trents

4 hours ago, Patty6133 said:

How many people developed a rash due to gluten intolerance?

About 15% of those with celiac disease suffer with the rash (dermatitis herpetiformis).

They put it in their yogurt because it has probiotic properties. "Probiotic", in case you haven't noticed, is the latest marketing silver bullet health guru buzz word.

9 hours ago, chrisinpa said:

I guess that is the ultimate goal...a new strain of gluten free wheat.  That  would still leave barley and maybe (oats?) (etc?) with gluten.

Or at least with a form of gluten that did not cause reaction. If that could be accomplished then I would assume the same could be done for the barley, rye and those cultivars of oats that contain gluten.

@ShariW, this is true.

Yes, there would need to be years of strict control in the cultivation of these GMO products in dedicated fields to prevent that from happening. It would take time to implement and get to the point where it was reliable.

Fascinating! As with all GMO products, however, there will be questions of whether or not it would trigger other immune system reactions as a new foreign protein substance. Don't get me wrong. I'm not against GMO technology in a carte blanche sense. I just think each GMO product needs to be evaluated on its own merits and risks and there needs to be thorough trialing and monitoring over time.

@JoJoColes, I was thrice vaxed (Moderna) during the original COVID pandemic era and still got COVID twice within a year after that. Although it may have lessened the severity of the infections, it certainly didn't prevent it. The long-term potential dangers of the MRNA vaccines as well as the steady decline in the severity of infection connected with COVID strains have caused me to eschew further COVID vaccinations. I would also point out that virtually any viral infection or severe stress experience could trigger the latent celiac genes. So, it doesn't mean you PCP necessarily gave you a bum steer. But I get it. You experience is your experience.

@Anne65, yes, presently, in order to diagnose celiac disease, a person must be actively consuming regular amounts of gluten. The first stage of testing is designed to detect antibodies produced by an inflammatory autoimmune reaction to gluten in the villous lining of the small bowel. When you remove gluten from the diet, the inflammation begins to subside and the antibodies begin to disappear. Many people, like yourself, experiment with the gluten-free diet before getting tested and find themselves in the dilemma of knowing that gluten causes them problems but not being able to differentiate whether they have celiac disease or NCGS (Non Celiac Gluten Sensitivity), since there is much overlap in the symptoms. The difference is that NCGS does not an autoimmune condition and does not damage the small bowel lining. There is also the option of the "gluten challenge" where the person returns to eating generous amounts of gluten for a period of weeks or months for the purpose of getting formal testing done for celiac disease. Many people, however, have such strong adverse reactions to gluten (especially after they have been off of it for a good amount of time)  that this is not practical and can even be dangerous to their health.

@Idnam, maybe it's time to reach out to your GP and inquire about follow-up.

Probably more than have even heard of "celiac disease".

It's usually better to use the term "gluten intolerance" rather than celiac disease when talking to the uninitiated about these things. Gluten intolerance covers both celiac disease and NCGS (Non Celiac Gluten Sensitivity or just gluten sensitivity for short). 

That's why we have the term "silent celiac". And it might not be a stretch to say that most of us have fit into that category. But when you see those early symptoms in friends or family and try to encourage them to get tested, you usually get blown off.

@chrisinpa, this is done on children in Italy as part of their screening as they entering the school system.

I think sometimes it is the case when people are diagnosed later in life that the actual onset was years earlier but was not of an acute nature. As it gradually took it's toll on the small bowel lining and other body systems it got to a point where symptoms were noticeable enough to finally prompt investigation and diagnosis. Then people look back in time and realize there may have been some minor symptoms all along.

That's a question I have as well. Who are the appropriate people in high places to lobby. I'm thinking RFK, Jr. might be willing to get on board with this. If the celiac community, not just individuals gut recognized organizational leaders, would come together and present a unified effort with this we might see results.

But still, I'm not sure any of this is helpful from a practical standpoint when you are already doing everything you know what to do to avoid gluten since it is merely reporting what has already happened. Perhaps it would give guidance of things to avoid that you mistakenly thought were safe, that is if you could pin down what exactly was the offender from the numerous things you had recently eaten. I suppose it also has some value in a general way in explaining why some don't see improvement in symptoms or in antibody scores over time after beginning the gluten free journey. I suppose it could alert them to the need to scrutinize their diets more closely. 

Thoughtful article. For me the most valuable element of this article is the discussion of IELs. We have many posts on celiac.com from people who have all the symptoms of celiac disease but whose biopsies show no other irregularity than IELs. Perhaps we should be taking that more seriously.

Good catch, @RobinGroenevelt, and an excellent point!

"When comparing gluten-free oat-only products with general gluten-free foods and ordinary oat products, the study found that gluten-free oat-only products had the highest contamination rate. For instance, gluten-free foods in general had contamination rates of around 18 percent, while oat-only products labeled gluten-free had rates nearing 73 percent. Ordinary oat products, which are not labeled gluten-free, had similar contamination levels to the gluten-free oat products, reinforcing concerns about production standards."

IMO, this is the most significant statement in this whole article and probably reveals the real reason why so many celiacs/gluten sensitive people have problems with oats. Strictly speaking, this study would only apply to European oat products but the chances of quality control being any better during the processing phases of oat products in the U.S. are not good. 

And this leads naturally to the conclusion that it probably is a waste of money to spend extra on "gluten-free" oatmeal. 

I would like someone to undertake a similar analysis of gluten-free" oat products manufactured in the U.S.

@Viv Hesketh, at least in some places in England there are stipends for those officially diagnosed with celiac disease. But I think it may depend on postal codes. Perhaps our Brit moderator, Cristiana, can elaborate for you.

@alltheceliacquestions, 20ppm, even 10ppm will still cause reactions in the more sensitive subset of celiacs.

@miguel54b, I hear you. Some medical professionals have this attitude that gluten disorders are the latest "fad" disease and are very dismissive. Many of us have suffered much and suffered much bodily damage by having our complaints dismissed as hypochondria or misdiagnosed as some other medical problem. But let me offer a little education about gluten disorders which will lead to terminology clarification to your comments. I hope I do not come across as condescending. 

Forgive me if you already know this, but there are two recognized gluten-related disorders: 1. Non Celiac Gluten Sensitivity (NCGS) and 2. Celiac disease. They share many of the same symptoms on the surface but there is a significant difference below the surface. Celiac disease is an autoimmune disorder triggered by the ingestion of gluten. It causes the body to attack its own tissues, specifically, the mucosal lining of the small bowel. 2. NCGS, or "gluten sensitivity" for short, is not autoimmune in nature and does not damage the lining of the small bowel. We actually don't understand as much about the mechanism of NCGS as we do that of celiac disease. A general term that covers both kinds of gluten-related disorders is "gluten intolerance". So, I'm not sure when you use the term "gluten sensitivity" if you are referring to NCGS or celiac disease or if you are just living with the ambiguity. And I would also add that in the real world, people are still using the terms indiscriminately such that there is great deal of confusion and inconsistency.

4 minutes ago, miguel54b said:

I did not need a test to tell me that I have a gluten problem; once I stopped eating gluten and all my medical problems went away, that was enough for me. It is great that they developed this test since doctors would not take your words for it, and I was afraid of doing a gluten challenge test since the desire to commit suicide was one of my symptoms.  

Yes, but knowing you have "a gluten problem" does not distinguish between gluten sensitivity and celiac disease, an important distinction when it comes to long range health implications and how strict you need to be in avoiding gluten. And in reality, many people find they cannot stick to the gluten free diet until they have a formal diagnosis. Without that, they find a way to rationalize it away. That's just the psychology of it. So, there can be great value in seeking a formal diagnosis.

This is truly a breakthrough in the diagnostic realm! Hopefully, this technology will become widely available sooner than later and save a lot of people a lot of misery in the process of trying to get a diagnosis.

This caught my attention: "More importantly, these changes may not go away completely—even when the patient is following a strict gluten-free diet. Previous research has shown that neurological damage caused by gluten may be long-lasting or even permanent in some cases. This underscores the importance of early diagnosis and strict adherence to a gluten-free lifestyle to prevent irreversible harm."