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? On Getting Diagnosed (newby)

Guest Aziah

By Guest Aziah
in Parents, Friends and Loved Ones of Celiacs

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Guest Aziah
Guest Aziah
Posted

Hi there! I have a 15mo DD who we recently found had milk and soy allergies. She did well after eliminating them from her diet...but then she started getting worse. Her stool is mushy and will actually burn her butt so bad that she will actually get blisters (the poor kid SCREAMS every time she wets herself or needs wiped) :( . She also exhibits eczema that is being treated with hydrocortizone.

We have just visited our 2nd gastroenterologist and the guy seemed more anxious to go home for the day then to spend time with us. He mentioned doing a biopsy/endoscopy...but not for several months. The problem is, I am pretty sure DD has Celiacs or at the very least, a gluten allergy. Did you guys have problems getting your kids tested for Celiacs?

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mistresninos Rookie
mistresninos
Posted

We finally received our confirmation today. Our doctor told us that the way we figured it out is the best...by using the diet. He said that the blood tests are not always accurate. I have read that for small children they are even less accurate.

Try eliminating all the gluten from the baby's diet. That's where we started. Within just a few days our son had improved. His stools were very much what you have described. He's been fine as long as he stays on the Gluten-free diet. We may have an endoscopy next year but for now the doc is happy with our own "lab results."

Where do you live? If you are in Southern California, we see Dr. Grant at the CHOC PSF Clinic. You can contact them through Children's Hospital OC. I would ONLY see him though.

chaddwell Apprentice
chaddwell
Posted

I'm sorry to hear about your daughter.

Have you visited with a pediatric GI doctor? If not, maybe that will be a better bet for your little one. Check though and see if the doctors at the office are experienced with celiac disease. Have you talked to her pediatrician? I wonder if he/she has any good recommendations. I was reading online the other day about celiac panels and apparently there is a pediatric one. Although as already mentioned blood tests for children may not always be accurate.

Did she have any blood work done?

My daughter has food allergies and eczema. The eczema never seemed to completely go away. Hydrocortizone didn't work and Elidel is out because of the cancer warning now. We recently had her at the pediatrician and he gave us samples of a new cream that recently came out and a script incase it worked. I am excited I get to tell someone about it because it actually works! Her eczema is so much better and her skin is feeling smooth and soft like it should. I could tell the difference right away. I haven't found anything that really worked like this, including moisturizers, although, they should still be used after a shower according to my doc. Since this stuff is pretty new the pediatrician wants me to call him to let him know how it's working. I'm going to give it till next week but I think I'll be calling with good results at this point.

Ok, so here is the name of the cream: Mimyx cream by Stiefel Labs. By prescription only. You should really look into it.

I'd like to hear how it works out for her if you decide to try it.

Good luck to you.

Channon

Canadian Karen Community Regular
Canadian Karen
Posted

I agree with the advice to put your child on the gluten free diet and see if there is any improvement. I too have heard/read numerous times that bloodwork for children under 2 is very unreliable......

Good luck! There are lots of people here with small children on a gluten free diet who can walk you through this......

Hugs.

Karen

Guest Aziah
Guest Aziah
Posted

We went to the doc today and she is scheduled for surgery next Thursday....please see my other post and let me know what you think!!!! I could use some advice and answers!

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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