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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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    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
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