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

[celiacmom2]

Hi,

I am a 36 yr old mother of 2 and recently had a blood clot in my lung...I had pain that radiated to my back so I went in to the ER...after different xrays they dx with pulmonary embolism and pnuemonia even though I didn't even have the typical symptoms of pneumonia....I was very scared because I never had a family history of PE's or blood clots just some have had hemophilia, pernicious anemia. Any way while in hospital the doc asked me how long have you had iron deficiency anemia? And I said "what???" I had no idea...

Next few days after release my docter had came back with low iron at 19, low b12 at the low end of normal, and barely any vitamin D at 6 in my system...I was not a stable person after that...I was wondering what was going on.

Well anyway after being on prilosec because my doc thought I was bleeding in my stomach which my GI doc confirmed I wasn't and the rest of the large intestine was in perfect health...my iron anemia is still the same except the absorption went down another percent. To top it off I was told my the nurse that called me that "It looks like your positive for Celiac from biopsy" but the doc has to diagnose me...he already gave a blood test but noone will give me my number results...so I am very frustrated they want me to wait till I see the doc again at the new appointment so he can diagnose me correctly and tell my small bowel pill camera results.... Any way my question is "Is there anyone on here who has had blood clotting problem caused from celiac disease or suspicion of the connection?"

After doing my investigating with questions to docs this is the only connection I could find...I can't get tested for Vitamin K deficiency or Proteins C and S until I am off Warfarin in a few months.

The only problem I have had is burping, constipation on and off, and some Gerd probs a few years back so the possible celiac disease suprised me....then I remembered I was told when I was younger that my grandmother had a wheat allergy...which I know now is celiac disease. Sorry so long of post...new here.

[celiacmom2]

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.

[Bobbijo6681]

You came to the right place to VENT!! You are one of the lucky ones with a dx, as was I. I am unsure of the blood clot connection, I have never had any so not sure.

Welcome to the community!!

[celiac-cindy75]

I had DVT in both legs which was found 'accidently'. I was on Coumadin for 18 months. I have had every test to figure out why I got DVT and they r stumped. I am sure I mentioned that i had Celiac and they tested me and it was negative. I have had D-deficiency for last year and anemia. I am thinking this is all related. I am seeing a new GI dr on Wed and I plan to tell him my story and I hope he does an endoscopy and finds out for sure about Celiac - DVT connection! Thank you for sharing your story!

[ElseB]

I had a blood clot in my leg last November, but it was in the superficial vein, not the deep vein, so not as serious as DVT. I have no idea if it was related to Celiac or not (I was diagnosed 3 years ago and am strict about the gluten-free diet). But no one could figure out why I had the clot - the spontaneous clot is usually due to blunt force trauma which I didn't have. Though I did sprain my ankle a few days before the pain started which may have been the trigger. My problem was that the standard treatment for a superficial clot is daily aspirin, but my mom and sister are allergic to aspirin. So I've never taken an asipirin in my life and wasn't about to try it out in case I was allergic as well. Especially because this was all 4 days before my best friend's wedding and I was the maid of honour! So long story short is that I've had a clot, but don't know if its related to Celiac.

[Monael]

This post caught my eye. Here is my situation. I have not been diagnosed with celiac disease but after having a whole lot of bowel issues (dr said IBS) and changing my diet to lose weight I really have come to believe that I either have celiac disease or am gluten intolerant. I have been gluten free for over a week to test if it makes me feel better and if so I will stay on it regardless of whether I decide to ever get tested.

What caught my eye with your post is that I did have a blood clot about 6 months ago and have been on warfarin ever since. Now the doctor tells me that it was a complication of my surgery so it might not at all be related. I also have had iron deficiency anemia my whole life but my grandmother always told me it was because I had been malnourished when I was very young (long story). Iron would help, I would stop taking it because of constipation, and back it would come.

Anyways, for what it is worth, I thought I would chime in. I am pretty new to all this but like to contribute where I can.

[mtdewpeg]

I was told at the ER about 11/2 years ago that i had a blood clot somewhere in my body after a special blood test result came back. they did a ct scan of my chest and it wasn't there. i was discharged. This was way before being diagnosed with celiac. I had left knee replacement in aug of 2011. A couple weeks later I was so sick I went to the ER.They found a small blood clot in my lung. They said it came from the surgery, but I DO NOT think so. I have been on warafin ever since. They can't get my tpinr ? in the theraputic level. my dr keeps upping my dose. he keeps asking if I am skipping my med? I AM NOT !!!! I have had absorption problems with pills for several years and now I realize it is from the celiac. I was just diagnosed about 3 weeks ago. It scares me to death that I will get another blood clot since I am not absorbing well.

I deffinately think blood clots are related to celiac.

[mtdewpeg]

I had my blood drawn today to to if my blood is thin enough. as mentioned above the warafin doesn't seem to be absorbing. I got a call from my dR. office this afternoon. they wanted to know if I am having any symptoms of bleeding? I said no and asked why. she said my blood is too thin now. my count went from 1.5 to 5.8 in two weeks. in over 4 months we couldn't hardly get the count to go up. now after being gluten free for only 1 week it really thinned out. i have to stay off of the warafin and get it rechecked friday morning.the dr will let me know friday afternoon what mg of warafin i need to be on.i deffinately think this disorder is related to celiac.

[Glutinator Girl]

I had my blood drawn today to to if my blood is thin enough. as mentioned above the warafin doesn't seem to be absorbing. I got a call from my dR. office this afternoon. they wanted to know if I am having any symptoms of bleeding? I said no and asked why. she said my blood is too thin now. my count went from 1.5 to 5.8 in two weeks. in over 4 months we couldn't hardly get the count to go up. now after being gluten free for only 1 week it really thinned out. i have to stay off of the warafin and get it rechecked friday morning.the dr will let me know friday afternoon what mg of warafin i need to be on.i deffinately think this disorder is related to celiac.

How did you go with check up with the Dr?

This is all very interesting, I have never thought about clots and celiac but I am now! I have Antithrombin Deficency, which is an increase risk of clots, I cant take asprin and I chose not to take the other thinning meds as being on them long term causes artery hardening, so I try to keep my blood thin naturally, I will certainly be paying a much closer attention from now on.

[Metoo]

I have a seperate genetic clotting disorder prothombin 20210a. I luckily have never had a clot. I was diagnosed after repeated miscarriages.

I have not been officially diagnosed with celiac.

[Mountain Mom]

I am a 38 year old mom who was diagnosed with multiple bilateral pulmonary embolisms from DVT late last October. I have had a very hard time getting my Warfarin dosage regulated because of either very low or very high INR's. Just recently they started to be a little more consistent, almost 12 weeks later. For various reasons/symtons; I have lately also become concerned that my diagnosed "wheat allergy" had turned into celiac's disease and any possible relationship between the clotting and the disease. Like many of you, my team of doctors have been unable to diagnose why I had the clotting as well and why I have been so hard to regulate. I found this forum on Google and joined because I was interested in other people's similar experiences, thoughts and feedback from their doctors. Thank you.

[rarmama]

I haven't been diagnosed yet, but I am quite sure I have celiac. And about10 years ago during my first pregnancy, I hada dvt in my left leg/groin area, and was hospitalized for Weeks. They did tests, but could never figure out what caused it, and I never thought of celiac. It want until I started researching and on a whim searched "dvt and celiac"and found out they can be related. I was on heparin injections through all three of my pregnancies to avoid another clot, but when i'm not pregnant, I still worry about it happening again, since they never did find a cause.

[NanS]

I am a 55 year old female and was diagnosed with Celiac Disease in 2005. I had a Pulmonary Embolism in 2008 and a DVT last October. They cannot figure out why I'm clotting. I'm normal weight, never smoked and I'm very active and fit. I am very disciplined with my gluten free diet and my last two Endoscopies have shown improvement in my small intestine. My hemotologist has been very dismissive about a connection between Celiac and clotting. I'm curious to see if anyone knows of a study going on or research about this topic...

[mtdewpeg]

After my inr went to 5.8 my GP took me off of the warafarin for 3 days.My blood was retested and it was all the way down to 1.5. Thick again. My GP put me on 10mg warafarin. I get it rechecked this thursday. My Dr. had sent me to a blood dr., but all he seems to care about is the iron problem. after the 3 ferritin infusions it was much better. he said to come back in 3 months. I hate it when doctors don't want to listen to everything we have to say. I live 24x7 worrying about getting another clot. Next time could be alot worst. having been diagnosed celiac on top of this is pretty much more than i can handle. My husband has ALS (Lou Gehriggs disease) and i don't know how much longer i will have him. sorry about whining like this, but how much can a person take?

[mtdewpeg]

After my inr went to 5.8 my GP took me off of the warafarin for 3 days.My blood was retested and it was all the way down to 1.5. Thick again. My GP put me on 10mg warafarin. I get it rechecked this thursday. My Dr. had sent me to a blood dr., but all he seems to care about is the iron problem. after the 3 ferritin infusions it was much better. he said to come back in 3 months. I hate it when doctors don't want to listen to everything we have to say. I live 24x7 worrying about getting another clot. Next time could be alot worst. having been diagnosed celiac on top of this is pretty much more than i can handle. My husband has ALS (Lou Gehriggs disease) and i don't know how much longer i will have him. sorry about whining like this, but how much can a person take?

[GlutenDude]

Celiac diagnosis in Fall of 2007. Massive pulmonary embolism in fall of 2008. The ironic thing is that I just asked a similar question on my blog today about other diseases of celiacs and a few people came back with blood clots. We have a lot to learn about celiac still.

[Roda]

I was reading up on a condition that a patient of mine tonight had and I thought it might be worth mentioning.

antipospholipid antibody syndrome

From what I read it is autoimmune and can be found with other autoimmune conditions/diseases and can cause blood clots.

Here are a few links if you google it you can find a whole lot more on the subject:

http://www.mayoclinic.com/health/antiphospholipid-syndrome/DS00921

http://www.medicinenet.com/antiphospholipid_syndrome/article.htm

http://www.practicalgastro.com/pdf/October09/BastArticle.pdf

(page 3 talks about antiphospholipid antibody syndrome)

http://www.ncbi.nlm.nih.gov/pubmed/18366270

[cavernio]

During my blood test for celiac disease, the nurse asked me if I was on any blood thinners. I'm assuming my blood was thin, not thick. After she asked I looked over and it seemed to look kinda watery, but it had also separated a lot. Wouldn't it make sense if you're anemic (or close to it), like many celiacs become while still eating gluten, that the blood would be thinner?

[Golden Girl]

Celiac diagnosis in Fall of 2007. Massive pulmonary embolism in fall of 2008. The ironic thing is that I just asked a similar question on my blog today about other diseases of celiacs and a few people came back with blood clots. We have a lot to learn about celiac still.

I've had 3 mini strokes before I was diagnosed with Celiac disease and my Neurologist said it was caused from Celiac disease - I was also anemic. I am now taking low dose aspirin. They also found I have a hole in my heart.

[kristina65]

I was diagnose back in 2007 with DVT and that was before I found out that I have Celiac 2 years later by biopsy. I was so sick and my colon got messed up so ended up have a colon resection in 2012. Felt better but have problems with muscles related as even i have been taking all the vitamins that is required from having celiac bec you will end up deficiency in vitamins that we can't absorb but what I am trying to say is does anyone have problems with inflammation and how to prevent it as my whole body hurts no matter what I do or take even on a strict diet nothing seem to improve.. Anyone experience inflammation and can't take anti-inflammation meds.. Need some help here to find the right dr that understand celiac with warfarin!!

[sweetsailing]

I had a very unusual blot clot in my right ovarian vein that was likely associated with celiac disease.  First, it is very rare to get a blood clot in this location and those that do have either recently delivered a baby, or had a recent hysterectomy.  I had neither.  I was tested for every imagineable clotting disorder there is and nothing was found.  There was literally no reason for me to have a clot, let alone in this location. 

 

http://medind.nic.in/ica/t08/i1/icat08i1p38.pdf

 

There are a number of clinical references that cite an association of blood clots with celiac disease and in some cases, can be a presenting symptom before celiac is officially diagnosed.  In those who do form clots and have celiac, it is more common that clots are in the abdominal area (ovarian vein, splenic vein, hepatic and portal veins (liver vessels))

[Donna73]

Interesting post.  I was diagnosed with a bilateral PE -- numerous clots in both lungs, and several in my leg.  This was all pre-celiac diagnosis.  I starting have a lot of my celiac symptoms when I was in Coumadin, and they assumed i was having a a reacion to the medication and i was taken off of it early.  No genetic predispoition to clots at all.  But, i was on the pill

I put on a ridiculous amount of weight without a known cause , horrible skin issues, hair just all broke off, fatigue, etc.  I know believe this was all celiac.  4 years later, I was diagnosed with celiac.  

Just curous if the 2 are connected.  I tested negative for any genetic predisposition associated with clots.  

[jada82]

I had a blood clot 4 years ago. Went in for testing as to why I got a blood clot. I have genetic blood disorder factor v leiden.  One year ago I was also diagnosed with celiac disease.  I have no idea if they are linked but I've read about alot of people that have experienced similar things with both diagnoses. Just thought I'd share. 

[judgejolliffe]

I know this is an old thread but I thought I would add my recent experiences.  

I am diagnosed coeliac (sorry UK spelling!) I am a 42 year old endurance athlete.  I would consider myself very fit and I have a very low resting heart rate.  I am 5ft10" and 10.7 stone.  I have never smoked, I drink alcohol very rarely, I have never taken any drugs other than those given by my doctor.   

In April 2017 I had to attend my local accident and emergency department with a very painful swollen leg (no apparent reason) I was seen by a doctor who then took my blood thinking it could be a DVT but considering my stats he thought it VERY unlikely.  My D-Dimer results came back high at 1280.  I was placed on blood thinning drugs and two weeks later all was fine.

November 2017 similar scenario, D-Dimer blood result of 490 but this time no blood thinning drugs as my new doctor thinks it's just a phlebitis.  The clot started just under my knee then mysteriously overnight the pain went away two days later my ankle swelled up (HUGE) for about a week then moved to my ankle near the ball joint and now a week later it is heading back up my calf and is staying there for a while.  I have a huge lump in my leg and it's slowly making its way north and making my whole leg feel funny especially my upper thigh (similar sensation to muscle fatigue but really sore and annoying) but I am now getting occasional groin pain   Dr insists it's Phlebitis?! 

I'm finding more and more links of healthy Coeliacs getting DVT/clots and I am wondering if anyone else has any updates.

[cristiana]

Hi there.

This caught my eye as I got phlebitis which wouldn't shift for month when I was in my late teens.   My sensible GP at the time said I just had blood that clotted easily and to never take the contraceptive pill.

Fastforward to my diagnosis at 45 (I'm now 50)  the docs discover that even while my blood iron has been low, my haemoglobin is often high normal (which is 15.5 in our local lab, I think).  A doctor whispered to a trainee doctor in the room once, "We need to keep an eye on this" - not words a professional hypochondriac wants to here! -  but it actually has never budged.  

He did tell me it might become a problem as I get older.

Not sure if there is a coeliac connection?