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The Long Awaited Appointment Is Near
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After about a 2 month wait, my appointment with the highly recommended celiac specialist is on Friday (10/8). Yeah!! I met him during a local GIG meeting and spoke with him for a few. He's a GI spec and is head of nutrition at one of our leading hospitals. He'll be running the HLA tests (gene typing) and will probably repeat the endoscopy (since I got it 2 years ago and only 3 samples were taken). I've been in gluten limbo for all this time, so it will be nice to get all these tests done and possibly get some answers. I've been reading much and feel well-prepared by the forum community.. so my thanks.

PS... anyone in doubt of whether they should change their current doctor should request a copy of their medical records. :lol: My previous doctor totally lied about continuing tests and made it out like I didn't want to do them... he's the one that suggested I not.

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Good Luck and I hope all goes well. Please let us know how it goes on friday.

Lisa :)

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I must say that I'm very pleased with my visit to the doctor... he was extremely thorough. I spent over an hour in his office speaking with him about everything I knew and why I was there... I didn't leave out a thing! I even mentioned my recent vertigo spells (which haven't occured in a while). They drew about 4 vials of blood and he is re-running the thyroid (because I'm very cold intolerant), a complete metabolic panel w/ sed rate, will check for b12 & some other common deficiency which I can't remember, he'll also re-check my liver (because my ind. bilirubin is always high), re-run some celiac tests, check for intestinal inflamation and here's my favorite and the most anticipated... the HLA (gene typing)!! It will be a couple of weeks before these results come back. In the meantime, he gave me his card with his e-mail address and told me if I had any questions or concerns that he'd be sure to get back with me asap.

My anti-gliadin antibodies are positive, but low-positive... he's wanting to make sure that celiac is not down the road for me.

I like this doctor and the downtown trip was certainly a pain in the butt... but so worth it.

Gretchen

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I received a call from my doctor today (less than a week from the test date!!). Anyway, it's good news! He performed the HLA (gene typing) and I'm negative for both DQ2 & DQ8. Apparently I will never develop full blown celiac.

After the wedding sometime (which is 11/6), he might want to perform the ELISA testing to see if that's where the cause of my symptoms are coming from.

Gretchen

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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