How Come It Took So Long To Diagnose Me?

[2Boys4Me]

1 in every 133 people? Less than 1% of the population? That's rare. Sorry.

I've read on several internet sites and heard from various people, that 1% of the population suffers from an anaphylactic peanut allergy. 1% is rare, yet I can name at least four people off the top of my head with a peanut allergy so severe they carry epipens on them at all times.

It's not that Celiac is so rare, just that people don't die a quick immediate death, so it doesn't get much publicity. Meanwhile, since my son was diagnosed with Celiac I've discovered at least 10 coworkers or friends or parents from school who either know/are related to someone with Celiac or have it themselves.

[Guest Viola]

Does it really matter whether Celiac is rare or not? We as a group can't tollerate most grains. It does us a good deal of harm.

Having said that ....

There is still a part of the population of humans that tollerate grains very well. I don't know whether it's a large part or not ... it really doesn't matter. It matters that we take care of our diets and simply let everyone else take care of their's without us trying to tell them that "Grains are no good for ANYONE" We are not doctors, at least most of us aren't, nor are most of us experts on how various food break down, or why someone does super well on a whole grain diet while some of us don't.

I think we should just stick to our diets and if someone asks for help with the diet, then jump in and help.

[debmidge]

Whether or not one should consume wheat/oat/barley/rye should be left up to the individual,

but they should at least be exposed to the notion that gluten/wheat/oat/barley/rye can

cause problems in some individuals.

Many people are like I was; never knew that a grain could be a problem. Always thought it was

a myth used by hyperchondriacs to get attention.

After the person learns of the grain-health connection, it then would be up to them to decide for themselves.

Lack of information and ignorance are the basic problems.

Wheat/oat/barley & rye based foods aren't going anywhere anytime soon

and people will still eat them but perhaps if these people are exposed

to the grain-health connection the celiac's world will become that much

easier to accomplish by becoming more understood resulting in more food/restaurant

choices and less hassle.

[CeliaCruz]

I don't want to be confrontational, but 1 in 133 people to me is common. I've read more than one article (one in Prevention Mag.) that describes Celiac as once thought to be rare, but is much more common. Maybe you saw an older article?

Then maybe this is simply an issue of semantics. Less than 1%, to me, is rare. (Statistically, it's said that one out of every thirteen men are secret crossdressers. Is cross dressing considered common?) And as far as undiagnosed cases go, every disease is underdiagnosed. There are lots of people who don't know they are suffering from diabetes, HIV, Lupus etc. If more people had Celiac it probably wouldn't be so underdiagnosed because doctors would be way more aware of it's existence.

Pick up the paper, read the obituaries and look at what people are generally dying from. Top of the list? Heart disease, hypertension, cancer, diabetes, gun violence, HIV, alcoholism. If general gastrointestinal disorders were mentioned a lot as a cause of death then I'd argue that Celiac is probably way more common than we ever imagined. But they aren't. That's why public health officials are a lot more anxious about educating the public about the dangers of saturated fats, hand guns, unsafe sex, sodium, sugar, cigarette smoke etc. than they are about grain.

I've read on several internet sites and heard from various people, that 1% of the population suffers from an anaphylactic peanut allergy. 1% is rare, yet I can name at least four people off the top of my head with a peanut allergy so severe they carry epipens on them at all times.

But that's your experience...not a scientific study. I personally don't know anyone who is allergic to peanuts. I know the allergy exists because they stopped serving peanuts on airplanes...and replaced them with pretzels (grrrr!) -- but that's neither here nor there.

The San Francisco Chronicle (in my area) had a 3 page article about Celiac and the gluten-free diet. "Rare" diseases generally dont get that kind of recognition but I think there is still a LONG way to go before people really learn about this disease.

Rare diseases certainly do get that kind of recognition. I've seen multipage articles about Lupus in various publications. And San Francisco papers tend to be a lot more aware of food allergies/issues. I was born there. The city is obsessed with food and diet.

Whether or not one should consume wheat/oat/barley/rye should be left up to the individual,

but they should at least be exposed to the notion that gluten/wheat/oat/barley/rye can

cause problems in some individuals.

Thank you. My point exactly. When someone is sick with some mystery illness there are thousands of possible culprits. It could be diet. It could be the air we breathe. It could be genetics. It could be the paint on our walls. Yes, if someone is suffering from gastrointestinal disorders and DH, I wouldn't hestitate to point them in the direction of Celiac literature and a gluten-free diet but it's just as dangerous to assume that Celiac is behind EVERYTHING as it is to assume that gluten can be ingested by EVERYONE. There are many diseases and disorders out there and gluten is not always the cause.

[Guest Viola]

Way to go all of you ... It's great that we are having an interesting and intelligent discussion about this. I was afraid it was going to get carried away, but their are good points on both sides of the debate and it's great to read

[celiac3270]

I have to agree with CeliacMe, Rachel, and the others on this issue.

Without going into a full-blown historical summary of wheat in our society. First off, I am going to temporarily disregard the Bible with regards to timeframe, wheat references, etc.--not trying to offend anyone. OK, so humans (in some form or another) were around for hundreds of thousands of years. Wheat was only introduced to us 10,000 years ago. Hence, our digestive systems had already evolved for tens of thousands of years without being exposed to wheat. We cannot digest something like 15% of wheat. Dangerous Grains, a book you condemned with sweeping generalizations and without having ever read, illustrates the negative effects wheat has on people. I'm a skeptical person, but I believe them.

Furthermore, the "wheat" we eat today, as mentioned by others, is not the wheat of 10,000 years ago. We have engineered wheat to make it contain more gluten, make it worse for us. And actually, some doctors speculate that the most primitive forms of wheat, if cultivated today, would be OKAY for celiacs. It's this new genetically modified, gluten-packed wheat that is detrimental to general health: they're changing it because it tastes better and grows more plentifully in that form, but as a result they are changing general health for the worse.

Celiac is NOT rare. Celiac was once thought to be rare, with 1 in 5,000 thought to have it. But over the past ten years, the number was whittled down to 1/133 and now it's down to about 1/100. I do not think that 1%, or 2.2 million Americans, is rare. And for purposes of comparison: more people have celiac than Alzheimer's (2 million). The number of people with celiac is comparable to those with parkinson's, autism, ulcerative colitis, and chron's combined. There are more Celiacs than people with rheumatoid arthritis (2.1 million). More people with celiac than Lupus (1.5 million) and multiple sclerosis (330,000). There are more celiacs than type 1 diabetics (1.7 million). Or to put it further into perspective: 6% of women with unexplained infertility have celiac, 6% of people with type 1 diabetes have celiac, and 12% of people with Down's syndrome have celiac. It is by no means rare--it is certainly underdiagnosed and underrecognized.

Pick up the paper, read the obituaries and look at what people are generally dying from. Top of the list? Heart disease, hypertension, cancer, diabetes, gun violence, HIV, alcoholism. If general gastrointestinal disorders were mentioned a lot as a cause of death then I'd argue that Celiac is probably way more common than we ever imagined.

Yes. Well, that's because, to be perfectly technical, no one dies from CELIAC. They die from complications that are celiac-related: cancers (lymphoma), diabetes, kidney/liver diseases, various neurological problems, etc. There are lists on this site... well, might as well copy and paste--I acknowledge that not all contribute to death (such as short stature), but I'm emphasizing that celiac causes other problems, so someone will say "Died of malnutrition" rather than celiac--because it was malnutrition as a result of celiac... etc.:

* Abdominal Distention (children)

* Abdominal Pain, Steatorrhea

* Anemia - Folate-Deficiency / Iron Deficieny / Pernicious

* Arthralgia or Arthropathy

* Arthritis - Rheumatoid

* Carcinoma of the Oropharynx, Esophagus, and Small Bowel

* Collagenous Sprue

* Dermatitis Herpetiformis

* Diabetes (Type 1) and Celiac Disease

* Diarrhea

* Down Syndrome

* Enteropathy-Associated T-cell Lymphoma

* Failure to Thrive (children)

* Hypertransaminasemia

* IBS - Irritable Bowel Syndrome

* IgA Deficiency

* IgA Nephropathy

* Kidney Disease

* Liver Disease

* Low Bone Mass and Celiac Disease

* Microscopic Colitis / Collagenous Colitis

* Nerve Disease and Celiac Disease

* Osteomalacia, Osteoporosis and Celiac Disease

* Recurrent Aphthous Stomatitis, Recurrent

* Refractory Sprue / Celiac Disease

* Sjogrens Syndrome

* Thyroid Disease (Autoimmune)

* Ulcerative Jejunoileitis

* Addison's Disease

* Alopecia

* Anxiety and Depression

* Ataxia

* Attention Deficit Disorder / ADHD

* Autism and Celiac Disease

* Autoimmune Hepatitis / Chronic Active Hepatitis

* Bird Fancieris Lung

* Brain White-Matter Lesions

* Cerebellar Atrophy

* Chronic Fatigue Syndrome (myalgic encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS)

* Crohn's Disease

* Congenital Heart Disease

* Cystic Fibrosis

* Dental-Enamel Hypoplasia

* Dyspepsia

* Epilepsy (with or without cerebral calcification)

* Farmeris Lung

* Fibromyalgia and Celiac Disease

* Fibrosing Alveolitis

* Follicular Keratosis

* Gall Bladder Disease

* Gastroparesis

* Head Aches (Migraine)

* IBD - Irritable Bowel Disease

* Impotency

* Infertility

* Inflammatory Bowel Disease

* Lung Cavities

* Multiple Sclerosis and Celiac Disease

* Myasthenia Gravis

* Pancreatic Disorders / Exocrine Pancreatic Insufficiency

* Peripheral Neuropathy

* Polymyositis

* Polyneuropathy

* Primary Biliary Cirrhosis

* Pulmonary Hemosiderosis

* Recurrent Pericarditis

* Sarcoidosis

* Schizophrenia / Mental Problems and Celiac Disease

* Scleroderma

* Short Stature, Delayed Puberty

* Small-Intestinal Adenocarcinomas

* Spontaneous Abortion and Fetal Growth Retardation

* Systemic Lupus Erythematosus

* Thrombocytosis (Hyposplenism)

* Thrombocytopenic Purpura (ITP)

* Thyrotoxicosis

* Vasculitis

* Vitamin K Deficiency

[CeliaCruz]

Dangerous Grains, a book you condemned with sweeping generalizations and without having ever read, illustrates the negative effects wheat has on people. I'm a skeptical person, but I believe them.

I never condemned the book. I merely pointed out that it's simply a book. All of the data that you are quoting is from this one book. Just because someone "wrote a book" at some point doesn't make his views indisputable. There are dozens of books, for instance, claiming that the holocaust didn't happen.

Wheat was only introduced to us 10,000 years ago. Hence, our digestive systems had already evolved for tens of thousands of years without being exposed to wheat. We cannot digest something like 15% of wheat.

Okay, but do you even realize that lots of the foods that we eat these days are relatively new? If wheat is "dangerous" because it's "only" 10,000 years old, then how do you explain why many of us are able to eat corn and tomatoes...which were only introduced to our diet about 500 years ago?

And what foods does the author consider better than grain, having been around longer than 10,000 years?

Spelt? An ancient grain...yet Celiac's can't digest that either.

Beef? Tons of books written on the evils of red meat.

Eggs? High in cholesterol. Lots of books, journal articles etc. written about that issue

Nuts and seeds? Lots of people are DEATHLY allergic to a variety of nuts.

Milk? Need I even go there?

I'm sure that a lot of these "facts" sound plausible if you aren't very well read on the subject of nutrition and public health and are only looking at this from a "Celiac" point of view, but if you compare these assertions to the assertions found in thousands of books published every year about various foods, it's easy to see why the theories of "Dangerous Grains" aren't widely accepted by the mainstream.

Yes. Well, that's because, to be perfectly technical, no one dies from CELIAC. They die from complications that are celiac-related: cancers (lymphoma), diabetes, kidney/liver diseases, various neurological problems, etc.

And these complications are ALL from Celiac? Since you just claimed that only 1 in 133 people have Celiac, then how are you arriving at this conclusion that everyone is dropping dead from Celiac? I am aware that people don't official die from Celiac -- just other complications arising -- but it's still very sketchy to argue that Celiac is behind all these other deaths. Celiac can lead to colon cancer, but only a fraction of people with colon cancer suffer from Celiac.

And for purposes of comparison: more people have celiac than Alzheimer's (2 million).

Well, yeah. But Alzheimers is a degenerative disease. In other words, people develop Alzheimer's late in life. People who are Celiac are Celiac for most, if not all, of their lives and would test positively for it. So statistically it stands to reason that Alzeimers isn't going to show up as often as Celiac since it only affects people who are middle age or older. People who develop Alzeimers later in life aren't going to show up in those statistical analyses.

Again, consider the context of these "facts" and try reading other text on the subject of food and nutrition. Reading one book about grain is not a full education on these matters.

[chad from fla]

Less than 1%. To me, that's rare.

This is all starting to sound like that song in Team America: Everybody has AIDS, AIDS, AIDS!!!

I know it's tempting to see Celiac everywhere because it effects our own lives so dramatically, but on the grand scale of things it's not that common.

Instead of trying to convince ourselves that everyone suffers from the same disease we do, we should be educating the public about what we are suffering from. That way, the people who ARE suffering (and the doctors who treat them) will have better resources at their disposal. Spouting a bunch of crackpot theories about the intrinsic evils of wheat is not constructive.

[Rachel--24]

Instead of trying to convince ourselves that everyone suffers from the same disease we do, we should be educating the public about what we are suffering from. That way, the people who ARE suffering (and the doctors who treat them) will have better resources at their disposal. Spouting a bunch of crackpot theories about the intrinsic evils of wheat is not constructive.

Nobody here was saying (or thinking) that *everyone* has Celiac...thats complete nonsense. I think you've missed the point.

[Rachel--24]

And these complications are ALL from Celiac? Since you just claimed that only 1 in 133 people have Celiac, then how are you arriving at this conclusion that everyone is dropping dead from Celiac? I am aware that people don't official die from Celiac -- just other complications arising -- but it's still very sketchy to argue that Celiac is behind all these other deaths. Celiac can lead to colon cancer, but only a fraction of people with colon cancer suffer from Celiac.

I don't think celiac3270 was saying EVERYONE who suffers from these conditions has underlying Celiac. We all know not everyone dies from Celiac. We also know that Celiac CAN in fact cause all of those things on that list...and we also know that there are WAY more people out there who have Celiac and don't know it compared to those who are diagnosed and on the diet. These people are at risk for developing one or more of those conditions. Its a fact that celiac disease is underdiagnosed...its not as rare as once thought. To say that this is SO rare and uncommon and basically feeling sorry for yourself because you cant have wheat is not helpful or fair to those who are out there still sick because they've never heard that wheat could possibly be bad for them. They've never heard of Celiac. Once again...I'm not saying EVERYONE should stop eating wheat...nor am I saying that EVERYONE has Celiac.

One more thing...My doctor told me that Celiac is on their top 10 list of COMMON diseases which are misdiagnosed. Its not that the disease is rare...its just RARELY tested for. In fact....I was the *first* person my doctor EVER tested for celiac disease.

[sillyyak]

I am newly diagnosed with sprue. I have to tell you for me was a bit different than most of the replies I have seen here. I went to Asia in August and picked up a virus over there. I came back to the states, got treated for the virus but sprue symptoms lingered.

Basically I was asymptomatic with sprue for 30+ years until my recent return from Asia, when the virus triggered the onset of the sprue and all of the symptoms, which hit me like a ton of bricks in a span of 3 months. I had 7 ER vists and 2 hospitalizations over 12 weeks and it was not until the 2nd hospitalization (after collapsing numerous times on the hospital unit and appearing to be physically severely dehydrated and malnourished, receiving oxygen and pratically on a respirator) that a GI consult was brought in and I had the endoscopy that led them to do the RIGHT blood tests. Because I had the virus from Asia, the doctors thought that I was still sick from the virus I caught in Asia and at numerous points had asked me "What do you think you have?" or stated "We may never know what you have". I had countless tests done (cat scans, blood cultures - over 150 vials, chest xrays, gallium scan) ALL of which came back NEGATIVE, both to my frustration and to theirs as well. So despite all of their efforts, they had nothing to go on except that I was collapsing and was APPEARING malnourished and dehydrated because all of my blood work was the blood work of a "healthy person"

I am angry at them for not putting 2 + 2 together, to be honest and very angry that they could not figure out what I had and was subjected to countless tests all of which rendered no clues as to what was ailing me. I was further anger when they told me I have sprue and that there is no cure for it except to follow this diet. When I read that it took sometimes over 10 years to diagnose other people on this list serve, I cannot believe it because I cannot imagine having the hard hit symptoms I had for 3 months for years and years.

[tyr6]

Hi,

Is there any Docor anywhere in the world who performs the Gluten Rectal challenge at this time ?

(this test was mentioned in Dangerous grains, and elsewhere on the forum, but noone knows where it's done !!)

At Dr.Marsch's previous clinic in Manchester they don't do it anymore.

Thankyou very much !

[debmidge]

Someone mentioned earlier that other diseases could be cause of illness and not Celiac (my condensed version of the prior posts).

My husband had un or mis diagnosed celiac disease since 1977 and in 1992 my father got same symptoms and naturally concluded that he had IBS (remember, during 1992 my husband was under the diagnosis of IBS/colitis/irritable bowel syndrome and not celiac disease).

Well my Dad lost 25 lbs and was sick and had D all the time.

He went to a stooge of a doctor who diagnosed him as having severe stress.

Gave him prescription immodium. After about 3 weeks on immodium and no relief I told Dad to go to gastro for full tests; and he refused as he "liked HIS doctor."

What I didn't know at the time was that Dad had pancreatic cancer and was probably terminal anyway (by the time you get the D it's usually fatal); but the doctor he was going to:

1) didn't run any tests, like liver scan or upper/lower GI - Saw my Dad every so many weeks, ran one blood test to see if he had Hepatitis and strung him along on immodium for almost a year!!

2) didn't refer him to a gastro until the cancer was inoperable (there was a slight possibility that had my Dad been diagnosed sooner, he could have had a special pancreas tumor surgery and could have lived several more years (he was diagnosed with cancer at age 53, so he was young and healthy and would have withstood this more complicated surgery)

3) treated the symptoms did not do an analysis for a cause

4) obviously would have missed celiac disease - heck he missed cancer!!

So in addition to the medical profession screwing up with my husband, they did the same thing to my father.

I must be honest now and say I do not want to carry on a posting conversation with anyone who feels that they have to convince me I am wrong about inept doctors (that there are inept people in every profession, don't single doctors out, etc.) as was done a a couple of other threads in the past. My feelings are my feelings; no one who is reading this could have known my mind without walking in my shoes in these situations and shouldn't dare to assume to know and I will take criticism of my opinion as an aggressive stance. I do not care to carry on this thread with "contrarians." If you do not agree then just ignore this post. I am very serious about this because it's bad enough to have to explain this position to people who do not have health problems, let alone get undue criticism from those who have had health problems.

D.

[jerseyangel]

D--First let me say how sorry I am to hear of what happened to your Dad. You won't get any disagreements from me about your stance on Drs. I did finally find one that would listen to me and do the appropriate testing, but it took 20 years and a lot of misdiagnoses and inappropriate medicines that have left me with many long term side effects in addition to the long undiagnosed Celiac. I wish the best for your husband (and you)