The Extent Of This Is Mind-boggling ...

[Sailing Girl]

Maybe this is old hat to some of you, but it's absolutely amazing to me.

I look around at my closest friends and family members (I'm adopted, so no genetic relations except for my DD, who is definitely gluten-sensitive like me), and all I see is ... health disorders that maybe, could be, probably are related to gluten intolerance. Just off the top of my head:

-- my father: constant stomach problems, horrible gas, vertigo, joint issues, depression

-- my mother: overweight, dandruff that just won't quit (the same as mine used to be pre-gluten-free!)

-- my best friend: alternating D and C (though not bad enough to see an MD about) and hypothyroid, tiredness, depression, joint aches

-- friend #2: stomach/intestinal issues, GERD, duodenal ulcers, osteoporosis, dizziness, balance issues

-- friend #3 and family: Crohn's in friend, Asperger's symptoms, behavioral issues and chronic C in friend's child #1, migraines in child #2

-- friend #4 and family: friend's father died of stomach cancer, Asperger's in child

-- friend #5 and family: friend has severe fibromyalgia, had extremely difficult pregnancy and nearly lost child at 36 weeks, child has severe ADHD/perhaps Asperger's, husband has unexplained kidney failure

-- friend #6: unexplained peripheral neuropathy in legs

... and the list could go on and on. In fact, I'm having trouble thinking of a friend *without* health problems, major or minor, that could be linked to gluten. I swear, I'm starting to think everyone I know has a gluten problem. Am I crazy, or does it seem that way to some of you folks, too?

[dandelionmom]

I've been encouraging most of my family (and even some friends!) to get tested. They all think I'm a little crazy.

[Jestgar]

I wonder if so many of us just get used to feeling like crap because of all the crap we eat (not just gluten). I didn't know how bad I felt until I didn't feel that bad any more.

[Gemini]

Maybe this is old hat to some of you, but it's absolutely amazing to me.

I look around at my closest friends and family members (I'm adopted, so no genetic relations except for my DD, who is definitely gluten-sensitive like me), and all I see is ... health disorders that maybe, could be, probably are related to gluten intolerance. Just off the top of my head:

-- my father: constant stomach problems, horrible gas, vertigo, joint issues, depression

-- my mother: overweight, dandruff that just won't quit (the same as mine used to be pre-gluten-free!)

-- my best friend: alternating D and C (though not bad enough to see an MD about) and hypothyroid, tiredness, depression, joint aches

-- friend #2: stomach/intestinal issues, GERD, duodenal ulcers, osteoporosis, dizziness, balance issues

-- friend #3 and family: Crohn's in friend, Asperger's symptoms, behavioral issues and chronic C in friend's child #1, migraines in child #2

-- friend #4 and family: friend's father died of stomach cancer, Asperger's in child

-- friend #5 and family: friend has severe fibromyalgia, had extremely difficult pregnancy and nearly lost child at 36 weeks, child has severe ADHD/perhaps Asperger's, husband has unexplained kidney failure

-- friend #6: unexplained peripheral neuropathy in legs

... and the list could go on and on. In fact, I'm having trouble thinking of a friend *without* health problems, major or minor, that could be linked to gluten. I swear, I'm starting to think everyone I know has a gluten problem. Am I crazy, or does it seem that way to some of you folks, too?

My doctor went to a seminar in New Mexico this past year and one of the topics was Celiac and Thyroid Disease. The line was long trying to get into that lecture. The guest speaker/researcher estimates that mainstream medicine has it all wrong and, according to his research, he estimates that up to 75% of the American public has some degree of GS/celiac disease. All of the mainstream health problems people suffer in this country are a result of the crappy American

diet yet most refuse to accept that food can be the root cause of the problem. I think this doctor is on to something big but in our pill popping culture, people are not going to be receptive to dietary changes that are lifelong. Those are the folks that will have chronic disease as their constant companion in their later years...it's all about making the right choices. He also stressed how important it is to be vigilant about following the gluten-free diet if diagnosed with either problem and I have to agree with that myself. I'm 48 years old and feel better than I did in my twenties...all because I gave up gluten! I love the fact I have the control and the medical profession doesn't!

[Rosebud710]

I do wonder that too!

My mother was depressed, developed type 2 diabetes, and had a plethora of health issues. Granted she was overweight, smoked, and lived a sedentary life. But I wonder if some of her depression and weight problems were from gluten? We wondered if she had an underactive thyroid, which is an autoimmune disorder, which sometimes develops from eating gluten (I have hypothyroidism). She died of congestive heart failure at 60 15 years ago next month. If we knew then what we know now, it could have changed things.

Also I know someone who has MS and I read that eating gluten could be a cause of developing this disease (again, autoimmune). I mentioned this to her and she thought it was rediculous.

I, too, know people with Crohn's, IBS, fibromyalgia, hypothyroidism and I often wonder if they changed their diet to gluten-free would it make a difference?

My doctor firmly believes that you are better off on a gluten-free diet, regardless of whether you were diagnosed with Celiac, or have an intolerance. I also know two people who are just plain cutting gluten out of their diets. One of them noticed an immediate difference in how she feels.

Very interesting!

Laura

[Sailing Girl]

'Course, I have to say that I've encouraged many of these people (and others, including complete strangers) to get testing/try going gluten-free, and with just one exception, no one has taken me seriously <sigh>. I'm sure there are people out there who *aren't* adversely affected by gluten, but I'm beginning to think we gluten-intolerant are the majority, not the minority!

And I definitely agree with you, Gemini, that the truly awful American diet is the root cause of most, if not all, chronic disease/skyrocketing medical costs. I'm just now reading "Good Calories, Bad Calories" by Gary Taubes. It's pretty dense material, but fascinating. It outlines how the health establishment bought into the low-fat, high-carb diet concept, based on very little good scientific evidence.

[wowzer]

I wonder that also. My sister is a diagnosed celiac. My father got a blistery rash after surgery. Could it have been DH cause from the iodine? He also was on the toilet after every meal. My Mom has had itch rashes and has arthritis bad.

[nmw]

Yes, it is mind boggling. 18 months gluten-free and I am absolutely convinced that a great many of our population's ills are directly related to food. Will most listen when we try to bring awareness? No. Are the doctors catching on? Slowly.

I predict a large-scale food revolution and awareness in the general populace in the next ten years.

[EBsMom]

'Course, I have to say that I've encouraged many of these people (and others, including complete strangers) to get testing/try going gluten-free, and with just one exception, no one has taken me seriously <sigh>.

Same here. I see it EVERYWHERE I look. I don't mention it that much anymore, though. My friends and family were starting to think that I was paranoid and obsessed. I even had one friend say "Every health problem in the world isn't related to gluten, you know."

Welll, yeah, I DO know, but when you see these clusters of conditions/symptoms in so many people, it's difficult not to think "GLUTEN INTOLERANCE!" I got a bit of vindication a few weeks ago....my b-i-l was diagnosed with celiac disease. That shut my in-laws up, at least....though none of the rest of them are running out to get tested.

Rhonda

[Sailing Girl]

EBsMom, no kidding -- my friends have said that to me too. And yes, not EVERY problem is related to gluten -- but so, so many are. Like, the cold my daughter just had -- obviously not CAUSED by gluten, but ... her immune system gets compromised when she gets glutened, and sometimes she gets sick then.

But you're right -- I'm starting to get a bit unmotivated to mention it because they DO think I'm crazy, mostly, and they certainly don't take me seriously.

nmw, I would LOVE to see a food revolution here within 10 years. But what can we do to make that happen?

[wowzer]

At my family Thanksgiving (husband's step sister really), the conversation came up about IBS between a couple people. I listened to them and when they were finished I asked do you think it is related to your diet. One is taking pills that she says are working. The other is covered with what I believe is a DH rash and has the "IBS" symptoms too. I went on the computer and showed her pictures of the DH which many of her spots look like and showed her the lists of symptoms, many of which she had. I think one of the two listened. I guess I am one that just doesn't believe the IBS as the problem. All those symptoms mean something. I believe they are food related.

[elye]

Since the fall began, I started keeping written track of all the people I encounter and engage in conversation who are very likely undiagnosed celiacs. I've been averaging two individuals a day. Yes, it's amazing...there are times I find myself thinking, "How on earth can this be so BIG, and still so unknown? It can't really be as pervasive as I suspect". But the more people I run into with stubborn IBS, colitis, depression, psoriasis, arthritis, and the list goes on and on and on, the more I shake my head at the implications of this illness...

[Gentleheart]

It has been tempting to see celiacs everywhere. So many people have the symptoms. But I don't say much anymore, unless asked. Everyone I have told, no matter how gently, has made it quite clear that they don't want to know. They would honestly rather live shorter lives than live with this handicap. I think we will have to find ways to make this lifestyle a lot easier before we will ever get very many people to accept it.

[elye]

It has been tempting to see celiacs everywhere. So many people have the symptoms. But I don't say much anymore, unless asked. Everyone I have told, no matter how gently, has made it quite clear that they don't want to know. They would honestly rather live shorter lives than live with this handicap. I think we will have to find ways to make this lifestyle a lot easier before we will ever get very many people to accept it.

Yes, I come across this regularly also...those who poo-poo my mention of gluten. If it is someone that I strongly suspect is affected, my stock response is this: "If you have internet access, just take a moment and google 'celiac and____'" (whatever is their main complaint--depression, joint pain, etc). I must say, though, that for those people who just refuse to hear about this potential cause of their illnesses, there are just as many, in my experience, who are truly sick and become quite excited at the prospect of getting out of their own personal hell. I just hope that I may help one person a week, or even a month...

[hayley3]

I agree.

I have the book Going against the Grain and in it she states that phytates and lectins are damaging our intestines, but I do believe that with so much sickness going on that the stomach is definitely where we should be looking.

A friend of mine has gluten symptoms and he doesn't want to hear it. But on the other side of the coin, it's sad that so many people go to the doctor just to hear they are hypochondriacs. If some result doesn't come back on a test, the doctors assume you are faking it.

[Offthegrid]

I can't even convince my family!

My hubby has all the symptoms and at least agreed to the blood test, which was negative. He won't try going gluten-free for 3 weeks to see if he feels better. Granted, he might NOT have gluten intolernace but could just be lactose intolerant, but he won't try it. I guess bread just has too much of a pull on some people.

I strongly believe my mother has it. (My brother also can't eat gluten.) She refuses to be tested. "I can't give up bread," she says. "I just have IBS. I've had it for 30 years. Oh, and I can't eat dairy." She's running to the bathroom all the time.

I also believe my hubby's mother may have it, and his sister has all but admitted to having it but won't be tested or give up gluten. And, their daughter -- hubby's niece -- is *extremely* small for her age (2), not putting on weight and just began speaking. I don't know how her diapers are, but I'd venture to guess she may have it, too.

Frankly, I just don't get it. Is a donut really worth being on the potty all day long? People are risking their health for a bagel! Oh, the insanity.

[lonewolf]

I see gluten intolerance everywhere too. Something that is frustrating for me though is that all gluten intolerance isn't necessarily Celiac Disease. So, besides Enterolab, there aren't tests for people who don't have Celiac, but should still avoid gluten. My niece and nephew both have many symptoms of Celiac (gas, bloating, short stature and more) and my SIL had their pediatrician do bloodwork/Celiac panels for both of them. They came back negative, so she knows that gluten isn't their problem. The funny thing is, that when my niece spent a week with us and ate totally gluten-free, her gas completely stopped and she said she felt great. She was 13 at the time and willing to try a gluten-free diet, since we are already doing it. My SIL helped her for exactly one meal and then said it was too hard.

I can't even begin to count the number of people I know who have symptoms of gluten intolerance, many of whom have been told by doctors, chiropracters, relatives, etc. that they should try the diet but who won't because they don't want to give up their food. It's mind boggling to think that so many people would rather be sick and take a boatload of pills than to be healthy and have to monitor their diet.

[JodiC]

Yes, it is mind boggling. 18 months gluten-free and I am absolutely convinced that a great many of our population's ills are directly related to food. Will most listen when we try to bring awareness? No. Are the doctors catching on? Slowly.

I predict a large-scale food revolution and awareness in the general populace in the next ten years.

I totally agree with you! And who better to start the revolution than those of us dealing with it today. It's time to start holding responsible the ones "in charge" of food supply!

[Ken70]

I see the same thing everyday. I had one person listen to me and her story is the one I tell to everyone else. She had a bunch of Celiac related disorders and her health was declining every day. Her doctors have diagnosed her with multiple conditions/disorders etc. over the course of two years. She told me about her problems and in exactly 2 seconds I told her she was Celiac. Long story short, she IS.

How come a guy who sells restaurant equipment for a living can be better at diagnosing this problem than all of her doctors?????

My advice, keep preaching. You will help alot more than you hurt.

[blueeyedmanda]

My uncle died about 10 yrs ago from stomach cancer caused by colitis...or so that was what we were told....I wondered if he had celiac.

My mom's mom had stomach problems for most of the time that my mom could remember. Her mom passed away in the 70's to cancer...she was told she had cancer, a month later she passed away. It was back before a lot was really known about cancer.

My mom herself has GI issues after she eats sometimes.

It took me only a few minutes to see the trend...

[sillyactsue]

I hear people complain all the time about things that can be symptoms of gluten sensitivity. I tell them. I had just about decided to stop telling my mom who hears it every time she complains about health issues she is having. The last time she started she interupted herself and said I really need to try your gluten free diet. She knew I was going to say it!

I wonder if people who are hanging so desperately onto their bread could be addicted to gluten. It sets off chemical reactions in the brain right. So it is like telling an alcoholic to stop drinking. It isn't until they hit bottom that they take it seriously. But with gluten most people don't know what it is doing to them. Soooo, the more we say it the more people will be able to refer to is someday in their future. Just a thought.

[HouseKat]

My doctor went to a seminar in New Mexico this past year and one of the topics was Celiac and Thyroid Disease. The line was long trying to get into that lecture. The guest speaker/researcher estimates that mainstream medicine has it all wrong and, according to his research, he estimates that up to 75% of the American public has some degree of GS/celiac disease. All of the mainstream health problems people suffer in this country are a result of the crappy American

diet yet most refuse to accept that food can be the root cause of the problem. I think this doctor is on to something big but in our pill popping culture, people are not going to be receptive to dietary changes that are lifelong. Those are the folks that will have chronic disease as their constant companion in their later years...it's all about making the right choices. He also stressed how important it is to be vigilant about following the gluten-free diet if diagnosed with either problem and I have to agree with that myself. I'm 48 years old and feel better than I did in my twenties...all because I gave up gluten! I love the fact I have the control and the medical profession doesn't!

I'd love to get the name of the speaker/researcher that your doc saw. I was looking around to see if I could find him, and found this about celiac and thyroid disease:

Open Original Shared Link

Kate

[rock on]

I too see it all around me. My BIL was thought to have MS & has horrible gut issues. My brother has diverticulitis & seemed interested in the gluten free diet, but then didn't care to even glance at a book I had about gluten intolerance. My best friend has horrible gut issued & a sort of anxiety/panic disorder. My mom had thyroid problems...the list goes on & on.

I think that it is important to gently steer people onto the right course by introducing the idea of gluten adversely affecting ones health. The book I had said that by discussing it with people you are actually doing a public service. The research is happening too quickly for medical schools to catch up & current doctors simply aren't trained to understand the complexity of it all. We here on the board probably have more hours clocked studying this than most doctors.

So...spread the word.

I was in the grocery store the other day & noticed a woman picking up a box of gluten free cereal. I asked her if it was good & she sheepishly told me that her doctor had just told her to stop eating wheat. We chatted for a minute & I told her how going gluten free has helped me & my husband & pointed out a soy sauce she could use for the stir fry she was going to make that night. She didn't know soy sauce was gluten free. She was very grateful & I felt great that I had been able to help her out in her first steps toward becoming healthier.

Remember, it is a public service.

[MrMark]

I agree.

I have the book Going against the Grain and in it she states that phytates and lectins are damaging our intestines, but I do believe that with so much sickness going on that the stomach is definitely where we should be looking.

A friend of mine has gluten symptoms and he doesn't want to hear it. But on the other side of the coin, it's sad that so many people go to the doctor just to hear they are hypochondriacs. If some result doesn't come back on a test, the doctors assume you are faking it.

I went to the store today and asked the pharmacist where I could find gluten free vitamins. She said that the small amount in the vitamins wouldn't hurt me. "WHAT"? I said "That little amount would definitely make me sick and uncomfortable". I said "maybe you should read up on Celiacs", then she walked off kind of PO.

I see people regularly that show many of the signs of gluten intolerance. I don't talk much about because it seems that most people aren't willing to listen unless they are very sick and can benefit from the info.

On a side note, is there a some kind of link between bi-polar disorder and Celiacs? Just curious.

[ravenwoodglass]

On a side note, is there a some kind of link between bi-polar disorder and Celiacs? Just curious.

There is a link between a lot of neuro "mental' disorders and gluten. Try putting celiac and neurological manifestations in a search engine. There has been stuff with links posted here and there is quite a bit on the net.