Anyone Know Statistics?

[Magnus]

Did I set a one day posting record? I didn't know my topic would elicit such a response! Before I ask about statistics let me first say that I completely sympathize with everyone who has had serious problems as a result of this disease and that my asking about statistics in no way is trying to diminish that. For those of you who have problems and staying gluten-free fixes it, that is great and I am glad that it is controllable. Now, about statistics... like someone (I forgot who) mentioned that if 1 in 133 people in the US have Celiac disease, that would mean over 2 million people have it. Most, I assume from the info on this board would be interested in a gluten-free diet, but you never hear about it. I know, I know, many do not know they have it, but that just leads me to the question of WHAT PERCENTAGE OF CELIACS DEVELOP SOME MAJOR PROBLEM OTHER THAN DIARRHEA OR SLIGHT DISCOMFORT?? What percent for lymphoma? alopecia? diabetes? etc. I know the risks and I also know the risks of driving a car. I drive everyday knowing that it is a convenience and that I could quite possibly be killed any day. People die every single day in car accidents but the solution isn't staying at home not driving. I am not trying to offend here as those of you WITH symptoms obviously benefit from a gluten-free diet. I am a chemist and as a scientist approach this from a statistical point of view and just want to know probabilities. As a chemist, I am exposed (minimally) to several toxic chemicals like hexavalent chromium, benzene, mercury, carbon disulfide, isocyanates, etc but realize the PROBABILITY is so small that the HIGH RISK doesn't matter. (Like the car example or the sun exposure going to get the mail or being outdoors in general.) In conclusion, does anyone know about these statistics or if they exist? Again, I know about the POSSIBLE risks. I don't have a problem with the diet if I have to. I have been vegetarian before just to see if I could (and to lose weight) and I did for years. I just don't want to if I don't have to or if the probablility is only slight. For those of you who would reply that it doesn't matter the probablility, any probability is bad, don't ever drive your cars again. Thank you.

[Emme999]

Magnus,

Hi there. There is a book called "Dangerous Grains" that deals primarily with gluten intolerance & Celiac. I highly recommend it. I'm quoting the following statistics from Appendix D in the book: "Comprehensive List of Gluten-Associated Medical Conditions". There are 187 conditions listed, so you can just forget about me typing out the whole thing But here are some of the big ones:

(BTW - I'm listing conditions that affect both sexes because I'm sure both will be interested!)

- Abortions recurrent (15% of conceptions in patients with celiac disease end in miscarriages vs. 6% in controls.

- Amenorrhea (38% of Celiacs vs. 9.2% of controls)

-Aphthous stomatitis / canker sores (up to 25% of Celiac patients may have a history of oral ulcerations)

- Arthropathies (26% of celiac disease patients with arthritic symptoms; 41% if still eating gluten vs. 7.5% of controls)

- Insulin Dependent Diabetes Mellitus (10% of all Celiacs develop IDDM, up to 8% of IDDM patients have or will develop celiac disease; many authorities now recommend that all IDDM patients be screened for celiac disease annually for several years after IDDM diagnosis)

- Hyperthyroidism (3.7% of all Celiacs)

- Hypothyroidism (8% of all Celiacs)

- Colitis, microscopic (27% with villous atrophy, 17% with celiac disease-related serology, most with HLA-DQ genetic marker)

- Dental enamel lesions (96% of celiac disease children and 83% of celiac disease adults with celiac-type color and structural defects, horizontal grooves, and/or vertical pits on one or more permanent teeth)

- Dermatitis Herpetiformis (classical non-GI manifestation of celiac disease; 25% without villous atrophy or crypt hyperplasia; instead only minor mucosal changes seen)

- Diabetes mellitus, insulin-dependent (2.6-7.8% of IDDM children have celiac disease - including silent and latent celiac disease, 10 to 100 times higher prevalence of celiac disease than expected)

- Down syndrome (prevalence of celiac disease detected is 1 in 14)

- Dysphagia (difficulty swallowing) (45-50 % of celiac disease patients)

- Abdominal pain (up to 25% of celiac disease patients complain of pain)

- Dyspepsia, esophagial reflux (5% of all such patients with gluten induced duodenal villous atrophy)

- Hyposplenism (10% of celiac disease adults, remits on gluten-free diet)

- Impotence / Loss of libido (19% of celiac disease males are impotent)

- Infertility in both men and women (2.1 million U.S. married couples are infertile - one-third male, one-third female, one third both; 18% of all celiac males are infertile; abnormal sperm is reversed; a 50% increase in conception rate occurs on strict gluten-free diet)

- Lactose intolerance (found in 50% of Celiac patients)

- Liver disease (15 times more frequent in celiac disease; 47 % of celiac disease adults and 57 % of children have evidence of liver impairment; biopsy proven liver damage has been reported in most untreated celiac disease patients)

- Lymphomas (31 to 100 times more common in celiac disease patients; risk returns to near normal with 5 years on a gluten-free diet)

- Menopause (occurs 2-4 years earlier in celiac disease patients)

- 8.5 fold increased risk of death from esophageal cancer

- 31-100 fold increased risk of death from small intestinal lymphomas

- 2.3 fold increased risk of death from all other malignant disease in celiac disease men

- Osteoporosis / Osteopenia (70% of untreated celiac disease patients with low bone density; in patients unresponsive to standard therapies - estrogen, vitamin D, calcium, bisphosphonates, calcitonin; bone density increases by 7.7 percent in 1 year on strict gluten-free diet alone)

- Thyroid disease, autoimmune (up to 13% of all CDs; subclinical thyroid disease may be reversed in some cases within 1 year on gluten-free diet)

---------------

Please note: I only listed conditions that had numerical statistics with them in the book. There are a LOT more conditions that do not have statistics with them. Obviously this doesn't mean that the other conditions are nonexistent, just that they haven't been documented and/or studied well enough.

I hope that was informative for you - AND - that it might help you to see the value of a gluten-free diet (the ONLY treatment for celiac disease).

Best wishes,

- Michelle

[tarnalberry]

Pubmed's got all the statistics you need! :-)

As a chemist, then, you'll have a greater appreciation for the fact that it doesn't require a signficant quantity of a substance to start a chain reaction - which is what happens in the body. (My background is physics, with a few classes in physical chemistry, but the year I took organic was the year I broke my leg and had codein candy to go with my boring, monotone prof. Not a good combination for finishing a class. PChem it was, after having to drop OChem. :-) )

[darlindeb25]

hey bean Dangerous Grains is a great book, isnt it and the stats are probably higher now--that book has been around for a very long time---i am one of the celiacs who has tummy pains--more intolerances keep popping up with me--you didnt have any stats for celiacs who get neuropathy and for now--the docs dont even know why there is a connection between neuropathy and celiacs, but there is a very definite one--i do have PN too and i am 49 now--went through menopause about 5-6 yrs ago--started then anyways and that is considered young by most people---great job-------by the way magnus--the celiacs who have diarrhea are on the low side of the scale--of course i had to be in that odds ---the #1 symptom of celiacs is fatigue--straight from Dr. Greens mouth--i attended a talk of his--he came to our local celiac support group---i also have the problem with my teeth as does one of my grandchildren and i cant convince his parents to have him checked--now would be so much better for him--but it is their decision, not mine--i can only give them the facts--as often as i can---deb

[celiac3270]

Wow, thanks for posting that, Bean, and Tiffany, I'll check pubmed after.

[astyanax]

i'm not sure if this has been said or not, but isn't it true that so as long you adhere to a gluten-free diet your risk of pretty much everything becomes pretty much the same as a non-celiac? this is assuming you don't already have something before you're diagnosed as well.

i just read an article the other day, through this site i'm pretty sure, that said that infertility is the same for celiac women who are gluten-free as that of the normal population (i guess previously it had been believed to be worse)

[Emme999]

Deb-

Dangerous Grains was published in 2002, so - yes, I'm sure the numbers have gone up since then. Good point

Tiffany -

How do I find statistics at pubmed?

Everybody -

What a scary post that was to make! I had glanced at those figures before, but never looked at them so closely. And as I went through the list I saw so many different medical problems that people from this forum experience and talk about so often. MOST of the problems I hear about here did not have a statistic connected with them, which is why I noted that I wasn't listing *all* of the health problems, just the ones with numbers beside them.

I love you guys!!! I feel so lucky to see such strong and beautiful people here every day. Congratulations to everyone who has "taken over" (by way of the gluten-free diet) and is controlling all of their risks!

- Michelle

[tarnalberry]

Pubmed's just a resource listing ... pretty much all peer-reviewed published papers in the scientific journals. You do a search on your terms (be it "celiac" or "gluten intolerant" and you read through the research - or at least abstracts thereof.

[Canadian Karen]

Here is an interesting article regarding this:

Open Original Shared Link

Karen

[BellaSara]

I thought Celiac caused infertility to almost all that have to suffer through it. My second week of being gluten-free my mom wanted to have a family dinner so I was forced to go to a (gasp) restautant. It turned out that the waiter's wife had celiacs. They had been trying to have a baby for years and had one a year and a half after being diagnosed and gluten free. It was great to see the proud father showing off pictures of his newborn boy.

[2old4]

BellaSara-

I suppose everyone is different and it would depend on alot of variables, but I had a baby three years ago, I wasn't diagnosed with celiac disease until last month. I will tell you, I was very ill, especially the first trimester. I would have done things alot differently if I had known. I purposefully ate whole wheat bread and other foods that hurt me, I just didn't know, I was trying to give my baby the best start possible..........Patty

[Guest Viola]

Some of us that went several (almost 30) years without a diagnosis are left with several physical problems. I have been on arthritis meds since I was 30, I'm now 59. The arthritis did lessen when they finally figured it out, but didn't go away, and of course is now getting worse again as I age. I've also got costocontritis that has now developed into permanant ridges on my rib cage. phlangitis, acid reflux to the point where it causes the esophogus (sp) to spasm and make it difficult to breath at times. However, I'm thankful that so far at least, no sign of any of the possible cancers that we can be prone to.

[BellaSara]

I've been on arthritis meds since I was 12 and that was part of the reason I went gluten-free. I'm lucky in 2 ways, 1 the meds have slowed permanent damage to my joints and 2 I self diagnosed myself to prevent further problems.

[scotties-mom]

I'm new to this also, my little guy was just diagnosed a few weeks ago. My current information is that 1% of the population has this disease, but much of those don't know. And many find out many years later when they are diagnosed with osteoperosis, cancer, etc. So my view on this is that it's better to be safe than sorry. I was told by the specialist that, as a celiac, your body treats this gluten as a bacteria and starts attacking itself, which destroys the small intestine. I would hate to be 40, and diagnosed with cancer that could have been prevented if I had eaten the right foods. I don't see the association with driving a car. The only way you could make that resemblance is if you were driving a car off a cliff, knowing that eventually it would hit bottom and you would be hurt in some way. I personally wouldn't drive the car off the cliff. Maybe there is a possibility that your airbag would keep you from a huge injury, but then maybe it wouldn't deploy....

Either way you'll get hurt.

My father passed away from cancer and I'll tell you one thing. If there is the slightest chance, even a tenth of a half odf a percent, that you could get this disease from not sticking to the diet, I would stick with the diet. This is your life. Even if you ended up with malnutrition problems, which seems to be the main cause of all of the side effects of not going on the diet, you'd be on supplements and probably have joint and body pain, maybe headaches and who knows what else. It's just worth it stay on top of the disease and keep your health. Without your health, what do you have?