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Genetic Research on Celiac Disease Promises Hope for Celiacs - Celiac.com


Scott Adams

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Scott Adams Grand Master

Genetic Research on Celiac Disease Promises Hope for Celiacs

Celiac.com

GlutenFreeHelp.info became extremely interested and involved in the subjects of celiac disease, gluten sensitivity and gluten issues a number of years ago, after being diagnosed as celiac after many years of unresolved troubles. ...

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Another example, alas, of mushy "wishful thinking" on the topic.

"Substantial" evidence has been found by British researchers that the genes which are connected with celiac disease are also linked to other autoimmune disease such as rheumatoid arthritis. Thus scientists are able to understand how the genetic risk factors for the disease operate by changing the number of immune system genes that cells make. Additionally, it's now understood that there are "hundreds" of genetic risk factors, which means that scientists should be able to "have a good guess at nearly half of the genetic risk at present," van Heel wrote in the Nature Genetics journal, which published his study.

How come only 3% of celiac Americans have been properly diagnosed? Chances are, they or their doctors haven't even heard of the disease. Research on celiac disease in the U.S. depends completely on the generosity of benefactors for its funding. There would be no way to continue this research and the efforts to raise awareness without these charitable donations. Out of the estimated fifty autoimmune diseases that have been discovered by doctors, celiac disease is the only one for which research isn't supported by the U.S. government.

After years of running around in circles with clueless doctors in a quest to find the cause of my painful symptoms, I finally researched my symptoms on my own. Luckily, as a result of my own findings, I've been properly diagnosed, but managing the gluten-free diet is still a challenge. A pill that could offset genetic factors is appealing to many celiacs like myself. Although the treatment for celiac disease is simple, it calls for a lot of work and can be disheartening at times, requiring a total lifestyle change and a lot of time on home-cooking.

What's the difference between the U.S. and the United Kingdom ?

Universal health care coverage.

What happens when celiacs are actually diagnosed ?

Fewer sick people.

What sort of business was working against that concept of implementing universal health coverage in 2009, during the debate on the health care legislation ?

The pharmaceutical industries. (Private insurance industries, also.)

Who sets the current diagnostic criteria to be diagnosed with a disease, in the United States ? In other words, who is it that your doctor's office must get permission from, and follow the guidelines of, to run tests and diagnostic procedures ? If you are under retirement age, and not on Medicare ?

Hint. It begins with "i." Your American doctor has clerks that do nothing but specialize in coding these requests and wrangling with the insurance industry for permission and reimbursements.

What industry is currently not required to report on its retail product labeling whether or not the item to be ingested or applied or injected contains gluten ?

Guess. It begins with a "ph."

What country still doesn't have FDA labeling standards on gluten?

( Well, duh. You said FDA, so you must mean the U.S. ;) )

And why is this being done this way ? Because currently the U.S. political philosophy is to have profit as the goal of the medical industry. As long as the insurance industry can make a tidy profit by rejecting one out of six and overcharging the rest, nothing changes.

Now, the question is, the other modern medications the pharmaceutical industry has come up with during the past decade or so, to treat auto immune diseases, are extraordinarily expensive.

Do you really want to get on that treadmill ?

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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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