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Is There A Need For Further Testing?


Nic

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Nic Collaborator

Hi, my father and my son both have Celiac. I have had my youngest son tested and so far is testing negative. I had not tested myself because I had no syptoms but over the past year I have noticed more bloating, stomach pain, and fatigue after eating meals with gluten (primarily lunch because that is the meal I eat outside of the house, I cook gluten free for dinner). So I went yesterday for the blood work to see if I have the antibodies. If I do I don't see any real reason to go any farther (biopsy) because with a father and a son with Celiac it kind to lends to reason that if I have the gluten antibodies I most likely have it to. I kind of had it in mind if my youngest son ever tests positive for the antibodies I would do the same for him. I feel like what is the point. Does anyone disagree with this? Could I end up missing something this way?

Nicole


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tarnalberry Community Regular

A lot of us don't feel that the biopsy is necessary for *anyone*. If you have antibodies in your blood, you are having an immune response to gluten, period, and should avoid it.

Debbie65 Apprentice

I agree that if the antibodies are present then you don´t need the biopsy especially since you also have symptoms when you eat glutenous foods. Also, you can have a false negative biopsy like I and others have which totally confuses the issue forther.

You should try to go completely gluten-free though to avoid discomfort and damage to your body.

par18 Explorer
Hi, my father and my son both have Celiac. I have had my youngest son tested and so far is testing negative. I had not tested myself because I had no syptoms but over the past year I have noticed more bloating, stomach pain, and fatigue after eating meals with gluten (primarily lunch because that is the meal I eat outside of the house, I cook gluten free for dinner). So I went yesterday for the blood work to see if I have the antibodies. If I do I don't see any real reason to go any farther (biopsy) because with a father and a son with Celiac it kind to lends to reason that if I have the gluten antibodies I most likely have it to. I kind of had it in mind if my youngest son ever tests positive for the antibodies I would do the same for him. I feel like what is the point. Does anyone disagree with this? Could I end up missing something this way?

Nicole

Hi Nicole,

I think you are doing everything ok. I had a positive biopsy only. To me it does not matter if you use a blood test or biopsy because either way you still have to respond to the diet. I did not have a blood test until 15 months into the diet. The only resason I got it was to make sure I was not getting any gluten in my diet. I must not be getting any as all anti-body levels are negetive. I did get the gene test and was positive for one of the genes. My question to you is how often will you be testing your youngest? Did you or any members of you family test positive for the gene. If your youngest does not have the gene it is unlikely he will ever develop Celiac.

Tom

Nic Collaborator
Hi Nicole,

I think you are doing everything ok. I had a positive biopsy only. To me it does not matter if you use a blood test or biopsy because either way you still have to respond to the diet. I did not have a blood test until 15 months into the diet. The only resason I got it was to make sure I was not getting any gluten in my diet. I must not be getting any as all anti-body levels are negetive. I did get the gene test and was positive for one of the genes. My question to you is how often will you be testing your youngest? Did you or any members of you family test positive for the gene. If your youngest does not have the gene it is unlikely he will ever develop Celiac.

Tom

Hi Tom,

My son who is positive for Celiac was tested for the Gene and yes he has it. My youngest son was only tested for the antibodies and will eventually be tested for the gene, I just haven't done it yet. He has been through a lot of testing already for medical problems unrelated to the Celiac and I am trying to spread out the blood work, he is only 4. I am not sure why they didn't test for the gene but they just ran a Celiac panel on him. So far I only had him tested once since we were checking him for diabetes and hypothyroid as well. All negative thank goodness. Just to let you know, I recentlly discovered that my son (the Celiac) had been ingesting gluten once every two weeks for the past year because the chinese take out place by us told me they were not putting soy sauce in the rice and they were (miss communication). He was still having symptoms that no one could figure out why. The doctor ran blood work to see if antibodies were present and it came back negative. So according to the bloodwork, he was not getting gluten, but he was so I am not sure about these tests.

Nicole

par18 Explorer
Hi Tom,

My son who is positive for Celiac was tested for the Gene and yes he has it. My youngest son was only tested for the antibodies and will eventually be tested for the gene, I just haven't done it yet. He has been through a lot of testing already for medical problems unrelated to the Celiac and I am trying to spread out the blood work, he is only 4. I am not sure why they didn't test for the gene but they just ran a Celiac panel on him. So far I only had him tested once since we were checking him for diabetes and hypothyroid as well. All negative thank goodness. Just to let you know, I recentlly discovered that my son (the Celiac) had been ingesting gluten once every two weeks for the past year because the chinese take out place by us told me they were not putting soy sauce in the rice and they were (miss communication). He was still having symptoms that no one could figure out why. The doctor ran blood work to see if antibodies were present and it came back negative. So according to the bloodwork, he was not getting gluten, but he was so I am not sure about these tests.

Nicole

Nicole,

Interesting about the Chinese. I don't know how much one would have to ingest to get raised levels of the anti-bodies. I had negetive levels and had no symptoms so I was not surprised. There are a couple of tests (tTG IgA and tTG igG) which have a level which is defined as a "weak positive". I wonder if this is the beginning of a problem. I think the testing labs probably have their own way of listing and determining their results. To me the best result is how a person feels. I know I feel perfectly normal with none of my previous symptoms. I will probably get blood tests every year or two for a while. Good luck.

Tom

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    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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