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Don't Know What To Do. Negative Testing But Still Have Problems!

Konzelwoman

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Konzelwoman Newbie
Konzelwoman
Posted

I have had stomach issues since I was 10. (I'm 19 now) Nausea, vomiting ocassionally, diarreah, constipation, my whole gut is sore to the touch, etc.

Dr. originally said it was stress. Then acid reflux. Nothing helped meds wise.

Well, these symptoms recently (last few months) got very bad, and I also found out my grandma's sister and all her children had celiacs.

I had an allergy testing, and I am allergic to virtually nothing. Just trees.

I got an endoscopy and colonoscopy last week, and they are saying everything is perfect. Blood work, biopsies, all of it. No problems.

Now here is my problem. I cannot eat much of anything without getting sick, so I went ahead and tried gluten free cereal and pasta. No problems. I ate Cheerios yesterday, and had terrible stomach cramps and gas within 5 minutes. Had a cheese danish the day before and was nauseated all day. I have also been getting headaches and migranes almost every day to some degree. Sometimes after eating something with gluten.

The GI insisits that it cannot be gluten. It's IBS. Is it possible to have negative testing and still have celiacs or a gluten issue?

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defeatwheat Rookie
defeatwheat
Posted

    Have you had an IGA/TTG blood test? This is the test for Celiac. When they looked inside me they said all was well until the biopsy results came back and then it was clearly Celiac. The results of this blood test can give an indicator if you are headed in the direction of Celiac. I believe some result numbers are posted on this site and what they mean. Doctors don't give this test enough, you will need to request it by name.

    There are other conditions that make gluten hard to process. I don't know much about those but I do know they exist. Good luck. I have found if something makes me sick and I can figure out what it is I stop it. The problem is it is very difficult to figure out what is causing the problem. I'm still at it after nine years.

uncle russ Newbie
uncle russ
Posted

I have had stomach issues since I was 10. (I'm 19 now) Nausea, vomiting ocassionally, diarreah, constipation, my whole gut is sore to the touch, etc.

Dr. originally said it was stress. Then acid reflux. Nothing helped meds wise.

Well, these symptoms recently (last few months) got very bad, and I also found out my grandma's sister and all her children had celiacs.

I had an allergy testing, and I am allergic to virtually nothing. Just trees.

I got an endoscopy and colonoscopy last week, and they are saying everything is perfect. Blood work, biopsies, all of it. No problems.

Now here is my problem. I cannot eat much of anything without getting sick, so I went ahead and tried gluten free cereal and pasta. No problems. I ate Cheerios yesterday, and had terrible stomach cramps and gas within 5 minutes. Had a cheese danish the day before and was nauseated all day. I have also been getting headaches and migranes almost every day to some degree. Sometimes after eating something with gluten.

The GI insisits that it cannot be gluten. It's IBS. Is it possible to have negative testing and still have celiacs or a gluten issue?

your cherios may have  malt in them,  which is from barley and has gluten.  A small amount may be all it takes. watch for maltonese or something like that also.

Konzelwoman Newbie
Konzelwoman
Posted
  • Author

Have you had an IGA/TTG blood test? This is the test for Celiac. When they looked inside me they said all was well until the biopsy results came back and then it was clearly Celiac. The results of this blood test can give an indicator if you are headed in the direction of Celiac. I believe some result numbers are posted on this site and what they mean. Doctors don't give this test enough, you will need to request it by name.

    There are other conditions that make gluten hard to process. I don't know much about those but I do know they exist. Good luck. I have found if something makes me sick and I can figure out what it is I stop it. The problem is it is very difficult to figure out what is causing the problem. I'm still at it after nine years.

No, I have not. I am going to try to avoid gluten for a while or at least reduce it and see if that helps. If it seems to, then I'll go for the blood work at my primary physician. I got an ultrasound today to check my gallbladder per my GI's request.

kareng Grand Master
kareng
Posted

No, I have not. I am going to try to avoid gluten for a while or at least reduce it and see if that helps. If it seems to, then I'll go for the blood work at my primary physician. I got an ultrasound today to check my gallbladder per my GI's request.

 

 

Just a reminder that you must be eating gluten to get an accurate blood test.  Some people find it very hard to have to go back to eating gluten for a few months after being gluten-free.

BelleVie Enthusiast
BelleVie
Posted

I second kareng. I foolishly cut gluten before getting tested, and now I'm looking at doing a gluten challenge, which I know will basically make me useless for four-ish weeks. I'm not sure if my body will be able to handle it. Get tested first. Either way, you know gluten makes you sick. If your blood tests come back positive, there's your answer. If they come back negative, at least you'll know that it's not celiac, but I imagine you'll still likely want to eat gluten free. In my opinion, it's better to have a definitive answer, and considering your family history, your health really does depend on it. Untreated celiac can lead to lots of complications over time. 

Konzelwoman Newbie
Konzelwoman
Posted
  • Author

I had reduced my gluten intake before getting into the GI. I mentioned this to him and he said it would not affect the blood testing.

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kareng Grand Master
kareng
Posted

I had reduced my gluten intake before getting into the GI. I mentioned this to him and he said it would not affect the blood testing.

 

 

That's normal to believe your doctor over us.  Unfortunately, with Celiac disease, very few doctors have had any education about it.  I would suggest you read info on reputable medical sites like:

 

Open Original Shared Link

 

 

Open Original Shared Link

Konzelwoman Newbie
Konzelwoman
Posted
  • Author

I was not doubting any of you. I was simply saying what he did. My parents are paying the medical bills and they think it's conclusive enough. They say to just change my diet and if it helps, then who cares what the doctor thinks? I want to have the test run but can't afford to be out of commission for long. How long would I have to reintroduce gluten for?

w8in4dave Community Regular
w8in4dave
Posted

I know how you feel!! If you have not totally cut gluten out ,your test may be positive. I was figuring mine out before I went to the Doc. Was off Gluten for 3 or 4 days then went back on it. It is hard once you know it makes you feel so bad. But if you want to truly find out then I'd go one gluten and see what unfolds. There are some that don't need the answer from the dr. And just go gluten free. It is your choice! Good luck to you!! Hope you find the answers to all your suffering!!

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

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