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

celiacmom2
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cyclinglady Grand Master
cyclinglady
Posted

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!  ⛷

  • 3 months later...
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Vickideen Newbie
Vickideen
Posted
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 Newbie
Vickideen
Posted

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 Grand Master
cyclinglady
Posted
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 Newbie
Vickideen
Posted
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.

  • 4 months later...
DebLewellen Newbie
DebLewellen
Posted

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.  

  • 3 years later...
Tobo Newbie
Tobo
Posted

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.

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trents Grand Master
trents
Posted
(edited)

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 by trents
Scott Adams Grand Master
Scott Adams
Posted

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

 

 

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    • trents
      Virus, celiac disease or both?

      By trents · Posted

      Early guidelines from years ago concerning D3 supplementation was unduly conservative. There was fear of toxicity in over-supplementing because D3 is a fat soluble vitamin and not a water soluble vitamin. More recent studies have shown we can supplement safely at considerably higher levels for extended periods. But yes, 50,000 IU would not be safe over an extended period of time. That much is a kick start dose.
    • Shining My Light
      Virus, celiac disease or both?

      By Shining My Light · Posted

      @knitty kitty I had an injury from assuming I could do work outs at the gym like I did in my 20s 😏. it didn’t work in my favor. My orthopedic doctor told me to go on 50,000IU /per week for 4-6 weeks for a boost and then do a maintenance. I took 2 and got nervous to take any more, it seemed so high to me. About 7  months later I had a blood test revealing that my Vit D levels are lower than normal. I started taking vit D supplements-4000IU./a day now. (the natural garden of life ones) I had a friend whose levels were low and she was having a mental breakdown.  My B12 levels were right in the middle of the range.     
    • knitty kitty
      Confused About Results

      By knitty kitty · Posted

      @Ginger38, Have you been checked for nutritional deficiencies, besides iron?   Celiac disease causes inflammation which results in nutritional deficiencies.   Iron needs Thiamine and the other B vitamins to make new red blood cells.   Iodine and thiamine deficiencies affect the thyroid.  The thyroid is one organ that uses lots of thiamine.   Vitamin D deficiency leads to hormonal problems, including menstrual problems.  Vitamin D needs Thiamine to activate it.   Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine.  Consumption of any  foods high in carbohydrates can cause a drop in thiamine.  This is called high calorie malnutrition. Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies.  There's eight B vitamins that all work together in concert.  They are water soluble.  They can be hard to absorb by inflamed intestines.  Vitamin A can improve acne. I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C.  Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares. Replenishing your vitamin and mineral stores will help heal and feel better faster.  Talk to your nutritionist and doctor about supplementing. Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines. @Alibu and I were just discussing diagnosis without obvious villus damage here.   This study followed people who showed no or little villi damage at first....they accrued more damage over time. Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/ There's a move to be less reliant on endoscopy for diagnosis. Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/
    • Ginger38
      Confused About Results

      By Ginger38 · Posted

      Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise.  I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 
    • knitty kitty
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By knitty kitty · Posted

      @Alibu, Start with this study... High-dose thiamine supplementation improves glucose tolerance in hyperglycemic individuals: a randomized, double-blind cross-over trial https://pubmed.ncbi.nlm.nih.gov/23715873/ "Conclusion/interpretation: Supplementation with high-dose thiamine may prevent deterioration in fasting glucose and insulin, and improve glucose tolerance in patients with hyperglycemia. High-dose thiamine supplementation may prevent or slow the progression of hyperglycemia toward diabetes mellitus in individuals with impaired glucose regulation." They used 100 mg of thiamine three times a day.  They don't say which kind of thiamine was used.  Benfotiamine is my recommendation because it has been shown to promote intestinal health and helps with leaky gut and SIBO.  Thiamine forms including Benfotiamine and TTFD are safe and nontoxic even in higher doses.   The old "gold standard" diagnosis is changing.  It must be confusing for doctors as well.  I went through all this myself, so I understand the frustration of the vagueness, but set your course and watch as your health improves. Keep us posted on your progress!   P.S. here's another link.... https://pubmed.ncbi.nlm.nih.gov/39642136/
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