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Diagnosed A Week And A Half Ago....


brandiwest

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brandiwest Newbie

Boy what a HARD diet!!! :)

I first had a celiac panel drawn in which the Tissue Transglutinamase came back elevated at 38, but the IgA was negative.

So I was referred to a GI specialist. He did an Upper GI scope and took biopsies from my small intestine, which came back NEGATIVE.... so he was a little puzzled with the conflicting results.

1 positive celiac blood test, 1 negative and now the negative biopsy. So he wanted me to do a PillCam Endoscopy where I swallow a camera and wear a computer for 8 hours, which my insurance wouldn't pay for...

I ended up doing the PillCam Endoscopy and it showed the the villi of my small intestine was gone, the lining of my small intestine was smooth.... so I had celiac.

I have been Gluten Free since the next day... but it has been hard... I have lost 3 pounds in a week and a half because I can't find anything to eat.... but I am hoping with all the help I will find on the forum here, I will be able to eat!!! :)


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Lisa Mentor

Welcome to the Club! This is a great place. Take a walk around.

Keep your diet simple in the beginning. Meats, fish, rice, potatos, fresh veggies and fruit. Stay away from dairy for a while and spend as much time as you can reading here.

LDJofDenver Apprentice

Yes, from all accounts, seems like the best initial advice is to keep it simple.

You will find, however, that there is more safe food out there than you realize. Many mainstream grocery items are gluten free. There are shopping guides available, I like the cecilia's marketplace grocery guide (Open Original Shared Link). It's about $25 but worth it (simplifies your life, big time).

Plus I've found that if I email (or call) a company, many are quick to send you information on which of their products are safe/unsafe (Heinz, Hormel, etc.). When in doubt (sometimes there's an ambiguous ingredient!) I contact the maker.

It will get easier. After a few months you'll have a pretty good handle on which foods are safe so you're not reading labels for 20 minutes in each aisle!

Best to you, and welcome to healing.

brandiwest Newbie
Welcome to the Club! This is a great place. Take a walk around.

Keep your diet simple in the beginning. Meats, fish, rice, potatos, fresh veggies and fruit. Stay away from dairy for a while and spend as much time as you can reading here.

Why keep away from dairy?? I am a little confused by this?? Pretty much all I have been eating is vegetables, Gluten Free Chex, and Cheese.... LOL So I am doing BAD as far as avoiding dairy!!

lizard00 Enthusiast

It's best to avoid dairy in the beginning because lactase is produced on the tips of the villi. When the villi are destroyed, the lactase is no longer produced, making one become lactose intolerant. In many, this is only temporary, and once you heal you can reintroduce dairy into your diet. But hold off until about 6 months before you try to reintroduce it.

brandiwest Newbie
It's best to avoid dairy in the beginning because lactase is produced on the tips of the villi. When the villi are destroyed, the lactase is no longer produced, making one become lactose intolerant. In many, this is only temporary, and once you heal you can reintroduce dairy into your diet. But hold off until about 6 months before you try to reintroduce it.

Thanks so much for an answer!! :)

My doctor did not tell me ANYTHING... he handed me a print out from the internet on foods with gluten in it and how gluten is hidden in labels and pretty much said "good luck".... He never said anything about being careful about anything else while waiting for the villi to grow back... any other tips? I did start taking a multivitamin... after I researched to make sure it was a gluten free one! :)

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    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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