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Doctor Won't Do Yearly Follow Ups
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3 posts in this topic

Is this ok? My daughters pediatric gi has done a repeat biopsy and blood test that both show damage is healed and in normal range. She said there is no reason to do a yearly blood test. Why pay for a test when i am doing everything humanly possible to keep her safe? She said she does them only on kids and parents who are not compliant or that she questions it due to custody issues. Since I go overboard on it, she said she has no worries. She said since my dd is a silent celiac then even if the test was positive, id never know what caused it. She said to keep up the good work and released us. Is this ok?

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The celiac center states:

"We recommend new celiac patients receive

follow-up testing twice in the first year

after their diagnosis. The first appointment

should occur 3 to 6 months after the

diagnosis, and the second should occur

after 1 year on the gluten-free diet. After

that, a celiac patient should receive

follow-up testing on a yearly basis."

There is still debate over what is "appropriate follow up care" among the medical community apparently because Dr. Murray, et al. just published a study suggesting there needs to be some standard protocols in place for treating every celiac after diagnosis.

My GI doc did lab work every few months on me the first 2 years (but I had been very ill and unDxed for years and had a lot of complications) and he will now go to every 6 months and do a biopsy next year.

Maybe it is different for little ones, but I would ask your ped to do it for your child. --as Karen has suggested. IMHO

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • What a gross title–it bothers me and I wrote it! It wasn't my idea originally. The research paper the data came from was entitled, "Experimental hookworm infection and gluten microchallenge promote tolerance in celiac disease" published recently in the Journal of Allergy and Clinical Immunology. View the full article
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
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