Need Answers For My 3 Year Old Daughter

[ce-wyant]

I am new to this, but I have some questions regarding my 3 year old Elizabeth. Since she was born she has been under weight and short. Our doctor has always kept an eye on her weight and even made special appointments just to monitor her weight gain. She have never moved from the 3rd percentile in her 3 years of life. Since she 9 months old she has been battling with constipation. It would come and go, but since she was two years old it has been pretty much constant. Last April the doctor put her on Miralax to help with her constipation, it helped but sometimes would make her have runny BM's. In November the doctor noted that she had not gained any weight or grown in 6 months and was still having trouble with the constipation if taken off Miralax, she suggested setting up an appointment in 3 months and if there hadn't been any change, she wanted to start doing tests. On February 9th I took Elizabeth in for her appointment and it showed she had not gained any weight in over nine months. The doctor asked me about her diet and I said she ate very well, lots of fruits and vegatables, chicken, not too many sweets and plenty of calcium. The doctor said she wanted to start running some tests because of the failure to thrive and constipation. We did some blood tests and an X-Ray of her hands to check for bone growth. The blood tests came back that showing low levels of insulin like growth factor hormone and problems with the way she metabolises food and fights infection. The X-Ray of her hands came back showing she was 6-12 months behind in growth. The doctor set up another set of blood tests, this time checking for IGG's. She called me on Monday and said the tests came back showing Celiac and is referring us to a Pediatric Endocrinologists and a Pediatric GI Specialist. The doctor said in the mean time to put her on a gluten free diet.

On Thursday I took her into the doctor because she was wetting herself (which is not like her, she is potty trained) and had a slight fever, I was thinking UTI because she has had 2 already. I did not see our regular doctor, but this doctor found she had a ear infection (not related to anything I am discussing here) and said her wetting was caused from constipation. She also said that the GI specialist will probably set up a scope to do the biopsy to confirm Celiac. I asked her if is was possible to not have Celiac even though the blood tests were positive and she said it was.

My doctors office isn't too good on communication or returning phone calls and I cannot get appointments with the specialist until late April because it is U of M and they are crazy busy. So, I just wanted to check with all of you and see if what I am being told is correct information. Do you think it sounds like my daughter could have Celiac? I started the diet on Wednesday with her, but it is too soon to see any benefit. Also, I have read that most people have diabetes type 1 and wondered if she had any symptoms of this. Also, is there any connection to the low levels of insulin like growth factor hormones and diabetes? I am also a little confused because I thought you had runny BM's and not constipation with Celiac.

And my final question - if she does have it, does anyone know how ligit the information on www.glutenfreeinfo.com is? I was reading about everyday products she can have and it said she can have corn pops, but when I bought the box it said it contains wheat, so I am confused and did not let her have them.

Anyway, thanks for listening and any information you can give me would be helpful.

[Ursa Major]

If Elizabeth is on the gluten-free diet now, her biopsies will come back negative, even if it is celiac disease. Meaning, that really, if you want the biopsy, she needs to keep eating gluten until then. On the other hand, your doctor is wrong in saying that it may not be celiac disease if the bloodwork shows she does. There really are no false positives, but plenty of false negatives with young children.

Generally, positive blood work, plus positive dietary response should result in a valid diagnosis for celiac disease.

One of the common symptoms of celiac disease is constipation (not just diarrhea). Your daughter is also likely intolerant to dairy products, which also commonly cause constipation.

I suggest you take her off dairy as well. And don't substitute with soy milk, soy is NOT a healthy substitute (and many people with celiac disease are intolerant to soy as well).

Any site that tells you that a product containing wheat is okay for people with celiac disease cannot be trusted. Who knows what other information they have is wrong.

If you continue on the gluten-free diet, make sure you eliminate all other sources of gluten as well, like shampoo, conditioner, bubble bath, toothpaste, soap, lotion etc. If it contains things like wheat germ oil, barley extract or oat bran, replace it with a safe alternative. Also, make sure her vitamins are gluten and dairy free (vitamin E may be derived from wheat germ oil as well, and sometimes the filler is wheat starch).

If she is going to eat gluten-free bread, she will need her own toaster, as you can't clean out the old one well enough to be safe. The same goes for plastic colanders that have been used for gluteny pasta.

If you're concerned about the possibility of diabetes (which is common with children with celiac disease, but not as common as you think), have her tested for peace of mind.

I hope little Elizabeth will feel better soon, and start growing.

[ce-wyant]

Thank you for the information. I never even thought of a different toaster or colander. Truthfully, I had never heard of this disease until a month ago. I had always heard of a gluten-free diet, but I was getting it confused with a Kosher diet. I feel lost and don't know where to start. Elizabeth always complains that her belly hurts, but sometimes I don't know if she is use to saying it or if it really does. She also likes to put band aids on her knees because "they hurt", but really because she just like the carebear band aids. It is hard knowing what is really going on with a 3 year old.

[aikiducky]

It's quite possible that both her belly and her knees really hurt, those would be not too uncommon symptoms of celiac. Constipation is also quite common as you already heard.

I think the information on that site might just have been old, products sometimes change their ingredients, so it's always best to read the label every time, even when you've bought something before and think it's safe.

I want to repeat that if she's gluten free now that will make further testing unreliable. On the other hand, with children the improvement on the diet can be quite quick which would also tell you something.

This forum and the celiac.com site are a great resource, you'll find lots of information here.

Pauliina

[ce-wyant]

Thank you for the info with her knees. It is just really hard to tell with her. She is a happy child who plays normally, eats normally and giggles constantly. She doesn't seem like she is sick at all, except for the constipation. I don't know what is up with her knees, but I guess it is possible they really do hurt. The only other thing I have noticed recently is that she has started to lay down quite a bit more. She will be playing and then take her blanket and lay down on the kitchen floor. She only says her belly hurts if you ask her if it does, she doesn't just say "my belly hurts", so I can' t tell how much it really does. From what I am reading here people seem really sick, I guess my daughter could just think that is how you are suppose to feel since she is so young and has been dealing with it since she was 9 months. Poor thing probably doesn't know what it is like to feel good.

I am going to call the doctor on Monday and ask why she wants me to cut out the wheat before we see the specialist, I don't want to risk not getting an accurate biopsy if they suggest we need one.