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Tired Of Having To Deal With The Attitude


The Kids Folks

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The Kids Folks Apprentice

Hi-

From some of my other posts, you probably know that we went against the doctors wishes for a biopsy for our 7yr DS, who had been having C issues since he was 2 or 3. (he had a neg blood test - however, I don't think that it was a full panel) Following the ped and pedGI orders or son landed in the ER. We decided enough already mama bear knows best and started a gluten free diet and watched all of the issues pretty much disappear!!

I asked the ped for a note to give to the school so that I could start working with the dietatician at school so that he could have hot lunch. I received a snippy note - not very professional IMO to give to the school after asking numerous times (it took 3 phone calls and about 6 weeks to get her to write the note). She even put in the note that he was scheduled for a biopsy and that "the parents decided to forego the tests and try the diet. She went on to say that they now have no way of knowing now if we are dealing with full blown celiacs or just an intolerance, so please don't give him gluten if possible!!

OMG - I cannot believe this! I can't believe that I now have to deal with the ped's attitude. I can't imagine telling her that we are now in the process of switching our 4 yr DD over to a gluten-free diet as well. She has gerd and has been on medication for at least 2 years. Her new med resolves her gerd but makes her sick to her stomach so that she doesn't want to eat - great huh?!

Anyway - wondering if anyone else is dealing with snotty ped's and if you know of any pediatrician's in the twin cities area that "get it".


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wsieving Contributor

Well, I cannot help you find a ped because I am in the midwest, but I totally feel your pain. Around here it is hard to get away from the middle-eastern docs. My current ped was absolutely wonderful... at first. But he is one of those "doctors and tests are never wrong" kind of guys, and even though his caseload seems small for the area he never seems to remember us or why we are there. We just decided this past week to search for a new ped because he just gave my youngest son the second physical in 2 months. He was supposed to be there for a check to see if he still had fluid on his ears (he is six and still having ear infections frequently, AND recently found he has a bifid uvula which likely also means he has a submucous cleft of the soft palate). He still had fluid on his ears, but instead of referring us to a specialist like he said he would previously, he gave him a physical and said sometimes it is normal to have fluid on the ears. He also refused to write a note for the gluten-free diet for my oldest son who has ADHD because he was not tested for Celiac. He knew I was not suggesting that he had Celiac and that I just wanted to try it and see what effects the gluten-free diet had on my son's ADHD.... gggggrrrrrrrrrrrrrr

I miss my family doctor.

At any rate, there ARE good doctors out there. I hope you find one soon. I can imagine how difficult it must be in such a large area.

kbtoyssni Contributor

Not a pediatrician, but Dr Ronda Stellar at the Shoreview Medical Clinic is great with celiac. She routinely tests her female patients who have trouble conceiving for celiac. I have unfortunately moved houses and jobs to the other side of the city and can't see her anymore.

mommida Enthusiast

Can you contact your local Celiac support group for Celiac experienced Peds.?

sugarsue Enthusiast

You might try to locate a family doc or peditrician who is also a Dan! doctor. Since they deal with children on the autism spectrum, they are supporters of the gluten free diet even with no testing. Just a thought. Our doc sees children on and off the spectrum so we get the benefits of that "alternative" methodology.

Good luck!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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