Any Others On Here Had Blood Clots Associated With Celiac Disease?

[cyclinglady]

It seems just about anything can be related to celiac disease.  My hemoglobin levels are always just below range due to Thalassemia.  So, you can have more than one type of anemia or blood disorder.  I would not worry if your labs are consistent.  The body has a marvelous way of adapting.  Who knows?  Maybe you were meant to live in the Swiss Alps.    Bet you can ski better than me!  ⛷

[Vickideen]

On 4/2/2010 at 3:08 PM, celiacmom2 said:

Update: Diagnosed with Celiac Sprue...a few weeks ago...so I am now on Warfarin with restricited green diet and can't eat gluten containing products...argh. I guess some have worse problems than this.

 

[Vickideen]

Hello Everyone: I had a traumatic fall in 2013 which brought forth Celiac in 2014 and in 2015 I had a colon resection and my whole life changed. Unlike most I gained weight from a size 4 to a 16. In 2017 I had a stroke with 6 clots in my brain and 1 in my leg. Was discovered I have Factor V. Leiden mutation B (r506q), which is a blood thicking disorder.

Having the traumatic fall caused these autoimmune diseases to surface. The celiac disease is the hardest one to deal with because of socializing with friends and family. I feel I am in the way and that to most gulten is a fad. Depression is ever present..

 

[cyclinglady]

5 minutes ago, Vickideen said:

Hello Everyone: I had a traumatic fall in 2013 which brought forth Celiac in 2014 and in 2015 I had a colon resection and my whole life changed. Unlike most I gained weight from a size 4 to a 16. In 2017 I had a stroke with 6 clots in my brain and 1 in my leg. Was discovered I have Factor V. Leiden mutation B (r506q), which is a blood thicking disorder.

Having the traumatic fall caused these autoimmune diseases to surface. The celiac disease is the hardest one to deal with because of socializing with friends and family. I feel I am in the way and that to most gulten is a fad. Depression is ever present..

 

Welcome Vicki!  

I am glad you found us!  We might not ever get to meet in person, but I think you will find us to be a supportive group.  

You have been through a lot!  Is there a specific question that we can address?  

Socializing can be difficult, but not impossible.  I usually order a drink when I go out.  I always bring some food along with me.  Often, I excuse myself to eat a snack packed in my car.  Other times I bring my own food to parties.  My friends are getting used to my new quirky ways.   Instead of meeting for coffee, I am now suggesting a walk.  Most friends are really enjoying it because being together is the goal.  

[Vickideen]

4 minutes ago, cyclinglady said:

Welcome Vicki!  

I am glad you found us!  We might not ever get to meet in person, but I think you will find us to be a supportive group.  

You have been through a lot!  Is there a specific question that we can address?  

Socializing can be difficult, but not impossible.  I usually order a drink when I go out.  I always bring some food along with me.  Often, I excuse myself to eat a snack packed in my car.  Other times I bring my own food to parties.  My friends are getting used to my new quirky ways.   Instead of meeting for coffee, I am now suggesting a walk.  Most friends are really enjoying it because being together is the goal.  

Thank you for your assistance.

[DebLewellen]

I have had 7 DVTs from age 15-55 and have one right now, it is very discouraging to have this chronic issue, but I don't let it stop me from the work I do.  I've also had some digestive issues over the years and in 2008 went gluten free for a couple of months due to severe intestinal distress, well you know certain foods you eat and grow up with call your name and at that time I was feeling better and I started eating the same old foods again.  So back in Feb. 2018 I had another DVT, after not having one for 24 yrs. it reared it's ugly head again and now in July 2018 the 7th one.  I think we get so used to what we think is normal that we don't always recognize that what we think is normal really isn't normal.  I was diagnosed a couple of years ago with extremely low Vitamin D and Low iron and am anemic to the point that it's not a good situation, so on to the supplements I go, but I'm also on Warfarin and the doctor keeps accusing me of skipping doses, I tell him I'm not and yet at 8mg. can't regulate me for nothing. I'm beginning to think it's a malabsorption issue and that besides the warfarin not absorbing properly neither are the vitamins that I'm so deficient in. I started taking B12 shots and wow I felt so much better and even the muscle aches and pains were reduced because my daily supplements likely were not getting absorbed.   So my son said to me the other day, Mom, do you think there could possibly be some correlation to the DVTs you keep having and your Gluten intolerance.  I said, I have no idea so googled it, WOW, I couldn't believe all the articles and some studies.  So today went shopping and bought a bunch of gluten free products of which I have a love hate relationship with, but at this point my health is critical and I've got to do it. This will be so hard because I buy top quality high end bread and gourmet products that are so darn good and gluten free leaves something to be desired.  I do like some of the gluten free crackers though. I will force myself to get used to it. (suck it up sunshine)  I see my hematologist on Tues. and will address this but I am on to something I'm sure. With this many DVT's over the last 40yrs. I do worry my life will be cut short or I will end up incapacitated and handicapped.  I feel I may be on the road to the right diagnosis, so many previous Genetic tests done to try and find out what my 'problem' is, one doctor said, 'oh you're just a clotter', but offered no options to figure out why. Only by my own investigations and searches have I found some glimmer of hope to discover what the heck is going on.  

[Tobo]

Hi, I had a clot on my lung 3 years ago, no explanation, I've been diagnosed with celiac disease since early 2010 and have been on a strict diet ever since. Celiac has damaged my nervous system down my left side, not sure if that has anything to do with it, just another weird but not so wonderful spin off from having celiac disease.

[trents]

About 10 years ago I developed clots in both lungs which led to the discovery that I have a clotting disorder known as Factor 5 Leiden. It's genetic so not connected with my celiac disease, at least not directly. I have a paternal uncle who has Factor 5 as well and another uncle on that side who was diagnosed with celiac disease. Typically, clots in the lungs originate in the lower leg, which was the case in my experience.

Edited April 26, 2022 by trents

[Scott Adams]

Although these articles are older, they are interesting and discuss lung issues and celiac disease: