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Tested Negative
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2 posts in this topic

I'm new to the board. I've read articles about CS here but I guess not enough. After years of agony and endless tests with no answers, I finally read about Ciliac Sprue and put myself on a gluten-free diet. I was elated when my pain, bloating, mental fuzziness, and fatigue suddenly went away. I stayed well for about 5 months and then had a bad relapse after eating in a Chinese restaurant. I think I had several things to eat I shouldn't have, including soy sauce.

So I started investigating more and realized I could really only eat things that were whole foods or prepared items that were already deemed OK. I can deal with it. Anything is better than my quality of life before. As I read more, I realized my grown children and grandchlidren could be at risk. I wanted to get diagnosed so my family would have some definite results in hand if I tested positive.

I went to my GP Doc and asked him for the test for antibodies to endomysium and tissue transglutaminase. He is not at all familiar with this disease and asked me why I would want the test if I tried the gluten-free diet and felt better. I answered I was especially concerned about my grandbabies having it and possibly becoming malnourished.

He is also not at all familiar with the blood tests and after calling the lab to see if they could accomodate the tests, he was told they were esentially the same test. (Are they?) So I only had the tissue transglutaminase, I think.

Anyway, the office called me today and told me the test was negative. I was crushed because if it wasn't CS I must be crazy! Then I read here how one must be "active" to test positive. I can't live like that. I was so, so, so sick last summer. I felt my life was over.

Any other options? And any Docs in the Metro Detroit area who are in the know?

I do have other auto-immune and connective tissue diseases. For me, they pale in comparison to the pain and agony of my Celiac Sprue symptoms.

Thanks so much for your time and sharing.

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If you have been gluten-free for that long the test would show up neg. I think you have to be eating Gulten for a while to show up pos. You may want to try the Enterolab you can e-mail Dr. fine and ask if it would work for you. You can do the genetic test and that would tell you if you have the gene.

--Good luck,

Kayla

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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