What's Next?

[frstr8tedmom]

I am a new poster here and just want to say what a blessing this site has been for me to learn about how to help my daughter. Thank you.

My dilema is my daughter has been gluten-free for 5 months. This started out wheat free only due to a positive reaction on an allergy test but her stomach problems just were not going away so I took it upon myself to research it and go totally gluten free for her. After she was gluten-free for a week she was a new little girl. Since she has been an infant she has had belly problems. She was diagnosed with GERD as a baby and has had chronic constipation (unlike most here have the opposite problem). She was growing fine until about the second year of life. She then started her decline on the groth curve and has now completely stopped growing for about 18 months. She is 36 pounds and only 42" . She has not gained weight in over a year and has numerous environmental allergies and is taking allergy shots for those. She also is asthmatic. They just ran the DQ2 and DQ8 tests and she came back positive for the DQ8 only since she has been gluten-free for so long now. The doctor has asked us to go on gluten containing diet (no wheat though due to her allergy to it) for 6 weeks and redraw the blood work. My daughter has really been through enough in my opinion and I have a problem making her sick for six weeks so they can redraw the blood. I asked if this would change their treatment plan for her if the test came back positive and they said no it would just give her the official seal of celiac disease.

I have tested putting her back on gluten before and she gets immediate cramps and bloating and feels as if she needs to vomit(although she never does). I feel to put her through this knowing the pain it will cause her is abuse. I know that is a strong word but who ever wants to hurt their baby right? How will having a true doctor's seal of approval for this disease help her in the long run. I know it helps to claim the expensive food as a tax deduction but is that all? I will keep her gluten-free regardless of the SEAL from the doctor or not. They have ran all other blood work imaginable including a sweat test for CF and they all came back normal.

We are not out of the woodwork with her health issuses but it is so nice to finally see her smile, enjoy her again and not see her so miserable. She just started making friends at school and building some self confidence and the food challenge will negate all that work as she will withdraw and be miserable again.

What is my next step? Do I ask the doctor to do stool samples for malabsorption or does that really matter since she has constipation and not diarrea(sp?). Why is she still not growing after going gluten-free like I have read on the other posts? She still doesnt want to eat much but at least it doesn't cause her pain anymore. Could this disease have messed up her hormone levels for growth since it went undiagnosed for so long? Does she really have this or does she she just have an overly sensitive belly like the rest of her immune syatem with all the environmental stuff?

Thanks for your help.

Sandra

[jadobson]

I've so been where you are at to some degree. Our son was 34lbs and 7 years old. To make a long story short an edcronologist find his blood work abnormal and reffered us to yet another gastro doc. She couldn't see us for 3 months. I too did the research and put him on a gluten free diet. Less than a year later when I was bringing my daughter in for similar issues she suggested the blood allergy test. It was postivie for wheat. I had to have him eat a hamburger bun a few hours before the test. Thankfully not a lot of wheat and he was over the discomfort in a few days. I was told that by having the dx of wheat allergy that would cover us for tax purposes, and in the past 3 years we've never had a problem with that. Just last summer with me keeping him on a totally gluten free diet they finally gave him the label of celiac dx. based on the diet intervention working. It took three years but he is finally within the normal size range of his peers. I don't know if this is an option for you as you said she still isn't growing, but an endocronologist would be able to do a simple blood test to check for the growth hormone that you are concerned about. We had to go that route too. Thankfully normal. Plus I'm sure you've read that it can take 6 months sometimes for the insestines to heal. Hang in there. It can be a really ruff road.

Julie D.

[frstr8tedmom]

Thanks for the reply and info. I have a conference with her doctor tonight and the endocrine tests have been suggested to me before the celiac and at that time she was so sick I didn't want to put her through the blood draw. Now that she is healthier I may do that to see if her hormones are effected also. Hopefully her system will kick in soon and she will heal and grow. I just wasn't sure with the constipation issue being different than most celiacs "normal" diarrea problems that I don't know if malabsorption could be an issue for her.

Thanks again.

Sandra

[darlindeb25]

i dont know that there is a normal celiac patient--some of us have diarrhea , some are constipated , some have no symptoms at all and are diagnosed by accident, imagine that , by accident and some of us have doctored for years with no results --if you read the posts in this forum, you will find as many symptoms as there are people --many celiacs gain weight after going gluten-free, some of us lose weight after going gluten-free ---i think you already know your daughter is celiac and i guess it is up to you to decide if you want an official diagnosis--i dont need one for me--i suffered long enough and now i feel so much better--i dont care if i am celiac or gluten intolerant--i will remain gluten-free for the rest of my life deb