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  • Celiac Testing

    My daughter will be getting tested for celiac disease (antibodies and genetic). She has not been eating anything with gluten and her doctor advised her to eat gluten for a few weeks before the testing. Due to her stomach pains and sleepless nights after eating the smallest bit of gluten, she is really hesitant to eat any. She starts college classes on the 26th and wants to be feeling well. Would eating gluten for the entire day before testing be okay?

    I realize that her symptoms should be enough for her but she is getting a lot of flack from her friends and really wants a diagnosis. At this point, we won't be doing the biopsy. I'm thinking, if she comes up with the celiac gene, that might be enough for her. We have celiac in the family so she might just have the gene.

    Thanks!

  • #2
    I have a gluten sensitivity/intolerance that didn't show up with testing. Unfortunately I found it through trial and error with cramps, bloating, weight gain, and facial hair loss (alopecia). Some times the tests don't give you the information you want.

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    • #3
      If she does not eat gluten beforehand and DOES have celiac, it may not show on the antibody test. For me, personally, a day or not, it wouldn't be worth the discomfort. I do not know if it would show on the test.

      A biopsy of the intestines would be more accurate, but even then, one can have a sensitivity that does not show intestinal damage.

      I'm curious why you are looking for a diagnosis, since it seems like you already know she has problems with gluten.
      Depression Lies

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      • #4
        It would be pointless to have the biopsy when she hasn't been eating normal portions of gluten continuously for months. And even then the test may come back negative. It could be a false negative, or she could have non-celiac gluten intolerance, which has the same symptoms. Either way she needs to go off gluten to stay healthy.

        Why does she need to get a diagnosis to present to her friends to get their approval before stopping eating something that is hurting her? It's none of their business, and if she takes that attitude any grief she's been getting will stop.

        "It makes me sick when I eat that" is all she needs to say. If they try to use their ignorant arguments at that point, all she needs to do is ask why they want her to be sick. End of story.

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        • #5
          I agree about not needing a diagnosis but she is very sensitive to what her friends say (long story - at the end of her senior year, one of her "friends" turned on her for no reason that we could see at the time and took three other "friends" with her. It was really a bullying situation. She feels she was left with only a few friends, one of whom gives her a hard time about her diet. She is afraid to confront her and lose another friend.)

          We'll do the blood work after a day of eating gluten and see what it shows. Otherwise, she can tell people she is intolerant to gluten.

          Thanks for the responses!

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          • #6
            Agree with Namelesswonder, I wouldn't bother with the test. It seems to me that you have enough info with family history and "hands on" eating to know she has a problem with gluten.

            With some luck, your daughter may do like mine did. We found out she had celiac around age 16. She was very, very skinny, had not gained any height or weight in a long time, and had very low energy. In the year or so after diagnosis, she gained about 2 inches in height, and over 25 pounds of well distributed weight. Now 28, she's into cycling, triathlons, etc and doing very well, although her gluten sensitivity seems to have become even more severe.
            The Buck stops here. I am responsible for my past and my future. So for today: I choose to be happy. I will seek wisdom. I will be a servant to others. I will greet this day with a forgiving spirit.

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            • #7
              Originally posted by Willow16 View Post
              I agree about not needing a diagnosis but she is very sensitive to what her friends say (long story - at the end of her senior year, one of her "friends" turned on her for no reason that we could see at the time and took three other "friends" with her. It was really a bullying situation. She feels she was left with only a few friends, one of whom gives her a hard time about her diet. She is afraid to confront her and lose another friend.)
              I understand she needs friends, but a friend who is working hard to make her physically sick and hurt her emotionally is no friend at all. She is going to college. There will be lots of new people she can meet there who are willing to accept her as she is, not actively trying to hurt her.

              We'll do the blood work after a day of eating gluten and see what it shows. Otherwise, she can tell people she is intolerant to gluten.
              Even doing the blood work after not eating gluten for an extended period of time may result in no antibodies detected.

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              • #8
                I would not bother with the test because a false negative would be very likely and would probably be quite counterproductive in the circumstances.

                I would think a more practical solution would be to sty off gluten, come up with a simple answer for anyone enquiring as to why (and a few techniques to deal with aggressive questioning) and rather than pursuing the celiac diagnosis, maybe opt for some CBT to help her to recognise bullying for what it is. CBT can be really useful for these kind of situations. Recognising that she does not need to justify herself to anyone, that bitching and bullying are the person responsible's problem and not her problem, that friends who bully are not friends, that there are ways of walking away from manipulative and bullying people and retaining your own sense of self and that you will find better friendships if you can build up your resistance to the bitches and bullies and stay strong in your own convictions are imho more useful strategies for dealing with people like this. She should not be trying to give nasty people what they demand - she should be recognising that this is none of their business.

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                • #9
                  Even if she hadn't stopped eating, the false negative on the blood tests are as high as 25% for the best tests. IMHO this is just making a bad situation (her difficulty dealing with her social issues) worse- feeling bad for school, learning to act in a self-damaging over reactive way in reacting to social difficulties instead of learning centering and strength, and the possibility of a negative test... No.
                  In God we trust; all others must bring data. W. Edwards Deming
                  Blogging at http://loafingcactus.com

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                  • #10
                    Originally posted by loafingcactus View Post
                    IMHO this is just making a bad situation (her difficulty dealing with her social issues) worse- feeling bad for school, learning to act in a self-damaging over reactive way in reacting to social difficulties instead of learning centering and strength, and the possibility of a negative test... No.
                    I agree, I was bullied, mainly psychologically, at school myself as a girl and the worst thing to do is play by the bullies' rules - this girl who might be quelled with "proof" is an example of that.

                    It would be a bad thing if your daughter learns that jumping through hoops to keep other people sweet is the way to handle criticism or ostracism, or that it's legit to do something that might physically really harm her, in order to be approved of.

                    I spent years of my teenage life in a state of utter despair due to bullying, so I'm not just parroting empty principle here, I know the pain's very real, and I can understand it must be a nightmare for you to see her struggle like this because she's your daughter and you want to do everything you can to protect her, but this isn't the way to deal with it.

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                    • #11
                      Eating one day before the test won't work. It is a test for antibodies and it takes time after eating wheat for antibody levels to get high enough to measure.

                      I would either do the test correctly or not at all. A false negative will be worse than having no data.
                      Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

                      http://www.krispin.com/lectin.html

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                      • #12
                        What is a gluten challenge? | University of Chicago Celiac Disease Center

                        It takes several weeks of eating gluten every day to have accurate test results. 12 weeks is recommended.
                        My blog: Pretty Good Paleo
                        On Twitter: @NEKLocalvore

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                        • #13
                          Originally posted by jammies View Post
                          Eating one day before the test won't work. It is a test for antibodies and it takes time after eating wheat for antibody levels to get high enough to measure.

                          I would either do the test correctly or not at all. A false negative will be worse than having no data.
                          Yep - absolutely no point to the test unless she spends several months eating fairly large amounts of gluten.

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                          • #14
                            Like most have already said, if your daughter has been off Gluten for sometime, and she is a lot happier/healthier. I wouldn't go through the discomfort of eating Gluten for the test. As she would need to eat Gluten for a period of time to have a sufficient level of anti-bodies show up.

                            For anyone, who hasn't stopped eating Gluten, then the testing can be helpful. But to be honest if you feel better without Gluten, No Bloating etc... Then you don't need a test.

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                            • #15
                              Originally posted by Willow16 View Post
                              My daughter will be getting tested for celiac disease (antibodies and genetic). She has not been eating anything with gluten and her doctor advised her to eat gluten for a few weeks before the testing. Due to her stomach pains and sleepless nights after eating the smallest bit of gluten, she is really hesitant to eat any. She starts college classes on the 26th and wants to be feeling well. Would eating gluten for the entire day before testing be okay?

                              I realize that her symptoms should be enough for her but she is getting a lot of flack from her friends and really wants a diagnosis. At this point, we won't be doing the biopsy. I'm thinking, if she comes up with the celiac gene, that might be enough for her. We have celiac in the family so she might just have the gene.

                              Thanks!
                              To get accurate test results on the blood test, she would have to be eating a significant amount of gluten (like a couple pieces of bread) for 8-12 weeks before having the test. The genetic test is still accurate, but it doesn't diagnose celiac - just tells you whether or not you have the potential to have the disease. She can get other tests run that might point to celiac - like if she has vitamin deficiencies, or low bone density, those are both indications.

                              What's your daughter's situation at college? Will she live at home or in her own apartment? If she has to live on campus and get a meal plan or something, than it might be worth going through the testing, because her college would then be required to provide her with gluten free food. If she's in a position to do her own cooking, than you've got a bit more flexibility.

                              Personally, I had positive blood tests for celiac, but I never got the endoscopy to confirm it, because I was given the advice to try the gluten free diet right away, and only later did I find out that this would make the endoscopy negative. My husband and I were planning our wedding at the time, and I didn't feel like I could deal with a gluten challenge. Plus, I felt so much better that I just didn't see the point of eating gluten again for months to confirm that it was bad for me - and given my other symptoms and a strong family history of the disease, my doctor agreed with me that I had it anyway.

                              If you or your daughter wants more advice, you should check out the forum at http://www.celiac.com/gluten-free/forum/ - there's a lot of people over there who've gone through the test/don't test question. The Gluten Dude - at Gluten Dude: A gluten free blog and home to an amazing celiac community
                              also has a lot of really good advice for celiacs.

                              Good luck!

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