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

Crp And Celiac, Cardiomyopathy Too?


Lisa16

Recommended Posts

Lisa16 Collaborator

Hi-- does anybody know what the realtionship is between a high CRP count and celiac disease? Also, can celiac cause hypertrophic cardiomyopathy (enlarged heart muscle?) How about difficult to control hypertension (okay--difficult to the point that both a nephrologist and a cardiologist have kind of given up)?

I have done a preliminary internet search and it looks like a CRP test is part of the standard celiac test panel because of the inflammation. Is this correct? Early bloodwork showed the IgA levels elevated 60 units, and a CRP of .136, but no other bloodwork was done. My first biopsy 8 years ago was negative. I was diagnosed with IBSD at 17 and I have been sick 23 years.

I ask because they arrived at a diagnosis through DH (not my regular doctor, who missed it). It is definitive, and I am just starting to attempt to figure out the big medical picture. I have had such phenomenal results after eliminating gluten (nerve pain gone, joint pain gone, insomnia gone, etc...) that I wonder if (or rather, I am hoping that) some of my other medical mysteries might be goners too.

I have also lost confidence in my regluar doctor and I am not sure what to do. I have not seen him post diagnosis.

Advice? Knowledge to share?

Lisa


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



Celiac.com Sponsor (A8-M):



celiac-mommy Collaborator

I've not heard of celiac causing HCM, but I will ask one of our cardiologists today and re-post. If you have had uncontrolled hypertension for a number of years, this can cause significant thickening of the myocardium and look like HCM. This I see daily, unfortunately. You have to find a med that will work for you, many have to go thru a lot to find the right 'fit' for them. If your Dr isn't helpful, find another! I'll get back to you on the celiac/HCM thing...

nikki-uk Enthusiast

Before diagnosis my husband had a very high CRP count (also high ESR) but it slowly went down after going gluten-free.

It is still quite high (for the average person) but this is because he has arthritis as well (which also improved once he was gluten-free)

:)

celiac-mommy Collaborator
Hi-- does anybody know what the realtionship is between a high CRP count and celiac disease? Also, can celiac cause hypertrophic cardiomyopathy (enlarged heart muscle?) How about difficult to control hypertension (okay--difficult to the point that both a nephrologist and a cardiologist have kind of given up)?

Advice? Knowledge to share?

Lisa, I spoke with our head cardiologist/medical director and he is not aware of any correlation between celiac and hypertrophic CM, He doesn't believe there's a link at all, but like I said before, a long history of hypertension will cause the heart muscle to thicken. Hope this helps some.

Lisa16 Collaborator

Thank you for checking. That was very kind and thoughtful of you. You went above and beyond.

The HCM is in the "borderline" category from the echo.

I did find an article on the internet that talks about gluten getting deposited in the pericardium (similar to DH). It is an article attached to this site, but I am not sure if it is written by a doctor. Here is the link:

https://www.celiac.com/articles/651/1/Heart...Yick/Page1.html

I also found some references to celiac and portal hypertension in pubmed, but they seem to be isolated cases.

There is some very conflicting information out there and I am a little confused.

My regular doctor (internal med) referred me to a Nephrologist, who ran out of options because I am very allergic or have extreme reactions to the meds (maybe some had gluten) and sent me back. Then I got sent to a cardiologist-- same deal. The last tried was minoxidil. Over eleven years they have eliminated entire classes of meds. Some have made me so sick I could not get up.

Impasse.

The numbers, at highest are 150/100s--not soaringly high. At best 130/80s. Currently untreated. That's why I had a spark of hope.

I was really praying the gluten free diet would help.

I guess the next step will be to go to Mayo-- that is the next stop on their list.

Lisa

neesee Apprentice

I take Diovan and Toprol for my hbp and ischemia. I'm sure you could find something you can take. You have to get used to some of the side effects of medications sometimes. You need to get serious about your blood pressure!

My son has hypertrophic cardiomyopathy. He also has a posterior fossa sub arachnoid cyst and high blood pressure. I have no idea what caused his health problems. He's 28 yrs old with no health insurance!

I sometimes wonder if I caused it, I was so low in folic acid.

neesee

Lisa16 Collaborator
I take Diovan and Toprol for my hbp and ischemia. I'm sure you could find something you can take. You have to get used to some of the side effects of medications sometimes. You need to get serious about your blood pressure!

My son has hypertrophic cardiomyopathy. He also has a posterior fossa sub arachnoid cyst and high blood pressure. I have no idea what caused his health problems. He's 28 yrs old with no health insurance!

I sometimes wonder if I caused it, I was so low in folic acid.

neesee

Thanks neesee-- I have taken both of those. The toprol (a beta blocker) "overblocks" me before the numbers get where they need to be. It also affects my vision, as well as other side effects. The diovan, which I did tolerate, did nothing--even at the highest dose.

Be assured I have been serious about it-- sorry to give the impression I wasn't. I have tried well over 40 medications in the past 11 years. The doctors are really at the lab rat stage, I'm afraid. That is why I was hoping for the connection (which,according to that article, there may be.)

If it was the IgA getting deposited, that would explain why a medication wouldn't work-- wouldn't it?

Also, please don't blame yourself because of low folic acid. There are so many unknowns and things we don't understand. Maybe in the future things will get better for all of us. I hope so.

Lisa


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



Celiac.com Sponsor (A8-M):



celiac-mommy Collaborator
https://www.celiac.com/articles/651/1/Heart...Yick/Page1.html

I also found some references to celiac and portal hypertension in pubmed, but they seem to be isolated cases.

There is some very conflicting information out there and I am a little confused.

Lisa

I read the article earlier, I don't fully agree with the gal. The studies were fairly small and I'm not really sure that the findings were definite. To me it read like they still weren't 100% sure of the outcomes and although they found the antibodies in the pericardium, the person could have had the inflammitory process, developed bloody pericarial fluid and upon drainage and analysis, found the antibodies in the pericarduim. Anyway, If you have inflammation of any kind in your body, it can affect multiple areas, not just 1. I agree with getting the inflamation under control however you can (there are many ways to go about it, not just with medicine) as well as the BP--VERY important. In the presence of having high BP, I would question your Dr about having 'boarderline HCM' but I could be wrong...

Certain diseases/disorders etc.. occur in the presence of other disorders, but it doesn't necessarily mean that one caused the other. You can have coronary artery disease (CAD) without diabetes, but because of the way the body reacts with the insulin with diabetes, CAD is common when one is diabetic. There are MANY issues like this. Which came 1st, the chicken or the egg? I guess the most important thing for you is to find a good Dr to help you take care of you!! Good luck and best wishes to you!

  • 2 years later...
pdquick Newbie

Lisa, have you been given a diagnosis of hypertrophic cardiomyopathy? As celiac-mommy points out, it is not the same thing as the thickening of heart muscle that is seen on echo in hypertension. If there is truly a question of HCM, you should be seen at least once by an HCM specialist. You should also consider genetic counseling and testing. This is important not just for you, but also for your family members who might also have it. The HCM Association website is 4HCM.org. The understanding of inherited cardiomyopathies is expanding rapidly, and I personally don't feel that HCMA has kept pace, but they're still a good place to start. Their resources include listings of centers of excellence in HCM care.

There have been reports of correlation between pericarditis and celiac. Pericarditis is an inflammatory condition characterized by inflammation of the lining of the heart. By contrast, HCM and other cardiomyopathies are oftne genetic disorders affecting specific proteins in the heart muscle. There have been reports of slight increase in risk of celiac among patients in a cardiomyopathy clinic awaiting transplant, but the excess seems to be in patients with dilated cardiomyopathy, not HCM. Dilated cardiomyopathy is a common end-stage presentation of many kinds of cardiomyopathy, so it's not clear that all those patients even had the same heart condition. A large review of medical records in Sweden showed no correlation between celiac disease and cardiomyopathy.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748

    Lunaluv
    Newest Member
    Lunaluv
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.