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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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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