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

Dvt

celiac-cindy75

Recommended Posts

celiac-cindy75 Newbie
celiac-cindy75
Posted

Hi! I am new to this forum I just registered today! Here is my story I was diagnosed with Celiac as a baby back in the 70's. Dr's did a biopsy to diagnose me back then i am told. I was on strict diet then gradually introduced to gluten - PASTA and Bread- and was not getting as sick so my parents felt i had 'outgrown' it. So for 30 something yrs now I have been eating gluten regularly. Well I have had so many issues with my stomach, arthritis, strange rashes, constipation, weight gain, fatigue for years and doctors always told me it was anxiety and it was all in my head. I did always mention that i had celiac as a baby, so you think this would have been a red flag to them? ANyway back in 2007 I go to hospital thinking i had a stroke b/c i could not move my left leg - I had foot drop and they FOUND that i had Multiple DVT's in BOTH my legs ( I did not have symptoms of blood clots they found them 'accidently'. turns out it was not a STroke (MRI's showed no Stroke) and they were stumped for 2 yrs as to why I got these clots! trust me they did genetic testing, lupus, tons of tests and nothing came up. They did eventually give me Celiac blood test but it came back negative so they don't believe I was diagnosed with celiac back in the day. Well after reading a book on Celiac, I really think its possible DVT is related to Celiac. I am going to a GI dr on Wed for the first time in my adult yrs and i am hoping that does an Endoscopy to see for sure that I have Celiac and to see what damage I done to my body. I have been feeling AWFUL lately and i know it has to be because of Gluten. Has anyone else ever had blood clot issues that has Celiac? Thank you.

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

Celiac.com Sponsor (A8-M):


Kelly777 Newbie
Kelly777
Posted

Yes, I was misdiagnosed by a lab test 39 years ago after having a DVT with a RARE blood disease called Anti Thrombin III. I went to a hematologist on March 9th. She repeated the newer tests for all coagulating diseases and I was negative. I stopped my "blood thinner" after 39 years and I just don't feel right. Something is going on. I see the hematologist on Wednesday next week and hopefully she will tell me if my coagulation problems could be related to this disease. Who knows?

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 xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    2. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    4. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
    5. trents
      - trents replied to Jane07's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free Yogurt suggest

      I would not think store bought yogurt would contain gluten unless it possibly could be through an added flavoring or coloring ingredient. Otherwise, it should be naturally gluten free. Keep in mind that some companies are capitalizing on people's fears and ignorance (nothing personal intended) by labeling foods "gluten free" that are just that way by...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,366
    • Most Online (within 30 mins)
      7,748
    caroljben
    Newest Member
    caroljben
    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
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
    • trents
      Gluten free Yogurt suggest

      By trents · Posted

      I would not think store bought yogurt would contain gluten unless it possibly could be through an added flavoring or coloring ingredient. Otherwise, it should be naturally gluten free.  Keep in mind that some companies are capitalizing on people's fears and ignorance (nothing personal intended) by labeling foods "gluten free" that are just that way by the nature of what they are. They are hoping to create a marketing edge over their competitors by adding "gluten free" because they know it may catch attention of those new to the celiac/gluten sensitivity experience without having to cost them anything in the way of changing their manufacturing process or doing testing.
×
×
  • 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.