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Another dx at our house

Discussion in 'Celiac' started by Jordansmom, Apr 30, 2012.

  1. Jordansmom

    Jordansmom Approved members

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    My DD (non-D) was dxd last week. I've been too bummed out to post. :( Last year I convinced my son to go gluten free even though the Celiac panel came back neg. He's married and lives at college, but I helped with the transition, because I knew more about gluten free and Celiac, than he or his wife. I've been frustrated he couldn't get a dx and by how insanely sensitive he is to cross contamination. But he feels so much better that he said he'd never eat gluten again.

    My DD was having similar symptoms, but was unconvincable. Since she's 20 now, she's refused to see a dr. To find out whats wrong. I had her tested when the symptoms started a few years back and supposedly her celiac test was neg. I think my pedi screwed up now. When I took her to a pedi G.I. They told me maybe she had irriitable bowel syndrome. Really not helpful at all. She decided then she hated Drs.

    She told me numerous times she'd die before she ate gluten free. Well one night after a particularly bad attack, she gave in and told me she'd do anything to feel better. I made her an appointment immediately. She had the celiac blood work done along with a bunch of other tests. the nurse called pretty quickly to say she has hypothyroidism, which I had also suspected earlier and had also come up neg before. They prescribed meds and said she needed to talk with the doctor at his next available appointment 6 weeks later. :( I asked about her celiac blood work, the nurse said she was looking it up, then came back and said it was neg. I pushed the nurse saying I wanted an actual phone call with the Dr. if we were going to have to wait 6 weeks to talk to him about the hypothyroid.

    When he finally called, he asked if the nurse had given us a dx. I said no. He said well she has Hashimotos hypothyroid and Celiac. I said the nurse said she was neg for Celiac. He said "Oh no. Definitely not neg. Her antibody count was so high, she voided the test.

    Has anybody ever heard of this? He's a fantastic Dr. I took her there because I knew he'd figure it all out. I know she ought to have a biopsy, but also know she'll refuse. So do I trust this dx? She's now eating gluten free regardless.

    She cried terribly for a couple of days, but then really gave in to gluten free 100%. She is already feeling so much better. The attacks of pain and diareah have stopped other than one cross contamination. The constant nagging stomach ache is still there. But I expect that could take months.

    My son has an appointment with a respected specialist and for a biopsy. But the Dr. has insisted he eat gluten for 6 weeks. He nearly refused, but finally decided he has to know what his real dx is, given his sister's new dx.

    I just wanted to thank everyone who posts here. You have all been a big support to me without even knowing it. I expect I'll have a million new questions. Dealing with celiac full time is so much harder than supporting my son and making sure family get togethers were safe.
     
  2. Caldercup

    Caldercup Approved members

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    My son had this. His lab results just said "greater than" and the highest number on the test. (I think it was 1250, but I can't remember the exact number.)

    At the time, the biopsy was considered the "gold standard" and we did it. Again, the results were classic Celiac and we went GF right away. Now, the studies being done are reporting that the blood work is quite accurate and a biopsy might not be necessary if the results are that high. (I've listed the studies before, but they can be found with a simple Google search.)

    And my son had zero symptoms, and neither did I. In fact, I didn't know I had Celiac until, after 3 months going GF as a solidarity thing for my son, I got glutenized by some cross-contamination. I was SO sick, and so was he. The GI told me not to bother with the biopsy because the blood test we ran showed my results were high, even after being GF for 3 months.
     
  3. Jordansmom

    Jordansmom Approved members

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    That was something else I was thinking. If she's so high she voids the test, we could probably do the test again in the next few months and she'd still have antibodies show up.

    I'm worried about my other kids since, like you they could be symptom free. And now they are all expressing vague intestinal concerns, whether its Celiac or just paranoia with the new dx. You should hear our family dinner conversations lately. I'd laugh, but its really not funny. Autoimmune disease makes my entire family worry now. I'm just going to have everyone tested for peace of mind. Jordan's endo only tests every 3 years. She's already lactose intolerant and has a recently growing list of food that makes her stomach hurt. We'll all feel better with some testing behind us.
     

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