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Endomysial Test (ema)

Claire

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Claire Collaborator
Claire
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[

I don't know if they looked for internal bleeding....who would do that? I had a colonscopy which showed only slight diverticulosis. Nothing to even remove and send off for testing.

I know what you mean about the more doctors you see and getting more confused. My GI at least thought my antibody level was abnormal and so this started my search for answers about celiac disease. But the blood doc said in no way would you tell someone they could have celiac disease based on that alone. Well that sort of got me excited thinking the GI is mistaken but until the Celiac panel blood tests come back I won't know what's what!

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floridanative Community Regular
floridanative
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Claire Collaborator
Claire
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I would pose the question to your primary physician - whoever you consider that to be. May be your GP or other. Don't let them brush you off. Unexplained anemia can be a sign of either significant or slow, less significant internal bleeding. It should be investigated if all other possibilities have been exhausted. Claire

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e&j0304 Enthusiast
e&j0304
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My dd was also always anemic and I believe that it was directly related to her gluten sensitivity. Nothing was ever done about it and I was told her give her a vitamin and be sure she ate enough iron. This was a child who ate us out of house and home and then some because she was so starving and yet was vitamin deficient and malnourished to the point that her hair was/is falling out.

Drs. are on my hit list right now!!! We didn't get the menstrating line, obviously, but we just got some other BS because they obviously knew she was eating better than most children on this planet, yet was not absorbing the nutrients properly. They chose not to figure out why...

floridanative Community Regular
floridanative
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Claire - well I don't know that I have celiac disease yet. I don't really have the gastro symptoms. But I'm going to ask my doctor to check for ulcers just in case. She's an internist but she's young and she doesn't seem to worry too much about what's causing my anemia. I want to change to another pcp but I can't do that in the middle of all these tests. One thing my doc will do is refer me to whoever I tell her to. Have to credit her for that.

e&j0304 - I'm right there with you on the doctors being on my hit list too. When the hemo doc stopped listening to me after he'd asked if I had 'D' or 'C' and I said no, I knew he wasn't going to be of help to me. At least he ordered the Celiac panel so I'm anxious to find out those results.

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    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      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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      By nancydrewandtheceliacclue · Posted

      @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
      Celiac flare years after diagnosis

      By Aretaeus Cappadocia · Posted

      @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
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      By Aretaeus Cappadocia · Posted

      @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/
    • nancydrewandtheceliacclue
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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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