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Breastfed Infant With Celiac


LilleesMom

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LilleesMom Newbie

My daughter is now 7 months old but we started having unexplained (at the time) problems around 5 months of age. Out of the blue she started projectile vomiting and her white blood cell count was extremely high (20000-37000). On occasion she would have diarrhea with it. We were admitted overnight once and made numerous trips to the ER. We also spent almost 2 weeks in the childrens hospital where they performed surgery for a mild malrotation of her bowel to attempt to correct the vomiting. She has had several X-Rays,Upper GIs and small bowel studies and NO ONE could figure out what was going on. Finally her pediatrian who is just a PA mentioned Celiac disease. I got online and she had all of the symptoms: rash on her lower back/buttock, projectile vomiting, diarrhea, unexplained weight loss, skin color change, etc. We finally had a celiac panel done and her Total IGa was 88. We are now being refered to a different childrens hospital for the biopsy of her small intestine to confirm. She is breastfed full time and has eats baby food (veggies) which we stopped for a while because we didn't know if that was making her sick. Since I have cut gluten out of my diet going on 1.5 weeks she is now having solid bowel movements. Tho she has gone 2 weeks without an episode prior to gluten free she has more energy. I am so glad to have an answer now. From what I read gluten isn't good for you anyway. I still need some help with recipes and good gluten-free products. I hope this post will help someone else.


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kareng Grand Master

If you are feeding her gluten free, the endoscopy, whenever you get one, will likely be negative. Hopefully you could get a doc to officially diagnose based on reaction to diet and blood tests?

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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
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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