Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Link Between Celiac And Dvt?


Katja

Recommended Posts

Katja Rookie

I was doing some research on other auto immune disorders when I came accross Hughes syndrome (also Antiphospholipid syndrome) which leads to Thrombosis and is related to Protein C. Pardon my ignorance but I am not a doctor by any means, so this might all be a little convoluted.

I had severe DVT at age 20 after surgery. What was unusual at the time was that I had about 7 blood clots in both legs and only had surgery in my left leg. I was also still fairly young and at the time had only been in the hospital for 4 days.

Anyhoo, they did tests a few years ago and it turns out I have a Protein C mutation which is linked to Thrombosis.

Has anybody else had these problems and if so what kind of treatment are you following for this? Could this be linked to another autoimmune disease?

Katja


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



Celiac.com Sponsor (A8-M):



Esther Sparhawk Contributor

This may or may not be helpful information for you, but here goes. I had a blood clot in my leg during my pregnancy with Annie, and Annie is a celiac. Due to my genetic link to her and my own lactose intolerance, I've recently taken a blood test to see if I test positive for celiac disease, but I've never been tested for the other diseases you've mentioned. I won't find out about my bloodwork (celiac or not) until later.

I was an older mother with a tendancy toward high blood pressure, so they (doctors) weren't surprised about my blood clot during pregnancy. Maybe I should be concerned, though?

Mechelle

Bootin'TheGluten Newbie

I actually have a clotting disorder called Factor V Leiden Mutation. I learned it while I was pregnant with my first son and took heparin shots throughout to prevent clotting while pregnant or in delivery. During my second pregnancy, my doctor had read up more on it, and decided to hold of on the heparin because there are risks with it as well. At nine weeks along, I got a clot in my right calf and then was put on heparin.

I wear a medical bracelet while taking heparin and it also says protein C resistant, hypercoaguable state.

I don't know what all that means, but wouldn't it be strange if it was related? My dad has it and my doctor told me that it is a genetic disease. My sister also has it and is gluten intolerant also. We can't get our dad to go get tested, even though he claims he is lactose intolerant (a telling sign of gluten problems).

Tara

  • 2 months later...
bpritt Newbie

I had a DVT in the inferior vena cava at age 29 with no etiology - no other medical conditions, no hospitalization, no accident, no sedentary life. Believe me, I was tested for everything, including a screen of genetic factors. Fifteen years later - last year - I was diagnosed with celiac disease. Is there a connection? It certainly seems possible, since nothing else explains my DVT. But I haven't seen any research linking the two. Has anyone else?

georgie Enthusiast

That's strange. I had a blood clot after minor knee surgery and was found to have FVL which is a genetic condition which leads to blood clots. I am also Protein C. I have just found out that I am GI and probably Celiac. I take Nattokinase to prevent further blood clots. Seems to work as I had a minor PE after I stopped taking Nattokinase once. Once I started taking it - my 4 month PE disappeared except for minor scarring.

I have also noticed that since taking B12 shots that I need less Nattokinase. I used to take 4 a day to prevent Post Thrombatic Pain. Now I only need 2 a day.

  • 4 years later...
daveat168 Newbie

I guess I have just become qualified to add my thoughts on this point, as it applies to me.

Over the past several years, I have been accustomed to taking a gently country run with my dog, about 5 miles, (8km) a day, if the weather is fair. My circulation has been healthy, and blood pressure, if anything, on the low side.

Yet I got a DVT, and it was a whopper! It put me out of action for over 3 months before I was allowed to take more than very gentle exercise again.

On the background, I have always had a delicate digestive system, and was very susceptible to the Aztek 2step!

Now my IBS is strongly suspected of being Celiac, and the biopsy scan report should arrive in the next several days, and I too am suspicious that there may be a link between the DVT and the Celiac condition.

There is of course one obvious link: the digestive delicacy caused by the undiagnosed condition, which can cause the 2step, will of course result in a tendency to dehydration. That is how Cholera kills!

Dehydration can make DVT more probable, indeed, I was commanded to drink water 'til it overflowed, a bit awkward, as the IBS condition makes it difficult to separate the two functions in the bathroom.

Whether there is a deeper underlying cross coupling of the conditions is another question.

All I know now is that since going gluten free, separate control is much improved.

We'll have to see how it goes.

ps I am 67, and the dog is nearly 15!

BFN

Dave.

ravenwoodglass Mentor

I guess I have just become qualified to add my thoughts on this point, as it applies to me.

Over the past several years, I have been accustomed to taking a gently country run with my dog, about 5 miles, (8km) a day, if the weather is fair. My circulation has been healthy, and blood pressure, if anything, on the low side.

Yet I got a DVT, and it was a whopper! It put me out of action for over 3 months before I was allowed to take more than very gentle exercise again.

On the background, I have always had a delicate digestive system, and was very susceptible to the Aztek 2step!

Now my IBS is strongly suspected of being Celiac, and the biopsy scan report should arrive in the next several days, and I too am suspicious that there may be a link between the DVT and the Celiac condition.

There is of course one obvious link: the digestive delicacy caused by the undiagnosed condition, which can cause the 2step, will of course result in a tendency to dehydration. That is how Cholera kills!

Dehydration can make DVT more probable, indeed, I was commanded to drink water 'til it overflowed, a bit awkward, as the IBS condition makes it difficult to separate the two functions in the bathroom.

Whether there is a deeper underlying cross coupling of the conditions is another question.

All I know now is that since going gluten free, separate control is much improved.

We'll have to see how it goes.

ps I am 67, and the dog is nearly 15!

BFN

Dave.

Hi welcome to the board. Just a quick note, if your symptoms are resolving on the diet stick with it no matter what the test results are. Hope your feeling great soon.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,814
    • Most Online (within 30 mins)
      7,748

    lbksunyoga
    Newest Member
    lbksunyoga
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...