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Totally Confused
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7 posts in this topic

Hi all. I am now officially confused about my condition. I tested positive for Gliadin Antibodies in October and I just recently had the Endoscopy which turned out to be negative. My GI told me that there was no evidence of Celiac disease on the Endo. I am now totally confused because I am sick as a dog EVERY time I eat anything with gluten in it. My mother and two of my sisters are antibody and Endoscopy positive for Celiacs. All of them are terribly ill. I have the same symptoms, such as severe bloating, muscle and stomach pain, skin itching, mouth sores, severe fatigue, numbness and tingling in my hands and feet and sometimes I have coordination problems in my hands also. I am just wondering if I actually have Celiacs now after the negative biopsy. Anyone have any thoughts????

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I'm on this track now, except only one Gliadin test is elevated and I dont feel anything different if I eat gluten.

In your case, I would just do it.

If you need a firm confirmation you can go to a private lab and have the stool tests.

They told me one elevated gliadin blood test indicates Celiac may develop, but not necessarily.

However, if you are already sick from the gluten what do you have to lose?

I think the private lab tests are a better bet, but they are too pricey for myself at this time.

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A negative biopsy means NOTHING! If you have positive blood work you should be gluten-free! Some people can have positive blood test and negative biopsies and vice versa. If you need a dx then a stool panel test from www.enterolab.com is what I would do, it is accurate and more sensitve than blood.

If you do not need a dx from a doctor then try the gluten free diet for a couple of months and if your health improves, you need no further testing!

I hope you begin to feel better soon! :D

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Go gluten-free and see what happens.

richard

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I've had two negative blood tests - the first one was following a mostly gluten-free diet, so I had to have a second one after a six week gluten loaded diet. After the second test, I cleared out the gluten regardless of the test, because I was just so sick of feeling lousy. After a few days, I figured "Oh, what the heck - this must be all in my head," and I snacked heavily on cereal one evening. Now two days later, I'm queasy, gassy, I was first constipated and then had explosive, gassy diarrhea. According to the doctor's office, there was no change in my blood test results. What's going on??? I want to see the test results for myself - if the numbers are any higher, even if they're still within the normal range, does that mean anything? And why, during the six weeks of gluten challenge, did some of my symptoms settle down?

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you can be gluten intolerant and not have full blown celiacs yet, but if you remain eating the gluten, in time you will be full blown and it takes even longer to feel better--go gluten-free and feel good--forget the test--deb

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Twister ! Go gluten-free !

Kate ! The blood test has a horrible rate of false negatives. But i'd never imagined a celiac could have symptoms "settle down" during a gluten challenge. Tho now that i think of it, I used to (several years ago) be able to have some gluten w/out getting symptomatic tho i would have the common symptoms w/ a greater amount of gluten.

So there WAS, for me, a time where a gluten-challenge could proceed very differently, depending on the amount of gluten involved. How much gluten were u ingesting for the challenge ?

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    • He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.   Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 
    • Star Anise Foods  rice paper and spring rolls are gluten free they have brown and white rice versions. I have not had issues with these in the past when I used to use them. Should be able to find them on amazon.
    • Hi strawberrymoon, If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing. It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out. There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done. Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.
    • I have been living in Ho Chi Minh City, Vietnam, for two years, and finding gluten-free food is proving more difficult than I thought, even if I am cooking my own food. Wheat flour, called "bot mi" in Vietnamese, seems to creep into a lot of stuff nowadays. What's more, manufacturers do not feel it is important to list bot mi in the ingredients on a food's packaging unless it is a principle ingredient in the food. In other words, soy sauces or wraps with just a tiny bit of wheat flour added to add a touch of thickness or pliability are not guaranteed to list the ingredient. For some genetic reason, Vietnamese people are not nearly as susceptible to food allergies as Westerners - it probably has something to do with exposure to less hygenic foodstuffs having built up an immunity over hundreds of years - so it is not really considered important to split hairs in that department over here. Anyway, I love rice paper but have often gotten glutened by it when I have it. Can any celiac who could tell if a product had gluten by more than just the ingredient list on the back let me know a definitively gluten-free rice paper brand? I know that very few rice paper brands actually list wheat flour in the ingredients, but I don't 100% trust the ingredients list for products made by Vietnamese companies. Call me paranoid. By the way, I have a neurological condition that irreversably breaks down my immune system when I ingest gluten, so I don't want to experiment with trial by fire here.
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