Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Hypercoagulation And Gluten Sensitivity?


zeeclass6

Recommended Posts

zeeclass6 Explorer

I am a 51 year old woman. I have Hashimoto's thyroiditis, an auto-immune thyroid condition. Recently I started seeing a new doctor (I'll call him Dr. M), who told me to stop eating gluten because it is making my auto-immune condition worse. I have been gluten-free for 3 weeks now. He is the first doctor who ever told me that gluten might be a problem. I have eaten it my whole life with no known problems (no digestive issues that I was overtly aware of). But I have been suffering with body aches and a mild form of Fibromyalgia, apparently. Slow muscle recovery from injury, mainly...muscles that get "pulled" or "hurt" easily and take forever to heal. And recently, adhesive capsilitus happening in a few parts of my body for no apparent reason.

My Celiac blood test has come back negative twice...once about 10 years ago, and again recently. However, my IGA level is extremely low. I only partially understand what this means. Apparently when you have low IGA, some tests will give false results. I was going to take the stool test from Entero Lab, but they told me it would not yield good results. I did go ahead with the cheek swab genetic test.

I have noticed that I have less gas and bloating since going gluten-free. My appetite is greatly reduced and I have no cravings anymore. I always used to think that those were due only to lactose intolerance (which had been getting worse before I went gluten-free).

I had seen a different doctor (from the Holtorf Medical Group) a few months ago. She did a whole bunch of tests and told me that I have Hypercoagulation; high Fibrin and active Epstein Barr virus. This really scared me. She wanted me to get Heparin injections. But she never told me a thing about gluten. She only seemed to give me half of the advice I really needed about my body and bungled my thyroid medication. I do not plan to go back to her.

Can you tell me whether there is any connection between a gluten problem and this hypercoagulation problem? Does anyone know? Have you heard of this? Because I've never had a problem with blood clots or anything my whole life. I am still taking oral contraceptives, which I know can increase your risk of clots and wonder if that is behind this. Or does it have anything to do with my auto-immune problem and gluten?

The doctor at Holtorf is overloaded with patients and doesn't have the time to talk with me about this. Her office is also extremely expensive and they wanted me to buy almost $1000 in their private label supplements. At first of course I thought this was all bulls**t. But the fact is, there are problems that stand out on my blood tests and I'm not sure where to turn next!!!!

Do I see a Hematologist? Do I see an Immunologist? Who could tell me more specifically whether I'm truly sensitive to gluten or any other foods? My regular allergist said he does not do that sort of testing and my GI doctor couldn't help me, either. I do not have a good primary care doctor at the moment.

Dr. M, who told me to stop eating gluten, didn't seem to understand the Fibrin thing or be concerned about it. He totally eschewed the whole Heparin thing. He is supposed to be a very good doctor, but I'm really worried about the results of that blood test and the things that the Holtorf doctor found.

I would really appreciate some help and guidance. I am confused and a scared. But at least I'm not eating gluten, LOL.

Thank you for reading this and thank you in advance for any help you can give me.


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



Celiac.com Sponsor (A8-M):



Metoo Enthusiast

I am a 51 year old woman. I have Hashimoto's thyroiditis, an auto-immune thyroid condition. Recently I started seeing a new doctor (I'll call him Dr. M), who told me to stop eating gluten because it is making my auto-immune condition worse. I have been gluten-free for 3 weeks now. He is the first doctor who ever told me that gluten might be a problem. I have eaten it my whole life with no known problems (no digestive issues that I was overtly aware of). But I have been suffering with body aches and a mild form of Fibromyalgia, apparently. Slow muscle recovery from injury, mainly...muscles that get "pulled" or "hurt" easily and take forever to heal. And recently, adhesive capsilitus happening in a few parts of my body for no apparent reason.

My Celiac blood test has come back negative twice...once about 10 years ago, and again recently. However, my IGA level is extremely low. I only partially understand what this means. Apparently when you have low IGA, some tests will give false results. I was going to take the stool test from Entero Lab, but they told me it would not yield good results. I did go ahead with the cheek swab genetic test.

I have noticed that I have less gas and bloating since going gluten-free. My appetite is greatly reduced and I have no cravings anymore. I always used to think that those were due only to lactose intolerance (which had been getting worse before I went gluten-free).

I had seen a different doctor (from the Holtorf Medical Group) a few months ago. She did a whole bunch of tests and told me that I have Hypercoagulation; high Fibrin and active Epstein Barr virus. This really scared me. She wanted me to get Heparin injections. But she never told me a thing about gluten. She only seemed to give me half of the advice I really needed about my body and bungled my thyroid medication. I do not plan to go back to her.

Can you tell me whether there is any connection between a gluten problem and this hypercoagulation problem? Does anyone know? Have you heard of this? Because I've never had a problem with blood clots or anything my whole life. I am still taking oral contraceptives, which I know can increase your risk of clots and wonder if that is behind this. Or does it have anything to do with my auto-immune problem and gluten?

The doctor at Holtorf is overloaded with patients and doesn't have the time to talk with me about this. Her office is also extremely expensive and they wanted me to buy almost $1000 in their private label supplements. At first of course I thought this was all bulls**t. But the fact is, there are problems that stand out on my blood tests and I'm not sure where to turn next!!!!

Do I see a Hematologist? Do I see an Immunologist? Who could tell me more specifically whether I'm truly sensitive to gluten or any other foods? My regular allergist said he does not do that sort of testing and my GI doctor couldn't help me, either. I do not have a good primary care doctor at the moment.

Dr. M, who told me to stop eating gluten, didn't seem to understand the Fibrin thing or be concerned about it. He totally eschewed the whole Heparin thing. He is supposed to be a very good doctor, but I'm really worried about the results of that blood test and the things that the Holtorf doctor found.

I would really appreciate some help and guidance. I am confused and a scared. But at least I'm not eating gluten, LOL.

Thank you for reading this and thank you in advance for any help you can give me.

I would get the blood tests results that say you have hypercoagulation. Hypercogulation is also known as thrombophilia. I have a genetic thrombophilia. I have more specifically prothrombin G20210 gene mutation, heterozygous. That means in the 2nd stage of clotting something is wrong with one of my proteins or something, so I clot to fast. You need to know specifially which disorder you have, if its genetic, and if its heterozygous or homozygous (genetics)....this will tell you more which specific problem you have (Factor IV...prothombrin...etc) and how serious it is. Mine I will have to take heprin if I have surgery, pregnant, or cancer. I cannot take contreceptaives, or anything that increases my risk of clots.

Btw - thrombophilia is unrelated to celiac.

zeeclass6 Explorer

I would get the blood tests results that say you have hypercoagulation. Hypercogulation is also known as thrombophilia. I have a genetic thrombophilia. I have more specifically prothrombin G20210 gene mutation, heterozygous. That means in the 2nd stage of clotting something is wrong with one of my proteins or something, so I clot to fast. You need to know specifially which disorder you have, if its genetic, and if its heterozygous or homozygous (genetics)....this will tell you more which specific problem you have (Factor IV...prothombrin...etc) and how serious it is. Mine I will have to take heprin if I have surgery, pregnant, or cancer. I cannot take contreceptaives, or anything that increases my risk of clots.

Btw - thrombophilia is unrelated to celiac.

Thank you for your reply. I made an appointment with a Hematologist. He will probably be able to shed light on this for me. I had read that this condition can increase risk of stokes or TIA's. Well, my elderly mother has had some TIA's and has been on blood thinners for about 5 years. Which makes me wonder if perhaps there is a genetic component to this or something. I agree with you that it's important to find out exactly what is going on, because not knowing could have serious implications down the road as I get older.

Gemini Experienced

I am a 51 year old woman. I have Hashimoto's thyroiditis, an auto-immune thyroid condition. Recently I started seeing a new doctor (I'll call him Dr. M), who told me to stop eating gluten because it is making my auto-immune condition worse. I have been gluten-free for 3 weeks now. He is the first doctor who ever told me that gluten might be a problem. I have eaten it my whole life with no known problems (no digestive issues that I was overtly aware of). But I have been suffering with body aches and a mild form of Fibromyalgia, apparently. Slow muscle recovery from injury, mainly...muscles that get "pulled" or "hurt" easily and take forever to heal. And recently, adhesive capsilitus happening in a few parts of my body for no apparent reason.

My Celiac blood test has come back negative twice...once about 10 years ago, and again recently. However, my IGA level is extremely low. I only partially understand what this means. Apparently when you have low IGA, some tests will give false results. I was going to take the stool test from Entero Lab, but they told me it would not yield good results. I did go ahead with the cheek swab genetic test.

I have noticed that I have less gas and bloating since going gluten-free. My appetite is greatly reduced and I have no cravings anymore. I always used to think that those were due only to lactose intolerance (which had been getting worse before I went gluten-free).

I had seen a different doctor (from the Holtorf Medical Group) a few months ago. She did a whole bunch of tests and told me that I have Hypercoagulation; high Fibrin and active Epstein Barr virus. This really scared me. She wanted me to get Heparin injections. But she never told me a thing about gluten. She only seemed to give me half of the advice I really needed about my body and bungled my thyroid medication. I do not plan to go back to her.

Can you tell me whether there is any connection between a gluten problem and this hypercoagulation problem? Does anyone know? Have you heard of this? Because I've never had a problem with blood clots or anything my whole life. I am still taking oral contraceptives, which I know can increase your risk of clots and wonder if that is behind this. Or does it have anything to do with my auto-immune problem and gluten?

The doctor at Holtorf is overloaded with patients and doesn't have the time to talk with me about this. Her office is also extremely expensive and they wanted me to buy almost $1000 in their private label supplements. At first of course I thought this was all bulls**t. But the fact is, there are problems that stand out on my blood tests and I'm not sure where to turn next!!!!

Do I see a Hematologist? Do I see an Immunologist? Who could tell me more specifically whether I'm truly sensitive to gluten or any other foods? My regular allergist said he does not do that sort of testing and my GI doctor couldn't help me, either. I do not have a good primary care doctor at the moment.

Dr. M, who told me to stop eating gluten, didn't seem to understand the Fibrin thing or be concerned about it. He totally eschewed the whole Heparin thing. He is supposed to be a very good doctor, but I'm really worried about the results of that blood test and the things that the Holtorf doctor found.

I would really appreciate some help and guidance. I am confused and a scared. But at least I'm not eating gluten, LOL.

Thank you for reading this and thank you in advance for any help you can give me.

I once had a blood test that showed high fibrinogen counts but have never had any blood clots or anything of that nature, either. It is an inflammatory marker and Celiac Disease will cause massive inflammation in the body. Doctors like to scare the hell out of people, don't they? This test was run when I was not gluten free but suffering from advanced Celiac Disease and was a mess. I have not had the test repeated but considering all my other blood work that was messed up by Celiac has gone into the good zone, including my extremely low HDL cholesterol, I don't worry about it. I really believe that undiagnosed inflammatory diseases cause these types of blood results. I would wait awhile and stay strictly gluten free and then repeat the test. There are supplements that can supposedly lower fibrinogen counts but I think getting rid of all that inflammation would be the better thing to do. You have 2 problems that are strongly associated with Celiac.....lactose intolerance and Hashi's thyroid disease. So do I. I am 52 so close in age to you. I bet this won't be an issue after you heal because I'm betting you have Celiac.

Low Total IgA will most certainly skew a Celiac panel. You need to have a healthy amount to be tested via blood work so I wouldn't pay too much attention to the negative result if your total IgA is lower than normal.

Please don't freak out about this...you would not believe how much having this disease can mess up your body and blood work.

Stay on the diet, do not cheat and get re-tested for the abnormal numbers. You may be surprised to see them come down into the normal range.

zeeclass6 Explorer

Thanks for your encouraging reply!

There were other inflammation markers on the blood tests which came back with problematic high results, too. I remember looking at all of this (the Holtorf doctor did a TON of tests) and thinking: "What the hell is going on in my body??!!" Because my body felt stiff and I was miserable. I had very painful adhesive capsulitis in my shoulder, a pulled muscle in my groin, and my knees hurt because my body was compensating for the groin pull when I walked. I was somewhat of a mess, but I never thought I had enough "inflammation" in those areas for these types of tests to show a HUGE problem.

Well anyway, I'm trying to straighten all of this out. I've been getting Active Release Therapy for the shoulder and it is working (although it is painful as hell). My shoulder is about 40% better. I'm getting shiatsu massage for the groin pull and using a foam roller. It's coming along slowly, and now my knees aren't as bad.

In general I have definitely noticed that my body doesn't feel quite as stiff since I've been off gluten, and I have been able to stay off Ibuprofen, too. There had been many days when I just couldn't make it through the day without taking 3 Ibuprofen in the morning and another 3 in the evening. Nowadays, I'm not taking any unless the groin pull is acting up (which makes it hard to walk or handle stairs).

I decided to make an appointment with a Hematologist. I will make sure to tell him about the inflammation and gluten, and ask if it has anything to do with the Fibrin. My blood tests for iron also showed low Ferritin, low % saturation, and high TIBC. According to information I've found in various places on the Web, this means that I have anemia (even though my hemoglobin and hematocrit are good). That is another big question I have for the Hematologist.

If all of this stuff gets cleared up simply by being gluten-free, then it ASTOUNDS me that the medical community in general does not tell patients about this. And that even the expensive Holtorf doctor never mentioned a word about gluten to me, only wanted to push her expensive supplements. But I could go on and on about the poor state of the medical community these days, especially Endocrinologists, who are often, quite frankly, pompous uninformed idiots.

Gemini Experienced

Thanks for your encouraging reply!

There were other inflammation markers on the blood tests which came back with problematic high results, too. I remember looking at all of this (the Holtorf doctor did a TON of tests) and thinking: "What the hell is going on in my body??!!" Because my body felt stiff and I was miserable. I had very painful adhesive capsulitis in my shoulder, a pulled muscle in my groin, and my knees hurt because my body was compensating for the groin pull when I walked. I was somewhat of a mess, but I never thought I had enough "inflammation" in those areas for these types of tests to show a HUGE problem.

Well anyway, I'm trying to straighten all of this out. I've been getting Active Release Therapy for the shoulder and it is working (although it is painful as hell). My shoulder is about 40% better. I'm getting shiatsu massage for the groin pull and using a foam roller. It's coming along slowly, and now my knees aren't as bad.

In general I have definitely noticed that my body doesn't feel quite as stiff since I've been off gluten, and I have been able to stay off Ibuprofen, too. There had been many days when I just couldn't make it through the day without taking 3 Ibuprofen in the morning and another 3 in the evening. Nowadays, I'm not taking any unless the groin pull is acting up (which makes it hard to walk or handle stairs).

I decided to make an appointment with a Hematologist. I will make sure to tell him about the inflammation and gluten, and ask if it has anything to do with the Fibrin. My blood tests for iron also showed low Ferritin, low % saturation, and high TIBC. According to information I've found in various places on the Web, this means that I have anemia (even though my hemoglobin and hematocrit are good). That is another big question I have for the Hematologist.

If all of this stuff gets cleared up simply by being gluten-free, then it ASTOUNDS me that the medical community in general does not tell patients about this. And that even the expensive Holtorf doctor never mentioned a word about gluten to me, only wanted to push her expensive supplements. But I could go on and on about the poor state of the medical community these days, especially Endocrinologists, who are often, quite frankly, pompous uninformed idiots.

Be prepared for the docs to tell you that gluten has nothing to do with elevated fibrinogen counts. They are clueless. It's an inflammatory marker and many Celiacs, including myself, had high markers and other

high test results that resolved with the gluten-free diet. If you get rid of the source of inflammation (gluten), your body heals.

I had a high serum protein count that can be indicative of multiple myeloma. It can also be elevated with certain autoimmune diseases but they don't tell you that. I have 4 autoimmune diseases. After having the crap scared out of me by a doctor, who was all gloom and doom, I saw a great hematologist who reassured me that I didn't have cancer. She was the one who told me that this can happen with autoimmune diseases. After a few years gluten-free, it's now in the normal range.

I totally agree with you about Endocrinologists. I gave up on them because they talk nonsense. I know many people who do not get the right treatment for their thyroid problems from them. I didn't either so switched to a functional medicine doc. What a difference! If anything happened to her, I don't know what I would do.

Take a look at this: Open Original Shared Link Very useful information!

Good luck but I really think your counts will come down the longer you are gluten-free.

zeeclass6 Explorer

Ha ha, you gave me a link to my favorite website regarding Ferritin. I love STTM and participate in their facebook group. Yes, I have low Ferritin. And the other tests, which she advises to get...well, I got them and it all points to anemia. I have high TIBC, low %Saturation,etc. They call it micro"something" anemia. I need to do more research on it.

On the STTM website, they advise to take extra iron to raise your Ferritin level. But when I have tried to do that (twice already) I developed terrible anxiety. The first time was a pretty high dose of iron, so the next time I took a very low dose of iron and still developed the anxiety (but not as bad as the first time).

Nobody can seem to tell me why I got the anxiety from taking the iron. I know that I am high in Copper from a blood test, and from what I understand that can throw a lot of things out of whack.

I am trying to get my thyroid straightened out. Trying to find a good naturopath and an MD to work with. One way or another, I'll get there...it is just taking some time to find the right people to work with. I am very traditional and would rather work with an MD, but I have been VERY disappointed by the MD's I've worked with previously. I do have one licensed Naturopath in mind, and have met a couple of licensed Acupuncturists who seem to know a LOT about all of this stuff, including female hormones. It's just a matter of...who do I trust? I'm just leery of putting trust in someone who may not totally know what they are doing and could screw me up worse, know what I mean?


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



Celiac.com Sponsor (A8-M):



Gemini Experienced
I am trying to get my thyroid straightened out. Trying to find a good naturopath and an MD to work with. One way or another, I'll get there...it is just taking some time to find the right people to work with. I am very traditional and would rather work with an MD, but I have been VERY disappointed by the MD's I've worked with previously. I do have one licensed Naturopath in mind, and have met a couple of licensed Acupuncturists who seem to know a LOT about all of this stuff, including female hormones. It's just a matter of...who do I trust? I'm just leery of putting trust in someone who may not totally know what they are doing and could screw me up worse, know what I mean?

Oh yes, I absolutely know what you mean! I went through quite a few doctors myself trying to find one that knew what they were doing with my thyroid. Traditional medicine was OUT and I went to a functional medicine doctor and have now been going to her for almost 25 years. She's the only one who knew how to manage Hashi's thyroid and get my antibodies down. I just don't trust mainstream medicine anymore....they just throw meds at you! For Hashi's you may need supplemental hormone so find someone who will use both T3 and T4 thyoid hormone....it's the only thing that works.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Tyoung posted a topic in Related Issues & Disorders
      0

      High Folate Levels

    2. - JohannesW85 replied to JohannesW85's topic in Related Issues & Disorders
      4

      Do I have celiac/Gluten sensitivity?

    3. - captaincrab55 replied to Connie Smitj's topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?

    4. - trents replied to Connie Smitj's topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?

    5. - Connie Smitj posted a topic in Coping with Celiac Disease
      2

      Hunger, nervous stomach or Hpylori?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,370
    • Most Online (within 30 mins)
      7,748

    LLSatt
    Newest Member
    LLSatt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Tyoung
      I was diagnosed in November with celiacs and at the time had been tested for multiple vitamin deficiencies. During that time my folate level was 4ng/mL, Although I was told to take supplements, I ended up only taking them for a week or so as they made my stomach upset. I had my blood work redone yesterday and as the results came in I noticed that most of my levels are now normal, but folate level is >24ng/mL. Has anyone else had similar results? If so were you able to figure out why or how to normalize them? I also have been having constant acid reflux since about two weeks into going gluten free (no acid reflux history prior to) that we are trying to get to the bottom of with no answers. Could that be related? Thank you!! Also wanted to not that I am not eating any gluten free processed food.
    • JohannesW85
      Did you take a look at my pics that I uploaded?    These rashes is not itchy, but I have seen that people have this too that have celiac and it’s not itchy for them either. I have also heard that sulfur burps are a common things with celiac too.  Yes it can be something else too but it’s to much symptoms that I have that match with either gluten sensitivity or celiac.   Hopefully it’s just gluten intolerance and not celiac.  As I said before I have the gen type for celiac and diabetes typ 1 and the those diseases going hand in hand.    Thanks again Trent for your time to reply, and I wonder if any body else have kind of the same symptoms that I have?   
    • captaincrab55
      Welcome Connie Smitj,  Did you have a follow up test to see if the treatment for H Pylori was successful?  It's possible to catch it again, especially from a partner.  When I contracted it a second time my wife was tested and was positive for two of the bacteria in H Pylori.  
    • trents
      Welcome to the forum, @Connie Smitj! Can you give us a little more history about your celiac journey? How long ago were you diagnosed and how long have your been gluten free? Do you have other symptoms besides quick onset of hunger after eating and gut pain? How long have these symptoms being happening?
    • Connie Smitj
      I eat a gluten-free diet but hunger pains start within an hour of eating dinner. I  had h pylori infection before I was diagnosed. Occasionally I’ll have bouts of pain. Could it come back or is it just celiac disease?
×
×
  • Create New...