Celiac's Vs Gluten Intolerance Diff?

[caek-is-a-lie]

I am convinced that the reason for this is that medical science is driven and funded by the pharmaceutical industry.

I am a scientist and I can tell you this is not entirely true. Medical science is also heavily funded by the government, specifically the NIH. The last 8 years have seen a serious erosion of scientific funding by the Bush administration, who didn't think science was important or compatible with their fundamentalist beliefs, and current economic times are making grants even harder to come by. A lot harder. We're just trying to keep our jobs right now.

There are probably a lot of scientists that would like to work on Celiac that may be having a difficult time obtaining funding to do their work, and it has nothing to do with pharma companies. So until the economy gets better, you'll have to wait for most of these great discoveries. It's going to take a few years longer than it otherwise would have, so please be patient. As a patient, I know science is agonizingly slow as it is. I hope you'll bear with us.

[Jestgar]

I am a scientist ...

cool. me too. what do you do?

[caek-is-a-lie]

I'm starting to think, in relation to my second paragraph that maybe Celiac's was incredibly rare, but as wheat flour usage grew so did it. When Enriched flours came out it skyrocketed.

Sorry for the third post in a row!

You are right, but there's even more to it than that. I was reading yesterday about studies on the developing immune system and the effects environmental toxins, viruses, and allergens have on the developing fetus's immune system, and that a lot of our autoimmune problems today and other diseases, whether they be in children or adult-onset, are caused by things babies are exposed to before they are born. For instance, diesel exhaust is linked to asthma.

Basically, if you are genetically predisposed to something, it can get triggered in the womb but not manifest itself until decades after you're born. Even Alzheimers! Celiac was even mentioned in the article, as was Autism. Considering the amount of toxins we have introduced to our environment in the last 100 years, I do not wonder why we have more incidences of diabetes, autism, celiac, alzheimers, adhd, etc., now than ever before in the history of man (and woman!)

So, add a world-wide excess abundance of wheat flour because it's cheap, combined with already compromised immune systems due to environmental factors, and you will see more cases of all these diseases across the board. And I would bet money that's not even the end of the story.

We are slowly destroying our species. If we go extinct, I have no doubt it will be by our own hand.

I don't have the link to the article here...it's at work, but I'll try to post it soon.

[Fiddle-Faddle]

I am a scientist and I can tell you this is not entirely true. Medical science is also heavily funded by the government, specifically the NIH.

The members of NIH have serious financial ties to the pharmaceutical industry, according to mercola.com and several other sources, including Senator Dan Burton. The pharmaceutical industry is the strongest lobby there is.

I'm married to a scientist (who spent many years in DC, working for the government), so I'm not totally out of the loop!

I totally agree with your take on gluten intolerance.

[caek-is-a-lie]

Thanks, Fiddle-Faddle, and I believe you. You have a good point. Lobbying is a big problem in DC, and I don't believe for an instant that the NIH is immune. And don't get me started on the FDA. But at least when the NIH funds something, the pharmaceutical companies aren't right there in the lab dictating what we do. Maybe they influenced who got what money, but that's the end of it. We do what we do and that's it. When they're directly funding things, it gets much more complicated, and sometimes downright illegal. So sad what our country has become...

[Tim-n-VA]

Here's my take on it, and you are all free to differ.

Everyone here is gluten intolerant. It is the big umbrella we all sit under. None of us can tolerate gluten.

Some of us are Celiac, and our immune system is attacking our small intestines. Some of us have neurological problems, and our immune system is attacking our brains. Some of us have DH, and our immune system is attacking our skin.

But it is all because we cannot tolerate eating and/or touching gluten. So, no one is "just" gluten intolerant. We are all very gluten intolerant and we call it different things based on what part of the body it hurts most.

I would strongly agree with one caveat. I don't think - and I don't think you intended to imply - that your list of ways to be gluten intolerant is complete. Classic allergies are one example of an intolerance that is not the immune system attacking the body.

I would prefer the term gluten sensitive only because in some usage of intolerant is a digestive system inability to process a food (lactose intolerant).

[ravenwoodglass]

There are probably a lot of scientists that would like to work on Celiac that may be having a difficult time obtaining funding to do their work, and it has nothing to do with pharma companies. So until the economy gets better, you'll have to wait for most of these great discoveries. It's going to take a few years longer than it otherwise would have, so please be patient. As a patient, I know science is agonizingly slow as it is. I hope you'll bear with us.

I think one of the things that bothers me most is that there is a lot of research out there that is valid and way ahead of the research here in the US when it comes to celaic. But doctors here in the US seem clueless that it even exists. The reason in my opinion is that it is not controlled by drugs. We are very much a pharmacopic society we want instant fixes and doctors are very reluctant to even suggest a change in diet, they think we won't listen anyway. I saw this with celiac (it delayed my diagnosis by many painful years) and I saw this when a doctor told me I had diabetes. I learned nothing from the Diabetes educator, in fact I was handed a slew of papers, told to use them to line my bird cage and a script. When I asked about dietary changes I was told nothing other than to use sugar substitutes and take the pills, no other dietary changes were needed. I had to research stuff like a low glycemic diet on my own. My doctor was very upset that I refused to take the drugs and even more upset when I told him that with an A1C under 6 I disagreed with whether I was diabetic or not.

Doctors and researchers in this country really need to open their eyes, look at some of the research in other countries and try to trust us to be able to handle the changes we need to do. Or at least tell us about them.

[leslieg]

"We are slowly destroying our species. If we go extinct, I have no doubt it will be by our own hand."

As I've been cramming information about celiac for the past few days, I've thought more than once that this feels like our version of melamine-in-baby-formula.

My mom has always said she was "addicively allergic" to wheat. No one ever tested her for celiac. Now she has Altzheimer's. Is it related? I've spent a fortune on mental health care for me that, frankly, hasn't worked. I have an out-of-control child who has been to jail on assult charges and can't keep a job. Severe ADHD. But he would get so angry if you tried to prevent him from eating junk food. I have a child with spina bifida -- talk about a huge cost on every level. I took prenatal vitamins, but were they absorbed? My 7-year-old might be asperger's, or maybe just ADHD with sensory issues, and already we've paid thousands for therapies ... but he's had intestinal issues for years and has been followed by a GI ... and was never tested for celiac's. As I researched his issues I kept thinking he had such clear signs of rickets ... My 3-year-old is a carb-a-holic who won't use the potty if he doesn't get a treat. I find myself actually wanting thier tests to come back positive because then there won't be any excuses. The evil will be banned from my house. Period.

[Fiddle-Faddle]

Welcome aboard, leslie, and I hope that celiac ends up being the answer to all your family's health problems!

It may sound awful to say "I hope your whole family has this disease," but I say it because I know that it's the easiest and cheapest disorder in the world to manage--a simple diet change, and everyone is perfectly healthy!

Good luck, and please keep us posted. And keep in mind that, no matter what the test results, you do NOT need a doctor's permission to start a gluten-free diet. If you need the doctor's say-so to convince relatives, then, if I were in your shoes, I'd be very tempted to go one step further--I'd LIE and say the doctor said to do the diet anyway. My family has been wonderful, though, so never needed to do it--but if I had to, I would.

I value honesty VERY VERY highly--but I value my family's health even more highly.

[Eric-C]

I had written out a nice big reply and the system seems to have lost it...thoughts for another day I guess.

[Amber M]

Many people with "just" gluten intolerance are actually in the early stage of celiac. They just don't have enough villi damage YET for a diagnosis.

Others with actual celiac are not tested properly, or even with proper testing, still show up as negative.

Then there are those who, according to current thought, are "only" gluten intolerant, but they suffer from multiple autoimmune diseases that are enough to put them in wheelchairs or worse. Those diseases miraculously seem to disappear on a gluten-free diet--which kind of shoots holes in the current thought that "just" gluten intolerance doesn't lead to deadly consequences.

There has been a lot of heated debate on this very topic on this board. The upshot is, you can talk all you want about the differences between celiac and "just" gluten intolerance, but in the final analysis, the cure and the outcome are both the same: either you follow a gluten-free diet, or you suffer ever-worsening systemic damage.

"You hit the nail on the head!" The book-"The Gluten Connection" explained a lot for me.