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Negative Test - Need Some Advice


beanbird

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beanbird Rookie

Hi Everyone,

I'd be really grateful if anyone could give me some advice on what to do.

I went gluten-free for 2 months (I felt AMAZING!), then started a gluten challenge, I managed to get 3.5 weeks in before I decided I couldn't face anymore, and got tested. Although my digestive symptoms weren't quite as bad as they had been before I went gluten-free, I had a whole host of other symptoms I couldn't cope with, (continuous stabbing pains, itchy skin, achy joints, and feeling depressed).

I got my results back yesterday, negative, and I am gutted. Although I know it was unlikely I would get a positive, I had hoped some how it would be. I knew I had to keep on eating gluten until I got my results, I have a docs apt in 3 days now, and I know they would retest me when I have done the full 6 weeks (I'm not at 4.5 weeks eating gluten), but I'm not sure if it is worth it. I feel like just going gluten-free, after all getting a positive result sounds like hardwork!

So what would everyone do? Just go gluten-free now? or wait another 1.5 weeks, get another test done?

I was looking at the EnteroLab website, and wondering if I should find a UK equivalent (I am in England) and try that route of testing.

I am just so drained from all this gluten, I am so depressed and I have no fight left in me. :(

Thanks for listening.


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darlindeb25 Collaborator

Gluten intolerance is much bigger than just celiac disease. Just because you didn't test positive for celiac, does not mean you are not gluten intolerant. Scientists have, so far, only been able to create testing for celiac, they do not have a test specific to gluten intolerance yet. Did you have gene testing done? There are many genes specific to gluten intolerance.

If you want to have Enterolab testing done, then go for it...many people feel better once they have this testing done, it gives them answers that simple celiac testing doesn't give. I did not have the money to be tested 9 years ago when I went gluten free. I did have gene testing done last year, and I have double DQ1 genes, which are gluten intolerant genes.

If gluten free makes you feel amazing, then truthfully, that should be your answer.

ang1e0251 Contributor

I haven't been tested because I don't think I could take a challenge long enough for it. I was gluten-free about 6 months when I was financially able to be tested. I don't care about the test, I'm just glad I feel like a normal person again.

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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
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