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rstavo

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rstavo Newbie
rstavo
Posted

My daughter has been sick for five years.  She was originally diagnosed with Stomach Migraines.  She has nausea, stomach pain, bloating, she gets dizzy spells and motion sickness.  She has trouble with her cycles. She's lost a lot of weight. She has had trouble with Iron and Calcium.  She has trouble eating in general. Last time she saw the doctor she said  I just get sick every time I eat.  The dr ran a Celiac panel with came back with positive EMA and the TTG-IGA was weak positive at 9   So she had biopsy which they said was negative.  In the meantime I took a Celiac panel (I have milder symptoms)  mine came back different instead they flagged my TTG-IGG as higher then usual it was  a 7 (range is 0-5).  I don't understand the difference between the Two TTG tests .  What do the two types mean?  Also if her biopsy is negative and her blood work shows something and she is sick all the time what could it mean?  Is there a disease that looks and acts like Celiac and shows similar blood work but isn't. 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

what has your doctor advised?  The EMA is really specific for celiac disease.  Are you sure she had the complete panel?  Did they run the DGP IgA or the DGP IgG?  

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how many biopsies were taken?  The minimum is four and more is better..  Even then, celiac disease can be patchy and the small intestine is vast.  If stretched out -- larger than a tennis court!  

Was she tested for IgA deficiency?  In the case of celiac disease, this test is used to determine if any of the celiac disease IgA tests work (control test).  Not to mention that many Celiacs actually are IgA deficient.  Some doctors go ahead and run the IgG tests concurrently.  Those are typically run if the patient is deficient in IgA.  

So, the biopsies could be negative because they missed damaged areas.  She might be like me where only the DGP test work.  I always test negative to the common, but very good screening TTG (both IgA and IgG).  Finally, they should rule out Crohn's, etc.  Did they screen for anything else during the endoscopy?  Like SIBO, H. PYlori, etc?  

Your result?  It is tough.  It might indicate a sensitivity.  You should ask for the entire panel too.  Some celiac never test positive on ANY celiac blood tests!  

Consider the gluten-free diet only after you are satisfied with the testing results.  There are a lot of questions and I would address those before changing diet.  But in the long run, it could solve all your health issues!  That is what is really important! Good health.  

 

rstavo Newbie
rstavo
Posted
  • Author

Thank you her TTG IGA was 9.  They flagged it by writing an H after it. 

tessa25 Rising Star
tessa25
Posted

I'd go to a gastroenterologist if the doctor isn't one. A high on one test is supposed to indicate celiac. You're saying she had a high on one test, but a negative on endoscopy. I hear because she's a child you need a positive diagnosis for school for some reason. I thought a blood test high and positive response to a gluten free diet would get you that diagnosis, but I could be wrong.

If it were me at some point I'd try a strict gluten free diet for at least a month and see how she feels. If she feels much better (kids heal quickly) you have your answer.

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