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Race For Fix To Celiac Disease Underway In Boston - Boston Globe
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Boston Globe

Race for fix to celiac disease underway in Boston

Boston Globe

An autoimmune disease triggered by gluten proteins in wheat, barley, and rye, celiac disease affects some 3 million Americans. Untreated, it can destroy digestive tract tissue and can lead to anemia, osteoporosis, infertility, neurological dysfunction ...

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Unfortunately the Boston Globe website will not let me return to the full page access when I tried to, after checking to see if anyone left any comments under that story.  :angry:   There is not yet a cached version I can get to from a search engine. <_<

 

The title is awful.  This has nothing to do with making bread any different, or "safe," it is about creating a pharmaceutical product.

  

More unfortunately, Dr. Anderson, the vaccine developer, in the story is quoted as claiming a gluten free diet is less nutritious than a regular one.  At the same time he says patients "struggle" with gluten free diet....  these disease researchers who are "hooked on wheat" do us NO favors when they criticize the only true, effective treatment that is available for celiac disease at the current time, a real gluten free diet, and the only effective treatment that will be available for the MANY MORE millions of gluten intolerants who will not be getting a celiac diagnosis.  If they were advocating right now in the present for better gluten free food labeling standards, (and that doesn't mean telling us processed codex wheat starch at 20ppm is "celiac safe," :angry: )  and better manufacturing processes to avoid gluten cross contamination in American foods, they could be positively effecting and making healthier a high number of sick people. 

 

Assuming that the United States is too far gone to be able to guarantee genetic purity in foods in a future that includes a lot of imports, so we must now invent pills and vaccines for potentially just a third of the population to be able to eat the grain products of the future, is truly mind- boggling.  Couple this mindthink that a pill or vaccine can fix cross contamination, with the ongoing attacks on organic agriculture AND the necessity of gluten free for some, by segments of the so- called "science community" in cahoots with the GMO lobby, and it is a real tribute to the total lack of common sense when it comes to the practical application of "progress."   We don't even have the luxury of FDA rules that Pharmaceutical MEDICATIONS must disclose allergens or gluten -  how messed up is THAT ?  :ph34r:

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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