The Road to Celiac Diagnosis – E’s Story

When I tell people that my 10-year-old daughter has celiac disease, inevitably they will ask me how we found out.  I think to many people, celiac is a middle-aged woman’s disease and it seems almost inconceivable that a little girl could truly be afflicted.  But as much as I wish it weren’t true, E does in fact have celiac, and it was a long road to diagnosis.

We always knew something was a little off with her. She was the BEST baby – she rarely cried and she slept, which was wonderful. She was much better behaved than her colicky older brother was when he was a baby. But when she was only a couple of weeks old, she would put her legs straight in the air and cry (a lot) when trying to poop. She’d stop crying as soon as she went and go back to being the best baby ever. We mentioned this at one of her well-baby checkups and the doctor said we could try changing her formula – so we did. The brand change didn’t help, so another doctor (by this time we had moved) told us to try soy formula – so we did. The soy formula didn’t seem to make much difference so the doctor told us to give her a few ounces of apple juice, a couple of times of day. That finally seemed to help a little so we stuck with that.  By this time she was about 6 months old.

Around this time she developed other problems, and her tummy issues took a backseat: the pediatrician noticed a lazy eye, that turned out to not only be “lazy” but also had compromised vision. So for a period we spent much of our energy on that. By the way, trying to get a 6-month-old to wear an eye patch and glasses is no fun.

Fast forward about 3 years and I noticed small bald spots on the back of E’s head. Her doctor told me that she had Alopecia Areata, an autoimmune condition where the immune system attacks hair follicles.  Wonderful. Luckily, my stepmom did some research and read somewhere (thank God for Google) that Alopecia in kids can sometimes indicate other autoimmune conditions such Hashimoto’s Thyroiditis (which I have) so I talked to her pediatrician about it and sure enough, E’s TSH levels were high and she had the antibodies indicative of Hashitmoto’s.

So why am I mentioning Alopecia and Hashimoto’s in a post about Celiac Disease, you may ask. Because one thing they all have in common is they are all autoimmune conditions, and as my endocrinologist once told me, “where there is one, there are usually three.” How true that is, I don’t know.  But read on…

After her Hashimoto’s diagnosis we again approached the doctor about our concerns with E’s constipation, bloated stomach, terrible gas, and to be blunt: huge poop.  At least two more doctors told us that it was just normal childhood constipation and we were given prescriptions for polyethylene glycol (Miralax), that she was to take daily.  When she was about 6, I even asked about celiac and was told by one doctor that E didn’t exhibit the signs of celiac because she doesn’t have diarrhea that has her racing to the toilet.

Fast forward again and E is 9-years-old and we have moved again, this time to Oklahoma City where we are seeing an off-base doctor. Does it matter that all the doctors before were military doctors? I don’t know. But our doctor here finally listened to me when I asked him this question,”exactly how long is my daughter supposed to take Miralax before we investigate what is causing her symptoms?”  He referred us to a Gastroenterologist who told me that he really didn’t think it was celiac but was going to run the celiac panel anyway to rule it out. It came back positive and a couple of weeks later that was confirmed with a biopsy.

I can’t be certain that E had celiac all along, especially since I’m not sure how prevalent it is in infants. Perhaps she only developed it in the last couple of years?  I do wish that more had been done to investigate her symptoms when she was younger though, and that is my fault as her advocate for not pushing harder. I guess there is a fine line between trying to be a good parent and not overstepping your boundaries at the doctor’s office.

When I found out E has celiac and that my other child has diabetes, one of the first things I did was turn to the internet to read other stories to see if anyone had similar experiences, if what we were going through was normal, etc. So I am sharing E’s story in case some other parent is on the fence and not sure whether to push their doctor a little harder to get the answers they need.  My suggestion is do it.




One thought on “The Road to Celiac Diagnosis – E’s Story

  1. That’s crazy! I hadn’t alopecia, I still have hashimotos,I had tummy problems,and had to take miralax every day! I just posted a story about this on my blog! Great post! Tell E I feel for her!☺️☺️-Brooke


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