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Confused And Dont Know What To Do

Liz790

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Liz790 Newbie
Liz790
Posted

So, I have had blood work for celiac disease and everything was negative. DNA test was negative then I had to two endoscopys and the first one came out positive for celiacs and the second was negative...... so what should i do? I don't think insurance will cover another endoscopy but I still get pain and I am starting to think my doctors think i'm nuts. And I definately don't want to go on a diet until I am 100% sure that thats what it is. :(

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tarnalberry Community Regular
tarnalberry
Posted

You've done the blood tests, and the biopsy. But you haven't done the dietary test. Removing gluten for your diet (completely) for a while (at least a month) and then challenging by eating gluten again IS a valid test, and used to be the gold standard.

Liz790 Newbie
Liz790
Posted
  • Author

You've done the blood tests, and the biopsy. But you haven't done the dietary test. Removing gluten for your diet (completely) for a while (at least a month) and then challenging by eating gluten again IS a valid test, and used to be the gold standard.

Thank you,

I plan on going on the diet next month.....

GIunknown Rookie
GIunknown
Posted

I had blood work, biopsy, DNA testing and all came back negative, but the diet is about the only thing that makes me feel half way good. I can eat gluten and I pay the price for it. The doctors told me its a hard life to live on this diet but its alot easier to deal with this than all the pain and days of throwing up and rashes.

Liz790 Newbie
Liz790
Posted
  • Author

I had blood work, biopsy, DNA testing and all came back negative, but the diet is about the only thing that makes me feel half way good. I can eat gluten and I pay the price for it. The doctors told me its a hard life to live on this diet but its alot easier to deal with this than all the pain and days of throwing up and rashes.

see, thats what makes it hard for me to want to go on the diet. I've never had any real symptoms of celiac disease.. The only thing I have is a pain that I get every once in awhile under my right rib and it is always in the same spot. I don;t know what causes it because I may get while i'm eating, after or even if i haven't had anything at all to eat. It's just weird.

jackay Enthusiast
jackay
Posted

So, I have had blood work for celiac disease and everything was negative. DNA test was negative then I had to two endoscopys and the first one came out positive for celiacs and the second was negative...... so what should i do? I don't think insurance will cover another endoscopy but I still get pain and I am starting to think my doctors think i'm nuts. And I definately don't want to go on a diet until I am 100% sure that thats what it is. :(

Isn't the one positive endoscopy enough to tell you it is Celiac? If you do have Celiac, you will avoid a lot of future problems by going on the diet now. Give it a try for a month. A month out of your life really isn't that long.

Possibly you have gluten intolerance that isn't Celiac but is still a very serious health problem. I had problems for years but gluten intolerance wasn't even considered until I started in with diarrhea. If I had gone gluten free years ago, I would have avoided a lot of physical and mental pain.

I still do not know if I have Celiac or just gluten intolerance. All I know is that I am getting my life back now that I have given up gluten.

sandsurfgirl Collaborator
sandsurfgirl
Posted

If you had a positive endoscopy I'm confused as to why they did a second one. They can come back negative if the doctor doesn't get enough samples or if they get only healthy tissue. It's not uncommon to get false negatives on bloodwork and then get a positive diagnosis from the biopsy.

A positive biopsy means celiac doesn't it?

Lots of docs don't know what they are doing with this disease and I'm wondering if you need new doctors. I think it's time for you to do the diet.

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nora-n Rookie
nora-n
Posted

I had negative tests and gene test, yet I am sure it is celiac or gluten sensitivity.

When glutened, I have Dh rash , and gluten ataxia.

(gluten ataxia is connected to DQ1 and not neccessarily the ordinary celaic genes Dq2 and 8)

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      Iron loss and potential celiac.

      By trents · Posted

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
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      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Does my iron loss sound like celiac to you?
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      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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      Iron loss and potential celiac.

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