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7yr Old Daughter Has Symptoms

Wispyshadow

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Wispyshadow Rookie
Wispyshadow
Posted

I'm really concerned because my daughter just had a check-up and she has dropped from the 75th percentile in height down to below the 3rd percentile. She has always been very thin, she only weighs 37lbs. and has weighed that amount for a year now. She is 7 years old and I am really worried and her pediatrician is concerned that she isn't growing at a normal rate. She also complains of stomach pain daily and says her legs and feet are sore. Each thing has always been addressed seperately and just today I started putting the whole picture together. THey did test her at the pediatricians office for anemia and never called me back with results so I assume that it was normal. I feel that I should push the pediatrician to test her further to see if celiac disease is the culprit. My mother keeps pushing me to just forgoe the Dr. and just go gluten-free without a diagnosis. My insurance will pay for everything and it would be much more helpful to have a diagnosis but I'm really not sure if the Dr. will take this seriously if just blow it off. Any opinions or help would be appreciated.

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mushroom Proficient
mushroom
Posted

Hi, and welcome to the forum.

I would definitely call the pediatrician and get the results of the test; you should always follow up on results, sometimes they are overlooked. If they were normal then I would request further exploration of why she is not growing because this is a serious issue; express your concern. If you get no joy from him, is there another doctor the family uses who could help? Maybe discuss it with the pediatrician for you. Is there another pediatrician in your area that your insurance covers? Do you have to get HMO referral? Before just going gluten free I think you should push the doctors further.

Wispyshadow Rookie
Wispyshadow
Posted
  • Author

Thanks for the suggestions. It really is hard right now because due to the holiday all the Dr. offices are closed and she still never called me back yesterday. I started really piecing things together last night and thinking back to when she was a baby. I had another ped in another state where we lived test her stool for fat malabsorption but said she couldn't have celiac disease because she didn't have a big swollen abdomen and the only case he had ever seen that was what they looked like. I had never heard of celiac disease and really had no idea and just had to take the dr's word for it and we just wrote it off that she was just a small child. She has always had either loose stools or constipation and the dr's have just really written it off as just not a big deal. She has been on colace and had to take children's immodium off and on enough that I keep it stocked in the medicine cabinet and she is used to it and asks me for the one she needs when she starts having issues. From looking back and piecing everything together she has been dealing with this since she started eating regular food. I didnt' notice much when she was a baby I'm guessing because I made all of her babyfood from fresh fruits and vegetables at home. I feel so bad that I missed it.

:D:D Good news!! The pediatricians office just called me and wants to see my daughter. She has another appt on Wed next week. Say prayers that we get some supportive answers and help!!!

ang1e0251 Contributor
ang1e0251
Posted

I'll be thinking of you. Tell the dr you want a full celiac panel run. Listen to what he says but don't take no for an answer. THe old dr may have seen more celiac children, he just didn't recognize it.

mushroom Proficient
mushroom
Posted

I am so glad that you got a response. I agree with Angle that you need to have him run the full celiac panel. I do hope that you get some help and answers.

Wispyshadow Rookie
Wispyshadow
Posted
  • Author

We went and had blood drawn today and our new pediatrician is really taking this all very seriously. I feel really good about how we are being treated. She is running a full celiac panel, thyroid panel, liver panel, and some other blood tests. She told me she doesn't want to leave a stone unturned. We should have results back by early next week.

mushroom Proficient
mushroom
Posted
We went and had blood drawn today and our new pediatrician is really taking this all very seriously. I feel really good about how we are being treated. She is running a full celiac panel, thyroid panel, liver panel, and some other blood tests. She told me she doesn't want to leave a stone unturned. We should have results back by early next week.

Great news!

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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