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Testing After Being gluten-free For Six Months

Lgood22573

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Lgood22573 Rookie
Lgood22573
Posted

I have been gluten-free for six months. I did enterolab testing and that came back with very high antibodies (Transglutaminase IgA: 98 AND Anti-gliadin IgA: 57)10 and under is considered normal. I cut gluten out and had a literally miraculous recovery. I finally established myself with a new doctor and told him my story, and of course he said the stool testing meant "diddly squat" and he would do a blood test. Did I mention I'm on a Rx for B12, mag and D?????? My understanding is the blood will come back with normal antibodies since I have been gluten-free for so long. He said if that's the case, I don't have Celiac. He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary? I know I have a severe intolerance, not sure about the actual Celiac since I have not had a biopsy. I am sick in 10 minutes if I eat gluten, I am NEVER EVER eating gluten again. I guess it's just frustrating and I wanted some opninons. He said if the antibodies came back elevated, I really should do the biopsy, that even after six months the villi would still show damage.

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AlysounRI Contributor
AlysounRI
Posted

He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary?

Did he really say that??

What a jerk.

Yes, after being off gluten for half a year you are very likely to have a positive blood test.

Like the sadist that he is, he will probably want you to make yourself sick for 3 months.

But it sounds like you already know what to do about that.

Unpleasant lifestyle?

Really??

Ugh <_<

Rebecca Madrid Newbie
Rebecca Madrid
Posted

I'm not being very helpful I know, but I have been gluten-free for about 3 months now, and was told the same thing. Health care differs from doctor to doctor, province to province. Out at school, the doctor had me remove gluten from my diet for nearly two weeks and then take the blood tests... not exactly effective and I tested negative. I have been told the same thing, that I would have to be on a rich gluten diet for at least two weeks before having another blood test. I also refused, It hurts, its inconvenient, and the possible long-term effects are not worth the positive result. How I feel is what truly matters, so I have chosen to remain on a strict gluten free diet based simply on how much better I feel.

My opinion and advice is not to hurt yourself any longer, if your anything like me, your kicking yourself now for how long you stayed sick without knowing why.

You will always know your own body better than any medical professional in that if it feels better, do it.

Good luck <3

ravenwoodglass Mentor
ravenwoodglass
Posted

Edited for accidental double post.

ravenwoodglass Mentor
ravenwoodglass
Posted

Did he really say that??

What a jerk.

Yes, after being off gluten for half a year you are very likely to have a positive blood test.

Like the sadist that he is, he will probably want you to make yourself sick for 3 months.

But it sounds like you already know what to do about that.

Unpleasant lifestyle?

Really??

Ugh <_<

I think Alysoun meant to say a negative blood test after 6 months gluten-free. Your doctor is not very well informed about celaic. He and too many others seem so reluctant to diagnose celiac. You would need a good 3 months of gluten if you want a doctor derived diagnosis. It sounds like you may want to keep looking for a more celiac savvy doctor if you can

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I have been gluten-free for six months. I did enterolab testing and that came back with very high antibodies (Transglutaminase IgA: 98 AND Anti-gliadin IgA: 57)10 and under is considered normal. I cut gluten out and had a literally miraculous recovery. I finally established myself with a new doctor and told him my story, and of course he said the stool testing meant "diddly squat" and he would do a blood test. Did I mention I'm on a Rx for B12, mag and D?????? My understanding is the blood will come back with normal antibodies since I have been gluten-free for so long. He said if that's the case, I don't have Celiac. He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary? I know I have a severe intolerance, not sure about the actual Celiac since I have not had a biopsy. I am sick in 10 minutes if I eat gluten, I am NEVER EVER eating gluten again. I guess it's just frustrating and I wanted some opninons. He said if the antibodies came back elevated, I really should do the biopsy, that even after six months the villi would still show damage.

I would have told him that eating gluten was a MUCH LESS PLEASANT lifestyle than avoiding it! Why put yourself through that pain, discomfort and health risk of eating gluten if it's not necessary. He sounds like the type that would have just diagnosed you with IBS and given you a prescription had you come in not knowing anything about celiac disease. I would get a new doctor if I were you. He didn't listen to you, the patient, at all and it sounds like he knows nothing about celiac's disease. Sadly, I couldn't find a doctor that would listen. After 3 miserable years and almost $10,000 in medical bills searching for a diagnosis I self-diagnosed via changing my diet. And I had miraculous results just like you. It sounds like you need a dr for the vitamin prescriptions, so I would keep looking if at all possible.

thleensd Enthusiast
thleensd
Posted

Get a new doctor!!

As yourself how important a formal diagnosis is. You know your body. Are you convinced enough to go gluten free for life? Even if it's not Celiac, you've clearly found a solution to feel better.

If you are still deficient in vitamins... maybe your gut is still damaged and would show on a biopsy? (which most won't do unless the numbers support it...)

Good luck!

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Lgood22573 Rookie
Lgood22573
Posted
  • Author

I think at this point, I just give up. I have been eating gluten-free, and will just continue to eat gluten-free. It doesn't matter that he thinks it's not really necessary. I know my body. And I knew he would not hold any accountability to the Enterolab report. Sigh... it's like no one believes me. I will be dumbfounded if my labs show anything on them. Thanks everyone.

afreeclimber74 Rookie
afreeclimber74
Posted

My doctor swears that the antibodies stay in your system for many years, even after eating gluten free. Same as the immune antibody response to the flu, etc.

I took the blood test after being gluten free for about 8 months and the results were over 100 for both.

Rebecca Madrid Newbie
Rebecca Madrid
Posted

Based on the variety of medical opinion in this forum, I suggest you get your doctor to refer you to a specialist. Obviously this is only if you want a formal diagnosis, you already know well enough that gluten hurts you.

Because my sister is also currently undergoing testing and has come up positive, I have been advised that the villi would still be damaged 3 months later and perhaps a gastro specialist will be able to conduct the next step. Having said that, I have been waiting a month just for a call-back to make an appointment.

Its really up to you what you do formally, but even self-diagnosis, and contacting a nutritionist will help you feel better.

Hope that helps...and I agree, find a new doctor!!! One that's a little more sensitive to your opinions and experience. It'll make a difference.

Rebecca :)

Jestgar Rising Star
Jestgar
Posted

My doctor swears that the antibodies stay in your system for many years, even after eating gluten free. Same as the immune antibody response to the flu, etc.

Your doctor needs to review his immunology text. The cells that know how to make the specific antibodies stay in your system for years. They only produce antibodies when challenged with the appropriate antigen. If you have antibodies in your system after 8 months you either a)Clear antibodies very slowly, or b)Still occasionally get some gluten (or a combination of these).

Jestgar Rising Star
Jestgar
Posted

He said the gluten-free diet was an unpleasant lifestyle and why put myself through it if it isn't necessary?

Tell him you also feel better when you exercise, but you find that to be an 'unpleasant lifestyle'. Since you've never been formally tested to see if you need to exercise, should you stop doing it?

Lgood22573 Rookie
Lgood22573
Posted
  • Author

hee hee that was funny Jestgar. Thank you for all the great info everybody. I appreciate it.

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