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

Why Is Testing Important?

katiekay

Recommended Posts

katiekay Explorer
katiekay
Posted

I'm new to celiacs stuff... curious if a person knows gluten is hard on the system why is testing important? Is it insurance? Just trying to figure out since I may get negative result due to going gluten-free for about a week for other reasons... I have been back on wheat for 4 days now... I am intense pain. I think it is the gluten (could be coincidental). If it comes back negative I kinda want to go gluten-free anyway but wondering if there is a reason to keep eating gluten to try and get a positive test result??

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I'm new to celiacs stuff... curious if a person knows gluten is hard on the system why is testing important? Is it insurance? Just trying to figure out since I may get negative result due to going gluten-free for about a week for other reasons... I have been back on wheat for 4 days now... I am intense pain. I think it is the gluten (could be coincidental). If it comes back negative I kinda want to go gluten-free anyway but wondering if there is a reason to keep eating gluten to try and get a positive test result??

Please get a Celiac Serologic Panel (blood test) asap. Going gluten free for a week should not interfere with your results. It obvious that you have an issues.

If you have intense pain, you need to see a doctor and be tested. You want to rule out more serious concerns.

Please do so and check back with us. :)

katiekay Explorer
katiekay
Posted
  • Author

confused... for supper tonight I was at someone else's house and had mashed potatoes and carrots... no gluten. I have had gluten during every other meal... why would I have a reaction tonight??? is it just a delayed reaction from lunch and breakfast and the last few days????

eatmeat4good Enthusiast
eatmeat4good
Posted

Yes, it can be a delayed reaction. It can also be that there is damage from the gluten and your pain and digestive problems can continue until you are gluten free for a period of time long enough to heal.

It is not a direct cause and effect relationship like you have to feel bad only directly after eating gluten.

That is why it is so hard to figure out and why people can remain mildly to severly ill for years until they find out is actually is a problem with gluten.

A lot of people decide to forego the testing because they cannot tolerate the symptoms of eating gluten long enough to get the test. It really is up to you.

Jestgar Rising Star
Jestgar
Posted

confused... for supper tonight I was at someone else's house and had mashed potatoes and carrots... no gluten. I have had gluten during every other meal... why would I have a reaction tonight??? is it just a delayed reaction from lunch and breakfast and the last few days????

It could be because they cook the potatoes in the same pot they use for pasta....

katiekay Explorer
katiekay
Posted
  • Author

do you mean even if pot has been washed??????

Jestgar Rising Star
Jestgar
Posted

do you mean even if pot has been washed??????

yes. I spent my first two weeks gluten-free, glutening myself because I was using my pasta pot for my mashed potatoes.

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

Celiac.com Sponsor (A8-M):


goodnews Apprentice
goodnews
Posted

confused... for supper tonight I was at someone else's house and had mashed potatoes and carrots... no gluten. I have had gluten during every other meal... why would I have a reaction tonight??? is it just a delayed reaction from lunch and breakfast and the last few days????

It can take a while for reactions...especially when your digestive systems is all messed up. Also, some people who have gluten sensitivities have other intolerances. Maybe dairy or something else is bothering you too. You just never know.

As to why testing is important, it is different for everyone. I plan on going gluten free as soon as possible to see if it helps. But I am waiting on starting because I am still going through testing. For myself I would rather know if this is something that I am having an intolerance or sensitivity to that may go away in time, or if this is something that hurts by body permanently that I have to steer clear of for life. That, and if it is celiac I have family that have some symptoms that I would like tested.

katiekay Explorer
katiekay
Posted
  • Author

How do you ever eat at someone else's home then???? Oh crap!!! This is hard.

goodnews - thanks for your post. I am so uncomfortable... hopefully I get a positive blood test result today and then just not have to think further on that subject.

eatmeat4good Enthusiast
eatmeat4good
Posted

Eating at other people's homes and in rstaurants is very difficult. Even eating in your own home in the beginning months is difficult until you learn all the ways you can be cross contaminated. But you will get the hang of it eventually. Read as much as you can and I'm glad your test was so soon.

Collanders, scratched pots and pans, shared utensils like wooden spoons, gluten in lipsick, not being able to kiss a gluten eater before they brush their teeth are all part of the process of keeping yourself safe if indeed you do have Celiac/Gluten Intolerance.

But it is possible so don't lose hope. And it is worth it all to feel better. I hope you can feel better soon.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.