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! Should I Test Or Not?


henny

Recommended Posts

henny Explorer

GrRRRrrrr.

I went gluten-free about 5 months ago and had an immediate and profound relief from my symptoms, which included almost daily migraines, GI symptoms, and extreme stomach pain.

I identify myself as 'gluten intolorant' and am fine with the dietary restrictions.

A majority of my mother's side of the family have definitive diagnoses of Celiac.

My mother has symptoms that respond to diet, but was negative on the blood test.

People keep telling me I should get tested. My husband's gastroenterologist (DH has Crohns' and for some reason decided to tell his doc my story) insists I go back on gluten and get tested. Friends of ours are all on my case about testing, and now my husband is bugging me about it! Ironically, it was his idea that I 'try the diet' instead of getting tested way back when I first suspected gluten and talked to him about my options - to test or not.

Everyone is driving me nuts and making me feel like I'm not taking care of myself! My thinking is: WHAT will I gain from going through the misery and getting tested? I refuse to do it just to stop the nagging, but it's getting really depressing having people I care about disapprove of my decision. Truthfully, if I tested and it was negative, I would still go back on the diet! I feel like all I will gain by being tested is a new pre-existing condition I can be descriminated against with.

Please tell me what I should do!


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star
WHAT will I gain from going through the misery and getting tested?

Answer this question for yourself. What would you gain?

GFinDC Veteran

It really is kind of an individual thing I think, weather to go for the full diagnosis or not. I had been off gluten for 4 months when I finally got to see a Dr. that specializes in it. I wrote down my symptoms before hand and he read them over and said it sounded like celiac to him. I was considering going back on gluten to do the biopsy testing but decided against it. I was feeling so much better off the gluten that I didn't really need any other "evidence" to convince me. Plus the history of other family members with GI diseases and related conditions. It is kind of silly if you think about it. Make yourself miserable for a couple months just so you can be told not to eat something you already know is hurting you. That is assuming you know that already.

ravenwoodglass Mentor

Of course they think you should do a challenge, they are not the one's who would have to deal with the pain, the D, the fatigue and the risk to a system that has already shown how much it does not like gluten and how much better it feels without it.

It is your body and your decision. You could consider a short 'until I react' challenge if you haven't had enough of them already through cross contamination and the slip ups we all make in the beginning. Your response might be enough to at least get DH on your side.

kbtoyssni Contributor

Some questions to ask yourself:

1. What would you do if you got a positive diagnosis? Would it change anything in your life?

2. What would you do if you got a negative diagnosis (because a negative is likely after 5 months gluten-free)? Would you go back to eating gluten or not?

3. Are the answers to questions 1 & 2 worth going back on gluten for?

Archived

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

  • 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. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,369
    • Most Online (within 30 mins)
      7,748

    Carole Eva
    Newest Member
    Carole Eva
    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
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.