Celiacs?

[Toribelle]

Hi.

I've been looking into Celiacs for some time now and this board is wonderful. I may have celiac disease and now I suspect my 2 year old may also.

When I was a baby I stopped growing at 11 months until I was over 2 years old. My hair, fingernails, everything stopped growning. I was diagnosed with failure to thrive and my mother was told that I would probably not survive. They didn't know why this was happening. My food would go through me basically undigested during this time. I developed intellectually at a normal rate. Sometimes in my second year I had a very bad GI attack and when it was over I began to grow. My diet - as far as I know - was unchanged - although I was a picky eater. I grew normally, although very noticeably skinny - even accused of being anorexic by teachers.

As an adult I have had problems with fatigue, depression and migraines.

Now I have a 2 year old and a 4 year old and both are very small - but not abnormally. (both run in 5th perctentile) My 2 year old constantly has loose, smelly stool. She is a very, very picky eater and sometimes I think she doesn't want to eat because she's afraid of pain in her belly. The past few nights she has woken up with belly aches. Her doctor wanted me to watch for what triggers the probelms - but it's hard to know! It seems like so many things cause problems.

Due to my history of an undiagnosed problem like I had and now the baby's problems - the pediatrician thinks I may be right about celiac disease - he wants me to be dianosed first - as to not put the baby through all of that (and I totally agree!) but I have a really lousey doctor right now as we are new to the area and I am looking for one that may know more about celiac disease - I wouldn't trust this doctor to handle something like this.

Does any of this sound familar? Especially my childhood probelms - could they really have missed celiac disease?? I was treated by the Children's Hospital in Philly - hard to imagine they could have not thought about it? Although - it was in the early 70's? Any help would be greatly appreciated!

Thank you-

Toribelle

[Guest jhmom]

HI and welcome to the board!

Unfortunately Celiac is missed all the time, because doctors think its such a "rare" disease that not many people have it, especially in the 70's.

I don't remember having GI probs as a child. Mine started several years ago (1999) with bouts of diarrhea here and there and then in 2002 it hit me like a brick! I visited numerous doctors only to be told I had IBS! I would not accept this dx. I had blood test and biopsy done only to come back negative, then I found out about Open Original Shared Link on this site and decided to get tested through them. I found out that Dr. Fine's way of testing (stool panel) was more sensitive than blood test and its more accurate. When my test came back positive I decided to have my 8 year old tested as well. Her test came back positive too, even after being gluten-free for a month. You see she had always been a "craby" child, she constantly complained of her stomach hurting and would be doubled over in pain... although her grown and weight was always very good. I took her to the doc several times only to be told she needed to eat more fruit since she didn't eat veggies, they did not even consider Celiac.

You have several options, in my opinion:

1. have both kids tested with blood test (but don't dismiss it if it comes back negative).

2. Try the gluten-free for couple of weeks/months to see if there is an improvement, if so there's your test and remain gluten-free for life.

3. IF you need a doctors dx (as some people do) then get tested through Enterolab.

I hope you and your children find some answers and feel better soon! Take care