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Tested Negative For Celiac

Mo92109

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Mo92109 Apprentice
Mo92109
Posted

About 3 years ago, a Dr took blood and said I had an intorerace to wheat. After that, I had that horrible celiac test done, and it was negative. Well, I went on eating what I wanted and dealt with the D and all that. Eventually, I was getting so, so bad, that I decided to go gluten-free on my own. I started to feel great, for awhile. I did start to notice allergy symptoms - like itching and sneezing if I was gluttoned by accident.

Anyway, my stomach was bloated to the point I was getting mistaken for being pregnant (I am pretty thin otherwise) and I was having occsional stomach pain, even though I was very strict with my food.

So I go see a specialist. I get a blood test since he is positive I developed celiac, but, alas, that is negative too. I am happy and sad. Now what? ANYone been through this or have any ideas what I should do now? I am going to see a dietitian soon, but I don't know what that's gonna do since I don't know what food exactly to stay away from.

Has anyone ever looked into holistic healing? I'm usually a skeptic, but mainstream medicine is getting on my nerves. This is so slow and no one knows what's wrong with me.

I thought maybe I'd go on a gluten challege of some sort and keep a diary of what I eat and how I feel after, but am kind of scared from the allergy perspective. I just ate a teensy bit now and my nose is itching really bad...

Thanks for any feedback/suggestions/stories, anything...

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ravenwoodglass Mentor
ravenwoodglass
Posted
About 3 years ago, a Dr took blood and said I had an intorerace to wheat. After that, I had that horrible celiac test done, and it was negative. Well, I went on eating what I wanted and dealt with the D and all that. Eventually, I was getting so, so bad, that I decided to go gluten-free on my own. I started to feel great, for awhile. I did start to notice allergy symptoms - like itching and sneezing if I was gluttoned by accident.

Anyway, my stomach was bloated to the point I was getting mistaken for being pregnant (I am pretty thin otherwise) and I was having occsional stomach pain, even though I was very strict with my food.

So I go see a specialist. I get a blood test since he is positive I developed celiac, but, alas, that is negative too. I am happy and sad. Now what? ANYone been through this or have any ideas what I should do now? I am going to see a dietitian soon, but I don't know what that's gonna do since I don't know what food exactly to stay away from.

Has anyone ever looked into holistic healing? I'm usually a skeptic, but mainstream medicine is getting on my nerves. This is so slow and no one knows what's wrong with me.

I thought maybe I'd go on a gluten challege of some sort and keep a diary of what I eat and how I feel after, but am kind of scared from the allergy perspective. I just ate a teensy bit now and my nose is itching really bad...

Thanks for any feedback/suggestions/stories, anything...

I tested negative for years even though I was eventually so sick that I was homebound. No one ever mentioned to try the diet to see if it helps anyway. That delay in correct diagnosis caused permanent damage and effected many of my bodies systems. I reccommend everyone try the diet strictly for a month or two to see if it helps. Don't challenge until you are symptom free for at least a couple of weeks. You may also want to eliminate dairy at first. Good luck and hope you feel better soon.

GravStars Contributor
GravStars
Posted

you tested positive for a wheat intolerance, but negative for celiac? so wouldn't that mean all gluten isn't a problem, just wheat, so you definitely at the least shouldn't be eating wheat, right?

nettiebeads Apprentice
nettiebeads
Posted

I agree with Raven - since you felt better going gluten-free, then do so. Listen to your body. I was dx'd by diet challenge alone. My current gp knows I go to this site for info and support (lots of it here); I mentioned wishing I could get tested just to see what exactly I have, but he feels that the tests are far too unreliable to be considered accurate enough for correct dx. He's content enough to go with my previous gp's dx and the fact that I know my body well enough to recognize when I get glutened. I don't get the D any more - just extreme fatigue and high irritibility levels. You could try Enterolab and see what results you get there, plus the gene profiling. That's something I'm interested in - I'd like to know what I may have passed on to my dd.

Annette

Mango04 Enthusiast
Mango04
Posted

You could have non-celiac gluten intolerance. You'll be hard pressed to get that particular diagnosis from a mainstream doctor. If you know you feel better when you don't eat gluten, don't eat gluten :) Trust what your body is telling you. Don't even go on the gluten challenge if you know a teensy bit is giving you trouble...

Another possibility is your blood test could have been negative if you didn't have enough gluten in your system. Or, you could have a wheat allergy, which is different than celiac. That can be hard to test for as well...

Mo92109 Apprentice
Mo92109
Posted
  • Author

Thanks - I know I don't make sense, I just feel so lost. Sometimes I think I can't eat ANYTHING. I don't know if it's gluten, wheat or anything. I made an appointment with an allergist and am thinking about a holistic healer. I know I am forever done with "breads", but it would be nice to have light beer here and there and not be in a panic in a restaurant.

Getting rid of the giant bloated stomach would be nice too and I have had that on and off (mostly on) following a strict gluten-free diet.

tarnalberry Community Regular
tarnalberry
Posted

It may be worth trying an elimination diet to determine what the source of the problem is. Perhaps it's gluten, but perhaps it's dairy or soy. Continuing to work with doctors is a good idea too, but you have to find a doctor who's willing to work with you. Elimination diets are difficult to do, and you'll want to take some time planning one if you're going to go that route, but it may help pin down your problem.

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JodiC Apprentice
JodiC
Posted

Depending where you live you could try a biofeedback machine. These will tell you what you are allergic or intolerant to. You could also contact YORK INDUSTRIES (out of New York). They do a blood test for all the major allergens. Sometimes other conditions can cause your symptoms like endometriosis. This is what finally alerted my doctor and me to start doing some more research (more me than my doctor). I ended up having a complete hystorectomy due to undiagnosed celiac disease.

loraleena Contributor
loraleena
Posted

Do the stool test from enterolabs. It will tell you at least whether you are gluten intolerant or not and I suspect you are.

Susan123 Rookie
Susan123
Posted

I was diagnosed with non-Celiac Gluten Intolerance. For the two biopsies I had both were negative but my antibody levels were elevated greatly and I had one of the genes. For me, I choose to do the Gluten-Free diet. but I also have a wheat allergy. My only symptoms is a burning in my stomach the next day and headaches that could or could not be related. My doctor said the burning in the stomach could be the allergy side of things as allergies induce excess stomach acid to be produced. Do what works for you... if it makes you feel better than do it!

Guest greengirl
Guest greengirl
Posted

A lot of people on this forum have found out they have problems with corn - the bloating continued after they were strictly gluten free.

I was still having problems after going gluten free so I'm doing the specific carbohydrate diet (from the book Breaking the Vicious Cycle by Elaine Gottschall). It's still gluten free but is designed to promote healing, and then after a time you can go back to a regular gluten free diet.

Christine

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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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