In April 2007, I began to urinate blood. Diagnosis…bladder cancer.
And so began a very bizarre 18 months of my health and my life.
Fast forward to September 2007. After a year of bitching and moaning to Mrs. Dude about constant stomach pain and losing 15 pounds, I finally listened to her and went to see a GI. Diagnosis…celiac disease.
Wait…it gets better.
Fast forward now to September 2008. I’m working in my home office on a Sunday night (yeah…I know…total loser) and all of the sudden I began to feel “not right”. Hard to explain. I had this strange pain down my neck and into my shoulder, which hurt more when I took a deep breath. I went downstairs to tell Mrs. Dude that I don’t feel right, she suggested we go to the emergency room and off we went.
Just kidding. I didn’t listen to her again. I can be such a guy (aka stubborn fool) when it comes to my health.
An hour later or so, we’re lying in bed, and I got a jolt through my entire body. Again, hard to explain. But I jumped out of bed and said “what the hell was that??” So Mrs. Dude and I drove to the emergency room.
Again…just kidding. I told Mrs. Dude I’d sleep it off and see how I feel in the morning. Mrs. Dude spent the entire evening poking me in my back to make sure I was still alive. No joke.
The next morning, I felt better but called my doc just the same. He said he’s sure it’s nothing but I might as well go to the emergency room just the same to play it safe. After two hours of exams, x-rays and prods, the doc finally came in and gave me an official diagnosis.
I had multiple blood clots in both of my lungs. Medical term: pulmonary embolism (PE). This happens when you get a blood clot in your body, usually your leg, and it releases and passes through the blood stream into the lungs.
Here’s a fun fact: Pulmonary embolus is the second leading cause of sudden death, behind coronary artery disease. If the blood clot is large enough, it can block blood from exiting the right side of the heart, thus preventing blood from entering the lungs. If no blood enters the left side of the heart to pump blood throughout the rest of the body, this can result in shock (circulatory collapse) and sudden death.
That moment when I felt a jolt through my body? That’s the exact moment it passed into my lungs and I dodged death. Am I being dramatic enough for you?
Anyway, I was on blood thinners for several years and had to get my blood tested on a regular basis. Never happened again. Knock on wood.
But here’s the question. Why did it happen in the first place? They tested me for everything under the sun that may have caused my blood clots. I had ultrasounds, body scans, you name it, but came up completely empty. I never got an answer.
Well…last night I think I got my answer.
A study was recently completed and the results said that “Patients with celiac disease (CD) might be at an increased risk of developing venous thromboembolism (VTE) due to chronic inflammation and vitamin deficiency.” VTE is what leads to blood clotting, which is what leads to PE.
Sure, the data doesn’t prove it 100% just yet. But honestly, say no more. I’m convinced.
So seriously folks, be aware of the symptoms of a pulmonary embolism. The life you save may be your own.
This is so interesting – I have suffered two blood clots in my left leg. Both before being diagnosed with Celiac. Coincidence – I think not!!
Two years ago I had multiple clots in both lower legs. Multiple blood tests and genetic studies found no cause. Fast fwd to next year I continued Xarelto for blood clots &was also diagnosed with celiac(severe gluten allergy). Possible cause to explore.
Glad you’re ok!!
I’m so sad to hear this. I’m glad you are okay! Two of my three daughters have Celiac Disease. One of them also has Polycystic Kidney Disease and Dysautonomia. So with the 3 diseases, she’s at high risk for: blood clots, heart valve issues and brain aneurysm, high blood pressure, not to mention her cysts bursting and causing excruciating pain. Ugh, this kiddo is 13, how much more can she take?
I had painful large cysts as an adult & periods of “flooding ” when younger. Mirena iud worked wonders, though check with doc how extra hormones would impact a young teen
I just forwarded this info to my boss, because she has had a series of health issues, including PE last year. She suffers from severe migraines, urinary/kidney infections, general malaise, etc. I keep telling her to get tested – she is a huge supporter of me, my GF bakery side business (that often keeps me from doing the work I should be doing for her), and often buys goodies from me for friends. But she is a foodie, husband is a chef, etc. And although the both know how to eat GF safely – and really can have fun changing up their recipes, I honestly don’t think she wants to face it. Maybe this will convince her. I will be looking up the literature as soon as I hit post comment. Thanks Dude.
I also had a bloodclot in my upper thigh when I was in my early twenties. I think back then they called it thrombosis, now they call it DVT.
Anyway it occured after I fell in a parking lot due to a big crack in the pavement that I didn’t see. I had known that I had Celiac but didn’t really understand what that meant for other health problems.
I also suffered from Endometriosis . Which was not understood back then either. So when I developed the clot I was on the pill and that’s what it was attributed to. Knowing what I know now. I could have died!Cause I left the hospital AMA & took aspirin on the advise of a friend who was an intensive care nurse.
Out of curiosity, were you GF at the time of the clot?
I have endo too, I think there is a correlation between endo and celiac.
I have celiac and endo too. I am no longer on birth control pills because of the increased risk of blood clots (of which I think I had one in my early twenties).
Very interesting!! I haven’t been diagnosed with celiac, but I suspect I may have it or at least I am gluten intolerant. Three years ago I developed three DVTs in my left leg that my doctor thought could be the direct result of a foot fracture I suffered two months before the clots showed up. They never migrated out of my leg, but after I was taken off blood thinners six months later, they kept coming back every few months but in smaller, superficial versions. Eventually my doctor ran more tests to see what could be causing the clots to redevelop, and it turns out I have something called Factor V Leiden, which causes abnormal clotting in the blood. So now I am on blood thinners for the rest of my life, but at least I haven’t had any more clots!
I stumbled upon something interesting, however – there appears to be a genetic link between Factor V Leiden and celiac disease! Here is one article – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860115/. My doctor, however, refuses to test me for celiac, saying I am too overweight to have it. With the connection between thyroid disease (I have Hashimoto’s) and celiac, and now Factor V Leiden and celiac, I am even more convinced I have celiac! I was planning on going gluten free in the new year because of my Hashi’s, anyway. 😉
Wow Nancy, you have shared some wonderful info! My advice…go to a new doctor who will test you for celiac before you go gluten free!
Agree with find another doc before going gf. Even reduction in gluten foods before testing can increase chance of false negative biopsy.
Im not skinny, low thyroid & hashi….reproduction specialist that diagnosed my celiac said if test had been for pregnancy i would have tested as having triplets! Common ignorance in medicine that celiac is a wasting disease. I lost over 50 lbs after going whole foods gf. Apparently large celiacs our bodies hold onto toxins (gluten) as fat creating a slow release gut bomb. Removing the causes of holding onto weight by addressing thyroid, hashi & lesser known shogjrens (salt/mineral/hydration imbalance) the weight comes off pretty easy.
Just a side fyi…the bloating associated with accidental glutening can increase waste size 2-4 sizes in a short period. Hang onto some of your larger sized clothes as you go
I’d be curious to know if you have PCOS or endometriosis, and any diabetes? If I may ask. To me those seem to go hand in hand with hashis and celiac.
I thought Sjogren’s was an autoimmune disease of sweat glands and moisture ducts and not reversible? I had some chronic dehydration issues so I was tested for this but apparently was ok. The dryness has improved as a result of celiac and blood sugar treatments.
I don’t have PCOS or endometriosis, but I do have premature ovarian failure, AKA early menopause (I went through menopause at age 30), which I do believe is tied to my hypothyroid/Hashimoto’s.
Curiously enough, I had my A1c tested late last year and it came back at 5.8. Depending on which chart you look at, it’s either prediabetic or a point or two away from being so. My doctor, however, said it was fine. Didn’t mention how close to prediabetic it is.
I think you may need to get a second opinion. If it’s “depending” on which chart you use then that’s far too close for comfort (in my opinion). I have prediabetes, I’ve had it since college, its not fun but it is manageable! With healthy eating and activity you can lower your blood sugar before it ever reaches diabetes.
I’m also one of the “non-wasting” Celiacs lol as in I actually gained/gain weight from gluten rather than lose it. Mostly thanks to the fact I get constipated versus diarrhea when glutened (too much info I know, sorry!). Anyway the idea that you are too overweight to have Celiac disease is bizarre and incorrect. It shows how little your doctor knows about this disease.
I highly recommend getting a second opinion. It’s what worked for me. I developed cysts on my thyroid that led to me having half of it removed. My first endocrinologist told me I was pre-hypothyroid and there was nothing I could do about it. When I mentioned gluten to her she waved it off. The second endo I went to immediately tested me for Celiac disease, and what do you know, I have Celiac disease. Moral of my long winded story, if the doctor you have now will not test you go to another doctor. Someone will test you for this. You are the consumer and the customer, insist on what you need for your health. Good luck! (Also, I apologize if I sound preachy. I get very passionate about this kind of stuff.)
Show these articles to your doctor, or find another doctor! I am a little overweight and was when diagnosed with celiac. http://www.celiac.com/categories/Celiac–Disease–Research..–Associated–Diseases–and–Disorders/Obesity…..–Overweight–____–Celiac–Disease-c-3441
Or, any of these: https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&es_th=1&ie=UTF-8#q=celiac%20and%20overweight&es_th=1
I think this link is broken?
It’s totally possible to be mid or overweight with celiac, particularly with hypothyroidism. I second getting thorough celiac testing before making changes.
You might want to look into some good books on celiac, and seek out a celiac center at a hospital, there are several in the US and they should have more info than a GP.
Three weeks ago – 12/12/15 – I went blind in my left eye. My husband suggested we go to the emergency room.
I quickly jumped into the car, just kidding. The blindness went away within a few minutes. Even though my sight was restored, I decided to call my doctor. He told me to go directly to the emergency room. There they found I had experienced a TIA stroke, or “mini-stroke”. Tests, tests, tests. Nothing much. Now I wonder if my Celiac disease caused this blood clot. I’m passing your information on to my (less than competent) case manager at the hospital.
THANKS!
Hmmm. Something similar happened to me several years ago, probably two or three years pre celiac diagnosis. I woke up one morning and noticed that part of the vision in my left eye had gone blank. If I closed my eyes for a few seconds, the opened them while looking at a light surface (like an empty, all white computer screen in a word processor), my left eye would “see” an afterimage that looked a bit like a small mountain range. This was confined to the lower right quadrant of my field of view. The eye doc said it was probably a small blood clot that had caused the problem. Over the years the mountain range has gotten smaller, with only one peak left. Fortunately the blank area did not include the center of my field of view, so I still have binocular vision for depth perception, etc.
I’d never associated this with the celiac disease, but it certainly sounds plausible.
I had DVT and PE. The battery of tests to find out why, led to my Celiac diagnosis. None of the doctors think there’s a connection.
Glad you’re ok Laura. The medical community is so far behind with celiac still so who knows.
This just keeps getting better and better;(
Thank God, you finally went to get checked out. Be well.
Unreal! I’ve always wondered about the blood clots you had. There are so many symptoms and diseases that seem to be connected to CD. What’s frustrating is that even getting a diagnosis of Celiac and a competent doctor is a real challenge. Most of the time we have to educate ourselves. We have soooo far to go. Thank you for this site and the PubMed and Mayo Clinic links.
I had a superficial vein clot two years after my celiac diagnosis. Doctors were a bit baffled as I had no factors that would pre-dispose me to clots like obesity, smoking or blunt force trauma. No one ever suggested celiac as the cause and I’m actually still not sure it is. In my case I’m fairly certain it was the birth control pill I was on at the time which has been the focus of a class action law suit. Or maybe it was the combination of celiac and the pill?
As for symptoms, I had pain in my leg for a month that I just assumed was from running. Then I got a massage and the pain moved and intensified leading me to go to the doctor. Doctor thought it was a sports injury too and was shocked when it turned out to be a clot.
My goodness I’m glad you made it through! That is terrifying and it’s so good of you to speak out.
My endocrinologist says that untreated celiac makes “platelets stickier” and enlarged. Somehow he measures this although I do not know the exact blood test. He says it normalizes once gluten free.
He uses this test as a measure of whether or not I am successfully avoiding gluten. He says he can tell by this test if a patient is still consuming gluten. My lab results gradually improved and are now normal.
One weird thing I always used to have is splinter hemorrhages, those pinprick dots under nails. Just a few, maybe 1-6 at any given time, but I wonder..
Same thing happened to me in 2006! A couple of months of breathing issue (thought I was just out of shape)…passed out…ambulance ride…multiple clots in both lungs…almost died…clot busters…Coumadin…etc. They never figured it out “officially”, but having GI issues for several months, I suspected gluten intolerance and had started eating gluten-free just that week–too little, too late. I hope someone educates these doctors on this issue soon!
Would you share the study, Gluten Dude, so I can share with my doctor? I’ve had the vision problems people mention and a couple months of breathing issues too. I want to let him know about this. Thanks.
Whoa–scary. Yet another example of why it’s important to get tested for celiac, not just go GF. (Wish I’d done those in the correct order…no interest in doing a gluten challenge.) For those of us who know we can’t handle gluten but didn’t get a diagnosis, is it safer to just assume celiac so we know to watch out for all the other related issues, too?
On 9-21-15 my life once again changed forever. After being diagnosed with Celiac in the spring and going gf i began experiencing tingling and numbness in both my hands (which had happened numerous times before) i began slurring my words at work and couldnt feel the right side of my face. Ambulance ride to hospital…ct scans, mri, 5 day hospital stay conclusion functional neurological disorder…not a stroke. Left with stutter..needed speech therapy…limp when i walk and continued right side weakness and painful limbs. Two neurologist couldn’t figure out what had happened and basically dismissed me until something furthet happens. New wonderful GI who specializes in Celiac has given me hope and answers….tpa (declotter drug) saved my life from stroke which therefore did not leave scar tissue and low and behold celiac can cause major neurological issues!
Woah! Surprized they said it wasn’t a stroke. Celiac can cause neurological problems! Hope you’re healing!
Just before my celiac diagnosis I suffered what’s commonly and erroneously called a mini stroke. One night, while relaxing as I watched a movie, I abruptly lost my ability to speak. It we a
Transient ischemic attack, a blood clot in my brain that luckily dislodged, thus spring me a stroke. He a similar episode 10 years earlier, but none since going gluten free.
I had a scary episode in my early twenties and always attributed it to a gallbladder attack (For some reason I refused to go to the hospital). But when I described it to my GI doctor at the Mayo Clinic, she thinks for sure it was a blood clot passing through my lungs. It felt like a heart attack. I was on birth control at the time, and it is the reason I will never go back on it now. So scary.
Yep…I liken it to a heart attack too. Something I hope to never experience again.
I was about to get on a plane Dec 30 when your article opened itself on my phone (I know, weird.) I already know I have that Factor V Leiden that means I clot (which was diagnosed by a med tech submitting the wrong test during a celiac blood check), but had STILL forgotten my support socks and was blowing it off. When this article spontaneously opened, I freaked, walked over to the shop, bought the socks, put them on, with 2 minutes to spare before boarding. Life saved? Maybe! Should we call you the Gluten Angel this week? Thanks for the timely warning. and for passing on info I would get no where else.
Always happy to help!
I was diagnosed with Deep Vein Thrombosis. To preclude blood clots from getting to the lungs, I had an IVC filter inserted into the vein that takes the blood back to the heart. The idea is that the filter catches the clots. Am also on a blood thinner.
Just came across your site! I’ve had blood clots twice this year. Tons of testing, no answers. 10 months later, I’m still on blood thinners, still no answers and in the meantime, I started a health coach course. One of the speakers mentioned iron deficiency and celiac ( I am iron deficient). I started looking into this and had an upper endoscopy and colonoscopy. The doctor tested me for celiac and I’m waiting on the results. He did say my stomach was inflamed. Then I began to wonder if it could be related to my blood clots. Typed gluten and blood clots in the search engine and here I am! I have hope now. I CAN give up gluten! Thank you!
I just came across your original story and it is enlightening. In a way it ticks me off because once again I will be saving my own life because of my intuition and search, of which some mock me. Ticks me off because I use doctors well but their minds are stuck in the reality they formed from knowledge someone else wrote for them and usually lead me in circles as u experienced. I was diagnosis with bilateral pulmary embolisms in all lobes of my lungs, 02/03/17. The cause is listed as unknown and now the medical folks are running lots of blood tests. I asked the doctor if after these tests, if for many people the cause is still unknown and she said, “oh yes, many.” The answer is right there in front of them in my CT Scan that found the PE. “Chronic Stenios of the celiac artery” and ignored it to focus on the PE. Most likely I will have a hard time convincing the doctor because it will set off a subtle resentment regarding this not beING accepted knowledge of which they have been informed. I will not even be able to discussss with friends because they will say, there goes Joe again going off in his own direction, even though it has giving me resolution in solving severe kidney stones issues, and recently going pass my misdiagnoses to find the PE. I do not understand yet, the correlation between gluten and the celiac artery. I assume u are saying there is one. I admit having wondered if gluten issues are real or just another phenomenon people grab onto to find some meaning to the anxiety of life.
I was diagnosed with CD Nov 2009. For the past few months I’ve been dealing with pain in my lower left abdomen. Finally after 2 sonograms, X-Rays, blood tests and two CT Scans. They found that there’s a blood flow blockage to my colon. I’m having a colonoscopy Friday to look at the health of the colon. Anyhow, I’m sure it’s a blood clot and I’m sure it’s from the CD. Just wondering if anyone else had expected this? Also, trying to find info on why I would get this on a very strict (only way to go) GF diet.
Thank you.
Wow I just came to that same conclusion myself. I had multiple PE also, also without cause. But they shorted me on the warfarin and I only got a 6 month treatment. It was a huge argument when they took me off of it because CAT scans showed the largest infarct was still not healed. And it was still painful, and 12 years later, it’s still painful.
Ouch…sorry to hear.