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Getting Tested


gfpagan

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gfpagan Apprentice

If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?


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maile Newbie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

gfpagan Apprentice

Great reply! that makes me feel more confident in my decision. I hate the idea of having to go back on gluten to get a test that may or may not tell me something that I'm going to do anyway.

Thank you!

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

Tallforagirl Rookie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

You may not need to know, but if you're not going to get tested I'd err on side of caution and get a full blood count and bone density test. Vitamin deficiencies and osteoperosis are very common amongst undiagnosed celiacs, but both treatable if caught early.

rinne Apprentice

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

gfpagan Apprentice

I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

rinne Apprentice
I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:


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gfpagan Apprentice

Thank you (-: I feel good knowing I discovered it myself and didn't have the frustration (at least too much) of doctors trying to tell me otherwise.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

Leper Messiah Apprentice

I'm in the same boat although I'm weighing up tackling the stoopid gluten challenge just to get a prescription for gluten free food (from the NHS in the UK) - it is literally costing me a fortune. Here's hoping a better way to test and confirm gluten intolerance is not too far away.

one more mile Contributor

There should be a better way to be tested. I have not been tested and can not imagine Eating what I know is poison just to find out officially that it is. In the uk will they accept the DNA test?

ang1e0251 Contributor

I think it is barbaric to make you eat gluten for weeks for a test. Come on, do you know any GI dr that would rub poison ivy all over his body every day for 3 months just so it could do a huge amount of damage to skin to dx it?

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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