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Saw The Doctor Yesterday & Thank You For Your Support!


TracyB

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TracyB Apprentice

Hi everyone,

Doctor appt. went well - it went better than I expected. I think she is skeptical that I have celiac but was not at all unwilling to have me checked for it. The test she has requisitioned is: Immunoglobulins Quantitative (IgG, IgA, IgM). She has also requested TSH for thyroid, ALT (liver), Creatinine, Ferritin, Iron and TIBC along with a regular CBC and also a urea breath test - also an endomysial Ab which I haven't looked up yet and don't know what that is....

I asked her if she thought it was normal for a 3 year old to be diagnosed with IBS. She said that it is NOT what anybody would diagnose now and she feels I was misdiagnosed as a child. She said that in toddlers they can have a bowel problem where the bowel folds over itself and causes extreme pain that goes away and comes back, however that wouldn't explain the same pain lasting a lifetime, because it is a toddler thing.

Anyway, even if it ends up being IBS only than at least I'll know. I need to know for my son and my girls.

The appt. was good in another way as my son, who is an incredible sweetie, is having some serious issues and as my doctor thinks he is the nicest boy she knows ( :) ) she asked about him the second she walked in the door for my appt.! Both of our sons have ADD and were diagnosed close together. She's such a good doctor (and I really had no reason to doubt she'd help me re: celiac) - she is pulling out all the stops to help my son - and is getting him in urgently to a specialist. I have no doubt that she'll go to bat for me if need be...

Thank you all for your support - this really is a wonderful site for many,

TracyB


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aikiducky Apprentice

Just a heads up that the only one of those tests that tests specifically for celiac is the endomysial antibody, and that one can be used to rule celiac in but not to rule it out. It can give a false negative if your intestine isn't damaged enough. So if it comes back negative, you might need to talk with your doctor about further testing.

Pauliina

TracyB Apprentice
Just a heads up that the only one of those tests that tests specifically for celiac is the endomysial antibody, and that one can be used to rule celiac in but not to rule it out. It can give a false negative if your intestine isn't damaged enough. So if it comes back negative, you might need to talk with your doctor about further testing.

Pauliina

I specifically asked her and she said she would give me every test?? Which tests should they be then?

TracyB

ShayFL Enthusiast

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

TracyB Apprentice
Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

Dang it! So the EMA and TTG and the Total was missed then - but it's not even on the lab requisition. Maybe I should call the lab services and ask if they even test for those here.

Chantalle

nora-n Rookie

The EMA and total IgA were on you list, (EMA = endomysial ab) the missing tests were the ttg and antigliadin (best to have both teh IgA and IgG versions of them both run)

The EMA usually is only positive in advanced celiac disease, an the ttg should also be only positive if there is severe villi damage. The antiglidadin test may be positive in early celiac, and the IgG version should be even more sensitive to pick up early celiac. All this in theory. Some people will only have one of these tests positive. A good portion will just have negative tests despite of celiac disease.

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
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    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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