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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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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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