My daughter Maddy just had a positive blood test for celiac - though she has low levels of IGA so they had to do a different test - just wondering if anyone has had a positive blood test but the biopsy come back negative?
She is three years old and I so do not want her to have to deal with this! Positive thinking...positive thinking...
Celeste
My 10 year old daughter also had a positive blood test for celiac. The doctor told me she needed to get an endoscopy with a biopsy to confirm. I waited about two months because my daughter had none of the symptoms. Occasionally she would get stomach aches, but no diarrhea, no failure to grow. On the other hand my daughter is about 5’2 and 110 lbs. Shes very healthy looking. The only symptom that matched was the emotional symptoms like, mood changes and very irritable. Anyway, we did the procedure, the doctor who performed the biopsy told me she had no damage in the lining of her stomach and it didnt look like she had it but they did a biopsy. The biopsy came back positive for celiac. Like you, i thought ‘one more thing my daughter has to deal with’. It was hard to deal with and much less tell her. I cried for days and when I finally told her, she was upset but we immediately went shopping to the natural food store. We’ve found many products that are gluten free. She been gluten free for about a month. Emotionally she has completely changed. Shes very patient, has no mood swings at all and has even lost 5 lbs.
Sorry about her diagnosis - glad to hear she is feeling better emotionally. Do you still go out to eat? I guess you bring your own food to parties…
Ha - I got a negative blood test for celiac myself and I’m about to talk to a GI specialist to see if I need a biopsy… so I was interested to see what the answer to this was. Guess I’ll suck it up and go under the endoscope, if negative blood test can be refuted by a biopsy.
Will he come up positive every time? Will he have to get more biopsies? Good luck to you…
Hi!
This is my first post on TuDiabetes 
I wanted to share our celiac story…
My oldest daughter had signs of celiac from the time she first began picking up Cheerios, around the age of 7 months. Over the course of the next few years, I questioned the doctor repeatedly about the random diarrhea and tummy aches…I was told it was because she was breastfeeding (she nursed for 2 years).
Three weeks after her 2nd birthday, she was dx with T1D. At that time I also mentioned her symptoms to the endo, who ordered a celiac panel. It was negative.
Over the course of the next several years, the diarrhea continued, her tummy aches waxed and waned, and she developed severe headaches and leg aches. We had multiple ER visits for the headaches and tummy aches, because she seemed so uncomfortable. I also took her to a GI doc, because her symptoms were so consistent with celiac. I requested an endoscopy and the doctor refused, telling me that it wasn’t necessary until her bloodwork was positive.
She had a celiac panel drawn with each annual lab order…negative, negative, negative…she was miserable, miserable, miserable…
18 months after that GI visit, at the age of 5 yrs, her annual celiac labs were positive. Biopsy confirmed the diagnosis. We cut out gluten cold turkey and her symptoms were improved within 2 days — G.O.N.E. (!!!) a week later. Six months after her celiac dx, a repeat endoscopy was done – it showed NO sign of celiac and her labs have been normal ever since. We continue to have her labs tested annually. It’s the only indicator, aside from her symptoms, that we have to confirm the GF diet is working. She’s been GF for almost 2 years and is doing fantastic
We had all of our other family members tested through the Mayo Clinic after learning that there’s a 20% chance of another first degree family member being affected…I was positive. I did not have A SINGLE classic symptom. Not only were my celiac labs positive, but I was also found to have anemia – a complication of long term untreated celiac disease. My biopsy showed “near 100% villous atrophy” AGAIN, I DID NOT HAVE A SINGLE SYMPTOM. I’ve been GF for a year now. It took 8 months for my labs to returned to normal, and, admittedly, I’ve cheated to see if I become symptomatic. I still do not have any symptoms, even after indulging in a slice of deep dish pizza and a beer!
Anyway, that’s our celiac story. I have a blog where I write quite a bit about our journey…I recently changed my URL so most of the stuff I’ve written hasn’t been re-posted yet. I invite you to check it out anytime Over the next month or so, I’ll be working to re-post some of the archives from my old site…there’s sure to be a bunch of celiac info/GF recipes/T1 stories that will be forthcoming. Hope to see you there