the same situation as me, right?

Texas children's hospital in the med center has a celiac center now. https://www.texaschildrens.org/departments/celiac-disease-clinic Good luck!