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. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

      I did another Google Search and found this on the GE appliance website regarding their GE® RPWFE™ REFRIGERATOR WATER FILTER 3-PACK. Just go down the QA section and type the word gluten in the search. Here are the results: As mentioned in my last post, if you plan to use a filter it is a good idea to contact the manufacturer.
    2. Known1
      - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Reverse Osmosis (RO) Water

      I am sorry to hear you went through that @YoshiLuckyJackpotWinner888. That could not have been an easy thing to figure out. I just used Uncle Google to perform this search: "Can water filters contain gluten?" Here is the AI overview that was returned: Yes, some water filters can theoretically contain or be processed with gluten. While rare, certain...
    3. Scott Adams
      0

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    4. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Most people are already deficient in minerals. I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter. I happen to get over 100% of rda vitamins and minerals. I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined....
    5. knitty kitty
      - knitty kitty replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Reverse osmosis water pulls electrolyte minerals out of the body. If used for cooking, RO water will even pull even more electrolytes out of the food. If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance. The symptoms of Electrolyte Imbalance are similar to those that occur...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,578
    • Most Online (within 30 mins)
      7,748
    BilboB
    Newest Member
    BilboB
    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

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Update about this condition. Into late 2025/early 2026 the symptom, which is a clear stocking/glove pattern (it is now frequent in my hands as well as feet and lower legs) has basically outgrown the medication (Duloxetine, now at max dose of 120mg/day). I notice that strong pain occurs when my mind de-focuses in particular, then if I focus awareness again, the pain becomes inhibited. Pain is much worse after meals as has always been the case, and particularly after exercising for some time - the effect is accumulative over weeks. Even when my energy is excellent with no fatigue. Infact, last year doing cycling, it was the increased pain alone that made me have to reduce what I did. I got very fit and energetic, but had awful stabbing foot pains on the surface of the big toe, or sometimes heel, or anywhere in the skin of the foot and sometimes lower leg. These are not muscle pains or internal to the foot or leg. They are happening on the surface. I've had a referral back to the neurology department at my local hospital but the waiting list is a year long. I went back to the doctor who has been updated on everything and has looked over previous and recent blood tests, skin biopsy, and other tests. All tests reveal there is no nerve damage. Infact my nerve density in the biopsy showed much better than average nerve health. There are no nutritional deficiencies and I regularly supplement my diet with Vitamin D, B1 and B2, and Magnesium Glycinate. None of these have helped at all. The pain syndrome just outgrows everthing. It has now become investigated as a chronic pain syndrome with severe central sensitization. It takes less and less provocation to produce the same symptoms, which is indicative of a fault in the descending inhibition of pain mechanism and nociplasticity in the amplification of pain signals. As such I'm being referred to a pain specialist and will see what they recommend.
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I did another Google Search and found this on the GE appliance website regarding their GE® RPWFE™ REFRIGERATOR WATER FILTER 3-PACK. Just go down the QA section and type the word gluten in the search.  Here are the results: As mentioned in my last post, if you plan to use a filter it is a good idea to contact the manufacturer.
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am sorry to hear you went through that @YoshiLuckyJackpotWinner888.  That could not have been an easy thing to figure out.  I just used Uncle Google to perform this search:  "Can water filters contain gluten?" Here is the AI overview that was returned: Yes, some water filters can theoretically contain or be processed with gluten. While rare, certain refrigerator or pitcher filters may use wheat starch as a binder for the activated carbon. For individuals with high sensitivity or celiac disease, contacting the manufacturer to confirm if they use wheat or corn starch is recommended.  Potential Risk: Some refrigerator and aftermarket filters may use wheat-based components to bind carbon, potentially causing issues for those with celiac disease or gluten sensitivities. Alternatives: Many water filters, such as those from AquaTru Water, are explicitly manufactured to be free of gluten, corn, and soy. General Safety: Most standard water filters are safe, and the risk of significant gluten contamination is low, but not zero for highly sensitive individuals.  If you are highly sensitive, checking with the specific manufacturer of your filter is the safest course of action. --End Quote
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      Most people are already deficient in minerals.  I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter.  I happen to get over 100% of rda vitamins and minerals.   I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined. I don’t know anyone else that does. The rda is closer to 4700 mg a day. For anyone else that might be deficient, I suppose tap water might be a better option.  I personally can’t stand the taste of most city tap water sources.  I don’t mind mineral water and prefer it when possible. I recently found out we would need to drink 5 liters of San Pellagrino mineral water a day to get enough lithium to satisfy the suggested 1 mg a day. Unfortunately, this and other mineral waters can also have trace amounts of uranium that occur naturally in nature. Uranium is not a good thing to have in your water. I wouldn’t want that or naturally occurring lead in my water.  There is no perfect solution for drinking water.  Smart water distills and then adds back in some electrolytes.  I could evaporate two gallons day of tap water or mineral water and the remaining sodium, potassium, calcium, magnesium, iron, etc… wouldn’t amount to what I already consume on a daily basis. I’m not worried about drinking distilled water. 
    • knitty kitty
      Water filters are a potential problem for Celiac Disease

      By knitty kitty · Posted

      Reverse osmosis water pulls electrolyte minerals out of the body.  If used for cooking, RO water will even pull even more electrolytes out of the food.  If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance.  The symptoms of Electrolyte Imbalance are similar to those that occur with being exposed to gluten.   Also consider that many people with Celiac disease have malabsorption issues and may already be low in electrolytes.  Exposure to RO water may create some health changes more quickly than in healthier individuals.   RO water impacts the body in many ways.  Read this fascinating study.   Long-Term Consumption of Purified Water Altered Amino Acid, Fatty Acid and Energy Metabolism in Livers of Rats https://pmc.ncbi.nlm.nih.gov/articles/PMC11122726/ Drink mineral water.  
×
×
  • 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.