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Wanted To Be Retested After Being Gluten Free- Doctor Said No Point?

HS7474

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HS7474 Apprentice
HS7474
Posted

I still experience some symptoms even though I've been gluten free for over 2 years. I never had a positive biopsy since my doctor said that my blood test levels were high enough that there was no denying I have Celiac. I believe it was the Tga test. I had a biopsy while eating gluten free to check for other issues and nothing was found. I visited the doctor the otehr day and asked her if she could write up a blood test to have my levels checked again and she said that there was no point since there wouldn't be any difference. I thought that it was an antibody and that if I was not ingesting gluten I could be tested and it would appear that I don't have Celiac disease.

Could anyone shed some light on this? I know my previous reading was >100 and was off the chart so the doctor said I definitely had the disease so that's why I never had the biopsy. I was hoping to see if my levels had dropped to normal or something but does it not work that way?

Thank you so much for any clarification.

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AzizaRivers Apprentice
AzizaRivers
Posted

A repeat of your blood test could be valuable. If you've been gluten free, but you're still experiencing symptoms, one possible reason for that might be cross-contamination or gluten sneaking in some way you're not aware of. Getting your blood-test redone might be able to shed some light on that.

On the other hand, getting retested might not give you any new information to go off of. Some people take a VERY long time to heal before they stop feeling poorly, and some people develop other intolerances that give them problems.

sa1937 Community Regular
sa1937
Posted

To me it would seem normal for the dr. to recheck your lab results, especially tTG and EMA, if you are still having some issues.

My tTG level was also >100 on my initial celiac panel. My dr. basically ordered a follow-up test as I was concerned about my readings after being gluten-free for nine months.

Cara in Boston Enthusiast
Cara in Boston
Posted

It is my understanding that you should have your blood levels checked regularly (every 2 years?) to make sure the gluten free diet is working. That is what I was told.

If it is working, your levels should all be within range. If not, you are unknowingly consuming gluten and need to figure it out.

Cara

Karla01 Apprentice
Karla01
Posted

I still experience some symptoms even though I've been gluten free for over 2 years. I never had a positive biopsy since my doctor said that my blood test levels were high enough that there was no denying I have Celiac. I believe it was the Tga test. I had a biopsy while eating gluten free to check for other issues and nothing was found. I visited the doctor the otehr day and asked her if she could write up a blood test to have my levels checked again and she said that there was no point since there wouldn't be any difference. I thought that it was an antibody and that if I was not ingesting gluten I could be tested and it would appear that I don't have Celiac disease.

Could anyone shed some light on this? I know my previous reading was >100 and was off the chart so the doctor said I definitely had the disease so that's why I never had the biopsy. I was hoping to see if my levels had dropped to normal or something but does it not work that way?

Thank you so much for any clarification.

It is very important to have your blood work tested again after being on the gluten free diet to verify that you are truly gluten free. My doctor tested me 3 months after being on the diet and then told me I could come back yearly because my levels were almost normal.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Your dr is wrong. Show them this:

Open Original Shared Link

If they still refuse to retest you then fire them and get a new dr.

HS7474 Apprentice
HS7474
Posted
  • Author

Thank you all so much for your replies :) I'll have to try to find a nice way of confronting my doctor with this!

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Thank you all so much for your replies :) I'll have to try to find a nice way of confronting my doctor with this!

Your dr works for you. There is no need to be nice, unless you are living in a country where you have no choice in who your dr is, in which case you have my sympathy. Be firm in your askign for retesting and if they still refuse find a NEW dr.

Roda Rising Star
Roda
Posted

My GI told me that my levels would never go down either. I knew he was wrong. I have had them rechecked twice since my initial diagnosis and my ttg last was 4 down from 78 so I guess now he knows he was wrong. My Igg gliadin is still just positive as of last Aug. I'm hoping the changes I made since then are helping..gotta go get a recheck.

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