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Hi everyone,

my biopsy came back today and it came back negative. i've been gluten-free for a month now. not to sure what to do. my headaches have been gone since going gluten-free. they came back last week. so i thought i was glutened. could this be????

my parents want me to take the bllod test, here in Canada it's $125 and to me that's expensive. but don't i have to be on gluten for it to come back positive?

not to sure what to do your advise would be appricated.

Thanks

Mia

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Were you still on gluten at the time of your biopsy? (Not sure how long it takes to get results back in Canada.)

It is possible to have both negative blood work and negative biopsy and still have gluten intolerance--in fact for every person who tests positive for celiac, it is estimated that there are two or three who are gluten intolerant but not celiac, so gluten intolerance is actually more prevalent than celiac. The gluten intolerant have to avoid gluten just as a celiac does.

Yes, if you wanted the blood test you need to have been eating gluten for at least two months, just as for a biopsy, in order to get a valid result. Some would say three months.

Your other alternative is to order the Enterolab stool testing which cannot diagnose celiac disease but can test your IGA levels and, if you order it, can tell you if you carry one of the genes that predispose toward celiac disease. It can also check for other food intolerances such as soy and dairy. This test can detect the gluten antibodies for many months after the elimination of gluten.

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no i was gluten-free when the biopsy was done. went gluten-free right when it was done and i could eat again.

i told my parents that they both could come back negative and i still have Gluten intolersance. they dont understand. i have been feeling better since going gluten-free, but still very tired and headaches come and go where before they never left. i've read here that it can be withdrawal????

so lost and confused.

MIA =)

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no i was gluten-free when the biopsy was done. went gluten-free right when it was done and i could eat again.

i told my parents that they both could come back negative and i still have Gluten intolersance. they dont understand. i have been feeling better since going gluten-free, but still very tired and headaches come and go where before they never left. i've read here that it can be withdrawal????

so lost and confused.

MIA =)

MSG can also cause headaches. If you avoid that and headaches go away that will tell you something as well. Glad you're better by half by going gluten-free. Keep up the good work! I really don't care about test results as long as I feel better.

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Easily enough, if you have records of any previous major blood work done on you then you can stick on your gluten free diet for now. Once most of your symptoms have gotten better then go in for extensive blood work again from your doctor related to concerns about your liver or w/e, not sure how things are covered up in maple land. My blood work taken after I had started the gluten free diet turned up negative for tissue transglutaminase antibodies; but all the rest of my blood work showed a major difference in a number of different categories relative to what one might see after "curing" a major malfunction when compared to my previous blood work done a few years ago.

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Which blood test do you mean? (the one you said costs $125) If you mean tTG and IgA, both of which you need to be eating gluten for then this should be free in Canada, you just need a lab requisition from your doctor, I would imagine the HLA testing would be the same situation as well. Good luck!

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You really have to consider how you FEEL when you are gluten free. My mom is celiac and has the severest reactions possible if she gets any. I was never like that, yet all my life I had continual digestive issues. Since I didn't react like she did, I figured I didn't have the problem, although I always thought I had issues with dairy (and I thought that was the only problem). I always subconsciously minimized gluten, but my reactions really were getting bad 4 years ago (age 56, no less). A blood test showed nothing, so therefore no way to request or need a biopsy. I did the Enterolab panel, learned I have my mom's celiac gene plus a gluten sensitive gene from my dad, and the other tests showed inflammatory reactions. So I've never had a solid celiac diagnosis, but I've finally learned that whether I do or do not have celiac disease (or active celiac disease), I've seen evidence through my diet that gluten makes me feel bad in a variety of ways (headaches, digestive upsets, and more lately, terrible joint pain in my hands). I feel GREAT when I don't eat it.

So there you have it. You need to get your head around the fact that for many, many people, gluten is quite simply a POISON. You wouldn't eat other poisons, so why eat this one. My personal opinion is that gluten probably bothers most everyone, celiac or not. Unprocessed wheat is a poison, you would never eat it in that form. Remember the saying "Just because you CAN eat it doesn't mean you SHOULD." Look at the massive issues in our society with Diabetes 2, heartburn etc., look at all the drugs people take to deal with digestive upsets. I had horrible heartburn, too, but haven't had it once since going gluten free. Gluten is just a delicious tasting poison, and we should all probably consider ourselves lucky to understand how it affects us. So many people don't get it, and who knows what physical repercussions that will have down the road as a result of eating it so much, causing inflammation endlessly throughout their body. Results include cancer, arthritis, the triggering of other auto-immune diseases.

It's a process (or has been for me), but I've finally realized I must never eat it again, and I've learned to not view that as a difficult thing, only something necessary for my good health.

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i've been gluten-free for a month and a week, i don't have a problem with it at all. when i crave pizza i make it gluten-free from scratch. i've learned to like it at makes me feel better.

but my parents want a for sure dianosis. and i just tell them if i'm feeling better for that most part not eating it then why do i have to have a positive result????

but with the symptoms im having now are coming back and i KNOW that i haven't eaten any gluten.

the headaches are killer and i'm soooooo tired i just woke up from having a 15 hour sleep!!!!! and now my back hurts.

i've missed soooo much work only worked like 10 days in the last 3 and a half months.

i live with my in-laws and my mother-in-law is thinking its all in my head.

(i'm newly married 7 months) and either my in-laws or husband have ever seen me this way.

i normally have so much energy and am upbet but right now i snap at anyone who bugs me and don't want to do much. which before i wouldn't think twice about it i would just go do it.

i'm tired! and don't know what else to do.

sorry now i'm just venting!

did i meantion that my MRI came back normal? my daddy says that's a good thing. I'm lost and i just want to sleep all the time and be alone. getting depressed and that is scaring me i've never been depressed!!!!

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Which blood test do you mean? (the one you said costs $125) If you mean tTG and IgA, both of which you need to be eating gluten for then this should be free in Canada, you just need a lab requisition from your doctor, I would imagine the HLA testing would be the same situation as well. Good luck!

there is a commercial blood test (biocard) only available in Canada that tests for celiac. I believe it's more or less the same as the TTG IGA that the doctor would request and I guess one would use it if they can't get their doctor to order the tests for celiac??? maybe that's the one the parents are thinking about?

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I just had the test done in Ontario.. it is only covered if it is done in a hospital setting... Otherwise the outpatient lab costs 105 where I had it done.. its been a week and I still haven't heard back

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    He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
    Knitty Kitty, Here is the link to the Old research. I think you will find it interesting. ..I know you used Niacin to treat your itching with your DH. https://core.ac.uk/download/pdf/82674034.pdf see Case IV but read them all when you get the chance. they review 12 case studies. I hope this is helpful but it is not medical advise. Posterboy,
Alaskaguy, Like Knitty Kitty I am one of the researchers on this forum.  she has provide you good links. So I wanted to chime in and share some research I found recently that might help you....entitled "Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide." This is recent research too which can be hard to come by to find something directly that might help you. https://www.ncbi.nlm.nih.gov/pubmed/30390734 Also see this thread about
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