Need Help For My 5 Year Old Daughter. . .

[CassidyMama]

Back in November 2013, we received results from a food sensitivity test that my daughter was sensitive to wheat and gluten. This was after about 6-7 months of her having a bad rash on her hands that everyone referred to as eczema. I originally asked her pediatrician about it and was instructed to put Aquaphor on her hands. I thought it was strange my daughter would be having dry skin problems in April and kept researching. Finally my chiropractor got me in contact with a testing place for food sensitivities, which is how I got the diagnosis I did.

 

After I got the diagnosis, a lot of things started to make more sense. Like her coming home from daycare not wanting to eat dinner and the constant stomach aches that I tried to not make a big deal out of that were probably part of a reaction to something she ate.

 

Shortly after I got the positive test results, I had to take her and her brother to the doctor so I brought the lab results with and the pediatrician seemed shocked that I had her tested. Even to this day, when I look at her records, they did not have a wheat/gluten allergy listed. I have since switched doctors. It was at that visit though that I asked about testing her for celiac's, which she sent us immediately to the lab for a blood draw. I have heard though that since she was off of gluten for about 7-10 days, that test could be inaccurate. Any thoughts on this?

Unfortunately, she must be getting it still because she is having the eczema on her face now. I feel terrible for her, and since I don't know how this feels, I am looking here for help. I really would like to have another test done for Celiac's but what is the right approach?

Any advice/thoughts welcome, thank you!

 

[lovemybabies]

Back in November 2013, we received results from a food sensitivity test that my daughter was sensitive to wheat and gluten. This was after about 6-7 months of her having a bad rash on her hands that everyone referred to as eczema. I originally asked her pediatrician about it and was instructed to put Aquaphor on her hands. I thought it was strange my daughter would be having dry skin problems in April and kept researching. Finally my chiropractor got me in contact with a testing place for food sensitivities, which is how I got the diagnosis I did.

 

After I got the diagnosis, a lot of things started to make more sense. Like her coming home from daycare not wanting to eat dinner and the constant stomach aches that I tried to not make a big deal out of that were probably part of a reaction to something she ate.

 

Shortly after I got the positive test results, I had to take her and her brother to the doctor so I brought the lab results with and the pediatrician seemed shocked that I had her tested. Even to this day, when I look at her records, they did not have a wheat/gluten allergy listed. I have since switched doctors. It was at that visit though that I asked about testing her for celiac's, which she sent us immediately to the lab for a blood draw. I have heard though that since she was off of gluten for about 7-10 days, that test could be inaccurate. Any thoughts on this?

Unfortunately, she must be getting it still because she is having the eczema on her face now. I feel terrible for her, and since I don't know how this feels, I am looking here for help. I really would like to have another test done for Celiac's but what is the right approach?

Any advice/thoughts welcome, thank you!

WOW! I feel like your concerns sound so much like mine, but my daughter is 4!! My daughter has these things on her face that look like pimples that have been picked, yet they show up looking like that. I really believe she has Dermatitis Hepiformis (celiac rash) but the dermatologist we took her to took the biopsy from her back, not near her spots, and it came out negative for DH... After doing more research, it appears he did the biopsy for nothing, since it should have been done near the spots (I still have yet to have a doc confirm this, but dietician told me and celiac foundation says so...) Have you tried consulting a dietician? I found mine super helpful, I was super blessed to find one with a daughter with celiac, so she was very knowlegable, but also understanding... I found out that I was cross-contaminating her with our toaster oven, using the same spoon for my stuff and hers, and even bake ware that had brown stuff baked on, she told me that was gluten, and could cause a problem depending on how sensitive she is... My daughter did test positive for the celiac gene, high risk, but at the time, just like you, she hadn't been eating gluten for very long, and I suspect the results were affected. She has many other symptoms when she has gluten, so I KNOW it is an issue for her whether it is actually celiac yet or not, but it is so hard...

Would you mind sharing more info on your daughter's skin issues? Does it sound like my daughter's? Or different? The spots will come for about a week or so and start to disappear on her, as more come... they are extremely itchy...

Good luck!! I'll pray for you!

[CassidyMama]

I will actually take some pictures and try and post them later. Her hands are the worst, but in the past month or two there have been a few known times where she had gluten and she started having the dry patches around her mouth. Those on her face are more representative of what I have seen for eczema.

I did find this health food store close to my job that is owned by two certified gluten specialists. I have gone in there once and got some good information. I have also since found a new pediatrician that my doctor will see on June 4th. This pediatrician does the food sensitivity tests in her office. So, I am hopeful to have a good visit with her and see what she says about testing for Celiac's. The blood test was most likely not 100% accurate. The gluten specialist told me if they have the gene, they are Celiac. Sometimes it can be dormant but if your daughter is reacting, I would guess she is. 

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The dietitian might not be a bad idea. I will see how it goes with the pedi. Also, with her skin, her hands constantly itch and lately she has been saying other parts of her body itch (belly, legs, arms), which from what I read of DH, it can be itchy right before a new spot breaks out 

I don't think a lot of these doctors have the right information to make the best decisions, nor do they take the concern serious enough. My old pedi's response to eczema being related to food sensitivites was that only patchy eczema would be a sign of that. How patchy does it need to be if it is covering both of her hands?

Thanks for the prayers! I will keep you and your daughter in my prayers as well!

[kareng]

Food sensitivity tests are not tests for Celiac and have little validity so I doubt an MD would go with those results.   I see you live in the KC area.  Children's Mercy has a Celiac center.  Did you get the actual Celiac tests run by your MD?  

[CassidyMama]

I live in the Chicago/Northwest Indiana area. 
The food sensitivity test was done at a lab on my own after the pediatrician told me eczema and food allergies/sensitivities were not related. When I went back to the same pediatrician with the food sensitivity results for my daughter's records, I asked the doctor since those came back showing a reacion to gluten, how can I be sure about celiac's disease and she did a blood draw. I have a copy of the results for my records but given the fact she had been mostly off of gluten for about 7-10 days prior, I don't feel that was accurate. I don't really want to put her back on gluten given the fact she has such bad reaction so I was hoping to do the gene testing instead.

[kareng]

sorry.  I looked at that link wrong.

 

You have a really good Celiac center there - Univ of Chicago Celiac Center.  The head is a pediatric GI, I think.

[StephanieL]

Intolerance testing isn't scientifically sound.  It hasn't been peer reviewed nor approved which is why Dr's won't order the testing nor do the results hold much for them. 

 

Food is usually not the cause of eczema.  If you think it is food related, I would keep a very detailed food log to try and see if there are any clues.