Should I Deliberately Gluten Myself

[sbj]

Fiddle:

Yes, we are definitely on different highways here. I appreciate the opportunity to have this discussion and exchange opinions. I don't expect you to change yours regarding celiac disease and gluten intolerance being the same thing at different points.

I'm saying that you only have celiac when there is an auto-immune response (as Tim explains previously). You seem to be speaking in general terms about intestinal damage which can occur with gluten intolerance but that is not the same thing as an auto-immune response. An IgG response is not the same as an IgA response. Intestinal damage is not the same thing as a white cell reaction and lymphocytosis.

With regards to cancer - I recently had some pre-cancerous polyps removed. They can turn into cancer after, say, ten years but until they do I do not have cancer. I have precancerous actinic keratoses. They can turn into skin cancer if not removed but until they do I do not have skin cancer.

When you speak about the blood panel I am not understanding you. You say that there might not be villi damage. You say that the auto-immune response is not limited to the intestinal area ... Exactly! That's why you get the blood test, isn't it? It looks for a systemic auto-immune reaction - not just for a reaction in the intestine. (And BTW, if the auto-immune response bypasses the intestinal area - then how can Enterolab's results be accurate?)

And while it is true that DH sufferers might not have villi damage they are only diagnosed with DH after a positive biopsy. Again, you might have a rash that looks like DH but you can't know for sure that you do have DH unless you have a positive biopsy and symptom resolution after gluten-free diet. A rash could clear up on its own for any number of reasons - to assume it was DH would be a mistake, I think. Better to have a dermatologist look at it.

I'm not saying that you can't self-diagnose as celiac - how could I? I am saying that if you have celiac then you'd better check for a variety of other things. The treatment for other conditions related to celiac is often a lot more than just a gluten-free diet. I've said previously, you need to check for malnutrition, bone density, other auto-immune disorders, and maybe even endoscopy/colonoscopy, blood and urine for cancer. If you only go with the gluten-free diet you aren't doing everything you should. If you think you have celiac you should check for these other things. That's good advice. If you've got celiac you might have some other scary stuff and sometimes it can't be resolved by simply following a diet.

I don't know about peanuts but when my brother's tongue swelled up after eating lobster he went to his doctor who tested for allergies and discovered he had only very recently become allergic to shellfish. And while I doubt he would eat shellfish in the absence of his doctor testing him for the allergy, if he never had done that test how could he have possibly ruled out everything else he ate at that meal?

I wouldn't diagnose anyone with anything in the absence of medical evidence. I could hazard a guess but that's all it would be. Many different conditions have similar symptoms.

It occurs to me that people on this forum have some serious digestion issues - diarrhea, cramping, abdominal pain. These might resolve on a gluten-free diet. But many people here go gluten-free and then have some further problems that persist. They then start looking at food allergies. Think about this. What if the original cause of the cramping and diarrhea was a cancerous tumor in the large colon? Quite often symptoms from such a cancer are intermittent. What if that person had assumed that the temproary relief he/she got from the gluten-free diet proved that they had celiac? They might be facing a life threatening situation because they did not take their doctor's advice and undergo a colonoscopy. Maybe they skipped a simple blood analysis that might have shown cancerous cells because they felt better.

If you have textbook celiac reactions to gluten then by all means start a gluten-free diet. Who's stopping you? I'm saying that this doesn't prove you have celiac disease. There is a way to prove it. Try it if you'd like.

"Think of it from another perspective--$$$$. A doctor can KNOW that his patient has celiac by the symptoms."

No a doctor can't - because many symptoms of celiac and gluten intolerance are the same - the difference is in the auto-immune response which can be shown via bloodwork or biopsy.

"that's hundreds of $--which is positive. Now he really knows, but he says that he must confirm with an endoscopy/biopsy. Now we're talking thousands of $$$$."

By this logic then no one should bother with testing by Enterolab because they already "know" by their symptoms. Right? It's vitally important to confirm a diagnosis with testing.

"The outcome for the patient is the same either way--a gluten-free diet for life."

The outcome is different. If your doctor knows you have celiac disease then he/she orders additional tests and looks for other conditions related to celiac disease that are not necessarily related to gluten intolerance. When you have celiac, in the short term it can mean much more than just a diet change.

[Fiddle-Faddle]

Ah--but you're assuming too much about the process of self-diagnosis. For most of us, our rashes, digestive disorders, and autoimmune disorders all cleared up on a gluten-free diet, reappeared upon challenge, disappeared again with a gluten-free diet, reappeared upon challenge, and disappeared on a gluten-free diet.

I think there are very few people here who woke up one day, said, 'hmm, gluten," and embarked upon a gluten-free life. A lot of careful thought and analysis went into the decisions of most here--in many, if not most, cases, more than the doctors gave.

There are many instances these days where we are our own best doctor. Remember, in this country, it takes an average of 11 YEARS to receive a correct diagnosis of celiac. That's 11 years of misdiagnosis. Most of us can't afford to waste that amount of time.

IgG is not the same as IgA, but there are IgA-deficient people.

My point is, you place WAY too much importance upon an imperfect testing system, and not enough on patient knowledge and experience.

[sbj]

I don't mean to discount the importance of patient knowledge - especially about their own condition. I have some experience of my own with medical misdiagnoses and doctors not listening. My aim is to urge testing if appropriate for the situation. Use your doctor wisely - in addition to listening to your own counsel.

I haven't been here for too long but I've already read a whole slew of posters who refuse to test for celiac because they know they've already got it - but they aren't getting tested for the other things that go along with celiac. They seem to be fine with just following the diet. I think that could be dangerous.

Regarding the 11 years of misdiagnoses - that is a big problem. If everyone in that situation had tested at the first sign of symptoms with the celiac blood panel then many would have found out right away that they had celiac disease! They wouldn't have had to wait for 11 years. For all of those who test negative but are still gluten intolerant - thankfully we now know that gluten intolerance is widely prevalent and hopefully through forums like this we can educate both the average joe with a stomach problem and our doctors. Elevated IgG is one indicator of gluten intolerance.

I've got to add that I disagree with one thing you say. I DO think there are a lot of people who wake up one day - read a book at Borders - and decide to go gluten free! I hear about them everyday. I work with a few. That's not a problem but this diet is appealing to many in the mainstream.

Ciao!

[Fiddle-Faddle]

Many of us did go through testing--but the doctors screwed the tests up.

I was gluten-free for a month before blood work, and the dermatologist (whom I had to BEG for a celiac panel) not only told me that being gluten-free meant nothing to the blood test results, but told me that a ridiculously high IgG (in spite of being gluten-free) meant nothing.

Luckily, I didn't listen to him, and stayed off gluten--and watched EVERYTHING in my life improve.

The GI who performed not one but two endoscopies on me never even thought of testing me for celiac, although she says she now realizes there is a link between GERD and celiac.

A colleague of mine died last year from intestinal lymphoma. Doctors tested him for wheat allergy, but never tested him for celiac.

One of my sons (age 10)had had SEVERE blistering eczema since he was 4 months old. When I went gluten-free, the family went gluten-light--and his eczema improved enormously, as did his occasional tummy aches ("normal!" insisted the doctor. "All kids get tummy aches!"). I pulled all gluten out of his diet--and his eczema disappeared for the first time ever. We went back and forth 3 times with the gluten, with consistent and immediate results each time. Luckily, his tummy aches are so obviously a reaction to gluten that HE understands this, and will not willingly eat gluten, even at a friend's house.

Will I test him? No. The answer is obvious--he shouldn't eat gluten--AND I don't want any possibility that insurance will deny us coverage down the road (which has happened to some here, with the celiac diagnosis given as the reason for denial). I see no reason to proceed with anything at all risky. Even bloodwork can be risky, as infection can be transmitted by a careless phlebotomist. And for children, endoscopy/biopsy carries more risk than most people are aware of.

Is it celiac for him? I don't know and I don't care. A diagnosis of celiac (or one that would rule it out) would involve DAMAGING him in order to find out, and the answer, if negative, would not be a for-sure thing. I just need to keep my eyes open for any other problems--and keep him off gluten.

[sbj]

Hey Fiddle:

I'm confused about the direction this discussion has taken. Are you suggesting that people never get tested for anything via blood because it carries risk? Are you suggesting that if your doctor fears colon cancer that you not get a colonoscopy because of the risk?

Do your cautions apply ONLY to testing for celiac? It sure seems as if digestion problems should be looked at by a gastroenterologist and perhaps by endoscopy and/or colonoscopy if recommended? Are you suggesting that persons who aren't sure what their problem is but see improvement on a wheat-free diet should not follow a doctor's advice if he/she suggests bloodwork, endoscopy, or colonoscopy?

Really? Couldn't I apply that attitude towards almost any medical analysis? Couldn't I simply surf the net, read WebMD, and self-diagnose?

Isn't that incredibly risky?

Also, your derm was correct - if you are only gluten-free for a month it won't affect the celiac blood panel results.

I'm not understanding why you are telling me about all of these stupid doctors who made a bunch of stupid mistakes? (We agree doctors make mistakes - isn't that the purpose of this forum?) I thought that we were empowering people who read this board to ask their doctors for the appropriate tests? Now that we know the appropriate tests to ask for are you suggesting that we not ask anyway?

"I see no reason to proceed with anything at all risky."

Just walking out the door and driving to work each day involves more risk than a blood test.

Pleassd don't scare people into thinking that a simple endoscopy is some sort of damaging procedure. There's risk involved with everything - say taking your child to the dentist (getting a shot, getting drilled, getting gassed, the blood, the sterilized tools!) - so do you avoid that? Lately it seems that people see the word 'invasive' and think that it means something horrible. It doesn't. A flu shot is an invasive procedure. A biopsy is a tiny piece of flesh - you don't even feel it during an endoscopy. Biopisies are necessary for pathological analysis. A biopsy could save your life and it has saved many others.

There's a way to be skeptical of your medical practicioners without going back to the stone age. Now that you know the proper tests to request why wouldn't you ask your doctor?

I'm not sure how we got to a discussion about your children - I don't even want to touch that with a ten foot pole. You do what you want to do and I won't say a thing!

Salud!