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Dr. Or Enterolab And Diagnosis Or Not

bahrbdoll

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bahrbdoll Rookie
bahrbdoll
Posted

So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements

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ang1e0251 Contributor
ang1e0251
Posted

If it would be helpful to your daughters, then you should consider getting the dr's dx. See where the dr wants to take the testing. It's hard to go back later if you decide you want testing down the road and have been gluten-free for awhile.

Lisa Mentor
Lisa
Posted

These are the tests to request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Make sure that you are on a full gluten diet, until all testing is exausted. Enterolabs can test you for sensitivites, but they cannot diagnose for Celiac.

Good luck an take a walk around this place. It's full of wonderful information.

LDJofDenver Apprentice
LDJofDenver
Posted
So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements

If your medical insurance will pay for genetic testing I'd do it, especially since you don't have to be eating gluten to have that done (you mentioned you've been gluten-free for a few months).

A lot of celiacs on this forum (and out in the world in general) don't have a confirmed medical diagnosis (are self-diagnosed, in effect). My son was diagnosed by diet, by his GI doc, 11 years ago or so, which was good enough for him (and the doc!) after many many years of suffering and misdiagnosis. The GI doc's mother had celiac disease and doc took one look at my son's history and told him what was suspected, and put on a sort of Atkins diet to confirm. Both were delighted at my son's response and that was that. He began living gluten free.

I am diagnosed by both positive blood work and small intestine biopsy. A reason I see, by comparison of my son's to my case, is that with a medical diagnosis people (the public, family, schools, doctors/medical community) seem to take it more seriously and don't question you. Medical people are scientists and they always like "proof." However, for a large percent of celiacs, especially ones whose blood work came up negative, they have all the proof they need by the dramatic improvements once on a gluten free diet.

bahrbdoll Rookie
bahrbdoll
Posted
  • Author

Thank You so much! That was the perfect answer, just what I needed to hear. I guess I'm the type of person who feels like I need it in black and white somehow someway. I'm just really having a hard time w/ Dr. telling me nope, no celiacs even though I litterally have experienced just about every symptom I've come across. yet, I'm improving slowly but surely being gluten-free- I just worry about the fact this is for life and I would like to know 100%, specially when it affects my girls. Thank you again

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

I finally got a doctor's diagnosis because of my genetic testing done through Entrolab. My doctor did not take me seriously when I first went in for the blood test. It was one year later with my gentic testing in hand did he sit and really listen to me. When he found out I had been gluten free for one year with fantastic results on top of having one Celiac gene and one gluten sensitivity gene he diagnosed me with Celiac. Since your insurance will pay for the genetic testing I would go ahead and have it done. You do not need to be eating gluten for it to be accurate. But, if you plan on having the blood test done to test for Celiac you should begin eating gluten again, at least for a few months. Three months gluten free is long enough for your body to begin to heal and you might not get accurate results.

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      Blood results

      By trents · Posted

      Well, you've done both stages of testing now, the blood testing and the scope/biopsy so there is no reason to postpone trialing a gluten-free diet. And, yes, we get many reports on this forum from people with similar diagnostic experiences that leave them without desired clarity. My take would be your daughter is in the early stages of developing active celiac disease, perhaps transitioning from NCGS (Non Celiac Gluten Sensitivity) to celiac.
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      By Heatherisle · Posted

      Sorry, typing error, not strophic, should read strophic!!!! Did it again, atrophic, not strophic, (flippin technology)
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