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Help Withceliac Test Result

Cwish

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Cwish Newbie
Cwish
Posted

For years I have suffered with chronic diarrhea , fatigue and insomnia. I assumed all these were related to the fact that Ii have endometriosis. A few weeks ago I starting having more symptoms. My legs would ache everyday, heart palpatations, weight loss, headache, feeling like I had a fever but didn't. Generally I just felt terrible. I am very active. I run and play tennis several times a week but for a month I just didn't have it in me to do any of that. Just going down the stairs was tiring. I broke down and went to the doctor. He took blood and suggested celiacs disease as a possible cause. I waited a day and after reading about celiacs and seeing that my symptoms seemed to match what other people said I started eating a gluten free diet. Within 3 days I felt 100% better. For the first time in a decade I went 3 days with no diarrhea! All the other aches and pains were gone. After 5 days I called to get blood test results. The nurse said everything was normal in my blood work but the celiacs was not back yet. It would take another week. I continued to eat gluten free. On my 10th gluten-free day I accidentally took in some gluten. I had some buffalo wings and I just didn't think. It didn't dawn on me they would be slightly breaded and fried in oil that was also contaminated. Lesson learned. Well within an hour of eating them I started feeling like I was getting the flu. Then the diarrhea hit. I started thinking oh no what did I eat. Then my husband said..oh the wings! Well to cut to the chase I called today for my celiac results. The nurse who read me the report had never read one of these before but she said the doctor had marked celiac negative. She had no thoughts on if I could be gluten intolerant. The only numbers I got out of her were.

ttg-3

IgA- 6

And Something globulin A was 142.

Since I feel better off gluten do I just assume I am gluten intolerant? Should I seek further medical tests?

Any help or thoughts would be greatly appreciated.

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kareng Grand Master
kareng
Posted

Get a copy of the tests. Look for yourself because the nurse didn't know what she was reading.

You could be one of the few that have Celiac but have a negative blood test. You could be gluten intolerant but not Celiac. Because you have had such great results being gluten-free, in my opinion, you should continue eat gluten-free.

Cwish Newbie
Cwish
Posted
  • Author

Get a copy of the tests. Look for yourself because the nurse didn't know what she was reading.

You could be one of the few that have Celiac but have a negative blood test. You could be gluten intolerant but not Celiac. Because you have had such great results being gluten-free, in my opinion, you should continue eat gluten-free.

Thanks so much for the reply. I am going to swing by the office and see if I can grab the results. I am most definitely staying on a gluten-free diet. Is the false negative on these tests something that happens a lot? Also what type of specialist should I see? A GI or an endochronologist?

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