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  • Testing for celiac disease

    I'm curious, has anyone here ever gotten tested for celiac disease after already cutting gluten out of your diet?

    From what I understand, if I wanted to get the test done, I'd have to eat a fair amount of wheat gluten prior to the test for some amount of a time to make sure that the antibodies are present. That does not sound like a fun process to me, as I know I'd end up with joint pain, bloat, stomachaches, acne, and constipation. I'm just kind of curious after having a small hunk of french bread the other day and soon after getting stomach pains (it reminded me that I never got the test done).

    Does having the diagnosis benefit your life in any way? I'm guessing it'd be mostly social benefits, as most people respect "disease" over "intolerance" (and lots of people think gluten intolerance is fake).
    Depression Lies

  • #2
    Hi namelesswonder,
    1. Do not care about what others say- your body is giving you response to right or wrong.
    ergo 2. Save the money for the test.

    Have you read about the ATI in wheat/grains? I find it pretty interesting...Gluten does not necessarilly have to be the cause for your reaction! I could only find good german links, but maybe you can ggogle and find some good english ones.

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    • #3
      Originally posted by namelesswonder View Post
      I'm curious, has anyone here ever gotten tested for celiac disease after already cutting gluten out of your diet?

      From what I understand, if I wanted to get the test done, I'd have to eat a fair amount of wheat gluten prior to the test for some amount of a time to make sure that the antibodies are present. That does not sound like a fun process to me, as I know I'd end up with joint pain, bloat, stomachaches, acne, and constipation. I'm just kind of curious after having a small hunk of french bread the other day and soon after getting stomach pains (it reminded me that I never got the test done).

      Does having the diagnosis benefit your life in any way? I'm guessing it'd be mostly social benefits, as most people respect "disease" over "intolerance" (and lots of people think gluten intolerance is fake).
      I work with a gentleman who is positive for celiac disease. You will test positive for transglutaminase antibodies after you have eaten something containing wheat or while on a normal diet that contains wheat. In his case he didn't know what was wrong and was eating whole grain cereals all the while. I would assume the diagnostic process is the same for everyone. I also heard once that an allergist can expose you to gluten in the form of an allergy test stick and check the reaction later. Note that I just "heard" that info second-hand and cannot verify it.

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      • #4
        I've had skin-based allergy test done, no responses to food. But wheat allergy is not the same thing as celiac disease or gluten intolerance.

        I mean I'm pretty much planning on avoiding grains for as long as I appear to have negative responses to consuming them. I'm just curious if there is remotely any point to getting an "official" diagnosis. Most of my symptoms are in line with celiac disease. I wonder if my leanness as a kid was part of it (didn't have trouble growing though).
        Depression Lies

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        • #5
          IMO there would be no point to getting an official diagnosis. If you avoid grains and you feel better as a result then keep avoiding grains. I feel much better when I avoid grains and feel quite nauseated for awhile after I consume them. For myself that's all I need to know. Do you think you would benefit more emotionally from an official diagnosis?

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          • #6
            There is just ...something... about an official piece of paper that supports your unofficial stance, isn't there? Heheheh Spend the money if it's burning a hole in your pocket. Otherwise, don't!

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            • #7
              I looked into the testing briefly a few years ago, but was told the same thing, I would need 3 weeks of exposure. No thank you. Recently, I have had a very unexplained bout of crazy odd eczema (not my usual eczema) that was completely unresponsive to dietary tweaking or my own adjustments(soap, laundry detergent). I have had severe allergies/eczema since I was a baby. so I know my way around a "flare". Anyway, I ended up at my primary physician just to rule out something else, because the rash was spreading, and not responding to anything, and wasn't looking "typical". It has been spreading for almost 3 months, involving 3/4 of my body. I got sent for allergy testing yesterday.
              Now I am 42 and come from a strong family history of allergies, so I knew this wasn't going to go well..I tested positive for most environmental allergens, fish is a life threatening allergy, but there was also oats, corn and rice. Who is allergic to rice?! But wheat was negative on the skin test, as was soy. I avoid both.
              I think about going for the celiac testing from time to time, but right now I am just avoiding triggers, and trying to heal my skin. Good luck!
              Last edited by Juliemama; 08-13-2015, 04:13 PM. Reason: grammar

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              • #8
                Yeah I guess it's kind of an emotional thing. If I did get a positive diagnosis, I could use that as my socially acceptable reason for the way that I eat. I would feel more secure. But if I did the testing and didn't get the "disease" label, everything would still be the same. I guess I just have to work on my comfort level regarding my differences from the rest of my family/friends.
                Depression Lies

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                • #9
                  Positive diagnosis might be an out for military service if the draft ever came back. Beyond that I can't see the point if you know that avoiding those foods works for you. I skipped the test for my son and he mostly avoids gluten, having the test wouldn't have done much for him.

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                  • #10
                    I'd vote not to do the test. If you already know from n=1 that wheat/gluten is a problem, you will not learn anything of substance from the testing.

                    My daughter has celiac, and was tested some 15 years ago at around age 15. At that time, we were totally clueless, and did not even realize she was having any issues. Our MD tested her for anemia, the results were terrible, and he followed up with several other diagnostic tests including the celiac test. In our case, getting the test done was instrumental in our learning about gluten and diet issues and subsequently rectifying her health issues, she gained some 20 pounds, almost 2 inches in height, and much more robust in physical capability in the year following her conversion to gluten free living.
                    Finally have given up on MDA Forum.
                    My friends, I'll see ya at primalforums.com where I'm user #4, and we do have a moderator.

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                    • #11
                      By testing do you mean the blood test? Or a endoscopy? The blood test is prone to false negatives. If it says you are celiac, you are. If it says you aren't, you may or may not be. Waste of effort. Endoscopy and biopsy or you are just putting yourself at risk of getting a misleading result which leads you to behave in a way which harms your long term health.

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                      • #12
                        Originally posted by namelesswonder View Post
                        Yeah I guess it's kind of an emotional thing. If I did get a positive diagnosis, I could use that as my socially acceptable reason for the way that I eat. I would feel more secure. But if I did the testing and didn't get the "disease" label, everything would still be the same. I guess I just have to work on my comfort level regarding my differences from the rest of my family/friends.
                        Based on what you say above, I'd spend money on assertiveness training so that you can take care of yourself as you wish without having to get outside validation. IMHO, your money will be better spent.

                        Eat what makes YOU feel good.

                        "It's easier to put on slippers than to carpet the whole world." --Al Franken

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                        • #13
                          I know where you are coming from, and feel the same way. I wish I had had the test before cutting it out totally, not just for concern over what others think, but because when in a restaurant, when you say gluten free, you are asked if you are celiac. when you say no, or you don't know, but have a real problem with it, they don't class you as celiac and could end up with a lot of discomfort. If you know you actually have celiac you would be much more careful for no contamination yourself too.

                          I have been tempted to say I have it these days, as nothing else is taken seriously.
                          Started Primal June 2012 at 148.5lbs, and 5' 1", reached goal weight in 5 months.
                          Lowest weight 93lbs - too thin. Now stable at around 100lbs much better weight for me at my age.
                          Primal, minus eggs, dairy and a myriad of other allergens.

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                          • #14
                            Originally posted by Silvergirl View Post
                            ....... when in a restaurant, when you say gluten free, you are asked if you are celiac. when you say no, or you don't know, but have a real problem with it, they don't class you as celiac and could end up with a lot of discomfort. If you know you actually have celiac you would be much more careful for no contamination yourself too.

                            I have been tempted to say I have it these days, as nothing else is taken seriously.
                            I don't like to lie. I usually say. No, I have another immune condition - my hands feet and other areas swell up when I have gluten. It helps that the other half is usually there to defend me. Sometimes I vary it and tell them I have another digestive condition microscopic colitis (which I do) and that they really don't want to know the details of what happens if I eat something I shouldn't, but basically it involves too much bathroom time. Say it like you are about to go into details, and they will usually leave you as soon as possible and I am pretty sure they do the right thing.

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