New Here! Intro And Some Random Questions

[tanjkn3]

Hi I am a mother to 3 kids,( 13 YO boy, 10 YO girl, 7 YO boy) I am also lousy at spelling so I apoligize for that! at my daughters 10 year check up her doctor walked in the room and checked her chart(the nurse had already took her measurements and put them in the chart) he must have looked at it for every saying hmm, and flipping pages.

in the last year she really hasn't grown at all even though all my kids are small and only grown very small amounts every year we have always thought this was normal for them but he was finally concerned and sent us for blood tests and a bone age a few weeks later he called back saying that one of her blood test came back positive for celiac disease and he was gonna forward it on to our local childrens hospital and they would call us if they wanted to see her, I did some research and waited for a call but they never called so looking in to everything I decided we would be better off just going gluten free, but before we did I had both my boys tested( my 2 older kids, DD who tested positive and DS both are under 3% for height and weight and my other son I think is around 5th% but he doesn't have a check up till April) Anyway the boys tested negitive but because of their size and because older DS also has ADHD(and because it's genitic), and for just the ease of everything we are all gluten free.

so that's my story so far.

My frist question so far I've just been telling everyone that she had a postive blood test for celiac disease, would it be wrong to just say she has celiac disease? how conclusive are the blood tests?(I don't know anything about the readings on the blood test of anything like that) Her school wanted a note from her doctor saying that she was to eat gluten free for her file, the note the doctor gave me says she is being followed by their office for celiac disease.

Another question is how much growth could be expected for this first year or so? she's only 48 inches now and has been so for the past year, she wears a size 6/7 and I feel like she has been wearing this size forever now she has been wearing size 13 shoes for at least 2 years(she has like a billion pairs of converse cause they are cheap and I buy her a few pairs every year for school and she isn't outgrowing them LOL!)

another question I have is I know AHDH has been linked to celiac disease I'm wondering if other learing disabiltys can get better if one has celiac disease and eats gluten-free? she has had an IEP with the school system since she was 3 at first because of speech delay and now she is listed on it for OHI I have a long list of things that she has been diganosed with but I would have to go though her files to list them all cause I just can't remember them all one that comes to mind is something with her hearing where she has a hard time hearing things when there is background noise she uses a FM transmitter in school to help hear her teacher. She also has some fine moter issues.

2 more quick questions, has anyone ever noticed a decrease in bed wetting in a child with celiac disease after going gluten-free? Also anyone know if there is a link between hand tremors and celiac disease

Thanks for any answers I get to this I know it's long! I look forward to being a member here and learing lots!

[seezee]

You may want to try calling the GI department at your Children's hospital and making an appointment. Maybe they are waiting to hear from you or maybe they called and you didn't get the message? I find it helpful to have a diagnosis from a doctor with children. It helps with school and helps my kid to take it seriously. Also, there can be some complications initially like we had (vitamin D deficiency and reflux etc., there were about twenty other things they checked for that she was normal on too - so maybe those require some attention too.) that a nice GI doctor could help out with. In my case I found the doctor and the nutritionist very helpful in getting my daughter to be very serious and careful about what she eats. Try to find someone there who specializes in celiac. I think a positive blood test is about 94-98% accurate depending on who you ask. In our case my daughter wet the bed and stopped after we started the gluten-free diet. I don't know if it was just because she outgrew it or it was a symptom. It only really happened when she was super tired or upset once every few months before. (She was 10 when she was diagnosed.) If you look up celiac and ADHD you will find some studies. My child seems much less irritable than she was. I think it could be that she is feeling much better so is less grumpy. I guess in the end you have to decide what feels right for you and your family. It helped me a lot to know for sure what the problem was and that I was doing my best to fix it. I am not sure if I could do this long term without that. I also think it helps with friends and family in supporting you. Best of luck.

[OBXMom]

If it was me, I would find out what the blood results were, and the scale used. You have probably learned that a biopsy is considered the "gold standard" of celiac diagnosis. My son had very high blood indicators, and based on our GI doctor's recommendation we did the biopsy. After the biopsy the doctor told me that in 30 year of biopsies he had never had a negative biopsy after positive bloodwork. Which left me wondering why we had bothered. . .and we did not go the biopsy route with his sister, but relied on other tests for her diagnosis.

Even though I disagreed with the necessity of a biopsy, I am still very happy to have had specialists helping us out. Celiac disease is complicated, and sometimes doesn't resolve quickly. I agree with Seezee, I wouldn't wait for a call, I'd call myself.

And about the growth - my son jumped 25% on the growth chart within 4 months of beginning a gluten free diet. It was so exciting! He hasn't kept it up, but after staying the same size for so long, it was nice to see. Celiac disease does have neurological aspects, including ADHD and hand tremors. My son had secondary auditory processing deficits (he couldn't hear well with background noise) that has almost completely gone away since his diagnosis. Hope everything works out well for you guys.

[CeliacMom2008]

I've always seen that the blood test is 98% accurate and the inaccuracy comes from false negatives, not falst positives. Per our son's GI doctor's recommendation we had the biopsy done though. BUT, it sounds like you're already gluten free. You have to be eating gluten for the biopsy to be accurate. If I were in your shoes I'd skip the biopsy. I wouldn't think it would be worth going back to gluten.

Your miriade of symptoms do sounds like many, if not all, could be linked back to Celiac. We were pleasantly surprised at all the various symptoms that disappeared with the gluten-free diet for our son. They really do transform. It's a wicked disease that thankfully is easy to treat and recover from!

I've read about bed wetting being associated with Celiac. Won't that be wonderful for her to get rid of!

You asked about telling people she has Celiac...yes, I would feel very comfortable saying my child had Celiac based on the blood test alone. Many people limit their diagnosis to the blood test. I know doctors still recommend the "gold standard" biopsy, but for many it is cost prohibitive, they're already eating gluten, or they don't feel comfortable with the procedure (but don't let that last one stop you. It is relatively "simple" and probably sounds worse than it really is.).

I'm always perplexed when I see where schools request doctor's notes. That just seems odd to me. Like any of us would do this just for the fun of it!

Some words of encouragement...Celiac is an ups and downs disease. For us the first few months were very challenging. Now it's pretty uneventful for us and just our way of life. None the less, just yesterday was a down day for our 10 year old. Goofing off at the lunch table resulted in a napkin going from one boy to another's cup of noodles to my son's berries and Cool Whip. It as purely an accident that happened during normal boy playing. Thankfully I was volunteering in the cafeteria yesterday. I looked over an saw my son with his back to the other boys with the look that told me he was about to cry. When I asked what was wrong he told me he hated having Celiac. Most of the time he just rolls with it and doesn't let it get him down, but for whatever reason yesterday was a down day. When I asked later why it had bothered him so much he said it was because he could see I had put lots of raspberries (his favorite) in it and because I had surprised him with Cool Whip on top and he really wanted to eat it. Anyway, my point is that you just have to roll with it yourself. Help them to be happy and offer hugs when they're not. It isn't easy, but it's definitely doable.