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

Best Method Of Testing

thegirlsmom

Recommended Posts

thegirlsmom Apprentice
thegirlsmom
Posted

My husband has been having some digestion issues over the last 3 months and we are planning on doing some testing come the first of the year. Over Thanksgiving I talked to his family and found there to be a family history of colon problems including: His Aunt just had some of her colon removed, his cousin recently went to the er with a ruptured colon due to diverticulitis, his mom won't admit to anything but has always struggled with c and hemmies, and his brother is currently having issues and going in for test the first of the year also(I found this out through his wife-he won't admit to it.)

So back to my hubby, he feels very inflamed in his colon and get fever blisters any time he gets contaminated. I have celiacs and so our house is mostly gluten free but when we say eat steak at a friends house, I will react and he reacts stronger!

So I guess I have 2 questions:

Does anyone have "inflamation" in their colon when they get contaminated? Or do you think it sounds more like colitus (he has no D but many of the other very typical celiac symptoms of fatigue, excessive foul smelling gas, anxiety, brain fog, anemia, etc. that last's about 2 weeks from contamination and then goes away)?

And: what tests should I request from my DR? Or should I just go to enterolab myself? The expense will be out of pocket one way or the other.

Thanks

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

If he is eating mostly gluten free, and only flares when he gets some gluten, the traditional testing is not going to be a lot of use for him, since it requires a full gluten diet for 2-3 months. You could go the Enterolab route - while not diagnostic it does give a picture of what is going on, including the genetic predisposition if you so choose. Does he discuss his symptoms with his regular doctor? It sounds like an endoscopy and colonoscopy could be a good idea for him to rule out colitis, Chron's and anything else. If you are sure it is specifically a gluten reaction and he has been avoiding gluten, the testing options are pretty limited.

thegirlsmom Apprentice
thegirlsmom
Posted
  • Author

If he is eating mostly gluten free, and only flares when he gets some gluten, the traditional testing is not going to be a lot of use for him, since it requires a full gluten diet for 2-3 months. You could go the Enterolab route - while not diagnostic it does give a picture of what is going on, including the genetic predisposition if you so choose. Does he discuss his symptoms with his regular doctor? It sounds like an endoscopy and colonoscopy could be a good idea for him to rule out colitis, Chron's and anything else. If you are sure it is specifically a gluten reaction and he has been avoiding gluten, the testing options are pretty limited.

Yes I do know that it is directly related to gluten. I have watched his symptoms and what he eats. It's a cycle. he eats something, tummy gets icky, swelling begins, gas begins, when he starts to feel better a week later, he gets grumpy. Then when he starts to feel normal again after 2 weeks he eats something else that messes him up. He has been trying to be good, it just takes more knowledge to be aware of things like spices.

He hasn't been to the DR. I think he is nervous about what it could be. I am pushing him to get tested.

He says eating gluten to test is not an option and I don't want to waste my money sending him for a bunch of blood work if it is inaccurate. I am debating just doing the Enterolab gene test. Any idea how accurate it is in diagnosing?

mushroom Proficient
mushroom
Posted

The gene test is not diagnostic -- it merely indicates a predisposition to develop celiac disease if he has DQ2 or DQ8, although a small percentage of celiacs carry different genes. The Enterolab test will also measure overall IgA levels, also not especially diagnostic except if they are exceptionally high.

Skylark Collaborator
Skylark
Posted

What are you trying to learn with the testing? You already know he can't eat gluten. There are forms of colitis that involve reactions to gluten. I don't know whether it's autoimmune or an intolerance reaction.

Right now the science of celiac testing is in such a sorry state of affairs that we can only dceliac autoimmunity by making someone have a complete relapse, and even then the tests are only maybe 80% accurate if you get both blood and biopsy. As Mushroom said, enterolab and genetic tests are not diagnostic.

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. Me,Sue
      - Me,Sue posted a topic in Introduce Yourself / Share Stuff
      0

      Knowing what to do when feeling unwell.

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed...
    2. Francis M
      - Francis M replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    3. Scott Adams
      - Scott Adams replied to Francis M's topic in Gluten-Free Restaurants
      8

      The Happy Tart review

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      3

      Stomach burning and neuropathy

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Related Issues & Disorders
      2

      Nausea

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular? Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,852
    • Most Online (within 30 mins)
      7,748
    LG2
    Newest Member
    LG2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
    • Scott Adams
      Nausea

      By Scott Adams · Posted

      Welcome to the forum. Is the nausea associated with eating certain foods, or anything else in particular?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • 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.