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Frustrated With My Mom's Doc

shepgs

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shepgs Apprentice
shepgs
Posted

My mother has severe RA. I think she is finally listening to me about gluten probably playing a role in it. I sent her a list of tests to have her rheumatologist run. Since I went the route of Enterolab, I just pulled the list from online.

DGP (Deamidated gliadin peptide antibody)

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

EMA (Immunoglobulin A anti-endomysium antibodies)

HLA-DQ2 and HLA-DQ8 gene tests

The doctor said the only one she might need is the tTG-IgA one. Grrrr... Will that alone be of any use when she gets the results?

Regardless, she has decided that going gluten-free would probably benefit her anyway. That's the good thing. Now I just have to begin the process of educating her on how to do it completely, not just half-way.

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macocha Contributor
macocha
Posted

the doc is having my other children tested and those labs are the:

TTG IGA (which I guess is the main important one)

and then Total IGA.

Hope this helps :)

tarnalberry Community Regular
tarnalberry
Posted

No, the tTg IgA alone is pretty useless. If he had done at least a total serum IgA as well, to find out of she's IgA deficient (which affects a decent number of celiacs - 10%?) then it wouldn't be worthless, but wouldn't be all that great. The whole point is that the tests need to be done and analyzed in concert. Her doc's clearly kinda useless on the issue.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you are going to do gene testing make sure you go to someplace that tests for all the genes, there are 9 currently known to be celiac related. I had my genes tested a few years after diagnosis and found I have 2 copies of DQ9 which is considered an RA gene here in the US but is a recognized celiac related gene in some other countries. I am glad to hear she is going to try the diet, she should be very strict when she does it. Do make sure she is done with all testing they are going to do first. I hope she sees as good a resolution of her arthritis as I did. It did take a few months but by month six mine was in 'remission' and only flares when I get glutened.

shepgs Apprentice
shepgs
Posted
  • Author

If you are going to do gene testing make sure you go to someplace that tests for all the genes, there are 9 currently known to be celiac related. I had my genes tested a few years after diagnosis and found I have 2 copies of DQ9 which is considered an RA gene here in the US but is a recognized celiac related gene in some other countries. I am glad to hear she is going to try the diet, she should be very strict when she does it. Do make sure she is done with all testing they are going to do first. I hope she sees as good a resolution of her arthritis as I did. It did take a few months but by month six mine was in 'remission' and only flares when I get glutened.

Could you tell me about these other celiac genes? I did have mine tested through Enterolab. Do they test for all the ones you are referring to?

My mom has damage that is irreversible, having had more surgeries than I can count on both hands. :( However, I'm hoping a gluten-free diet would slow down or stop more inflammation and future damage. Her doc yesterday is wanting to switch her meds b/c of the inflammation - but didn't want to look in this direction. Maybe someday the medical community will catch on.

That is so great that you were able to see resolution of your RA! I'm hoping to prevent it before even developing it.

ravenwoodglass Mentor
ravenwoodglass
Posted

Could you tell me about these other celiac genes? I did have mine tested through Enterolab. Do they test for all the ones you are referring to?

My mom has damage that is irreversible, having had more surgeries than I can count on both hands. :( However, I'm hoping a gluten-free diet would slow down or stop more inflammation and future damage. Her doc yesterday is wanting to switch her meds b/c of the inflammation - but didn't want to look in this direction. Maybe someday the medical community will catch on.

That is so great that you were able to see resolution of your RA! I'm hoping to prevent it before even developing it.

Yes it was Enterolab that I used. I don't know if there are other places that test for all the genes now known but there may be.

Yea I have irreversible damage also but no where near as bad as it sounds like your Moms is. My hands still look 'knobby' but I can move and use them. Before diagnosis I couldn't even hold a cup by the handle or write with a pen or even type on a keyboard most days. Hopefully the diet will relieve the inflammation for her also.

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    • Resada
      Work friends & food

      By Resada · Posted

      Same, and I appreciate your comments. I just needed to get it off my chest. Sometimes, even when its a genuine mistake, it can feel all too hurtful and I didn't want to go back to work tomorrow still in my feelings. 
    • trents
      Work friends & food

      By trents · Posted

      Yes, probably slipped his mind. Grace is in order here is my thought.
    • Resada
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      By Resada · Posted

      I should have added that, while I dont have access during the meetings, I do as soon as I leave them (same for him) so I would have seen before I even left work. He has my number since we've needed to coordinate by cell a few times for work and other stuff. I usually have a protein bar or two in my desk for emergencies so I could have grabbed one of those and gone to meet them at the right restaurant.  Someone else decided on the change of restaurant and it must have slipped his mind that I wasn't coming back to my desk.
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