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

New Member.. Need Help! Health Story --> Am I A Celiac?

nutrifoodie

Recommended Posts

nutrifoodie Apprentice
nutrifoodie
Posted

Hello everyone!

I

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

Celiac.com Sponsor (A8-M):


spunky Contributor
spunky
Posted

Well I read your story and have to say I'm sorry you've been through so many confusing things without answers!!!

I think most people here could relate!

As far as advice... I don't have much. I am undiagnosed, because doctors just exasperate me with all the round and round useless tests and wrong meds, etc. So I diagnosed myself. All I can say is that in me at least, when i finally tried going 100% gluten free (reading every label of everything, cross-referencing all ingredients with lists I got from here and some other places on the net, and whenever there is any doubt whatsoever, pass on whatever food or ingredient that is), I got better in ways right away, but new food intolerances started and a few strange symptoms began occurring, and so my healing was sort of roller coaster fashion. After a whole year, things began setttling down, things were even better after two full years.

So I think if you can't find a doctor who can help you, being totally gluten free might give you an answer, but it might take a while to see all the results.

Sorry I can't tell you more...maybe some others here can.

I think sometimes if doctors can't give you an answer, trying 100% gluten free is the only way to find out... that and a lot of patience.

nutrifoodie Apprentice
nutrifoodie
Posted
  • Author

Thanks for the input spunky. I also think I might be struggling with some food sensitivities that aren't uncovered.

Also, I forgot to mention that the constipation has lead to hemmrhoids.

I still need everyone's expert advice!

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. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold. Our bodies have difficulty absorbing and utilizing it. Only 30% is absorbed and less can be utilized. There's some question as to how well multivitamins...
    2. Scatterbrain
      - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      I am taking a multivitamin which is pretty bolstered with B’s. Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol. Started Creapure creatine monohydrate in June for athletic recovery and brain fog. I have been working with a Nutritionist along side my Dr. since February. My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t ...
    3. knitty kitty
      - knitty kitty replied to Scatterbrain's topic in Sports and Fitness
      9

      Feel like I’m starting over

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies. It's worth talking to a dietician or nutritionist about. Did you get a Marsh score at your diagnosis? Was your tTg IgA level very high? These can indicate more intestinal damage and poorer absorption of nutrients. Are you eating...
    4. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      34

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

      Vitamin and mineral deficiencies can make TMJ worse. Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain. Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease. It's important to eat healthy nutrient dense diets like the Autoimmune...
    5. Celiac.com Sponsored Post
      0

      Recently launched Daura Non-Alcoholic Named One of the Best in the World by Forbes

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,311
    • Most Online (within 30 mins)
      7,748
    EMP6543
    Newest Member
    EMP6543
    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
      Feel like I’m starting over

      By knitty kitty · Posted

      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      Feel like I’m starting over

      By Scatterbrain · Posted

      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      Feel like I’m starting over

      By knitty kitty · Posted

      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Iam · Posted

      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
×
×
  • 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.