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.

[abigail]

Sorry I cant help you too much, but dont give her corn pops, if you want cereals try Cocoa pebbles, or Dora, or mickey cereals.

If you want to start easy for me Walmart worked since a lot of their Great value Brand say when they are gluten free on the label.

(ham, cheese, olives, pickles, rice, lentils, cheese puffs, bacon, chicken, sour cream, tomatoe sauce, alfredo sauce, marshmallows, etc)

hope its usefull,

Abi

[chrissy]

you should not put your daughter gluten free until all the tests have been done. some celiacs have diabetes, but not most. bm's can be runny or constipated with celiac. what tests did your doctor run?

[Juliet]

My son would have constipation for days, then really hard stool one day, and then extreme diarrhea for the next three days and the cycle would start. It turned out in part how he was reacting to Celiac Disease, his intestines were inflamed, almost like Crohn's disease, causing a blockage. He'd finally get so filled up, some stuff (but not all) would finally move, and what did was mainly diarrhea.

You know, we got quicker results than many mainly because of two things:

1) We insisted he was seen IMMEDIATELY. We didn't take the answer of "he is booked for the next two months." We told them how fearful we truly were of our son's dramatic deterioration. I think if we had continued to ignore the problem like our then pediatrician kept telling us, he wouldn't be around today. And when we did finally see the pediatric g.i., I insisted that he was seen the week that we got the referral. The only time they could squeeze him in that week was the same day I was having a scheduled c-section for our daughter, but he went anyway.

2) He was hospitallized almost immediately after he was seen by the pediatric g.i. because he realized it was serious, too. They ran a ton of tests, and after checking out everything all that it seemed to possibly be was Celiac Disease or some weird reaction to a virus. A biopsy was scheduled for two weeks later and it was then confirmed.

We actually put him on a gluten free diet the moment we heard he might have Celiac Disease. Our g.i. said that intestinal recovery can take up to six months, so the biopsy if performed soon enough would not be affected by him changing his diet. I'm not certain if what he told us was true or not, but I'm glad we did it the way we did. We saw drastic, positive results in 9 days.

Knowing what I do now, I probably would not have done the biopsy, though. Not that it was that traumatic, but from what I've read on the board, the procedure can sometimes be hit and miss if they don't get a biopsy in a damaged area. I would probably just try the diet and if it worked it worked. If we would have had to wait for a biopsy as long as some people have written they had to, I definitely would not have bothered with it unless after going gluten free that whole time he hadn't improved. My son was so extremely sick that we honestly believe that if he had continued to eat gluten for much longer he would not have made it.

[ce-wyant]

Thank you all for the great information. Thanks for letting me know about the corn pops and the cereals she can have, also the shopping tips. I am going to call the doctor on Monday an ask her why she thinks I need to start the diet with her before she sees the specialist. They are suppose to be working on getting the appointments expedited, but I don't know what that means to a doctor. I don't know which blood tests they did exactly because I wasn't too worried about it the first round and didn't ask. They just told me they were checking growth hormones in the first round and it came back with low levels of insulin-like growth factor hormone. It also showed absorption problems/metabolism problems and problems with the way her body fights infection. Because of these problems they ordered another round and this time I asked. I noted that they were checking for different anitbodies and IgA/IgG/IgT. These levels I was told indicated Celiac. She has been tested for Thyroid 4 times since she was born and each time her tests were fine, so that is not the reason why she can't metabolise food.

Juliet - the story of your son was so scary, I can't imagine what you must have went though giving birth to your daughter the same day your son needed to see a specialist. Thankfully you were on top of things and realized how serious it was. Doctors really make me angry, especially at major hospitals like U of M where we go. Mott's is suppose to be one of the best children's hospitals in the country, but if you can't ever get an appointment, how is that good? I hope your son is doing well.

[kbtoyssni]

I'm not sure what blood tests were done, but I am under the impression that there are no false positives (plenty of false negatives, though!) You may want to post exactly what blood tests were run - there are plenty of people around here who are experts at reading those blood test numbers.

At this point, I think you can safely say that she has celiac and you can put her on a gluten-free diet. If you want to do more testing with a GI, though, you need to keep her on gluten. If she goes gluten-free, the GI's tests will likely be negative (and they may be negative even if she is eating gluten). A negative result isn't a bad thing on a scope in my opinion - it just means that her intestines aren't damaged to the point of showing worn away villi yet. It's completely up to you whether or not you do get a scope done - most here agree that it's not necessary if you have a positive blood test, but there are others who like to have it done just in case.

I agree that you should try to get into the GI ASAP. Your regular doc might also be able to call the GI's office and request an earlier appointment. That's what I've done in the past and they've gotten me in within a week. Good luck!

[Juliet]

Thank you for the concern, but my son is now doing GREAT! It's been over a year since he started the diet and you would never know he was ever as sick as he was. He's in the 90th percentile in height, 50-75th percentile in weight, really strong, and extremely active and friendly. And he knows he has to eat gluten free and doesn't have a problem with others eating gluten around him. He's a handful and he can drive me insane, but when I see him run around, be really silly, smile and laugh it just warms my heart. I'm so glad we found out how to help him.

[taweavmo3]

Everyone has given you great advice.....I just wanted to add one thing. I know you have oodles on your plate already, but one thing stood out to me. You mentioned that she has had two UTI's, and I was just curious if they've ever done a VCUG to rule out any urinary tract defects or reflux. My dd (with Celiac) also has a double ureter and uretal reflux. A VCUG is standard protocol for any child presenting with a UTI under the age of 4. Just thought I'd throw that out there for ya, b/c that could be compounding the constipation issue as well. Good luck to you in getting some answers, I know how frustrating that can be!

[ce-wyant]

Yes we did that test last February and it was negative. Thanks for the tip!