Is It Just Me?

[ham&ex]

It may just be my imagination, but I find myself seeing and meeting people with glaringly obvious Celiac symptoms everywhere I go. It's really difficult for me to see so many people with what seems like Celiac not only remain ignorant of it's existance, but also give me a hard time about my adherance to the gluten-free diet (Rrrrg people! It's hard enough as it is!)

I know statistical projections say one in every 130, but to me, it looks to be about...oh I don't know...HALF!

Okay, maybe that's a bit much, but I do think it's more than the current projections state. Perhaps it's just a big jumble of different food intolerances, poor dietary habits and all of the pesticides and hormones in conventional foods that makes people look, act and feel the way they do. Still, I can't help but wonder.

Does anyone else feel the same way, or is it just me?

[seeking-wholeness]

IT'S NOT JUST YOU!!! In my circle of friends (which is pretty small), I can think of at least a dozen people (and nine of their kids) who I think need to be tested! Add to that the cashier at the local maternity store, the other young mother with kids slightly younger than mine that I met while shopping for a new car this weekend, and a couple of other chance encounters I can't remember right now, and it really DOES seem like the whole world is celiac!

[gf4life]

See, now my husband thinks I'm crazy, that everyone I meet does NOT have Celiacs, but I do run across a lot of people who I think should be tested. Now I've only mentioned celiac disease to a few of them, but I invariably get a response to the tune of "oh, I don't have a problem with wheat. I eat it all the time." Yeah, well so did I! It seems like most people think the symptoms of a gluten intolerance would be more dramatic the second you put the gluten food to your lips, but many people don't realise the damage is done inside of you and you might not notice any symptoms until much later.

I have a hard time keep ing my mouth shut about it, when people have obvious symptoms. Like a 12 year old girl the size of my (small for his age) 9 year old, who also has digestive problems. And her mom who has rashes so bad on her hands that she has to wear hand splints and bandages, and who also has bad headaches and digestive problems. Or my sons teacher who has major joint pains, conbined with digestive problems and has seen doctors for years and been tested for almost everything, except celiac disease. And I could go on, but what would be the point. I just hope that someday this disease will get the recognition it needs and testing will be so common place that adults will hardly ever need to be diagnosed, because the would have already been diagnosed as children! And half the planet will be gluten free.

It makes for a nice dream though...

God bless,

Mariann

[JsBaby-G]

I felt the same way for a long time. What I think it may be is the finding out you have Celiac is such a huge change in lifestyle so you feel so abnormal and when you find someone who sounds like they may have the same day you want to desperately to have someone in the flesh to talk too about it. Also because maintaining a gluten free diet is a full time job it takes alot of your focus so when you hear something that resembles a Celiac symptom you go on that track because your mind is already there!!

[gf4life]

That may be true, to a degree, but odds are that some of them are actually undiagnosed Celiacs. I only know of one other Celiac in my town, and statistically there should be around 80 or more. So there have got to be quite a few...

Mariann

[mario]

Yup, I just made a new celiac friend, her name is Linda. She's been celiac for 4 years, she said she will help me out. I'm also going to my dietition in two days.

[ham&ex]

It's good to know that I'm not the only one. I don't usually mention celiac to anyone unless they ask. I've had a few people blow up at me just for mentioning they might want to get tested. I know the diet may seem difficult to people because gluten is everywhere, but I don't understand how they wouldn't jump at any chance to naturally correct or improve their health especially with some of the awful symptoms they have. I certainly did!

I've had several people ask me about my diet and then tell me gluten intolerance didn't make any sense and was impossible. Sometimes it really makes me mad, but then I remember that 500 years ago the earth was flat and the center of the universe. I guess all things change with time....er, I hope.

[Guest LisaB]

Hey, I have the same thoughts all the time! I just try hard to sit on myself, a lot of people have Candida, may or not be related to Celiac, but it would cause many of the same problems if you can have Candida without having Celiac...but I do think more people have it then is currently thought. Also, there is wheat intolerence that effects, what, 14% or so? There may be other foods that cause others problems that we are not currently aware of as well.

Anyway, it does seem like about half have big problems, I agree!

[Connie R-E]

Last year when I did a gluten-free food sampling at my freindly neighborhood healthfood store, many people would just walk by without looking (as people do when you have free stuff to give them!), but if I saw a particuarily unhealthy person--celiac looking--I just had to say, "Celiac?" And they would just turn and look to see what I had! I had a great turnout after I thought of that trick!!

I can see celiac everywhere, too...

Here are some posts about the numbers:

celiac disease incidence, prevalence

Open Original Shared Link

Pretty interesting, huh?

Connie

[mannabbe]

THe topic is drifting to blood type diets (which our family has found works for us), but I must circle back to the original topic of.,.....celiac is everywhere!

It's been 3 years since my diagnosis, and not only do I still see celiac everywhere (much to the annoyance of a few of my patient friends ), but quite a few people I know have been diagnosed with celiac as a result of my telling them my suspicions. And those that don't have celiac ended up identifying some other severe food sensitivity (e.g. dairy or garlic or eggs or corn). Frankly it's hard for me to believe that the ratio may be 1 in 100 (as cited in the new UK study) when there are 2 celiac kids out of 11 of the kids in my daughter's class, and 3 celiac women (possibly 4!) working on my 13 person team at work.

I think that celiac is common - but that other food sensitivites are also very common. Maybe the two together add up to almost "everywhere?"

I'm glad you started this post because I thought it was just me!

Laurie

[YankeeDB]

Oh thank goodness! I thought I was the only one who sees celiac "everywhere!" I think most people don't want to give up bread, pizza, cake, etc. (who can blame them?) and a surprising number of people simply don't want to know bad news.

What amazed me the most was my brother's GI doctor. My brother developed colitis in his teens and went on to have his gallbladder removed and now has sclerosing cholangitis (incurable inflammation of the bile duct so he is likely to ultimately require a liver transplant). I suggested he talk to his doctor about celiac testing because of my recent results and the doctor said since my brother has no symptoms now it doesn't seem necessary but that he could try to go gluten free for a little while and see if he feels better!

Our mother suffered horribly for years from rheumatoid arthritis, neuropathy, depression, personality disturbances--I suspect her problem was celiac disease but she is long deceased now so I'll never know.

Another case I wonder about is a co-worker of Irish ancestry who just had gastric bypass surgery for obesity deemed necessary because "everything else had been tried." Meanwhile this person craved carbohydrates in the extreme--wouldn't a blood test for gluten intolerance have been worth a try?

[zippyten]

Re: seeing celiac everywhere...I just found out about my own gluten-free sensitivity & also how it is mostly genetic. My mother has diabetes (now insulin dependent) and has suffered from bowel problems for years, is always "running to the bathroom," "must've had something that diagreed with me," "don't feel well today," etc., also had her gall bladder removed while in her 40s. She's also supposed to be on a low-fat diet due to this plus her high-cholesterol and heart stuff. In short, she should be on a pretty strict diet but in fact eats terribly, manages her diabetes poorly, and is constantly eating things she shouldn't -- including lots and lots of wheat and lactose -- although she will admit to being "somewhat lactose-intolerant." By the way, her parents came over on the boat from Ireland, so there's that Irish hereditary factor too.

Anyway, when I told her of my diagnosis and suggested that she may have it, too, and should get tested, her reaction was priceless: "I already gave up lots of things in my diet, I'm not doing that, too!" As if the condition would only exist should she get tested and it were discovered. This way, she can just continue living in denial and running to the bathroom all the time...

Zippyten

[JsBaby-G]

Zippyten,

I find the exact same thing with my family. I know of at least 3 family members who I think might have Celiac and will ignore my advice or their doctors think it's rare or some other junk!! Even when you tell them that it is in fact hereditary, they still want to ignore it!!! What is up with people taking such poor care of themselves?!? My grandfather also came over from Ireland, and I think he had Celiac.

[ham&ex]

I think it's amazing how stubborn and insulting people can be.

My father is a health nut so I thought for sure he'd understand, so I sent him information about gluten intolerance. Later when I was visiting him I must have (suprise, suprise) gotten a little gluten contamination. I didn't have terrible reactions, but when I mentioned it he suggested that maybe I'm not getting enough vitamins since I don't eat wheat anymore and maybe the minor discomfort that comes with eating gluten is a worthy sacrifice in order to get my vitamins!

I had to come to the conclusion that he was a complete idiot and he had managed to hide it from me all these years...

OR that Mr Manhattanite Health Freak himself didn't even read what I had sent him because he had written it off as a FAD DIET!

I love my father, but boy I could of thrown him in the East River when he said that!

And and to make it that much more irritating, I really think that both, one of his best friends and HIS FIANC

[ChrissyInNH]

I totally agree with you all about it being everywhere! My husband and I are not related by blood (obviously - that would be pretty sick!) and both of us plus our 22 month-old son went gluten free last month and we are ALL doing much better. What are the chances of both my husband and I having celiac? Not good according to the stats - but we both have obvious improvement.

I/We are self-diagnosed celiacs. I had the blood test done and it was high-normal, but I am on medication for lupus that calms down my antibodies, and I think I would have had positive results if I wasn't on this medication. (Why didn't my doc know this?)

Anyway, I believe my whole family has celiac. A bit hint is that my niece has autism and is hyper, my sister (her mom) obviously has asperger's. I believe my dad has asperger's too, and I have ADD. As you know there is a big gluten-sensitivity issue here. So far I am the only one to try the gluten-free diet. The rest of my family doesn't want to even try it. You would think my sister would try it on her daughter. If it were my child I would do it right away!

Hopefully the medical professional will get on the ball soon and realize that this is an epidemic. I bet eventually, gluten-free foods will be as popular as low-carb is now.

Christine in NH

[Guest Florida Jean]

I certainly have to agree with all of you.

My sister, who has NO symtpoms, was tested and is negative. But...my daughters and each has a child that should be tested won't do so. Maybe part of it was because of my complaining about not being able to eat all the foods I just loved. The one gr/daughter went to a pediatric GI dr. and he told my daughter the little one didn't have enough symptoms to forego an endoscopy and to "put her under for this." What causes her bloating, etc?

Yes, I too, meet people who I know must have the intolerance, too. In fact, met a friend in the dr.'s waiting room. We began discussing our health problems [those you normally don't discuss i.e. diarrhea, etc] She said they can't find her problem. I told her to ask for the blood test for celiac. A couple of months later she came to visit with a darling angel magnet for my refrig. for steering her in the right direction as she finally felt better after all these years. Yes, she is celiac, too!

I guess we just have to stay on our soap box and try to save the world....or at least the world who is intolerant to wheat! Hurrah!

Jean

[plantime]

how funny to read this! My mom died because she kept eating foods she was not supposed to, and it made her bowels rupture. Her dad was very Irish, and had crippling arthritis! My friend has a son that cannot breathe, is obese, and has diarhea all the time. She suspects food allergies, but refuses to consider celiac disease because he is not "wasting" away! My diagnosis came from eliminating gluten, no blood tests or anything, the doctor said eliminate, and see how I feel. I started losing weight, could breathe easier, and do not hurt or feel psychotic! I just wish people would at least get tested!

~dessa~

[guppymom]

Our diagnosis came through my eldest daughter, who had intense stomache pain that kept going undiagnosed. I have had gi issues for years and years and finally got to the point where i couldn't go anywhere without knowing where the bathrooms were. Her doctor was really tired one day, put his head against the wall and said, "tell me all". Now, he had just diagnosed a celiac young man a few weeks before, so he was in the right frame of mind. My daughter never had the runs, has always been very thin although she eats everything in sight, but had extreme fatigue, headaches, joint pain(which she'd been in pt for). The serum test came back positive for her, so we talked more and he questioned me for some time about my lifelong symptoms. I'd been trying to be healthier, so I had really upped the whole grains, like the pyramid says to do, and had been getting sicker and sicker. We talked about my youngest daughter, who would display classic food allergy type reactions and become very hyper and irritable. We talked about my mom, who died from intestinal cancer 6 years ago and had gi problems for many many years and was misdiagnosed all over the place. He told me to start us all on a gluten-free diet immediately and if i felt better after a couple of weeks, to go back in and get tested from my own doctor. We have been, except for the occasional total accidents, gluten-free from that day, Oct 30th 2003. Of course I started to feel better almost instantly, and when I went in for my own test it of course came back negative. Well, it was low positive, which my doctor refused to acknowledge as positive. I don't fit the profile in the obvious respects. I am overweight, and that there is the first eliminator. He told me I could begin eating gluten foods again and then retake the test, and I cried. I talked to my gyn, who is a wonderful doctor, and she looked at me and said "you don't need his stupid test result to tell you what you already know". My health has improved a million percent. 5 months ago I honestly felt that I was dying and helpless. I am regaining health, and hope, and able to put into perspective all the questions. I have answers and know that I will gain more as time goes on. I have lost weight, and have not had one regret for missing gluten. Oh sure, like I've posted other places, I miss the ease of food prep. I miss Pizza Hut. But man. The pain. I don't miss the pain!!!!!

I have a good friend right now who is celiac, i'm sure of it. She is a Physician's Assistant, and refuses to entertain the idea. Okay. I see her being treated for IBS, acid reflux, fibromyalgia, joint pain, migraines, SADD, insomnia...I guess I just don't understand why it seems reasonable to take a pill for each individual issue, and have them not work, but not to just stop consuming gluten for a trial period. My husband says that they just don't hurt badly enough yet.

I wish my mum could've gotten a diagnosis. She died way too early for me.

[plantime]

guppymom,

I understand how you feel about your mom. My mom knew, but refused to give up her favorite foods. She died a terrible death, shortly after she turned 63. Her brothers and sisters exhibit symptoms, but won't give up the food. I am glad that you are, your children will love having you around for a long time. I agree about not wanting to go back on gluten just for a test. I accidently ate some yesterday, and I feel so miserable, it just isn't worth it. I'll spend the rest of my long, healthy life explaining my choices to people!

[guppymom]

Absolutely! I felt that someone was dragging me back into a pit of complete pain and misery. I just sat and cried and felt so trapped! If I'd been thinking clearly I probably would have reached that conclusion faster on my own, but man! The panic!!!

[debmidge]

If I were a millionaire I'd like to offer free testing to people. My sister in law refuses to get tested, even though her brother has a raging case of sprue and she shows the symptoms big time herself. Her reason: no health insurance & it'll cost too much. Denial is more like it; she is an avid lottery & bingo player and doesn't mind shelling out $5 for a pack of cigarettes. Also doesn't need to work as husband makes enough $ for her to stay home since they got married. I'd like to make a bet with her: if blood test says she has it, she pays for test; if blood test says she doesn't have it, I'll pay. That should interest her "gambling" instincts!

[andyc]

when you walk down the gluten free aisle in the supermarket there are always people who are shopping for wheat free food. Most of them have not been tested and many do not know what celiac disease is. They have been put on a wheat free diet by a nutritionist. When I mention celiac disease i tell them to come to this web site and find out about it.

I know 1 other person who has diagnosed celiac disease. Her 3 children also have it.