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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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    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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