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- Scott Adams replied to Sunshine4's topic in Related Issues & Disorders4Neurologic symptoms - Muscle Twitching and Hand Tremors
Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs... -
- trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Test uncertainty
Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got... -
- cristiana replied to Heather Hill's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Does this definitely suggest Coeliac Disease?
Hello @Heather Hill You are most welcome. As a longstanding member and now mod of the forum, I am ashamed to say I find numbers and figures very confusing, so I rarely stray into the realms of explaining markers. (I've self-diagnosed myself with dyscalculia!) So I will leave that to @Scott Adams or another person. However as a British person myself... -
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- MI-Hoosier replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Test uncertainty
Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess...
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Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do. -
Hello @Heather Hill You are most welcome. As a longstanding member and now mod of the forum, I am ashamed to say I find numbers and figures very confusing, so I rarely stray into the realms of explaining markers. (I've self-diagnosed myself with dyscalculia!) So I will leave that to @Scott Adams or another person. However as a British person myself I quite understand that the process with the NHS can take rather a long time. But just as you made a concerted effort to eat gluten before your blood test, I'd advise doing the same with eating gluten before a biopsy, in order to show if you are reacting to gluten. It might be worth contacting the hospital or your GPs secretary to find out if they know what the current waiting time is. Here is a page from Coeliac UK about the current NHS recommendations. https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=If you remove or reduce,least six weeks before testing. Cristiana
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By MI-Hoosier · Posted
Thanks again. My mom was diagnosed over 50 years ago with celiac so grew up watching her deal with the challenges of food. I have been tested a few times prior due to this but these results have me a bit stunned. I have a liver disease that has advanced rapidly with no symptoms and an allergy that could be a contributing factor that had no symptoms. I guess I’ll call it lucky my Dr ordered a rescreen of a liver ultrasound from 5 years ago that triggered this or I would likely have tripped into cirrhosis. It’s all pretty jarring. -
By Heather Hill · Posted
Many thanks for your responses, much appreciated. The tests did include tTg IgA and all the other markers mentioned. I also had sufficient total IgA so if I'm reading the Mayo clinic thing correctly, I didn't really need the anti-deaminated gliadin marker? So, if I am reading the information correctly do I conclude that as all the other markers including tTg IgA and DGP IgG and tTg IgG and EMA IgA are all negative, then the positive result for the immune response to gliadin, on it's own, is more likely to suggest some other problem in the gut rather than Coeliac disease? Until I have a view from the medics (NHS UK) then I think I will concentrate on trying to lower chronic inflammation and mend leaky gut, using L glutamine and maybe collagen powder. Thank you for your help so far. I will get back in touch once I have a response, which sadly can take quite a long time. Kindest Heather Hill -
To put this in perspective, most recent pretest "gluten challenge" guidelines for those having already been eating reduced gluten or gluten free for a significant time period is the daily consumption of 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks leading up to the day of testing (antibody or biopsy). And I would certainly give it more than two weeks to ensure a valid test experience. Short answer: If it were me, yes, I would assume I have celiac disease and launch full bore into gluten-free eating. I think the tTG-IGA is reliable enough and your score is solid enough to make that a reasonable conclusion. Here is an article to help you get off to a good start. It's easy to achieve a reduced gluten free state but much more difficult to achieve consistency in truly gluten-free eating. Gluten is hidden in so many ways and found in so many food products where you would never expect to find it. For example, soy sauce and canned tomato soup (most canned soups, actually), pills, medications, health supplements. It can be disguised in terminology. And then there is the whole issue of cross contamination where foods that are naturally gluten free become contaminated with gluten incidentally in agricultural activities and manufacturing processes: Eating out at restaurants is a mine field for those with celiac disease because you don't know how food is handled back in the kitchen. Gluten free noodles boiled in the same water that was used for wheat noodles, eggs cooked on the same griddle that French toast was, etc.
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