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

Do You Think Everyone Has Celiacs?


1974girl

Recommended Posts

1974girl Enthusiast

I say that tongue in cheek of course. I have a friend who has Lyme disease. You can tell her any symptom and she will tell you that you should get checked for Lyme disease. It seems we kinda do that in the celiac community, too! I don't even have it myself but my daughter does. But I find myself telling people they should get checked.

"My joints hurt in the morning." --- Oh...you should get checked for celiac. It can cause joint pain. (or old age can do that, too)

"My daughter has a belly ache."----Oh you should get her checked for celiac. (Or she might just not want to take that math test)

"I have an itchy rash." --You should get tested for celiac. Oh wait...it just started after you opened the pool. Oh, it was the chlorine? Oh, ok. My bad." HA HA!

"I am depressed." ----seriously, I told my aunt to get checked for celiac but honestly it could be that her SON has not talked to her in over 3 years and with holding her only grandchild.

I say all of this because I wonder if I am the only loon that does this. I don't want to be THAT person like my Lyme friend. I don't want everyone to have celiac. I know everyone does not have it. I just read on this forum where someone asked about neck and jaw pain. I have been tested and negative but have had a crick in my neck for 8 days. Ohhh....do I have celiac or maybe it was my new pillow? Please tell me I am not alone!


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



Celiac.com Sponsor (A8-M):



LeahBanicki Rookie

I hope I don't do that but I have studied a lot about health. I find that people seem to find me. I talk about eating gluten free on facebook a lot and now get messages from people asking questions.

I always send them to good places to get info and tell them to get educated.

Celiac has a myriad of symptoms so it can be a good thing for more people to look into it if they are struggling with their health.

There is always a balance with being healthy. No one has all the answers.

Doctors who do all the schooling and make the Big Bucks still only call what they do "PRACTICING"

I got myself checked completely on a whim of my Mother-In-Law. Who casually mentioned a friend who had it and ... my agony better because of a casual conversation.

It is worth it, just to educate one person at a time.

hexon Rookie

Yeah, I have a co-worker with stomach issues and terrible frequent migraines. Another co-worker with lactose intollerance with a sister who gets rashes when she eats wheat. A friend's mom with fibromyalgia. And a family friend with grave's disease. I just tend to think all problems are caused by wheat now haha.

Chad Sines Rising Star

I only do that to my sister to torment her, because..well..she is my sister. :D

I have had a lot of it going the other way "Do you think I have Celiac?" for everything.

Usually my outwardly-directed comments are along the lines of a lot of people have food intolerances, allergies, and other issues like Celiac and do not even know it. These can become quality of life issues, so it makes sense to test for allergies and try elimination diets if things are abnormal in the GI department. You just never know.

eatmeat4good Enthusiast

I'm still telling everyone to get checked for Celiac...2 years into the gluten-free diet. But then I was sick for 7 years and I would have been grateful if anyone ever suggested it might have been Celiac. I don't think you are wrong to do that. If 90% of Celiacs are undiagnosed it makes the odds pretty good that you will alleviate someone's misery by telling them about Celiac. I have 11 people now who are gluten free and greatly relieved of their symptoms. None of them were told by a Dr. If I ever hear my sister has fibromyalgia or my friend does...I tell them to go to celiac.com and check the symptom list. I usually end my speech with if you know anyone with fibromyalgia please tell them about Celiac disease. I write celiac.com on little notes when I get into a conversation with someone about Celiac, or their symptoms, I can grab a note from my purse and tell them to check it out. We have to get the word out. I think I am an evangelist about it because it stole so much of my life and it is doing that to other people too. Most people are extremely grateful for any avenue to follow up on to hopefully feel better. Some of those 11 people are children whose mom's listened to me. I feel very good about that. No, not everyone is Celiac, but those who are cannot ever get well unless they hear about Celiac and what gluten can do to you. So I say, keep it up! I'm going to!

srall Contributor

Guilty. I think gluten causes everything in myself and others. I try and keep my mouth shut.

In all fairness, I do have friends who are struggling like I was a few years ago, and I do say to them, why don't you just try? My MIL actually listened and last I heard she's committed to gluten/dairy free (after symptoms got so much better)

There is also a friend of mine from church who so clearly has a DH rash (well...In my "expert" opinion) but he doesn't want to hear it. I've become the freaky food lady. I need to just keep my mouth shut!

  • 4 months later...
Owlmuse Rookie

I've done that a little but mostly with relatives because of the increased chance that they could have it. Unfortunately the two I think most likely to also have it are rather flakey and I don't think have done anything about it. On the other hand my immediate family got tested after I was diagnosed and my brother's doctor (a rather prominent guy) said he would bet money my bro didn't have it - he had no symptoms, or so he thought. And yep, you guessed it my brother was positive and had more extreme intestinal damage than me! It just shows that EVERYONE should be tested!!


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



Celiac.com Sponsor (A8-M):



Archived

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

  • 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 replied to Ginger38's topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Ginger38 posted a topic in Related Issues & Disorders
      1

      Shingles - Could It Be Related to Gluten/ Celiac

    3. - Russ H commented on Scott Adams's article in Latest Research
      5

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

    4. - Russ H posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Coeliac UK Research Conference 2025

    5. - Rejoicephd replied to Rejoicephd's topic in Related Issues & Disorders
      5

      Basic metabolic panel results - more flags


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,373
    • Most Online (within 30 mins)
      7,748

    Alexis Parker
    Newest Member
    Alexis Parker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I don't know of a connection. Lots of people who don't have celiac disease get shingles.
    • Ginger38
      I’m 43, just newly diagnosed with a horrible case of shingles last week . They are all over my face , around my eye, ear , all in my scalp. Lymph nodes are a mess. Ear is a mess. My eye is hurting and sensitive. Pain has been a 10/10+ daily. Taking Motrin and Tylenol around the clock. I AM MISERABLE. The pain is unrelenting. I just want to cry.   But Developing shingles has me a bit concerned about my immune system which also has me wondering about celiac and if there’s a connection to celiac / gluten and shingles; particularly since I haven't been 💯 gluten free because of all the confusing test results and doctors advice etc., is there a connection here? I’ve never had shingles and the gluten/ celiac  roller coaster has been ongoing for a while but I’ve had gluten off and on the last year bc of all the confusion  
    • Russ H
      There were some interesting talks, particularly Prof Ludvig Stollid's talk on therapeutics for coeliac disease.    https://www.youtube.com/playlist?list=PLRcl2mPE0WdigRtJPvylUJbkCx263KF_t
    • Rejoicephd
      Thank you @trents for letting me know you experience something similar thanks @knitty kitty for your response and resources.  I will be following up with my doctor about these results and I’ll read the articles you sent. Thanks - I really appreciate you all.
    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
×
×
  • 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.