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

Elevated Platelets

bklyn

By bklyn
in Related Issues & Disorders

Recommended Posts

bklyn Enthusiast
bklyn
Posted

Saw my hematologist yesterday and once again my platelets are creeping up. He mentioned that it could be related to Celiac Disease, but not if I'm following the diet (which I am). I have to return in a month to retest, but he also said it could be "a bone marrow disorder) Scary!.

Anyone out there had this issue? When I googled this "inflammation" is mentioned. Can I have "inflammation"if I'm following the diet?

Thanks for any help.

Kathy C.

  • 1 month later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Kurban Newbie
Kurban
Posted
Saw my hematologist yesterday and once again my platelets are creeping up. He mentioned that it could be related to Celiac Disease, but not if I'm following the diet (which I am). I have to return in a month to retest, but he also said it could be "a bone marrow disorder) Scary!.

Anyone out there had this issue? When I googled this "inflammation" is mentioned. Can I have "inflammation"if I'm following the diet?

Thanks for any help.

Kathy C.

Actually people with autoimmune disorders tend to have low platelets due to the destruction of the platelets by the immune system. That is what I read. I myself have low platelets even though I am on a gluten free diet. The link with bone marrow disorder comes up if there is an abnormal over production of platelets as these are produced by the bone marrow cells ( Megakaryocytes).

Inflammation can happen when you are on a gluten-free diet only if you have another autoimmune disorder such as lupus or rheumatoid arthritis.

Disclaimer: These are humble opinions as I am not a medical professional.

  • 2 weeks later...
jackie y. Newbie
jackie y.
Posted

I, too have elevated platelet counts. The highest has been 526,000. I have had a low grade fever between 99-100.3 degrees since last Dec. every day. One hematologist said I have essential thrombosis cythemia (bone marrow disorder). In the meantime, I also found out I have Hashimotos thyroiditis and am in the process of getting that taken care of. Have been feeling horrible and so I went to a naturopath who did a blood test and found I am allergic to gluten. I just had an endo and colonoscopy. The small entestine biopsy turned out normal, but the Dr said the blood test was more specific to celiac and to start the diet. I am going shopping now to buy food for this new diet- YIKES! It's scarry! I am hoping the platelet count and fever are related to celiac rather than bone marrow disorder. I guess time will tell. The naturopath says there is a chance it's connected. I really want to know if anyone out there has the same fever and elevated platelet count issues, with or without celiac. Please help!

angel-jd1 Community Regular
angel-jd1
Posted
I, too have elevated platelet counts. The highest has been 526,000. I have had a low grade fever between 99-100.3 degrees since last Dec. every day. One hematologist said I have essential thrombosis cythemia (bone marrow disorder). In the meantime, I also found out I have Hashimotos thyroiditis and am in the process of getting that taken care of. Have been feeling horrible and so I went to a naturopath who did a blood test and found I am allergic to gluten. I just had an endo and colonoscopy. The small entestine biopsy turned out normal, but the Dr said the blood test was more specific to celiac and to start the diet. I am going shopping now to buy food for this new diet- YIKES! It's scarry! I am hoping the platelet count and fever are related to celiac rather than bone marrow disorder. I guess time will tell. The naturopath says there is a chance it's connected. I really want to know if anyone out there has the same fever and elevated platelet count issues, with or without celiac. Please help!

I also have a high platelet count and run a low grade fever. My white count is also elevated. I've been "sick" for several months now. My big complaint is pain in my abdominal area. I recently had a visit to a GI and he wants me to get very sick again and he will run another cbc and CT Scan.........GREAT!! So I am waiting until I get super sick again so I can get more tests run.

I feel your pain in having trouble figuring out all the pieces to the puzzle. I am VERY strict with my gluten-free diet and so I don't feel it has anything to do with my celiac. I don't know what is wrong though....the high platelets are kinda worrysome. I've been told they can mean many things, including the inflamation such as with RA (however I don't think that is my own personal trouble).

-Jessica :rolleyes:

jackie y. Newbie
jackie y.
Posted

What is your platelet count and white count? Have they done a CT scan on your liver or spleen yet? Exactly where on your abdomen are you having pain? Have tehy done a complete blood work up yet? Did they do any other tests on you? How high is your fever and how often do you have it? How long has your platelet and white counts been up? How long have you known you have celiac and been on the diet? Have you had a TSH and TPO (thyroid peroxidase) test done? Just want to know these answers before I go on to tell you what I know so far. What kind of a dr. are yo going to? (specialist, hematologist?) Maybe I can direct you as far as more testing and what they have told me. I did even go to the Mayo Clinic in Minnesota. What are some of your other symptoms? Did you have the fever and elevated platelet count before starting the gluten-free diet?

angel-jd1 Community Regular
angel-jd1
Posted
What is your platelet count and white count? Have they done a CT scan on your liver or spleen yet? Exactly where on your abdomen are you having pain? Have tehy done a complete blood work up yet? Did they do any other tests on you? How high is your fever and how often do you have it? How long has your platelet and white counts been up? How long have you known you have celiac and been on the diet? Have you had a TSH and TPO (thyroid peroxidase) test done? Just want to know these answers before I go on to tell you what I know so far. What kind of a dr. are yo going to? (specialist, hematologist?) Maybe I can direct you as far as more testing and what they have told me. I did even go to the Mayo Clinic in Minnesota. What are some of your other symptoms? Did you have the fever and elevated platelet count before starting the gluten-free diet?

As my previous post already stated. I am waiting on a CT, I am going to a GI (gastro specialist), I've had the CBC (complete blood count), I've been gluten free since 12-31-2002. Fever is generally low grade.

As for the other questions. I have not had any thyroid workups done recently. My liver counts were not out of normal range and they were before my diagnosis of celiac. I can't give you exact numbers as far as white count and platelet count as my lab papers are not here with me. Pain is on the right side of my abdomen.

-Jessica :rolleyes:

Lillian Newbie
Lillian
Posted

Hi Kathy, I was diagonesed being a Celiac in November of 2005. With very strict diet- or should I say new way of eating- I have gotten better and I'm absorbing nutrients so well to the point where I now have to exercise and watch what I eat because I had put on a lot of weight (after having lost about 25 pounds in a period of 4 months.) As of April, I am gluten free, need to continue on this diet for the rest of my life, have high platelets just like you- actually, in the 400,000 range. They did come down a little bit. I was told not to worry, that it will take time to bring down that number while I am gluten free. Also, all the other numbers were good. About the bone marrow thing, there are a million complications that you could have being a celiac, but hopefully not if you are on a strict gluten free way of life. Remember, possible complications, not necessarily probable. You can control a lot of this. About the inflammation, I too had that because I was taking Advil for headaches. The Advil caused me to have gastritis (inflammation of the large intestine, as shown during my last endo, which also showed I was gluten free and getting healthy.) I can only take Tylenol- or I should. So, yes, you can still have inflammation of other parts of your intestine even if your small intestine is healthy. I hope this helps. And don't get discouraged. There are great GI Specialists that can help and tell you exactly what you need to do to continue living a normal life. Good luck and be positive! Lillian

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

Celiac.com Sponsor (A8-M):


mamabear Explorer
mamabear
Posted
Saw my hematologist yesterday and once again my platelets are creeping up. He mentioned that it could be related to Celiac Disease, but not if I'm following the diet (which I am). I have to return in a month to retest, but he also said it could be "a bone marrow disorder) Scary!.

Anyone out there had this issue? When I googled this "inflammation" is mentioned. Can I have "inflammation"if I'm following the diet?

Thanks for any help.

Kathy C.

Open Original Shared Link

Kathy,

Here is a link about various blood abnormalities associated with celiac disease. It does not make it clear (from the abstract) whether 100% dietary compliance makes it better one way or the other.

I'll check for other articles and post if I find some good ones.

My platelets were elevated for several years and now are back in a normal range.....my series of ONE.

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. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated...
    2. MicG
      - MicG posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Test interpretations

      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    3. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      how long does it take for the genetic blood test for celiac to come back?

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood...
    4. DebD5
      - DebD5 commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      Interestingly enough, while I hear you. I completely disagree. Gluten has not been 100% removed. There’s still trace amounts under the regulated amount per millions allowed. I gave only figured out in the last year, while reading chats on this site, of other celiacs still having issues and how they figured it out. If enough companies allow slight amounts o...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Spring 2026 Issue
      3

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

      I understand why that feels frustrating, because the labeling can definitely seem confusing. In the case of products like King Arthur’s gluten-free bread flour that contain gluten-free wheat starch, the wheat starch has been specially processed to remove the gluten proteins that trigger celiac disease. Because it originates from wheat, U.S. labeling laws s...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,653
    • Most Online (within 30 mins)
      7,748
    daweesa
    Newest Member
    daweesa
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test interpretations

      By MicG · Posted

      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
      how long does it take for the genetic blood test for celiac to come back?

      By catnapt · Posted

      how long does it take for the genetic blood test for celiac to come back? I saw the GI today, she was great. She says I def have an issue with gluten and that my symptoms align more with celiac disease than NCGS, so she's doing the genetic testing, Ordered a test for SIBO but said that's just to cover all bases, she doesn't think I have that. If the blood work comes back negative for the genes, then I will cancel the endoscopy. If positive, I will try the 2 week gluten challenge and get the endoscopy done. If I can't manage the gluten challenge (I had HORRIBLE symptoms last time and quit after 12 days) then we'll just assume it's celiac disease and go from there. She says she does a full nutrient panel on all her pts every year, that was nice to hear.I'm on so many supplements it would be nice to only have to get the ones I truly need! so yeh, really anxious about the test results for the genes!! I have an identical twin sister so I'd need to tell her if it's positive, she'd prob want to get tested too. *interesting note: when I said if the blood work comes back that I don't have the genes, then I'm in the clear - she said, well,,,,,,not necessarily. But she didn't want to go into as we had a lot to go over. I did make a  mental note of that comment and will ask her when I see her next time.   she was very thorough! I was impressed! she even checked- up on some lab work I had done that my Endo ordered. I like her, I am looking forward to seeing her again. I think I'll get some good advice and info from her she also complimented me on my diet.   said it was a very gut friendly and healthy diet 
    • Scott Adams
      Second chance

      By Scott Adams · Posted

      I'm not sure why "colonoscopy" keeps coming up for you, again it would be an endoscopy to diagnose celiac disease, but it seems that Kaiser should still have your records. If you were diagnosed by them in the 1990's using a blood test and endoscopy, then you definitely have celiac disease, and hopefully you've been gluten-free since that time. You should be able to contact Kaiser for those records.
    • Russ H
      Concerning GP advice

      By Russ H · Posted

      This sounds like a GP who is ignorant regarding coeliac disease. The risk with consuming gluten for several days is that it triggers the coeliac immune response, leading to raised auto-antibodies and active disease for several months. People may not even be aware of symptoms during this process, but it is causing damage to the body. As trents has said, the gut lining normally recovers on a strict gluten-free diet, and this happens much faster in children than in adults.
×
×
  • 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.