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Gluten Free Guerrillas
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Celiac results

Hello everyone! I tested positive for the celiac gene. Does this always mean you have. I have suffered for years with diarrhea and constipation.... I have stopped eating gluten just waiting on my endoscopy....

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Hi Mary,

I hope you don’t mind me asking when did you actually stop eating gluten? This is an important point because the endoscopy is meant to look for gut damage caused by eating gluten - if you’re not eating it anymore then this could compromise the whole procedure! (The gut damage could have healed, giving you a false result).

In the UK NICE guidelines (NG20) usually recommend the consumption of gluten every day for 6 weeks prior to any tests being carried out.

Sorry I can’t help answer your first question about genes - I probably also have the coeliac gene but I was diagnosed using the more common Ttg2 blood test.

Take care of yourself,

R. B.

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I stopped eating gluten for about three weeks now., I go back to my primary doctor tomorrow I will ask her about this. My appointment with the gastroenterologist is next month, so I will go back to eating gluten.. But I have had no diarrhea since stop eating gluten, but I have a lot more heart burn, but it’s mostly just pain in my chest every morning.. I tested positive for an ANA and it was highly positive. A few months later I had another one and it was negative. So I’m just wondering if it’s another autoimmune disorder causing these problems like I have trouble swallowing not with liquids soups.. It’s mostly bread and meat. Thank you for this information! I definitely don’t wanna have that test done for nothing.. I’ve also lost a lot of weight... So I will see what my doctor says tomorrow and let you know.. Thank you again 😊

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Hi Mary have you been tested for Thyroid?as it may be a combination

I had a similar experience

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Hi,

It sounds like you may just about have enough time to get back onto the gluten foods, given that it’s only been 3 weeks. Not ideal, but that may perhaps be your doctor’s fault for not ensuring that you understood that the consumption of gluten was necessary in the first place. It definitely is a good idea to consult with them again in my opinion.

I suggest using the next week or two to eat any and all of your favourite gluten foods. This may be certain types of bread, cakes, biscuits or chocolate items such as Maltesers etc. Use this time to get your head around saying a proper goodbye to all of them. Make sure that you absolutely have no unfinished business with these foods - because from what you have said, you are highly likely to be a Coeliac. After the endoscopy you will be expected to never eat any of them ever again.

Gluten free foods have improved massively in the last few years but some things (like GF crumpets and pastry etc). take some getting used to.

Good luck!

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Hey Mary. Great that you have a diagnosis on the bloods, but not great for you that you have to eat gluten in the run up to endoscopy! My thoughts on the Marsh test (endoscopy) are perhaps a little controversial. Marsh is measured by degradation of the gut at points 1,2,3,and 4. 4 Being the worst. According to a gluten specialist you will only be diagnosed Coeliac if you are grade 3 and 4. I think personally this is nuts, because any degradation shows the Coeliac effect. I was unable to eat gluten for any period to run up to an endoscopy because it makes me so ill - so my only option was to forgo the test and just live a gluten free life. In your case, after so many years of your gut being exposed to gluten, and the damaging effects, I feel it is highly unlikely that all traces of Coeliac disease (if present) will have disappeared in the time it takes to get your test (unless of course that is months down the line - and of course unless your doc will not diagnose Coeliac unless you are grade 3 and 4). Anyway, not sure this is of any help but wanted to wish you good luck in the test and getting the diagnosis you need. Carolinex

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In some areas, the waiting list for an endoscopy is as much as 6 months - there's a real shortage in the profession just now.

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Reinforcing what others have said. Better to follow expert advice rather than opinions of other sufferers. The following is advice from Coeliac UK who are the leading non medical experts in this field.

"While it may be difficult and uncomfortable, it's essential for your long term health. As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

Getting diagnosed - Coeliac UK

coeliac.org.uk/coeliac-dise..."

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