Could This Be Celiac In My 8 Year Old?

[Cynnlynn]

Hi All,

I've been lurking around the boards off and on for several months and now is the time to finally post and ask my questions. I've seen how helpful you are to one another and I'm wondering if I'm in the right place...could she have celiac??? We've been struggling with a bunch of unrelted (I think unrelted) issues with my 8 year old daughter for years. This summer, her pediatrician ran a bunch of blood work and did a bone age because of her decrease in percentage for her height (her dad and I aren't very tall), years of headaches and constipation. He was basically testing for thyroid, growth hormones and turner syndrome (all of those came back fine). Her age was 8 years 0 months and her bone age came back at 8 years, 10 months. To make it a little clearer, here's the list of issues over the past several years:

*Chronic constipation (she's been on Miralax daily for 2 years and can't get off of it)

*Migraines (seem to have improved slightly with Flonaze as she has inflamation in her nasal passages) for about 3 years

*Her height dropped from the 25% to the 4% in 4 years

*brittle hair that is dry and breaks off

*slight case of eczema on the inside of her elbows

**In her blood work done in August her red blood cell count was 3.85 (normal was 4.10-5.30), MVC was 89.3 (normal range was 73.0-87.0) and ALK PHOS was 238 (normal 30-136, but I understand it could be due to bone growth). The only reason I know about the blood results is because I asked for a copy...the office told me everything turned out fine.

Her weight is in the 65%, so she appears to be a little chubby since she's so short.

Her maternal side of the family has several auto-immune issues (two who have type 1 diabetes, 2 crohn's disease and my 20 year old niece was just diagnosed with celiac...this is why now is the time to ask my questions). I can totally rule out anything and call it chance, but I do wonder if everything could be linked together and be celiac??? Her pediatrician stated a few months ago that he's seen celiac with constipation, but they've always had bouts of diarrhea with it. That topic had just come up when I brought her in to address the constipation issue. He feels that she has slow transit and that she should stay on Miralax. Should I subject her with more blood tests (she freaks out about them)? If I do, should I call and make an appt. with the peditrician again, or just call and ask for her to be tested? Our pediatrician is great, but he probably thinks I'm a hypochondriac with my daughter (we have 2 other children, but they don't have the same issues). Did anyone elses child have the non-typical symptoms or symptoms similar to this????

Thanks so much!!!

[Cara in Boston]

My MD originally told me all first and second degree relatives of someone with celiac disease should be tested. She then correct that to all first degree (regardless of symptoms) and any second degree relatives with any symptoms should be tested. Your daughter has symptoms and a family history of autoimmune disorders. She should be tested. Make sure her doctor knows the correct tests to run - bring notes to make sure.

My son's ONLY symptom was a change in behavior. He started having tantrums and melt-downs over the slightest frustration. He was 6 when diagnosed. We have since noticed other improvements from being gluten-free (sleeps better, no dark circles under his eyes, growing faster, hair thicker, no more itchy skin, etc.) He has never had diarrhea in his life.

Constipation can be a symptom.

I also tested positive. I used to get a headache about 5 times a week and a migraine once a month or so . . . now it is very rare, and the migraine comes only when I have been accidently glutened.

Cara

[Ginger7]

I would be concerned with the suggestion to stay on miralax indefinitely? That seems strange to me, could be slow transit?? But could also be masking underlying disorder. Agree with previous post, suggest tests for celiac and inflammatory bowel diseases.

[maramelia]

Hi All,

I've been lurking around the boards off and on for several months and now is the time to finally post and ask my questions. I've seen how helpful you are to one another and I'm wondering if I'm in the right place...could she have celiac??? We've been struggling with a bunch of unrelted (I think unrelted) issues with my 8 year old daughter for years. This summer, her pediatrician ran a bunch of blood work and did a bone age because of her decrease in percentage for her height (her dad and I aren't very tall), years of headaches and constipation. He was basically testing for thyroid, growth hormones and turner syndrome (all of those came back fine). Her age was 8 years 0 months and her bone age came back at 8 years, 10 months. To make it a little clearer, here's the list of issues over the past several years:

*Chronic constipation (she's been on Miralax daily for 2 years and can't get off of it)

*Migraines (seem to have improved slightly with Flonaze as she has inflamation in her nasal passages) for about 3 years

*Her height dropped from the 25% to the 4% in 4 years

*brittle hair that is dry and breaks off

*slight case of eczema on the inside of her elbows

**In her blood work done in August her red blood cell count was 3.85 (normal was 4.10-5.30), MVC was 89.3 (normal range was 73.0-87.0) and ALK PHOS was 238 (normal 30-136, but I understand it could be due to bone growth). The only reason I know about the blood results is because I asked for a copy...the office told me everything turned out fine.

Her weight is in the 65%, so she appears to be a little chubby since she's so short.

Her maternal side of the family has several auto-immune issues (two who have type 1 diabetes, 2 crohn's disease and my 20 year old niece was just diagnosed with celiac...this is why now is the time to ask my questions). I can totally rule out anything and call it chance, but I do wonder if everything could be linked together and be celiac??? Her pediatrician stated a few months ago that he's seen celiac with constipation, but they've always had bouts of diarrhea with it. That topic had just come up when I brought her in to address the constipation issue. He feels that she has slow transit and that she should stay on Miralax. Should I subject her with more blood tests (she freaks out about them)? If I do, should I call and make an appt. with the peditrician again, or just call and ask for her to be tested? Our pediatrician is great, but he probably thinks I'm a hypochondriac with my daughter (we have 2 other children, but they don't have the same issues). Did anyone elses child have the non-typical symptoms or symptoms similar to this????

Thanks so much!!!

Cynnlynn,

my 6yo boy started to go to many doctors because of a short stature, just like your girl.

he was ever at 25-15%, and dropped to 3% last year...

he had few gastrointestinal symptoms, no diarhea, some abdominal pains, mostly when he ate food. he had no hungry... very thin, just 15kg for 5 yo of age...very small.

we started at an endocrinoped... one of them prescribed Growth hormone!!!

then, our ped gave to us an exam to do, transglutaminase antobody, only this exam came lightly positive, and a bowel biopsy came with Marsh I type of abnormalities...

SO, my boy's case is not a CLASSIC CELIAC DISEASE... few gastro symptoms, but anemia, a strange hypothiroidism that appeared last year, no hungry, a little big belly, and SHORT STATURE...

i think you must do the biopsy on your girl. this is the best thing to do, better than start the gluten free diet. if you have opportunity, do the biopsy.

regards, mara

[Cynnlynn]

Thank you all so much for your replies! I really appreciate them. I think I'll call and ask for her to be tested. Can you recommend the specific tests that I would be asking for or is it just the full celiac panel? Do you know how long it takes to get the tests back? I know the pediatrician would want to start out with the blood work and go from there. I'll keep you posted!

[Cynnlynn]

Well, I had my daughter tested last Thursday afternoon and the results had already come in on Monday afternoon! Here is what they did, I think she is completely fine and we/she just has to live with they way she is.

Anti-gliadin IgA and Transglutamiase IgA less than 3 (no ranges given, but I think this is good)

Total IgA 50 (range is 41-305 for her age) It seems on the low end of normal.

The pediatrician did write that the only way to be certain is an endoscopy and that if her symptoms continue he would suggest a pediatric GI. I think that we'll wait on that and give it more time. I appreciate your input.

[Takala]

"Completely fine" people don't need Miralax daily, nor have frequent migraines..... you can get the skin next to the "eczema" biopsied to see if it is DH, which is also a way to get an official diagnosis.

[Roda]

Your daughter didn't get the full celiac panel and blood testing has a higher rate of false negatives in children. After all your testing is complete you can always trial her a good 3 months on a strict gluten free diet to see how she reacts. That is what I did with my oldest son.

My oldest son has had constipation issues since birth. He was on so many things. He also took miralax for about 1.5 years. I had him tested after I was diagnosed and all his blood work was normal. He has been blood tested yearly since. Last year we started to notice a drop in his height and weight(he was always small to begin with) and he began complaining of daily stomach aches, gas, bloating and nausea. His blood testing was normal again, but I decided to exhaust all testing and he went to see a pedi GI doc. He had a scope/biopsy that came back normal also. Since his brother and I both are diagnosed celiacs, I decided to trial him gluten free anyway. The results were pretty cut and dry. Gluten is an issue for him. In just 3 months he gained 6 lbs., started to slowly grow and all his gi symptoms went away and no more constipation! He did a small trial back on gluten and had some minor symptoms and he decided to stay gluten free. He has been gluten free since Aug. 2011 now. His weight has picked up and has grown about 1/2" or so. He is still shorter, but I think he has time to catch up(he is 11).

We went out to dinner last week and all three of us got cross contaminated. I'm usually the first to feel the effects, and I did, but my non celiac gluten intolerant child was the next one to complain of symptoms. My celiac son faired the best out of the three of us. So despite not having a celiac diagnosis for my oldest it is very apparent that it is bad for him.

[Cara in Boston]

All my son's IgA tests were perfect - he only tested positive on the IgG tests - which it looks like your daughter did not have. If my son had been only given those tests, we would never have found out about his celiac disease. Luckily, his doctor was concerned about his gliadin IgG and TTG IgG and went ahead and ordered a biopsy. He had extensive damage and very few symptoms.

Your daughter may be fine, but you did not get adequate testing to rule out celiac disease.

I agree that it is NOT normal for a child to have the symptoms you described and she should not have to just learn to deal with them. I only had symptoms for 5 years and I feel like a new person since giving up gluten. I can't imagine a lifetime of dealing with them.

Cara