Jump to content
  • 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):

Am I Seeing Celiac Where It Doesn't Exist?


CeliacShack

Recommended Posts

CeliacShack Rookie

I feel like the kid from the Sixth Sense, "I see celiac people".

But seriously... I was just diagnosed through biopsy in June, and have been gluten-free ever since. My symptoms are improving, and I'm doing okay.

However, I now have concerns that my husband could also be celiac. He's having quite a few health problems. I really just wanted to see if other people had these particular illnesses, and were diagnosed w/ celiac.

So, he had multiple, large blood clots in both his lungs (pulmonary embolisms) late last year. The doctors said many looked "old", and that new ones had been building on top. We were very lucky to have discovered it in time. We never found an answer, why he got these, he had not traveled, he had not had a physical trauma, nor genetic issues.

We've been to the ER with him about 7 times in the past year, with odd symptoms, arm and leg numbness, chest pain, shortness of breath. CAT scans show that his clots have not returned, thank goodness. After many, many tests, they discovered he has some stenosis, degeneration and bone spurs in his spine, in at least two seperate pairs of vertabrae. It helps explain many of his symptoms... but I have to wonder why all the illnesses are suddenly popping up. He just turned 40 years old.

He also is often tired, naps a lot, joint pain... but he works a lot and is a tall big man...

I have seen people discussing bone degeneration and blood clots, are these somewhat common celiac issues... or am I just putting together puzzle pieces that don't belong?

He's been very supportive to me as I have been learning, and changing my life due to celiac. When I have bought up the possibility that he could have it as well, he shrugs it off. I am also about 99% sure my father is celiac, with good reason, he has fibromyalgia and is a textbook celiac case. I think my husband just believes I am seeing it everywhere now.

Thanks for any insight.


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



Celiac.com Sponsor (A8-M):



nvsmom Community Regular

It is entirely possible your husband has it, but many many other autoimmune diseases can cause blood clotting problems and blood circulation problems. I know Lupus patients can get blood clots and I believe that Raynauds affects circulation too. Diabetes can cause clots... I would look through some of the other AI disorders and see if any fit better.

In the case of your father, I would say that is probably more likely because AI disorders tend to run in families. Would he be open to testing for celiac and other AI disorders?

CeliacShack Rookie

It is entirely possible your husband has it, but many many other autoimmune diseases can cause blood clotting problems and blood circulation problems. I know Lupus patients can get blood clots and I believe that Raynauds affects circulation too. Diabetes can cause clots... I would look through some of the other AI disorders and see if any fit better.

In the case of your father, I would say that is probably more likely because AI disorders tend to run in families. Would he be open to testing for celiac and other AI disorders?

Hmm, that's true, his uncle just had a clot recently, and he was getting tested for lupus, I hadn't thought of that. Thanks for the advice, I will check out different AI disorders.

My father had the blood celiac test done, and it came back negative, apparently. He also has bone spurs and degeneration in his spine. He has a huge amount of crazy symptoms and decades of serious health problems. I've discussed it quite a bit with my parents, and I do think he suspects he could have it, but I can;t see him being very willing to make the lifestyle and diet changes to get better. I will bring up the idea of looking into other AI diseases with him as well. Thanks again!

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442

    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...