celiac disease Increasing? Whats The Deal

[DVK]

Hello, I am new to this although I do believe my condtion is related to celiac disease although blood tests were inconclusive and waiting on doing an endo. I have felt 100% better for the past 7 days and better everyday since being on gluten-free diet. However as I have been trying to deal with the diet and looking into places I can eat, other than home, I have noticed how many places I call are aware to this condition. Even more important was the last 2 calls I made to 2 restaurants today alone and both people at the corporate office said that in the past 2 months they have had more inquries about celiac disease and Gluten Free diet than ever in the past! I wonder why all of a sudden so many are getting it, or why its coming on so sudden like mine did.

Any thoughts?

PS if you are a newbie like me, this site is great, and people here are incredibly supportive (especially Michelle, THANK YOU )

David

[chrissy]

it is now known that celiac is not a rare condition-----so probably more doctors are starting to check for it. they also now know that there are many varied symptoms other than the "classic" symptoms. it is probably partly due to the increased awareness.

maybe we have also done something to our foods or our environment that has increased the incidence of the disease being triggered in people that are already genetically susceptible.

[Ursa Major]

David, if you're still waiting for your endoscopy and biopsy, you need to stay eating gluten, or it will be negative. On the other hand, since you feel much better gluten-free, maybe you might just want to cancel the biopsy? It may not be worth it to keep poisoning yourself.

I think that awareness has risen, rather than more people actually having celiac disease. It's great that now more and more people are being diagnosed (or are now, thanks to the Internet, diagnosing themselves). Before they'd just have to keep suffering and would die from cancer (or other diseases caused by gluten) eventually.

[Nantzie]

The National Institutes of Health has launched a National Awareness Campaign specifically geared toward doctors and other healthcare workers. Open Original Shared Link

Maybe the information is finally filtering through.

Nancy

[DVK]

Thats great to know the above link, cause i know my doctor and many others need to recognize it for sure. I agree also that something with the pestisides and Antibiotics and other bad stuff they are doing to our foods, grains etc is changing the metabolic make up of everything.

Not good to change things that are natural!

David

[Nantzie]

Isn't that site great. Before that was up, I found this one from the NIH - Open Original Shared Link I've brought a copy of that to every doctor I've gone to. Just in case they start talking about the old beliefs about celiac. They see the source of the information and take it very seriously.

Nancy

[Cynbd]

I was at Costco the other day and wandered by and older gentleman passing out samples of chicken broth. I asked him if it was 'gluten free' -- and he said "A lot of people have been asking me that, and I don't even know what it is... can up please tell me what it is" I was a little surprised that he had been asked so many times - but that is good people all around are becomming more aware.

So, I have read here that if you're going to have an endo - keep eating gluten... What is the deal? I have the impression that it takes a long time for the body to heal, wouldn't the damage show up even if you were gluten free for a month or two?

[DVK]

Ya, Endo not sure what to do on that, I dont want to go back to the feeling ill, Never had the diahrea, but the stomach thing and gas, and tired, Anxiety, pains in my legs, and tingling in the hands FOrGEt it, THEY CAN DO AN ENDO, FOR FUN FOR ALL i CARE TO MAKE SURE NOTHING ELSE IS THERE AND TO BE SURE OF NO ULCERS ETC. ALthough staying gluten-free is important because It is making me feel better.

David

[par18]

I'm sure awareness is increasing in places like supermarkets, resturants and places like Costco. What I really want to know is how many more instances of Celiac are being correctly diagnosed in the medical community. When more GP's and GI's start going on the record with numbers I will really be encouraged. I wonder how many of a typical GP's patient database is actually Celiac? (1 in 100),(1 in 200), (1 in 300)? Same with the GI's. I'm afraid they really don't know. Also I wonder what the ratio of IBS to Celiac is. If it is less than 20 to 1 then I would be surprised.

Tom

[eleep]

I'm a 20th century culture scholar, so I have my own crackpot theory about part of why there's been so much more awareness of Celiac recently -- which I will share for your amusement, dissection, agreement or utter disbelief. My thinking is that the low-carb diet craze meant that enough people stopped eating wheat products for long enough to notice differences in their health -- and noticed that they became increasingly symptomatic when they went off the diet. I was never on a low-carb diet myself, but I had a history of hypoglycemic highs and lows and my father's a lifelong Type I diabetic -- so I'd been eating a diet for a couple of years that was pretty conscientious about glycemic index and such -- had cut most refined sugars and flours out and that just happened to include a lot of gluten-based foods.

eleep

[DVK]

One thing that I was really concerned with until finding out about celiac disease was my pancreas, since my Doctor was so sure it was a mild case of Pancreatitis I was having, although I had no real pain and all my symptoms were in the GI tract and intestines and my Lipase was only elevated 150 points over normal which most people with pancreas problems have elevated Lipase and Amylase in the 1000s with lots of severe pain and discomfort. Second my Ct scans enhanced and ultrasounds were all normal with my whole abdomen area. after I paid a donantion to Harvard medical online I was able to send my results to a doctor for an online review for his assesment, and he is the one who mentioned celiac disease and to be checked for it, and also this link is something to think about also. Open Original Shared Link

David

[weathertopmama]

I'm a 20th century culture scholar, so I have my own crackpot theory about part of why there's been so much more awareness of Celiac recently -- which I will share for your amusement, dissection, agreement or utter disbelief. My thinking is that the low-carb diet craze meant that enough people stopped eating wheat products for long enough to notice differences in their health -- and noticed that they became increasingly symptomatic when they went off the diet. I was never on a low-carb diet myself, but I had a history of hypoglycemic highs and lows and my father's a lifelong Type I diabetic -- so I'd been eating a diet for a couple of years that was pretty conscientious about glycemic index and such -- had cut most refined sugars and flours out and that just happened to include a lot of gluten-based foods.

eleep

I'm sure this is true, Erica! For a long time I belonged to Open Original Shared Link I wasn't low-carbing, just on a very strict sugar-free diet, and I would hear this story all the time. People figured out on their own that wheat was a problem, and now it is standard knowledge on that board that wheat and gluten cause trouble for many people!

[Jestgar]

I'm a 20th century culture scholar, so I have my own crackpot theory about part of why there's been so much more awareness of Celiac recently -- which I will share for your amusement, dissection, agreement or utter disbelief. My thinking is that the low-carb diet craze meant that enough people stopped eating wheat products for long enough to notice differences in their health -- and noticed that they became increasingly symptomatic when they went off the diet. I was never on a low-carb diet myself, but I had a history of hypoglycemic highs and lows and my father's a lifelong Type I diabetic -- so I'd been eating a diet for a couple of years that was pretty conscientious about glycemic index and such -- had cut most refined sugars and flours out and that just happened to include a lot of gluten-based foods.

eleep

True for a friend of mine.

[PeaceAngel22]

My mom visited Wild Oats today looking for gluten free foods to surprise me with today. While at the store, my mother was asking for assistance and the clerk said that more and more customers are coming in looking for gluten free foods due to celiac.

[madison]

Hello, I am new to this although I do believe my condtion is related to celiac disease although blood tests were inconclusive and waiting on doing an endo. I have felt 100% better for the past 7 days and better everyday since being on gluten-free diet. However as I have been trying to deal with the diet and looking into places I can eat, other than home, I have noticed how many places I call are aware to this condition. Even more important was the last 2 calls I made to 2 restaurants today alone and both people at the corporate office said that in the past 2 months they have had more inquries about celiac disease and Gluten Free diet than ever in the past! I wonder why all of a sudden so many are getting it, or why its coming on so sudden like mine did.

Any thoughts?

PS if you are a newbie like me, this site is great, and people here are incredibly supportive (especially Michelle, THANK YOU )

David

HI David-I am new too-been suffering with severe consitpation for years -been on ever prescription drug and recently my doctor gave me the pills you take before a colonscopy!!!! my friend has celiac and I thoughnt I would try not eating wheat or gluten for a few days-the funny thing was I was eating so much wheat for fiber etc. and it was just making it worse but I had no idea-had a blood test Monday so I should know next week-I have felt alot more energetic and happier but still not sure!

[sspitzer5]

My thinking is that the low-carb diet craze meant that enough people stopped eating wheat products for long enough to notice differences in their health -- and noticed that they became increasingly symptomatic when they went off the diet.

You certainly may be right. I was on a low carb diet for about 3 years before I knew about Celiac. When I went off of it, I started developing lots of intestinal issues that I didn't have before. I think my body had adjusted to a lower dose of gluten and adding it back made the symptoms worse. I didn't connect it with wheat at the time though. Of course, I had many other Celiac symptoms for years prior to this and never could figure out why.

S

[DVK]

That is a catch 22 for sure, Have you ever tried cherry or prune juice? Good luck with the tests, and keep reading, the people here are good peeps!

David

HI David-I am new too-been suffering with severe consitpation for years -been on ever prescription drug and recently my doctor gave me the pills you take before a colonscopy!!!! my friend has celiac and I thoughnt I would try not eating wheat or gluten for a few days-the funny thing was I was eating so much wheat for fiber etc. and it was just making it worse but I had no idea-had a blood test Monday so I should know next week-I have felt alot more energetic and happier but still not sure!

That is a catch 22 for sure, Have you ever tried cherry or prune juice? Good luck with the tests, and keep reading, the people here are good peeps!

David

[SurreyGirl]

...

maybe we have also done something to our foods or our environment that has increased the incidence of the disease being triggered in people that are already genetically susceptible...

I personally think that vaccines have a lot to do with triggering this in people who are genetically susceptible. Just like a severe illness, they overload immune system. After the trigger happens, it's impossible to go reverse it.

Also, my dad used to work in the grain storage industry in Europe and recalls that when imported wheat was first marketed, it was stated that it has a much higher protein content that the local varieties. I have also read recently that Japanese are trying to resist introduction of imported wheat, despite similar high-protein content. But, as usual, marketing presents just one side of the story, they don't say anything about gluten, so unless someone is already familiar with the problem, they just head for the aisles full of wheatos' and the rest under the guise of high-fibre diet. Complete nightmare.

What really scares me though is that the trend might include rice next.

Another slogan that makes me want to throw up is "let's give cows to Africa". They have already introduced dairy farming in China and breast cancer is on the rise.

just my thoughts..

[jenvan]

Hello, I am new to this although I do believe my condtion is related to celiac disease although blood tests were inconclusive and waiting on doing an endo. I have felt 100% better for the past 7 days and better everyday since being on gluten-free diet. However as I have been trying to deal with the diet and looking into places I can eat, other than home, I have noticed how many places I call are aware to this condition. Even more important was the last 2 calls I made to 2 restaurants today alone and both people at the corporate office said that in the past 2 months they have had more inquries about celiac disease and Gluten Free diet than ever in the past! I wonder why all of a sudden so many are getting it, or why its coming on so sudden like mine did.

Any thoughts?

PS if you are a newbie like me, this site is great, and people here are incredibly supportive (especially Michelle, THANK YOU )

David

Its not that more people are "getting" Celiac, but that more and more existing Celiacs are finally getting diagnosed, as awareness continues to grow, via media, doctors finally understanding the disease etc. However, 90some % of Celiacs are still undiagnosed, and it takes an average of 11 Years to get a diagnosis !

[Nancym]

Doctor's used to think it was very, very rare. Like 1 in 5000. Now the numbers for Celiac disease are around 1 in 100 but I suspect the numbers for gluten intolerance are much, much higher. 30% if Dr. Fine is correct. A lot of people are going to be going gluten-free if they just try the diet and feel better, like I did.

[Rusla]

It is not so many are getting it all of a sudden but so many have had it for such a long time. The thing is many doctors did and still do go by the old ideals that Celiacs have to be rail thin etc., etc. The thing is with the research more information is getting out and with younger doctors coming in or some who are trained differently are now finding it where others have messed up. Not only that but we are now taking matters into our own hands and doing more research and pushing the doctors.

I personally had to practically abuse them into doing it and I had to tell them how to do the tests because they were totally clueless. This is why more of it is coming to the surface because they are now dealing with us, who are better educated and do not think that doctors are gods and everything they say is gold.

[Tim-n-VA]

Is there any possibility that celiac is actually increasing in frequency due to efforts to grow wheat varieties with higher protein content?

Since we don't know what the trigger is, could it be that 30-50 years ago, the wheat consumed didn't have the protein content to reach a threshold to trigger celiac?

Just a little speculation to try to tie these different views together, nothing based on any studies.

[happygirl]

I think all the above are potentially correct and part of the puzzle.

There is increased awareness, and more celiacs are speaking out and companies are realizing there is a market for their products. The internet has helped all of this.

the low-carb diet and the focus on health is definitely and important aspect.

in general, and although we aren't "there" yet, doctors are looking at more preventative measures, like diet. Increase in alternative medicine/approaches and those docs are often more knowledgable about gluten.

There could be various "triggers" (as with any autoimmune disorder), and some of them might be increasing.

It could definitely also involve the "type" of wheat that is out there now.

This is similar to many other issues, disorders, diseases, etc (depression, adhd, cancers, etc). Before, people just suffered and often died. Now, we have names for them....research...publicity, etc.

So take these all individually, and then put them together, and it is out there!

Whatever the reason---we are happy for this!

[Tim-n-VA]

Earlier today I got in the car and heard just the last part of a report/interview. Not sure how relevent it is since I didn't hear the whole thing. The question was why allergies seem to be increasing. The theory provided was that our immune systems were evolved to keep us alive is a relatively bacteria rich environment. Over the last half century or so, sanitation in general and antibiotic use in particular has us living is a relatively clean environment. The immune system starts "looking" for other things to fight off.

Like I said at the start, I only got part of this so I don't know how much of this is current research, how much is just a hypothetical, etc. The person speaking was a pediatric allergy specialist at a medical school.

Based on the website for the local PBS station, it must have been "The Parent's Journal"