Jump to content

  • 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

Low Blood Platelets And Celiac

Patti J

By Patti J
in Related Issues & Disorders

Recommended Posts

Patti J Rookie
Patti J
Posted

I was wondering if anyone else out there has been diagnosed with ITP..low blood platelets and has there been a confirmed correlation between Celiac and ITP. I have a doctor who believes there is and I read an article that briefly suggested it on the PDSA newsletter.  

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

Thrombocytosis (too many platelets) is more common in celiac patients (according to the Pub med articles I have read) but thrombocytopenia  is also connected.

 

Many hematological conditions are associated with celiac disease.

 

Take a look at Pub med...many articles on there.  Here are just two.

 

Open Original Shared Link

 

Open Original Shared Link

Patti J Rookie
Patti J
Posted
  • Author

Thrombocytosis (too many platelets) is more common in celiac patients (according to the Pub med articles I have read) but thrombocytopenia  is also connected.

 

Many hematological conditions are associated with celiac disease.

 

Take a look at Pub med...many articles on there.  Here are just two.

 

Open Original Shared Link

 

Open Original Shared Link

 

What great information you provided. You are really on top of this stuff!!! Thanks. 

IrishHeart Veteran
IrishHeart
Posted

What great information you provided. You are really on top of this stuff!!! Thanks. 

 

My dad had severe anemia and a blood disorder that required periodic blood transfusions for 9 years. My best friend has hemochromatosis and another has thromobocytosis. 2 of those 3 were/are celiacs. Isn't that interesting? yeah, I thought so too. ^_^ Many in my family have anemia. (I had B-12, folate and iron deficency--all resolved now off gluten and supplemented)

 

Honestly, unless that had happened, I would never have known anything about blood disorders. But I like to read the science and I am always

fascinated by what celiac does to the body. (well, fascinated may not be the right word....more like astounded?.)

 

A really cool book that discusses how celiac affects all the body organs and systems is

Recognizing Celiac Disease by Cleo J. Libonati, if you feel like reading something like that. 

nvsmom Community Regular
nvsmom
Posted

I was wondering if anyone else out there has been diagnosed with ITP..low blood platelets and has there been a confirmed correlation between Celiac and ITP. I have a doctor who believes there is and I read an article that briefly suggested it on the PDSA newsletter.  

 

I have ITP and celiac disease. I am pretty sure I have had celiac disease since infancy although it was diagnosed in my late 30's.  I developed a pretty severe case of ITP when I was 18.  The doctors were unable to control it with meds and steroids so I had my spleen removed a few months later. Luckily, that seemed to do the trick and my counts are always over 150K rather than my lows of 2K.  LOL

 

I have read in a few places that ITP is linked to celiac disease. I did a quick google search and found some papers pretty easily:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

ITP is rare, but slightly less rare among celiacs... I wish my doctors would have mentioned the link to celiac disease and thyroid problems 20 years agao - it could have saved me some grief.  ; LOL

 

Best wishes.

sweetsailing Apprentice
sweetsailing
Posted

Irishheart is right about the blood disorders being connnected with celiac.  I too had a blood related issue that is connected with celiac disease.  Prior to my celiac diagnosis, I had a blood clot in my ovarian vein.  Very unusual spot to have a blood clot and typically only occurs in post-partum women, post-hysterectomy or in those with a clotting disorder.  I had none of the above.  Ended up going to Mayo clinic for it since it was so rare.  They told me there is only 1 other documented case of someone having this blood clot for no appparent reason and I was number 2.  Took another 1.5 years before I was diagnosed with celiac.  Looking back and looking a the clinical literature, there is some evidence that says this type of blood clot can be a presenting symptom of celiac disease. 

Patti J Rookie
Patti J
Posted
  • Author

Thrombocytosis (too many platelets) is more common in celiac patients (according to the Pub med articles I have read) but thrombocytopenia  is also connected.

 

Many hematological conditions are associated with celiac disease.

 

Take a look at Pub med...many articles on there.  Here are just two.

 

Open Original Shared Link

 

Open Original Shared Link

 

Thank you Irish Heart...is never ceases to amaze me at how much we can learn when we read literature from other countries. They are so far advanced perhaps because they do not have the amount of government inclusion. I have, over the years, had the need to research many medical things. This has always been the case, in my experience. Thanks for these..was not familiar with them..and as I said in previous posts...Celiac/ G sensitivity..is all new to me. Have had ITP for 2 1/2 years.   

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

Celiac.com Sponsor (A8-M):


Patti J Rookie
Patti J
Posted
  • Author

Irishheart is right about the blood disorders being connnected with celiac.  I too had a blood related issue that is connected with celiac disease.  Prior to my celiac diagnosis, I had a blood clot in my ovarian vein.  Very unusual spot to have a blood clot and typically only occurs in post-partum women, post-hysterectomy or in those with a clotting disorder.  I had none of the above.  Ended up going to Mayo clinic for it since it was so rare.  They told me there is only 1 other documented case of someone having this blood clot for no appparent reason and I was number 2.  Took another 1.5 years before I was diagnosed with celiac.  Looking back and looking a the clinical literature, there is some evidence that says this type of blood clot can be a presenting symptom of celiac disease. 

Wow ..you could be in one of the medical journals. :) There is so much info coming out almost on a daily basis, I hate to get irritated with docs not keeping up, I believe, if you want a job..you need to do the job. Keeping in mind also, just because a study is performed, does not make it true/valid. It must be redone over and over..this is why it takes us years.  Wonder if you anyone would be able to get in touch with  #1 and see if that person was Celiac also. would be interesting. Patti

Patti J Rookie
Patti J
Posted
  • Author

I have ITP and celiac disease. I am pretty sure I have had celiac disease since infancy although it was diagnosed in my late 30's.  I developed a pretty severe case of ITP when I was 18.  The doctors were unable to control it with meds and steroids so I had my spleen removed a few months later. Luckily, that seemed to do the trick and my counts are always over 150K rather than my lows of 2K.  LOL

 

I have read in a few places that ITP is linked to celiac disease. I did a quick google search and found some papers pretty easily:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

ITP is rare, but slightly less rare among celiacs... I wish my doctors would have mentioned the link to celiac disease and thyroid problems 20 years agao - it could have saved me some grief.  ; LOL

 

Best wishes.

You have had a time with this. I am glad the spleen thing worked for you. I have been reading that it did not have as high a % of success as they had hoped. Can't remember where I read that..have read so much over the last 2 1/2 years..I am glad you are keeping those numbers up. Thank you for the articles...Shared with my doctor yesterday.  

Patti J Rookie
Patti J
Posted
  • Author

My dad had severe anemia and a blood disorder that required periodic blood transfusions for 9 years. My best friend has hemochromatosis and another has thromobocytosis. 2 of those 3 were/are celiacs. Isn't that interesting? yeah, I thought so too. ^_^ Many in my family have anemia. (I had B-12, folate and iron deficency--all resolved now off gluten and supplemented)

 

Honestly, unless that had happened, I would never have known anything about blood disorders. But I like to read the science and I am always

fascinated by what celiac does to the body. (well, fascinated may not be the right word....more like astounded?.)

 

A really cool book that discusses how celiac affects all the body organs and systems is

Recognizing Celiac Disease by Cleo J. Libonati, if you feel like reading something like that. 

Thank you for the info on the book. I have it on my order list! I, too, have always had an interest, in research, medicine and thinking outside the box of the natural when possible..if the 2 forces would join, we could really get a lot accomplished in the cures. From my childhood background...medicine and sense were taught to me. Thanks again. P

IrishHeart Veteran
IrishHeart
Posted

Thank you for the info on the book. I have it on my order list! I, too, have always had an interest, in research, medicine and thinking outside the box of the natural when possible..if the 2 forces would join, we could really get a lot accomplished in the cures. From my childhood background...medicine and sense were taught to me. Thanks again. P

 

 

You bet, Patti. Whatever I have saved/bookmarked in my arsenal of research....it's yours. GottaSki lisa has a ton of stuff saved too...Take care, IH 

nvsmom Community Regular
nvsmom
Posted

You have had a time with this. I am glad the spleen thing worked for you. I have been reading that it did not have as high a % of success as they had hoped. Can't remember where I read that..have read so much over the last 2 1/2 years..I am glad you are keeping those numbers up. Thank you for the articles...Shared with my doctor yesterday.  

Yeah, splenectomies don't work for everyone. I have read some people have multiple spleens and that keeps killing off the platelets. I assume the splenectomy would not work for those whose ITP is not caused by an autoimmune attack directly on the platelets - for those whose platelet numbers plummet for other reasons.  I was pretty lucky. One of the lucky 65% (or so - can't remember the exact number). I would have been in trouble if it hadn't worked - I probably wouldn't be here actually.

 

That's great that your doctor is looking into it.  I hope you are well soon.

NatureChick Rookie
NatureChick
Posted

I'd also get tested for vitamin deficiencies because they do go hand in hand with malabsorption from celiac, and there are several that will affect the blood. 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    3. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    4. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
    5. Scott Adams
      0

      Häagen-Dazs Chocolate Dark Chocolate Mini Bars Recall Due to Undeclared Wheat and Gluten

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748
    Deb baker
    Newest Member
    Deb baker
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.