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- Bennyboy1998 replied to Ben98's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Potential celiac need advice
Yes gene HLADQ2 was positive -
- Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Inconclusive results
Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwh... -
- cristiana replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications63How Come Gluten Didnt Bother Me In Italy
@Gigi2025 Thank you for your interesting post. Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you - they will eat normal wheat baguette there without issue, for example. His theory was he thought it might be to do with the locally sourced wheat being different... -
- deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4Inconclusive results
Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. ...- 1
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- knitty kitty replied to Ben98's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms8Potential celiac need advice
Have you tried a genetic test to look for Celiac genes? No gluten challenge required.
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Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
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@Gigi2025 Thank you for your interesting post. Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you - they will eat normal wheat baguette there without issue, for example. His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019) poor labelling and cross-contamination issues. My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK! It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis. I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'. In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told! So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6. That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?
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By deanna1ynne · Posted
Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article! -
By knitty kitty · Posted
Have you tried a genetic test to look for Celiac genes? No gluten challenge required.
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