Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frustrated With My Mom's Doc

shepgs

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. lil-oly
      - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye.
    2. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thanks so much!
    3. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      I have osteopenia and have cracked three vertebrae. Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins. Blood tests don't reveal the amount of vitamins stored inside cells. The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four...
    4. JudyLou
      - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician? Have you been checked for nutritional deficiencies? Osteoporosis? Thyroid? Anemia? Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the...
    5. knitty kitty
      - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

      @JudyLou, I have dermatitis herpetiformis, too! And...big drum roll... Niacin improves dermatitis herpetiformis! Niacin is very important to skin health and intestinal health. You're correct. dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748
    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • lil-oly
      Gluten tester

      By lil-oly · Posted

      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.