Why Is This Such A Popular Condition For People To Self Diagnose With?

[FMcGee]

If they grill you over what's in the sauce and then have a big piece of cake for dessert, remember stupid people come in both sexes and every height/weight / skin color, too.

Clap clap clap.

[VioletBlue]

Yes, I suppose at 47 you could consider me middle aged, thanks by the way for that. HOWEVER, had one single freaking blind pig headed clueless medical professional figured out twenty years ago what was wrong with me I wouldn't have been middle aged when I first started bedeviling you at your restaurant for something, anything to eat that doesn't have wheat rye or barley poured all over it.

Deep breath.

And I would hardly call it popular. A condition that makes it very difficult to eat in restaurants or at friend's houses and requires you to completely rearrange the way you look at food could hardly be considered a popular idea by anyone's standards. Eating gluten free is a medical necessity for me, unless of course you want me in your ladies room throwing up, but that does not make it popular with me. It obviously doesn't make it popular with you either. So I'm not exactly sure who it is you think eating gluten-free is popular with. Let me assure you it's a major major pain in the butt to eat like this and no one who comes in to your restaurant wanting to eat gluten free has made this choice lightly or for the fun of it. In short it ain't a popular choice.

And bravo to those of you who managed to avoid therapy when some nice doctor was convinced your nausea joint pain and brain fog were all in your head. I wasn't so lucky. Nice to be able to look back at how much money I spent on stress mediation techniques, not covered by insurance, when all I really needed was a change in diet. I want that money back damn it. I spent thousands. Then maybe I could afford to eat out more.

[Brittany2]

I've been sick since my early twenties.

First, it was because of college.

I graduated.

Next, it was because of my stressful job.

I quit.

Then, it was because I had kids.

I put them out for adoption---just kidding!

Times passes. I'm still sick with more of my body systems failing me.

Finally, in my late thirties, they decided that all these problems over the last two decades was because I was peri menopausal.

HORSE HOCKEY!!!

I started researching myself and, lo and behold, celiac came up over and over. I am blood and biopsy diagnosed, but I wish I had been smart enough to self diagnose earlier.

Women are hysterical. All our problems, including the ever popular IBS, are because of our periods.

That's what a good portion of the medical community believes in my experience.

Interesting thing to ask, but its self diagnosed only because many doctors either don't know about it or think its that real of a problem. Many believe its in ones head, or only a thing of childhood.

Many times when symptoms are shown early the doctors tests come up as false negatives, so the final choice to make them feel better is to try the gluten free diet. I know many like myself have had extremely positive results from doing this. I'm only 19 and yes female, but when you figure out the thing that has been making you feel horrible for no reason its a wondrous feeling. I had the same issue as TrillumHunter, my symptoms were thought to have been because of college and a stressful job, but I found out about Celiac through the internet before it became serious.

Going out to a restaurant is a daunting thing for a celiac or gluten intolerant. I know I've been accidentally glutened when I've gone once since starting the diet a month ago. Please be understanding and really compliant to our wishes at the restaurant you'll make lives much easier.

Luckily awareness is increasing.

[ciavyn]

Just to throw in my two cents -- this is not some popular fad. Heck, I would prefer to NOT deal with picking through the ingredients. It's torture, and eating out -- even grocery shopping -- is enough to put my husband's teeth on edge (we won't even mention the in-laws). More often than not, it's legit, and you need to respect that people get really sick when they eat something that contains gluten.

As an aside, though: I'm stunned when I mention that I have food allergies, and people say, "Oh my gosh, is it celiac?" Or "is it gluten?" It is becoming more common and well-known.

[Lynayah]

Let me say from the start that I do not mean in anyway, to demean the unfortunate condition, that is Celiac Disease. That disclaimer aside, does anyone know what has made this condition so popular? I serve food in a restaurant. The most common "food allergy," that people tell me about is a "gluten allergy." I know that statistically, only about 1 in 150 people have Celiac. So my question is, do any of you know why having a, "gluten allergy," is so popular? It is almost invariably middle aged women who have this "allergy." Why is this so popular as a self-diagnosed "allergy?" Did some celebrity recently declare having it? Help me out in figuring this out if you can.

Cheers,

Dan

Yours is an excellent question. I hope many will learn from it.

Celiac aside, stats have indicated that one in seven people may have gluten-intolorance. Celiac is but one small part being intolorant to gluten.

Take it from one who is non-Celiac gluten-intolorant and who has suffered beyond belief and knows from experience: gluten-intolorance symptoms can be as bad, if not worse, than Celiac. It is horrible, horrible, horrible . . . and it is most certainly not popular.

What is happening: We are now at the tipping point where people are realizing what is happening to them. Gluten-intolorance is much more common than any of us have ever realized, hence the reason why you might be hearing it more now than in the past.

Gluten-intolorance and Celiac are serious (with C being life-threatening if not managed properly) and not . . . I repeat, NOT "popular," and most certainly NOT a fad. Anyone with Celiac or Gluten-Intolorance who is not taken seriously can get very, very SICK if given even a small dose of gluten.

Example: I have to use a can opener that is dedicated just to me. Or, if I put a piece of gluten-free bread in a toaster that my family uses, just the cross-contamination from the bread crumbs can send me screaming into sickness.

Again, thank you for asking your brave question. Great question. With hope, many will learn from it. Good for you.

Best,

Lyn

[Shess0816]

If you send me the name of this restaurant I will send them an emailing telling them I heard they had fantastic service for celiacs. Also if you post the restaurant's name and the city it's located in under the restaurant section when others visit that area they will know where to go eat. Nice to hear of such a great dinning experience.

https://www.celiac.com/gluten-free/index.php?showforum=28

It was an awesome dining experience! Not all of them are that great, so it's really nice the few times we get to feel comfortable eating! )

The restaurant I went to was Upstream Brewery and it is the one located in Omaha, NE downtown (we have a couple locations here). Now, I have not been to the other location here, so I do not know if they have the same diligence as the downtown branch, but I was definitely impressed with the downtown restaurant!

[Ahorsesoul]

The restaurant I went to was Upstream Brewery and it is the one located in Omaha, NE downtown (we have a couple locations here). Now, I have not been to the other location here, so I do not know if they have the same diligence as the downtown branch, but I was definitely impressed with the downtown restaurant!

I'll email them and also give this info to my family. I have a brother and sil, both born in Omaha! Thanks

[DownWithGluten]

I will answer this since I am "self-diagnosed" gluten intolerant. Since I never had the biopsy, I don't claim to be Celiac because I do not know for sure if I am or not and am not about to eat gluten just to know for sure. But gluten intolerant, yes.

Why? The answer is simple. I was at the end of my rope not even wanting to live with the sickness and pain I was getting, increasingly worse and worse. I had tried a multitude of things, been to a variety of doctors. Nothing helped, nothing worked. I was feeling very hopeless. So as a LAST resort, decided to try the gluten free diet.

Immediately, my problems went away.

So uh, I'm not going to question it. I am just so grateful now that I can control what's happening with my body. It was so disheartening before when I got sick over and over and had no idea why. It was bad enough that it would have interrupted work. I was wondering how I'd be able to hold a job (I was in college when I stopped eating gluten).

-----

If you want a more detailed explanation of my 'journey' here it is.

I had GI issues, getting worse over the years. I mean severe cramping, constipation, diarrhea, etc. The pain was the worst, not to mention the exhaustion. So I went to a GI doctor. They did do the blood test for "sprue" but it came back negative "as far as we can tell." So my mom and I ruled out Celiac early on. The doctor said it's not common in the US anyway, and most likely, I had IBS (whatever the hell that is). His mind was made up before even doing tests. So later he said, yes since it is not Chron's or "sprue" it is IBS. (I had a barium test which ruled out chron's).

I thought that greasy food triggered the attacks. It did, but that wasn't the root cause I know now. anyway so I stopped eating greasy food, avoided cheese, even avoided caffiene. But it continued. It worsened.

I went to a chiropractor, who told me I had scoliosis so my curved spine caused the stomach problems. I had him crack my back a few times, which did nothing.

The zelenorm the first GI doctor gave me for "IBS" made me bleed, eventually, internally. He didn't believe me, but I stopped taking it. Later, it was taken off the market for making people bleed.

I got a sonogram of my ovaries. Someone I knew told me cysts in her ovaries caused pain down there sometimes. So I thought I'd try. I had no cysts.

I went to a more alternative doctor. He told me to drink hot water and eat ginger roots before meals, and stop drinking soda. So that my "IBS" stomach could digest easier. Eliminating soda did help with gas, but the other stuff didn't stop the GI "attacks" which were increasing in frequency.

So I got very, very fed up and hopeless. One night of an attack, I had the thought "How am I supposed to look forward to living my life if this is going to keep happening all the time?"

I ate bald pasta one night, thinking that was pretty safe (no spicyness, no butter). And I felt like throwing up. I was so frustrated. I had no idea what to do, if Now, even eating plain, simple food made me nauseous.

So I thought, screw this. I will just TRY eliminating gluten from my diet, just in CASE that is what is doing it. This diet sucks. This diet is very, very restrictive. 90% of the freedom of 'eating' is gone once you go on this diet. I did NOT want to do this. But I was at the end of my rope. Even slight, slight stress used to trigger an attack. Even sitting in my car, turning the wheel ... just my body going at an angle would cause abdominal pain. It was getting ridiculous.

I could have gotten the biopsy. But I was cynical. Nothing else had worked, doctor-wise. I didn't want to go through the pain just to get another shrug and be back to square one. I said #*(@ it, and went on the diet myself.

And it worked. It all stopped. I was extremely stressed that week (unrelated reason), and was 100% my GI would react with an attack, as it usually would. It didn't. I was convinced. The gluten-elimination had ruined it.

All those years, I had been packing my body with gluten, slowly inflaming my intestines and constantly saturating it with something it feels is foreign. Now, my body free of that and is no longer attacking itself.

That's enough for me. Not to mention, I was diagnosed at age 10 with hashimoto's thyroid disease which is sometimes an after-effect of Celiac. Just throwin' it out there.

Does that answer your question? Whether there's a label or not, all I know is getting rid of gluten got rid of my problems so that's all I need.

[MagpieWrites]

It HAS been getting a lot more noise in the last few years - heck, I'll even openly admit it took 11 family members and friends seeing clips from an episode of the View's Elizabeth Hasslebeck talking about celiac and endlessly forwarding the info to me to make me finally drag my assets off to the doctor and get some rather... less than dignified tests. I'd been told endless number of things that were wrong with me over the years with no real help from any of the pills - and it never occurred to even one "specialist" to look at celiac. I actually had to ARGUE with my doctor for the endoscope test.

And if you want a surreal moment in your life - find yourself at 29 insisting some stranger shimmy up a camera into your personal bits! I actually cracked up halfway through the conversation and had to point out the absurdity of the whole thing to the doctor. He blinked at me for a minute and than grinned and said "You know, you have a point. I see a lot of hypochondriacs wanting pills... but rarely do folks 'fake it' for such an uncomfortable test! We'll set it up this week."

There IS a group that view it as trendy and a quick way to maybe lose a few pounds. But I think they are in the minority. Dealing with gluten is such a JOB that folks who are trying to be "in" pretty quickly lose the glamor when they realize HOW much they have to pay attention to.

But for the main? I think others on here are right - not only is the US just starting to pay attention to this disease/allergy/screwed up bodies - but we're seeing the fallout caused by decades of needless crap pumped into our foods. Just as peanut allergies have skyrocketed due to the pervasive nature of the food - companies have "plumped" out their products for years with gluten. People's bodies are just too saturated and are rebelling.

As for the differences in men and woman talking about it? I can only speak for the folks in my own life... but in general, men seem far less willing to inconvenience themselves for their health. My father has celiac. He is MISERABLE most of the time - nauseous, tired, bloated, etc. But heck is gonna freeze hard before he gives up "real" bread. My mom takes care of herself because if she goes down it isn't just her - she had my brother and I to take care of, my dad, others depended on her to be healthy. I think woman are better are doing the maintenance type of health care because they view their own health on how it effects others. Guys (again - just going by the ones in my life, I know there are tons of variables! ) tend to view their health more as "it only affects me, so I can ignore it".

With the self-diagnosing? Well, while I did go through with the tests and got told it was celiac, I can understand WHY so many people don't go that route and self-diagnose. With celiac and gluten intolerance there is pretty solid and easy proof one way or the other. Get sick when you eat gluten? Feel better when you don't? Well, stop eating it! As one friend told me "If I throw up and want to die when I eat a slice of bread - and can run a marathon when I don't.... pretty easy call to make." You can get pretty definitive results without going for an endoscope. I went the actual testing route because several nasty cancers run in my family and I wanted to make sure I wasn't actively dying. (Luckily - nope. Just feeling like I wanted too!) But without THAT little specter over my head - I would have likely skipped the tests and just gone ahead with giving up gluten since I feel universes better now!

[amberlynn]

My doctor refused to give me the tests because I didn't present with 'classic' Celiac symptoms. I'm slightly overweight, rather than underweight. And that was the reason he gave me!! WTH...

So, since I'd already been gluten-free once before (while nursing my oldest son who was allergic/intolerant to the top 8 allergens), I KNEW that I felt better at that point. And I could remember that when I started eating 'real' food again (I started with Oats, and specifically remember feeling crappy again, and thinking "hmmm, something seems off now"), I felt horrible once again. My body felt like it was working against me, and I felt awful all the time.

Now, since we've been dealing with multiple food allergies in my house for years, I really didn't want to deal with removing the gluten again. A YEAR ago, I mentioned to the doc all of this (including the elimination diet from before and how I'd felt). He recommended maybe trying the diet again (He's really not into 'unncessary testing'). I was so exhausted all the time. My joints hurt. I was nauseaus. I had been looking for a quick fix. My migraines came back 6 months later, they were attributed to my cycle... nope (chocolate according to my food log, yay...). Any pill he gave me made me feel even worse. Imitrex actually made me have trouble breathing. Joy.

So, I went on the diet. Waited two weeks, went BACK to the doc. Almost all my symptoms are gone. Well, too late for testing, and there's NO WAY I'll go back on the gluten for it. I could not handle the pain again.

I also get hives when I touch wheat, so I think it might be an actual allergy? I don't know. I just say gluten intolerant or allergy. I'm undiagnosed, and I would never claim Celiac, though I think it might be it... I will just never know.

On the plus side, the gluten-free/CF diet has helped my son with Autism immensely. We've seen a complete 180 from this kid! Judging by the rash he gets when he's been glutened, the doc suspects Celiac as well. Again, I won't put him on it to be tested, b/c I won't put him through that. If, as a teenager/adult he wants to go back on gluten for the testing, then its HIS choice.

[lobita]

In a nut shell the reason is because there is no big drug company interested in Celiac Disease.

Yep, that pretty much sums it up; no drug money to make on us. Nice world we live in, huh?

I love the posts on this thread. Very cathartic and comforting to read comments from people with experiences so similar to mine.

This has basically been said in many different ways already, but when you've been sick for so long and then you start on this lifestyle and you actually start to feel like a human being...you end up self-diagnosing yourself. It's not really something you do because you wake up one day and say "Yeah, no wheat sounds like a great idea!"...at least I think that's not the reason why most of the "self-diagnosed" people on this forum did it.

Thanks for being interested enough to ask us the question, though.

[Dawnie]

Yes, I'm middle aged...45 to be exact.

In July this year I thought I was going to die...really!

I made 2 trip to the ER

Made numerous Dr office visits in tears...begging for them to help me.

Spent hours on the toilet...I was constipated, nauseated, swollen lymph glands, bloating, abdominal pain & soreness.

Spent thousands of dollars on colonoscopy, upper GI, Lab work, and Dr visits. (I had to borrow money)

Yes, I'm self-diagnosed. I ran out of money. I know there's a great place in Seattle (near my home) that could help, but I cannot afford to go.

So, I did my own research. My father has been gluten-free for 2 years. He had a positive test.

I've been wheat-free for one month and I'm going off dairy and all other grains, too.

I no longer have to spend hours in the bathroom. I no longer feel the need to visit the doctors...who were no help.

I do not eat out now as my body is so sensitive to anything. But, when I do go out I will be very careful about what I order. It means weeks of misery if I eat something wrong.

[gfp]

Popular? Sounds as much fun as winning the lottery.

Why now?

1) Failure of medical system

2) Access to internet

3) Did I mention the failure of the medical systems?

Why 'middle aged women?

1) Statistically more stay home and are homebuilders than men.

2) See 1-3 above.

3) Statistically: more women see women Dr's ... could it be that women make better listeners as MD's?

[Ahorsesoul]

Yes, I'm self-diagnosed. I ran out of money. I know there's a great place in Seattle (near my home) that could help, but I cannot afford to go.

Call this place and explain your situation. Some places will see patients at very reduced rates or put you into a research group so you can be seen. It doesn't hurt to ask, the worst they could say is they won't see you.

[haleym]

DITTO THAT!

[haleym]

Popular? Sounds as much fun as winning the lottery.

Why now?

1) Failure of medical system

2) Access to internet

3) Did I mention the failure of the medical systems?

Why 'middle aged women?

1) Statistically more stay home and are homebuilders than men.

2) See 1-3 above.

3) Statistically: more women see women Dr's ... could it be that women make better listeners as MD's?

Oh... and may I also add, in my case at least...

LOSS OF MEDICAL COVERAGE!

I couldn't go in for an endoscopy now if I WANTED too, unless I had a bunch of money to throw around.

Felt sick, tried diet, feel better.... that's all the diagnosis I need to know what's good for me and what's not!

[runningcrazy]

Let me say from the start that I do not mean in anyway, to demean the unfortunate condition, that is Celiac Disease. That disclaimer aside, does anyone know what has made this condition so popular? I serve food in a restaurant. The most common "food allergy," that people tell me about is a "gluten allergy." I know that statistically, only about 1 in 150 people have Celiac. So my question is, do any of you know why having a, "gluten allergy," is so popular? It is almost invariably middle aged women who have this "allergy." Why is this so popular as a self-diagnosed "allergy?" Did some celebrity recently declare having it? Help me out in figuring this out if you can.

Cheers,

Dan

Maybe because the doctors wont diagnose it for us! And you even have the statistics wrong, its 1 in 133. Plus-many people aren't celiac but rather gluten intolerant as well.

[mushroom]

I think the major reason for self-diagnosis (beyond the obvious inability of the doctors to diagnose us) is that after we have finally figured it out for ourselves it is too late for the official diagnosis.

[Ahorsesoul]

I think the reason it is now so popular is the increase in genetically engineered grain. It has more gluten in it so more people are reacting adversely.

Once our bodies are genetically engineered we will be able to digest the altered foods.

[mushroom]

You have hit that mail right on the head, Ahorsesoul. My three most problematic foods are also the three most genetically engineered--wheat, corn, soy.

[OptimisticMom42]

I think the reason it is now so popular is the increase in genetically engineered grain. It has more gluten in it so more people are reacting adversely.

Once our bodies are genetically engineered we will be able to digest the altered foods.

When I get engineered can I have perky breasts and and thinner thighs? Middle age is a drag!

[Jestgar]

I think the reason it is now so popular is the increase in genetically engineered grain. It has more gluten in it so more people are reacting adversely.

Once our bodies are genetically engineered we will be able to digest the altered foods.

Maybe we're all allergic to Round-Up?

[Ahorsesoul]

When I get engineered can I have perky breasts and and thinner thighs? Middle age is a drag!

You'll have to get the package deal with those two items. A thinner waist is included for no extra cost.

[mimommy]

Dan, you are a brave soul indeed, for joining this forum to ask what you must have known was a question that could invite criticism. Good for you! You have inspired a great discussion here on this post, and as always, I have learned something new from our members

My child was in the second grade (8 years old) when she developed her worst symptoms. I won't outline them for you, as It seems they have already been covered in excellent detail. Let's suffice it to say that my baby was horribly, chronically, helplessly sick and misdiagnosed for a long time. A day and a half after removing gluten from her diet she was symptom free and remains so to this day. She was diagnosed by blood testing, endoscopy and positive dietary response--but it took ALL of those things AND an open-minded doctor to get us there.

I don't know if you are aware of this, but for those with celiac disease gluten damages the villi of the small intestine (among many myriad other health problems). If my child ingests even a crumb of wheat bread from a peanut butter jar or butter dish she develops symptoms almost immediately which makes trusting anyone else's food prep impossible. We are not even remotely willing to bring her back to the point of damaging her small intestines again just for a night out of the kitchen, but there have been times--vacations, family parties, etc.-- when we have to work around it. That's where you, all restaurant owners and staff, are our greatest hope of surviving such outings with health intact.

Please, Dan, understand how very crucial proper food prep is to someone with gluten intolerance, and that when we say 'intolerance' we MEAN IT! We mean complete auto-immune intolerance. We need you to educate yourself. We need you to approach health issues with patience, understanding and a willingness to help. Our health depends on it.

[Ahorsesoul]

mimommy,

Well said!