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Getting Tested For Celiacs


apac

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apac Newbie

After 3 years of being sick, many tests, a misdiagnosis of IBS, and a great deal of research I chose to take myself off of gluten. I now have been gluten free for almost 8 months and feel a great deal better. I was tested for Celiacs in March which was negative. I was informed at the time that it could have been a false negative due to the fact that I had been gluten free for 3 months when it was done. I still have issues off and on but lately they seem to be more often than not and my body is making it harder for me to deal with it all. Each time I get sick it is exactly the same. I don't know anything about other food allergies because all of my focus has been on gluten. Do others represent themselves in the same as as gluten...i.e. diarrhea, nausea, vomitting, bloating? I talked to my GI doctor and he suggested I eat gluten for a month. He then will do an upper scope to get the biopsy along with a blood test. I am debating this for the obvious reason - who wants to make themselves sick for just to see if it is celiacs; but also because I lost a bit of faith in him when he swore up and down that I was a "poster child for IBS".

Would I benefit at all from testing positive for celiacs - or do I just try to figure out why exactly I am not on my "A game" every day?

Signed....so overwhelemed!


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Coinkey Apprentice

In my own recent experience, it was not worth eating gluten again to get tested- purely because it was negative and the pain was awful. You could try a proper elimination diet to try and find another culprit- many others on here are sensitive to milk and soy as well as gluten. Your off and on issues could also be due to cross contamination. For me having that positive test would have simply given me reassurance that it's not all in my head and also because the Canadian government helps with the cost of gluten free food through medical expenses used against the taxes (they won't do it if you do not have Celiac diagnosed through biopsy). So, think about why you want your positive tests and weigh them up against your reasons to stay gluten free. I only went through the blood test, and for me, it's not worth it to go back on gluten just to be properly diagnosed, I'd rather remain my sane happy friendly and enthusiastic self.

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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
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      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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