How Big Is This Iceberg ?

[Dan300]

I know that Celiac disease of the gut is just the tip of the Iceberg of the gluten and other food intolerance diseases that are plaguing humanity . It wasn't until this past March that I learned about celiac disease , I thank Celiac.com and this forum for a great deal of what I've learned. I've probably had celiac problems for 50+ years, like being short and asked to join the wrestling team my 1st year of high school, they needed a little guy for the lightest ( 92lb ) bracket, I weighed 89Lbs !! I've had skin problems for 30+ years, been going to doctors for 25 years , kept hearing systemic dermatitis----- take these antibiotics... about 4 years ago went to the V.A. figured it might be Agent Orange from Vietnam . they said not agent orange. in May they took the wrong kind of skin biopsie again even after I told them I suspected Dermatitis Herpitiformis. when it came back no infection I asked does this mean it's an autoimune disease, they said oh no it must be your nerves , quit scratching???? In April I started my Gluten free learning curve, and after a while I realized why you need to be 100% gluten free. my D.H. is 90% better (still eat a lot at resturants ) and have lost about 30 lbs as I had become obiese thru the years,,, another symptom doctors don't recongnize. Bottom line I'm self diagnosed but I believe it's the answer as a number of other problems have also resolved... sorry about the long story to get to my question, as I have read about the many symptoms of celiac disease and Gluten/food intolerances with the autoimune problems that come with them,,,, I can't believe what I'm seeing......... I'm starting to feel that half the people I know have something going on thats related to the unrecognized "Iceberg" of a problem !!!!!!!! when I went to my son's house for thanks giving dinner I almost cried as my 3 year old grandson had a red sore the size of a pencil eraser on his face (cheek) with a couple of other small red marks a few inches away, I didn't say anything. some one else asked about it, my daughter inlaw said that he had a pimple come up and that he had scratched it... I'm starting to think that I'm getting paraniod about how big this problem really might be. How big is this Iceberg ? Dan

[ravenwoodglass]

How big is this iceburg? Real Big. Celiac is rampant in this country and it amazes me how little many doctors know about it. I was undiagnosed for a really long time also and had a lot of systems effected so I know first hand how many body systems it can effect. I can't count the number of doctors who told me to learn to live with the pain. I also couldn't believe how much resolved gluten free. The NIH estimates that up to 98% of us are misdiagnosed or undiagnosed. It is so sad in this time when health care costs are skyrocketing and Americans are the unhealthiest population in the world that so few doctors even think to check for it.

It is also heavily genetic so I would advise all your relatives to get tested. Do mention it so the little one can be tested, he may have other issues both physical and mental that you aren't aware of.

[GFinDC]

I have read that about a third of the USA population has some of the genes for celiac. But only about 1% will actually develop celiac disease. Quite a discrepancy there so it seems they don't really know why some people develop the active disease but most don't. There is a video on the NFCA by a Mayo clinic doctor who says the rate celiac appears to be rising. The general reccomendation I've seen is to test all first degree relatives for celiac. They say the testing in young children is not as reliable as though.

[lovegrov]

Early on a lot of people suddenly think they start seeing celiac in every other person. Reality is that no more than 1 percent of people have or will have celiac. A red spot on your grandson's face does not mean celiac. Occasional diarrhea or fatigue does not mean celiac. A pattern of some of these things, especially in people with a family history, means check it out. So, yes, you are indeed being a little overly attentive to the issue. There are those who argue that wheat is bad for all humans but I'm talking about actual celiac here.

BTW, all of your first-degree relatives should get tested, and that means your son.

richard

[carsondcat]

It's called an iceberg because no-one knows how many undiagnosed Celiacs there are.

Celiacs is on the rise because as more people become aware of it, more people are getting themselves tested for it, because the symptoms of Celiac Disease hits a chord with them.

1% of over 308,000,000 people is still a lot of people (in the US alone).

When I was first diagnosed with celiac disease (9 years ago) , 1 in 250 people had celiac disease where I lived. That is now down to 1 in 130 people and in the specific area I live it's actually 1 in 100 people, and that is because the local teaching Hospital has taken and interest in Celiacs Disease and are carrying out some major and interesting studies (this in a total population of 4,000,000).

Both my children have had negative blood studies and although I have told them that there a false negatives because they are now both adults both are refusing to get retested, both have problems when eating certain foods but just chose to ignore the fact that they could have celiac disease. One is overweight and the other skinny deathly pale and has many other allergy related problems, both are short in stature as I am. But what can you do...

[GottaSki]

Hi Dan-

I was 43 years old at diagnosis after at least 25 years of reporting very mild versions of the same symptoms that eventually became so bad I refused to hear "All your tests are normal - i.e. go-away" from one more doctor. It still took over a year and 50 blood tests for someone to finally run the tTG IgA test that started me on the path to celiac diagnosis. The only test over the years that indicated celiac for me would have been my constant anemia - for which each doctor would put me back on iron supplements.

Unfortunately our stories are not uncommon. Most recent statistics indicate that 1 in 133 people are Celiac - yet only a tiny fraction of those are diagnosed.

I have been comforted on celiac.com to hear stories of young 0-25 being diagnosed -- each time I think - How wonderful that they don't have the years of frustration and mysterious illness ahead of them!

As far as how big the iceberg is, I pose this question -- Who (celiac or not) feels better when eating a gluten filled diet? -- I know that my non-celiac husband and son feel better now that most of the gluten has been eliminated from their diet.

I agree that you should encourage your children to be tested. Unfortunately, gluten-free can be a hard sell for many.

-Lisa

[Glamour]

I meet more and more people that tell me wheat does not agree with them. Usually they ask me why I am gluten-free and I tell them about the DH and swollen abdomen. They either have digestive issues, big tummy or a combination or some sort of skin issue. It is amazing.

Last night at the Whole Foods Juice Bar, a beautiful young girl asked me why I was getting only vegetable drinks. I told her about cutting sugar and skin issues. She told me she had acne and eczema type rash and had removed wheat and was mostly clear now.

The juice bar was insanely busy last night and it is really catching on at WF/

[OptimisticMom42]

Hi Dan-

As far as how big the iceberg is, I pose this question -- Who (celiac or not) feels better when eating a gluten filled diet? -- I know that my non-celiac husband and son feel better now that most of the gluten has been eliminated from their diet.

-Lisa

Same here! My household.....

myself age 43 - diagnosed celiac

my son age 18 - diagnosed celiac

son #2 age 17 - lots of symptoms mostly gluten free now because we don't eat it at home

#2's girlfriend age 17 - diagnosed celiac

daughter age 15 - gluten free, soy free by choice - many symptoms have gone away

my fella age 43 -not a celiac but has learned to cook gluten free because he loves us

That's 5 outa 6 from three families.......

I think it's very prevalent. We are not "special" and that will upset some who have gotten a little high on themselves. They won't want to hear that there is nothing wrong with us. Humans should not eat grains!

[OptimisticMom42]

when I went to my son's house for thanks giving dinner I almost cried as my 3 year old grandson had a red sore the size of a pencil eraser on his face (cheek) with a couple of other small red marks a few inches away, I didn't say anything. some one else asked about it, my daughter inlaw said that he had a pimple come up and that he had scratched it... I'm starting to think that I'm getting paraniod about how big this problem really might be. How big is this Iceberg ? Dan

Why didn't you say anything? Not a judgement just curious. My kids say I'm relentless in my badgering of them to be careful not to eat gluten.

[nasalady]

The iceberg is HUGE....

When I first discovered that I felt better gluten free, and read about the role of celiac disease in opening the door for other autoimmune diseases to develop (Open Original Shared Link), I warned my entire family via email that they should seriously consider going gluten free.

My father had rheumatoid arthritis, two of his sisters died from complications of lupus, one of my daughters has Hashimoto's thyroiditis and her daughter has celiac disease diagnosed via biopsy. Another of my daughters has lupus and Addison's disease and my adopted daughter (biological granddaughter) is definitely gluten sensitive if not celiac. My niece has Grave's disease. The whole idea of going gluten free to prevent "leaky gut" from triggering more autoimmune diseases is particularly important for families with a medical history like mine!!

But it isn't just limited to my blood relatives!! I put my entire immediate family (me, husband, two adopted kids = my biological grandkids) on the gluten free diet last January. My husband drank some beer after being gluten free for several weeks and promptly broke out with a horrible case of dermatitis herpetiformis! He had absolutely no idea that he had a gluten problem until that moment...he was just eating gluten free to make things easier for me! So surprise! he has celiac disease too!

I agree with previous posters....humans are not designed to eat grain, period!

[Dan300]

Thank you everyone for responding,,,my family is suportive and trying to help me with gluten free food at family dinners, I did show them the DVD "Unlocking the mystery of Wheat and Gluten intolerance" by Thomas O'Bryan. so they are awhare that It's something to watch out for but they or I did'nt have any Idea how serious this is. I did'nt say anything about my grandson as I did'nt want to say I told you so. I'll give it a couple of weeks and see what happens. I know official celiac disease is now 1% and maybe 2% over 60. I remember 15 to 20 years ago that my friend at work had his young daughter was having these serious stomach intestinal problems where she could'nt eat some kind of foods and was in and out of hospitals. did'nt know what the condition was at that time, just felt sorry for them and the problems they were having. in the past while shopping at whole foods I noticed the gluten free products and thought that a lot of people must be following one of the hollywood diets. last december I was tested for sleep apnea and started Cpap, any Darlindeb 25 had posted on the cpap forum and mentioned celiac disease so I looked it up on the web and they showed skin problems as one of the symptoms, I had been looking for my skin condition on the web for a log time and that was the first time something looked like what I had. I know every cronic disease might not be caused by Gluten but from what I've been researching it maybe. doctors should be testing for this or at least telling their patients about the possibility if nothing else is helping so they could try a food elimination diet!!! now I think I'm seeing it every where . my mom came to live with me a while back, she ended up dying of complications of type II diabetis at 68, she had nuerapathy and was always going from Imoniom AD to doculax, she also had skin lesions on her shoulders and was obiese, my sister has been fighting thyriod problems, my oldest son 38 has been fighting depression bipolar problems for years, one of my lady freinds (short stature) has been diagnosed with ostopiena, she was taking ostomax but it made her feel worse. one of her neices is fighting bipolar. another lady friend has ruhmatoid atheritis pretty bad witha noticing bloated stomach and had stomach surgery last winter, I think ulceritis colitis. Her sister (both short stature) has the D&C problem,,, with her younger son 33 having severe IBS problems and her older son 40 had to move back in with her as he has MS and has to use a walker....one of my aunts died of ALS as did a coulpe of my other realitives........one of my daughter inlaws has a sister with MS.......and last week I saw one of my buddy's wife at the grocery store , in the past I had noticed that their son who was 5 or 6 at the time looked about the size of a 3 year old........she asked how I was doing I said better since I went on a gluten free diet because of my skin and that I might have celiac....she said that they took her son to the doctors because he was so small and that he was also having stomach problems,,she said the doctors said he did'nt have celiac as his test were negative.(can you believe that) I said look I'm not a doctor but these test come back negative alot of times,,, told her to please do her own reaserch on celiac and gluten...... this past week with her son , my grandson and my lady's 40 year old with MS has really got me agrivated with the medical profession.........I know there may be other causes for all this but at least gluten should be on their radar sceen,,,,,,,,,,Dan

[lovegrov]

Dan300, it's much easier to read posts that are broken into paragraphs. Huge blocks of unbroken copy give most people headaches. In addition, a certain percentage of people simply skip what you have to say, as I did on your last post in this thread.

richard

[Dan300]

sorry, I'm new to this and tried using spacing and paragraphing but when I add reply it condenses it all together, thanks Dan

[GFinDC]

Hi Dan,

I agree it is somewhat frustrating the amount of inertia the medical profession seems to have regarding celiac diagnosis. I think it may be improving some lately, but there is a long way to go on it. What seems really odd about it is that celaic is one of the easiest problems to deal with medically as far as making an improvement in people's health and also preventing future health issues. Celiac is what I would call low hanging fruit, easy to fix by proper diet changes and yet it is often not diagnosed until years of suffering have gone on. Maybe the doctors are too hung up on finding a tough nut to crack/complicated issue and can't see the simple answer in front of their noses.

It really is a head scratcher. When you think about how much money in health costs are spent needlessly each year by people who could vastly improve their situation just by changing their diet. And they say our government is trying to save money on health costs? They could take a look at celiac diagnosis and go a long way on it for not much effort. A series of public service announcements would sure help. And routine testing for children with family histories of autoimmune disease would help.

But we can help by spreading the word about celiac to our friends and loved ones. Everyone who hears about it is one more informed person after all. We can't make other people follow the diet, but at least we can let them know about possible benefits and risks.

There are advocacy groups around like CSA and GIG and NFCA that work on these issues. Things seem to be changing for the better, it is just slow slow slow.

[Quohelet]

After going gluten-free I started noticing symptoms in people all around me, too, and started to suspect we were not meant to eat grain.

Then, two of my family members cut out all preservatives, artificial additives, and hydrolyzed proteins and carbohydrates; their symptoms evaporated, they lost weight, and they have more energy.

I followed suit, and have noticed that I'm even less bothered when I get glutened.

So perhaps it's more about all the junk in today's food than the grains?

[luvs2eat]

I was the ONLY one in an extended Irish family of about 20. Thankfully, I was diagnosed very quickly... only 2 months after developing unrelenting diarrhea. 3 or 4 years later, my 25-year-old daughter started exhibiting the same symptoms. She's been gluten-free since.

Recently, my youngest daughter was diagnosed and wasn't too upset about it, having been thru it w/ me and her sister. Plus, she lives in Portland, OR, where there are gluten-free bakeries and entire restaurants! But now she's taking it even further, by having to deal w/ interstitial cycstitis, which is making a gluten free diet look like a piece of cake!

I told my oldest daughter to enjoy gluten while she can. I'd say the chances of her developing it are pretty good.

Older sister has many food allergies, but has been tested negative for celiac. She lives in France and just isn't willing to give up the amazing breads there. Older brother had episodes of eczema on his hands and noticed they lessened or disappeared when he simply cut down on wheat, but he's not been formally tested.

I've polled first cousins and no one else has it!

[momxyz]

Hi Dan, from another self diagnosed probable DH'r.

Your observations are right on, and symbolize both the potential size of the problem, as well as the difficulty in getting others to see what is in plain sight.

My daughter was tested for Celiacs when she was 11 (6 years ago); tests were neg. I accepted the dx and advice (you don't have to worry about wheat) at the time... didn't have a reason not too. But a year and a half ago there were a number of "issues" that she experienced. We sought and received standard medical treatments...but some things got worse before they got better. I finally connected the dots, and encouraged her to try a gluten free diet. Almost 7 months down the road, many of her issues have resolved or are resolving...she is a heck of a lot happier and healthier.

While watching her start her recovery, I had one of those "duh" moments. I had had a persistent rash on my legs for 10 months....no topical helped it...til I went gluten free too.

The familial connection is significant, I hope sometime you work up the courage to speak to your son or DIL to suggest the connection.... I have several relatives who have some of the same issues that either I or my daughter has/had. My niece is the only one who has figured out the gluten connection; she, her mom and I have discusssed this in relation to our family on many occasions. Its been mentioned to my brother, who also has a rash on his legs.... But as the saying goes, you can lead a horse to water, but you can't make them drink.

[momxyz]

After going gluten-free I started noticing symptoms in people all around me, too, and started to suspect we were not meant to eat grain.

Then, two of my family members cut out all preservatives, artificial additives, and hydrolyzed proteins and carbohydrates; their symptoms evaporated, they lost weight, and they have more energy.

I followed suit, and have noticed that I'm even less bothered when I get glutened.

So perhaps it's more about all the junk in today's food than the grains?

I do agree that overly purified, refined foods, as well as a lot of additives, also can have a detrimental effect, so I am not surprised that your family members (and yourself) experienced a positive difference.

But don't discount the effect of gluten.

Before I went gluten free, I had for several years, cut out every refined product I could and emphazied whole, fresh, natural foods. That did improve my over all well being. But it was only the elimination of wheat and gluten containing products that eliminated my rash. And, a few weeks after going Gluten free, I experienced a significant exacerbation of my rash (which had been resolving) after eating pasta at my brother's house.....