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

Hypereosinophilic Syndrom,heart Problem

grantschoep

By grantschoep
in Related Issues & Disorders

Recommended Posts

grantschoep Contributor
grantschoep
Posted

Hey, I was just thinking if there could be a connection with celiac deases

Quick background.

Summer of 2005 sucked big time for me. All spring I had been feeling sicker and sicker. Also started getting really weak and so on. Found out my heart valve's were about shot. Had to have major heart surgery and artificial valves put in. This happened a few days after my 30th birthday. Rather young...

In the meantime, I was also daignosed with celiac desease, something I thought I probably had(lots of family history) but I was being stubborn and not getting tested.

In any event, my heart, it got all screwed up do to another deasease I was diagnosed with. "Hypereosinophilic Syndrome" It was the thing that damaged my heart. Its fairly rare.

I was just wondering, if there could be any connection between celiac desease, and eosinophilia. Eosinophilia is rather rare, and its causes are unknown. I was just wondering, in the celiac community, if anyone else had it.

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

Celiac.com Sponsor (A8-M):


Claire Collaborator
Claire
Posted

Hi - I am not really familar with your rare condition but I do a lot of research and have seen it related to celiac in the literature. Are you at all used to doing internet research. If you are, go to it - using all the search parameters you can think of. If you are not just ask me and perhaps I can help you find a few items to read. Claire

  • 2 weeks later...
emeraldskies Rookie
emeraldskies
Posted

I was just diagnosed with a condition that's similar but not the same, polycythemia. I have no idea what the cause is. The two most uncomfortable symptoms are poor circulation (my feet will never warm up) and numerous daily struggles to breathe. Even the tiny smoke released from the hair dryer is enough to make me fight for breath for over an hour. I guess I'm going to have to find a hematologist. Have you tried any treatments?

Bette Explorer
Bette
Posted

Hmmm... interesting topic grantschoep, I was just diagnosed earlier this year with mitral valve prolapse and a bicuspid aortic valve. Both are leaking but very mininal. I was put on heart medication (beta blockers) but just had too many side affects from the drugs.

My cardiologist agreed it was okay not to have to take them at this point. I just have to get annual echocardiograms.

My mother has had 3 open heart valve surgeries, the same valves (mitral and bicuspid) needed replaced. Her last surgery which has been about 20 years ago she had mechanical valves put in. They are now leaking very bad, but unfortunately she refuses to have her chest cracked one more time.

Just exactly is Eosinophilia? and what are the symptoms? My mother also had very poor circulation in her legs (not a diabetic) and has had steents put in the veins of both of her legs.

She was told her valves were destroyed by rheumatic fever when she was a child, but she does not remeber, nor did her mother of her being ill with that when she was a kid.

I know I definiately did not have rheumatic fever, and I have problems with the exact 2 heart valve. She has not been diagnosed with Celiac, nor could I convince her to get tested (very stubborn), but I would swear that she probably has it.

Bette Explorer
Bette
Posted
My mother has had 3 open heart valve surgeries, the same valves (mitral and bicuspid) needed replaced.

Jeesh, I need to give it up tonight. I meant to say my mother has had 3 different surgeries for valve replacements on her mitral and aortic valve. Her first 2 replacements were pigs valves, the last surgery she had the mechanical valves put it. They lasted the longest!!!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.