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Do You Think Everyone Has Celiacs?


1974girl

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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!


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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!!


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    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
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    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
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