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I just want to share my experience with my new Doctor and ask what do you think of the new GI's order of tests?

History -

I was diagnosed 6 weeks ago and after having had problems with the old GI since last year, I decided to switch Dr's for my 6 week follow up yesterday. I had an Endoscopy and no blood work in 2008, Endoscopy and Colonoscopy, no blood work in 2010. Treated for Gerd and gastritis both times. Found out from the new Dr, I tested negative on the biopsy both times for Celiac (didn't know I was tested either time).

This past March I had horrible pain, nausea, bad BM's, vomiting, thought I was loosing my mind, not focusing, no attention span, loosing feeling and numbness in hands and feet (same as last year). I was eating tons of snacks (gluten) and meals and feeling worst and losing weight. This went on for months, I OTC Zegrid & Prolocec for months. Finally saw my GP and was put on prescription Zegrid and Zantac in September, then 2 other Gerd medications and finally Nexium. Went to the GI and had blood work and a Sonogram for my Gallbladder in September. Well, TGA was 121 and confirmed Celiac with an endoscopy in late October. I had to go the next day to my GP because one of my BP medicine most likely contains gluten. My GP was the one who put me on multi s, Vit D, Calcium and fish oil.

I went to the new GI last night for a consultation and here's what I left with. Wants to see me in 6 weeks, in the mean time - stop Nexium (anti acid medication can elevate TGA readings) rerun my blood in 2-3 weeks Nexium free, have a small bowel series next week, video (SB) capsule endoscopy the following week, have a bone scan every 12 months (been 14 months since last). I still have extreme pain in the stomach and left side below the rib cage. Do you think the new test are warranted?

Would love some feed back and any past experience. Thanks all your the best.

Cathey

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When you say TGA I presume the test was the tTG IgA which was 121. Did he run any of the other celiac tests and were they positive or negative if so? The trouble with the tTG is that a high score CAN be attributed to other things, and also a positive endoscopy CAN be attributed to other things

(American Celiac Disease Alliance

One negative aspect of the TTG antibody is that it can be falsely positive in a patient who has another autoimmune condition. TTG false positivity has been described in patients with both type I diabetes and autoimmune hepatitis. Theoretically, it can also be falsely positive in other autoimmune diseases.)

although this is not likely to be the case. That is why I asked if he ran tests like the DGP and EMA. Let us know what celiac testing he did. Personally, I would consider myself diagnosed. Have you continued to eat gluten or are you gluten free (I will go back and check after I post this).

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Just found this post from Nov. 24:

"Add another Nerd to the list. Beside eating constantly (cracker, bread, etc) to get rid of the nausea I just kept blowing up like a balloon and might add not feeling any better (duh gluten). I'm 5 weeks gluten-free and have lost 10 pounds. I probably eat more now in the morning then I ever have, feel awesome and have a good outlook. Happy Thanksgiving."

Why is anyone still wondering about diagnosis? Positive tTG, positive biopsy, positive response to the diet Wonderful!!! If you stay gluten free and rerun your blood in three weeks it will be negative. Won't mean anything. A small bowel capsule endoscopy could be illuminating for anything else possibly causing the left side pain, but it has not been very long for healing. Also, a DEXA scan is a good idea, especially if your D was low. But I don't really understand all this doubting of your diagnosis of celiac. There could be something else as well but the pill cam will pick that up.

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I went to the new GI last night for a consultation and here's what I left with. Wants to see me in 6 weeks, in the mean time - stop Nexium (anti acid medication can elevate TGA readings) rerun my blood in 2-3 weeks Nexium free, have a small bowel series next week, video (SB) capsule endoscopy the following week, have a bone scan every 12 months (been 14 months since last). I still have extreme pain in the stomach and left side below the rib cage. Do you think the new test are warranted?

Would love some feed back and any past experience. Thanks all your the best.

Cathey

You haven't been gluten free for very long and it does take some time to heal. Rerunning the blood to see if your antibodies have dropped is not a bad idea but most doctors will give it six months after diagnosis. Are you still consuming soy and dairy? If you are you may want to drop those for a bit and see if the pain stops. Do make sure that for the small bowel series you are given gluten free contrast to drink, if you decide to have that done. The liquid will be thin not the chalky stuff. Since you are still having extreme pain having that checked out is not a bad idea but it is up to you if or when you want that done.

It may not help you but I find Pepto Bismal to help a lot when I get pain in that area. It usually helps me the first dose. I get severe pain when I get soyed, even more so than with gluten but that may not be the case for you.

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I think your new doctor is just being thorough. If you still have extreme pain, perhaps he is trying to rule out any other complications?

My new GI did a small bowel series and testing for Crohn's and IBD after DX because he said it is wise to check for lymphoma, obstructions, or anything else in the GI tract--especially since I went Un- DXed for most of my life.

It's not a horrible test and I was thrilled he was so thorough (after having been misdiagnosed and not tested properly for so long.) I was in so much burning pain in my entire GI tract, from my mouth to you know where.

Make sure you drink a LOT of water after the barium drink so you do not get "stuck". :huh:

I think he is erring on the side of caution, not second-guessing your DX at all. Just my humble thoughts. :) Best wishes!!

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Thank you all for your replys. I've been layin low waiting for results.

I am so happy (relieved) tonight all is good. Irish I didn't have to worry last month with the bowel series, thank god I carry wipes with me. That barium was out of me in less then 60 minutes, but also took 2 days of white poo-poos. I thank god I found a new good GI Dr. he was awesome and now my mind is at rest.

Ordered all these test, celiac profile - within in range normal, blood work (CBS, CMP, Vit D, Catt, Serum Gastrin) need a little more vitamins (folic, B12, D, calcium), small bowel series normal, capsule endoscopy - shows confirmed celiac, but no abnormal grows or obstructions. Told me to have my Bone Density every year, back on Nexium and wants to see me in 12 months to do endoscopy and colonscopy. Told me you must be following a very strict gluten-free diet. I am on a cloud tonight. Thanks again you guys are an awesome support team besides my DH.

Cathey

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