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

Got Me And My Husband's Test Results Back

salexander421

Recommended Posts

salexander421 Enthusiast
salexander421
Posted

Me and my husband decided to go ahead and get tested for celiac disease since we found out our daughter carries one of the genes. I've been on a gluten free diet for a while now but they went ahead with the blood test and it came back negative (I was expecting this due to my diet). My husband's also came back negative which was a little of a surprise to us since he seemed to have more symptoms. I asked the nurse what test they ran and all she kept saying was "celiac panel". They're faxing the results so I can look at them myself. Anyways, they want to go ahead and confirm the test results with an endoscopy. Is it standard practice to go straight to an endoscopy after a negative result? It would make more sense to me to do the gene test first to see if we even have the gene before jumping to an endoscopy.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Yes it would be standard to go to the endo after the blood test. It is good that your doctor knows that false negatives are not uncommon. They are not uncommon with the endo either so the diet should be tried after the endo is preformed. No need to wait for the results. The gene tests are not diagnostic and more celiac associated genes are being found than the two most commonly looked for. A gene test is interesting but not conclusive.

salexander421 Enthusiast
salexander421
Posted
  • Author

Yes it would be standard to go to the endo after the blood test. It is good that your doctor knows that false negatives are not uncommon. They are not uncommon with the endo either so the diet should be tried after the endo is preformed. No need to wait for the results. The gene tests are not diagnostic and more celiac associated genes are being found than the two most commonly looked for. A gene test is interesting but not conclusive.

Ok, good to know it's standard practice. I would just think a gene test would give you a better idea of whether or not it would even be necessary to do such an invasive procedure. We do know that our daughter has both symptoms and the DQ2 gene so it has to be coming from somewhere right? Knowing my husband, if both the blood test and endo are negative he will not try the diet. He's just to dang black and white on medical stuff. Drives me crazy. I do think though, if he has the same gene my daughter has he would be more likely to try the diet even if his blood test and endo are negative. I on the other hand am already gluten free and would need to undergo a gluten challenge before the endo. Gluten free makes such a huge difference with me I'm not really willing to do that I would just like to know if the risk is in my family, hence the gene test.

How common would it be to have both a negative celiac panel and a negative endo and still have celiac disease? I'm thinking not very likely but then again I'm fairly new to all this.

ravenwoodglass Mentor
ravenwoodglass
Posted

How common would it be to have both a negative celiac panel and a negative endo and still have celiac disease? I'm thinking not very likely but then again I'm fairly new to all this.

More common than we would like for a variety of reasons. If you think it would help get your DH to try the diet you certainly could get the gene tests done but try to go with someplace that will test for more than just the DQ2 or DQ8. Glad to hear the diet is also helping you. If your DH is symptomatic he really should try the diet. Have him try it starting the day the endo is done, before you get the test results. His response to the diet may be enough to convince him before the results are even back.

sb2178 Enthusiast
sb2178
Posted

That's a question I've been puzzling over for a while. From the lit that I can find, false negative blood work depends very much on the lab (50% was one abhorrent lab's rating on biopsy proven, previously positive celiac patients on a gluten-based diet but it seems like 5-20% is more the norm). False negative biopsies are rarely discussed, which is frustrating.

The other question I've been considering is having progressive autoimmune disease and the standards of diagnosis requiring substantial tissue destruction. It's like rheumatoid arthritis-- better to catch and treat as early as possible-- but the celiac diagnosis requires really substantially non-functional intestines. Sub-clinical and latent celiac disease must exist, but how can it be reliably diagnosed when our markers are correlated to flat intestines???

The genetics are definitely interesting-- I had mine done to help reveal whether I might have the autoimmune aspect, or be on a course of developing it. But, as said above, NOT diagnostic. Just one more puzzle piece. I have been able to use it to influence getting relatives tested.

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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • 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.