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

How 'worthy' Is An Official Label?


Stern

Recommended Posts

Stern Newbie

My doctor is apparently not willing to do anything for me, and I've just been wondering about this for a little bit.

 

I've been on a gluten-free diet for a little under 2 years now. I went gluten-free with a friend that did have celiac disease, and recognized some of her own symptoms in the problems I'd been having. I felt so much better that month, that I knew that gluten had to be a problem for me. However, when I tested (I went back on gluten for a month, then had a blood test done), it came back negative. However, that month was horrible for me, and I went back on the gluten-free diet after the test.

 

So, I've been reading that blood tests aren't the end-all, be-all, and that endos or other tests are much more conclusive. However, my doctor didn't really jump at the idea when I presented it, and now I'm wondering, how much would the 'label' help me? Yes, it would let me know exactly what was happening to my body if I decided to eat gluten, but otherwise?

 

Some of my symptoms before (Pre-2 years ago, going on for... years and years...), flatulance, nose bleeds, what I'm suspecting was a slight case of osteoperosis (never got it -confirmed-, but I mean, I broke my finger catching a not-too-stong basketball pass.), something that the doctors called excema, and a few more things.

 

Could I get some help, please? I don't feel like my doctor understands, not that she cares either, and I'd like some more ideas of what my next step should be.


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



Celiac.com Sponsor (A8-M):



Ollie's Mom Apprentice

There are a number if us here who are "self diagnosed". We know gluten makes us feel awful, and know we feel better without it. Some of us (including me) wouldn't be able to do a gluten challenge to get an official diagnosis anyway. Just a trace of gluten and I'm violently ill for 24 hours, and feel like crap for days after that.

My personal opinion is that if you don't need special accommodations, like if you're a student trying to opt out of a mandatory meal plan at college or a younger child who needs special accommodations at school, an official diagnosis isn't necessary.

I figure if gluten is causing health issues, it's really a bit of a blessing. You don't need a doctor's approval or prescription to start a gluten-free diet. My doc thinks I'm a bit nuts for going gluten-free, but since it has made my laundry list of symptoms disappear, I really don't care what he thinks. ;-)

Stern Newbie

Hahaha, luckily, not just yet, I get out of school before lunch anyway through my schedule, but I'll have to look into the college thing, I wasn't aware that I might have to work it wout with college, but I'll look into it (Not quite sure where I want to go anyway, this is going to be a factor, I guess. x_X ) I was worried about having to go back to gluten, but since you're saying it may not be necessary, I think I won't tackle it until it is really getting to be a problem (Which I haven't seen so far)

 

Thank you so much for answeing my question. :- ) I'm just kinda lost x_X

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 ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Confused about HLA-DQ Celiac gene test result

    2. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      29

      Insomnia help

    3. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Confused about HLA-DQ Celiac gene test result

    4. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      Pain in the right side of abdomen

    5. - Theresa2407 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Books about celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,465
    • Most Online (within 30 mins)
      7,748

    Dferares
    Newest Member
    Dferares
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      How clean is her gluten free diet?  Is dairy included? Does she eat out?  SIBO?  Thiamine deficiency presenting as Gastrointestinal Beriberi?
    • knitty kitty
      There's more essential vitamins than B12 and Vitamin D!   Thiamine is B1.  Thiamine deficiency causes insomnia. Thiamine deficiency causes changes in brain function resulting in anxiety, insomnia, depression and dementia.  The brain uses more thiamine when stressed emotionally or physically.   Interesting Reading: Subclinical Thiamine deficiency causes anxiety, insomnia and depression... https://www.psychiatryredefined.org/running-on-empty-subclinical-thiamine-deficiency-is-common-and-causes-depression/#:~:text=Early signs of low thiamine,low appetite%2C and sleep disruption. Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Sleep and indolamine alterations induced by thiamine deficiency https://pubmed.ncbi.nlm.nih.gov/6182942/ Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat https://pubmed.ncbi.nlm.nih.gov/9804367/
    • trents
      But knitty kitty, if OP does have celiac disease, why aren't her symptoms in abatement after practicing the gluten free diet for four years? If the OP was a refractory celiac, you would think the biopsy wouldn't be clean. 
    • Theresa2407
      Many people dignosed with Celiac need to have their Gall Bladder removed from years of Celiac symtoms distroying our organs. Also NSAID (Liver disease)  also associated with Celiac as everything you eat and drink is filtered by your Liver.  So this is not uncommon; seeing more and more of Liver disease on the increase.
    • Theresa2407
      The most comprehensive book for Celiac is writtin by Dr Peter Green  "Celiac a hidden Epidemic".  Dr. Green is one of the leading Celiac doctors in the country and research also.  His book is well written and is easy to understand. I refer to it as my Celiac Bible. Your local library may have a copy or It is also sold on Amazon .  He has an updated version also; but I have not had a change to read it yet. There is also one "Celiac for Dummies".  If your have kids with Celiac, it makes it simple to know what they are dealing with.  But it is still an Adult book. And this site is wonderful.  Scott has helped the Celiac community so much and you can rely on his responses. GIG.net will keep you informed about the labeling laws.  Summer camp for Kids with Celiac and so much more.
×
×
  • 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.