Recovery In Older Celiac Patients

[Helena]

[i see my topic description was too long . . . I was asking if it is worth trying to go gluten free for someone in their mid 80s.]

I have two questions after reading this news blurb:

https://www.celiac.com/st_prod.html?p_prodid=1351

Sooo....it seems that people with celiac over 30 don't have as much of a chance of responding to a gluten-free diet even after a couple of years. (not that that means that one doesn't improve . . . but the gut doesn't heal completely.) Has that been peoples' experience here? I'm going to be nearly 31 when I start the gluten-free diet after the biopsy!!!! I'm not as majorly sick now like a lot of people are before diagnosis, but wheat has always made me feel tired since I was a kid (didn't realize it was the wheat till I stopped eating it) so I suspect that I've had celiac disease for a long time. I have some GI symptoms with gluten containing foods but they are on the mild side.

I was also hoping to get my grandfather on a gluten-free diet . . . he has classic symptoms of misdiagnosed celiac disease:

has Crohn's, had colon cancer, has really bad diarrhea, is severely anemic, has difficulty putting on weight, a blistering skin condition that has mystified his dermatologist. he is really ill + has other health problems too.

But he is in his mid 80s. Is there anything that can be done at that point?

[Debbie65]

[i see my topic description was too long . . . I was asking if it is worth trying to go gluten free for someone in their mid 80s.]

I have two questions after reading this news blurb:

https://www.celiac.com/st_prod.html?p_prodid=1351

Sooo....it seems that people with celiac over 30 don't have as much of a chance of responding to a gluten-free diet even after a couple of years. (not that that means that one doesn't improve . . . but the gut doesn't heal completely.) Has that been peoples' experience here? I'm going to be nearly 31 when I start the gluten-free diet after the biopsy!!!! I'm not as majorly sick now like a lot of people are before diagnosis, but wheat has always made me feel tired since I was a kid (didn't realize it was the wheat till I stopped eating it) so I suspect that I've had celiac disease for a long time. I have some GI symptoms with gluten containing foods but they are on the mild side.

I was also hoping to get my grandfather on a gluten-free diet . . . he has classic symptoms of misdiagnosed celiac disease:

has Crohn's, had colon cancer, has really bad diarrhea, is severely anemic, has difficulty putting on weight, a blistering skin condition that has mystified his dermatologist. he is really ill + has other health problems too.

But he is in his mid 80s. Is there anything that can be done at that point?

I can

[DingoGirl]

Welcome Helena -

you are quite young and should do well! Your grandfather....classic celiac symptoms. I don't see why he wouldn't see improvement - perhaps not full recovery - by removing gluten. At the very least I think his skin condition would clear up, and that's something. I also think his intestinal processes would improve, though he might never see full recovery of the villi. If it's at all feasible for him, not too difficult to maintain the diet, I really think he should give it a try.

blessings -

[covsooze]

My parents have a friend who was diagnosed in his 70s and he's seen great improvements

[eleep]

Edit: whoops -- I was responding to the title, not the actual posting.

IMHO -- Quality of life -- even in one's declining years -- is a really important thing. It also does make a difference in how peaceful and accepting a person (and their loved ones) can be in the face of the eventual end of life. My understanding is that dementia-like symptoms are common for older people with celiac and anxiety certainly is a common symptom -- these were issues that made my mother's decline towards death a very painful thing to watch because I think she was living in perpetual terror for much of the last two years of her life -- not understanding what was going on. She died of cancer, but I would have liked to see her die more comfortably and I don't think that was possible with all the other psychological stuff going on.

eleep

[Kaycee]

I am older, not really that old at 49, but was diagnosed 6 months ago, and I do notice a big benefit being gluten free. I have my life back, my sense of humour, and I am finding out who I am. I am more sociable, do not lock myself away as much from other people. I am not such a worry wart, wasn't so much about myself, but worried more about other people. And on the diet side, it has been hard, but it has been easy. Everybody should be on a gluten free diet, as it is so healthy, and easy to do. Only problem is you do need a few skills in cooking.

On healing, I think it is taking time, and I am now prepared to give it that time. I still have a bit of D most days. It is easing off, and is related to what I eat, but I don't eat gluten. Being older, I am not sure, but I am guessing more damage has been done, which probably means we are more prone to secondary intolerances, which I am looking into right now.

The biggest change, I would say, would be in me as a person, as getting better mentally, not so much the me in my pysical wellness, but there have been many physical improvements, but not the one that I think really counts and that is the D.

I look at my mother who is well into her 70's and she is very aware of labels and looks at everything, as she can not tolerate palm oil. I do question this, as I think she has what I have, and doesn't want to admit it. But she can cope with the checking labels, even though her eyes are pretty shot.

To start with I wanted a quick fix, but anything that is easy, does not benefit us in the long run, we have to make mistakes and learn from them. It is a bit like bringing up children, we do err occasionally, but do learn and become wonderful parents. Don't know about myself, but most are absolutely wonderful parents.

I do think no matter what age you are, following the diet is the main thing and should be adhered to. The one thing that really bothers me and I know that won't be for years and years, would be being in a nursing home and still having D. Nothing like looking toward the future is there?

Cathy

[Ursa Major]

I self-diagnosed myself last year with celiac disease, at the age of 52. I have been gluten-free for ten months now (with a few big mistakes and a few smaller glutenings). I was very ill before last October, with fibromyalgia pain so bad that I was on codeine 24 hours a day, and often extra strength Tylenol on top of that, and still could hardly function (I didn't take more, because then I'd be unable to drive, and my freedom was more important than being pain free, plus I like to be able to think).

I also had chronic, watery D for six months before I went gluten-free.

Am I well now? No, I am not, and I am afraid that I may never be completely well. But the difference is amazing. I rarely have D or C now, I am off all painkillers most of the time, I have a little more energy, my skin looks so much better, my scalp isn't itching so badly that I think I am going insane. My vision is better, I don't get unexplained toothaches as often, my hands function better, my back isn't going out all the time............and the list of improvements goes on.

So, is it worth being on the gluten-free diet, even though I probably won't fully recover? Sure it is! And it would be worth it for your dad, too. He will feel much better on the diet, even though he obviously wouldn't fully recover.

And it is definitely worth it for you! It is more likely than not that you are young enough to recover fully, and get your life back, and feel better than you can imagine. Don't ever give up!

[Rikki Tikki]

Hi and welcome to the board:

My Mom was diagnosed last year at the age of 72 and I think she would tell you that it was very much worth going gluten free after being so sick. My 2 brothers also have it, one is just 52, I am 49 and my youngest brother is 42. I think we have all had such an improvement in our lives that none of us would want to go back where we were. It has taken me the longest to recover though, it has only been the last year that I have seen real improvement. So prior to this last year I might not of agreed with going gluten free being worth it, but now I am very thankful to feel so fine!

[Helena]

Thanks, everyone! Okay, so I'll hold out hope for me, then I've been on a *virtually* gluten-free diet for a few years (occasional contaminated oats; I tried barley and rye on a few occasions; rice milk with a bit of barley protein; have no idea about my cosmetics), but my blood test was still + . . . can't wait until the biopsy is over!!!

As for my grandfather . . . I *hope* he can go gluten free as I'm 99.9% sure that he has celiac. I had suggested the gluten-free idea to my aunt (no point in me suggesting it . . . but my aunt is *very* persuasive. my grandparents listen to her.) I was concerned though that there might not be any noticeable difference and will just cause stress for my grandparents. (It will be a huge deal for my grandmother to change her cooking habits. . . she is quite exhausted and frail these days from caring and worrying about my grandfather.)

My aunt is sold on the celiac idea . . . *she* wants to get tested herself if my biopsy is positive. . .but I think she is going to suggest that my grandparents go for a significant gluten reduction at first . . . I just hope that they try it for long enough to make a difference and that it will make a slight difference to go gluten light.

With my grandfather being so severely anemic (plus he bleeds very easily--I know, another symptom of celiac disease) I hesitate to suggest a blood test, although I did mention it to my aunt.

As a side note: I'm certain my sister has it. She was extremely sick, but her naturopath put her on a gluten free diet . . . she gets D whenever she has any gluten-containing grains. She is much much better than she was. But she still does get gluten in rice milk (that doesn't seem to bother her). . . and isn't very receptive to the idea of going completely gluten free or going about getting a definite diagnosis.

[Ursa Major]

Helena, I just read in your signature that you're going to have a biopsy, after being nearly gluten-free for a while. Do you realize that it will likely be a false negative, even if you have celiac disease, unless you eat a LOT of gluten for at least six months? For some people it takes longer to so totally destroy their villi again to have a positive biopsy.

Why would you want to destroy your villi again, if your blood test is positive? If you feel better on a gluten-free diet, just face the fact that you have celiac disease and be 100% gluten-free. If you're worried about cancer, undoing all the good you've done by at least being nearly gluten-free is foolish, in my opinion. Sorry if I'm blunt, but I don't know if there is a 'nicer' way of getting my point across.

As for your grandfather: Going gluten light will cause the same damage as eating lots of gluten. It will have to be no gluten at all, or it will be pretty useless. Maybe somebody can help your grandmother cook? Are any other family member nearby who can give her a hand? I agree that it would put an additional burden on her initially to learn to cook gluten-free. Of course, if your grandfather improves, then that would be helpful to her, too.

I hope you figure it all out!

[Helena]

Helena, I just read in your signature that you're going to have a biopsy, after being nearly gluten-free for a while. Do you realize that it will likely be a false negative, even if you have celiac disease, unless you eat a LOT of gluten for at least six months? For some people it takes longer to so totally destroy their villi again to have a positive biopsy.

Why would you want to destroy your villi again, if your blood test is positive? If you feel better on a gluten-free diet, just face the fact that you have celiac disease and be 100% gluten-free. If you're worried about cancer, undoing all the good you've done by at least being nearly gluten-free is foolish, in my opinion. Sorry if I'm blunt, but I don't know if there is a 'nicer' way of getting my point across.

As for your grandfather: Going gluten light will cause the same damage as eating lots of gluten. It will have to be no gluten at all, or it will be pretty useless. Maybe somebody can help your grandmother cook? Are any other family member nearby who can give her a hand? I agree that it would put an additional burden on her initially to learn to cook gluten-free. Of course, if your grandfather improves, then that would be helpful to her, too.

I hope you figure it all out!

Hi Ursula, Well, I'll be avoiding gluten from now on anyways, but I want to be sure that it isn't something else . . . i.e. I'm allergic to wheat (positive scratch + blood tests) and barley, rye, oats are cross contaminated with wheat. . .so maybe my reaction to these grains is from the wheat allergy. I know that blood test is over 90% reliable if positive, but I want to make sure. It *will* make a difference--if I'm just mildly allergic to wheat (never had an anaphylactic reaction to it) then I won't worry about x-contam. so much and can have rice milk and things with traces of gluten. (My diet is really restricted as is---can't have a lot of things that people have when avoiding gluten--like potatoes, corn, buckwheat, quinoa, amaranth, soy, any bean flour, eggs, nuts, seeds etc. . . . ) So if I lose just 1 food that I used to eat it is a big deal nutirionally.

Also, I would like to be followed closely if I do have celiac disease. I want blood tests repeated every several years to see if that tTG antibody disappears . . .

I know that the biopsy might yield a false negative . . . before undergoing the test I'll talk to my GI doc to make sure that he doesn't think negative test results = definitely no celiac. I don't think he'll conclude that--I'm sure he is aware of the limitations of the test. If the results from the biopsy aren't conclusive they are supposed to do genetic testing and then consider repeating biopsy (according to the medical literature).

Hmmm....will try to convince my aunt to try to convince my grandpa to try gluten-free for awhile.

Do you have a citation for the 6 month figure? (not that I'm questioning that or anything . . . everyone has a different story on this one and I'm trying to get a good handle on the range of recommended gluten dosages so I can present the info. to my GI doc.)

[gfp]

Hi Ursula, Well, I'll be avoiding gluten from now on anyways, but I want to be sure that it isn't something else . . . i.e. I'm allergic to wheat (positive scratch + blood tests) and barley, rye, oats are cross contaminated with wheat. . .so maybe my reaction to these grains is from the wheat allergy. I know that blood test is over 90% reliable if positive, but I want to make sure. It *will* make a difference--if I'm just mildly allergic to wheat (never had an anaphylactic reaction to it) then I won't worry about x-contam. so much and can have rice milk and things with traces of gluten. (My diet is really restricted as is---can't have a lot of things that people have when avoiding gluten--like potatoes, corn, buckwheat, quinoa, amaranth, soy, any bean flour, eggs, nuts, seeds etc. . . . ) So if I lose just 1 food that I used to eat it is a big deal nutirionally.

Also, I would like to be followed closely if I do have celiac disease. I want blood tests repeated every several years to see if that tTG antibody disappears . . .

I know that the biopsy might yield a false negative . . . before undergoing the test I'll talk to my GI doc to make sure that he doesn't think negative test results = definitely no celiac. I don't think he'll conclude that--I'm sure he is aware of the limitations of the test. If the results from the biopsy aren't conclusive they are supposed to do genetic testing and then consider repeating biopsy (according to the medical literature).

Hmmm....will try to convince my aunt to try to convince my grandpa to try gluten-free for awhile.

What does according to medical literature mean?

There is a whole load of medical literature that says the biopsy is completely ineffective as a diagnostic tool, it all depends which medical literature you want to believe.. the balance is fast changing and in countires like Italy which have a diagnosis rate over 50% based on 1:200 people diagnosed and 1:133 in screening it abandonded as a diagnostic tool.

A biopsy does however give the chance to test for other things like Cancer.

There are two distinct cases....

A suspected celaic who is eating gluten and one who is not.

In the first case then a biopsy is perhaps interesting... it can show the current level of damage.

In the latter case then it is either meaningless because the patient is gluten-free or if the patient deliberatly eats gluten to cause damage to get a positive biopsy .... nothing short of crazy.

You started this whole thread based on the fact many "older" celiacs do not make a complete recovery ....

You have been effectively gluten-free for 2 yrs....

What you are suggesting in the case of a positive biopsy is deliberatly trying to damage one of your bodies important organs and this organ may not ever fully recover.

If you have a full celiac panel blood test with IgA and IgG in addition to transglutamase then the tests are 98% accurate compared to a biopsy but a biopsy isn't 98% accurate itself unless its done post mortem.

-if I'm just mildly allergic to wheat (never had an anaphylactic reaction to it) then I won't worry about x-contam. so much and can have rice milk and things with traces of gluten.

Celiac is not an IgE reaction! wheat allergy is. If you are celiac by a full celaic blood panel and have a negative biopsy and keep eating gluten I would give you 100:1 odds on that you will be positive by biopsy in a few years.

Of course you might win, you might be hit by a bus ... have an accident parachute jumping or be struck by lightening.... many smokers make the same excuse but I strongly beleive we have to act like we are intending to be around in 10yrs time... even when we are 80!!!!

I spoke to my 80yr old 4x bypass and pacemaker father lst night, he just started pilates because his tennis is really stressing his octagenarian back.... he doesn't want to have to stop playing tenis in 10 yrs because of his back!

The reality is he doesn't have 10 yrs... he has a total blastectomy and his pacemaker stop's he dies.

Its an old pacemaker and he's theoretically too old to have it changed so when the battery runs out he dies but this doesn't stop him playing tennis (which incidentally uses up battery faster)

[lindalee]

Helena, I just read in your signature that you're going to have a biopsy, after being nearly gluten-free for a while. Do you realize that it will likely be a false negative, even if you have celiac disease, unless you eat a LOT of gluten for at least six months? For some people it takes longer to so totally destroy their villi again to have a positive biopsy.

Why would you want to destroy your villi again, if your blood test is positive? If you feel better on a gluten-free diet, just face the fact that you have celiac disease and be 100% gluten-free. If you're worried about cancer, undoing all the good you've done by at least being nearly gluten-free is foolish, in my opinion. Sorry if I'm blunt, but I don't know if there is a 'nicer' way of getting my point across.

As for your grandfather: Going gluten light will cause the same damage as eating lots of gluten. It will have to be no gluten at all, or it will be pretty useless. Maybe somebody can help your grandmother cook? Are any other family member nearby who can give her a hand? I agree that it would put an additional burden on her initially to learn to cook gluten-free. Of course, if your grandfather improves, then that would be helpful to her, too.

I hope you figure it all out!

Ursula, Wouldn't blood work show cancer?

[Ursa Major]

Ursula, Wouldn't blood work show cancer?

Lindalee, I wasn't implying Helena HAD cancer already, but rather that now purposely wrecking her villi for a biopsy could be the cause of cancer later on. And as for your question: Since they don't test for cancer when they do the celiac panel, they wouldn't catch it even if it was there.

Helena, I read several of the best books on celiac disease (written by experts), plus what other people here say who've had a biopsy. And the consensus appears to be that in order to get a positive biopsy when you have celiac disease, it is highly unlikely (but in some cases possible) to get a positive result if consuming gluten for less than six months. And in many cases it would take longer.

If you really want to know whether you have celiac disease or not, try Enterolab, their test is accurate, painless, and you don't have to be on gluten.

Are you saying that you have been eating barley, rye and oats, and have only been mostly wheat free for two years? If I read you correctly, than you have never been gluten-free.

I agree with gfp (who lives in France, and knows first hand the way things are done over there), that having a wheat allergy and having celiac disease are two totally different things.

From what you say you're allergic to, it looks like you may be intolerant to lectins. Why don't you follow the lectin link in my signature to find out more?

[lindalee]

Lindalee, I wasn't implying Helena HAD cancer already, but rather that now purposely wrecking her villi for a biopsy could be the cause of cancer later on. And as for your question: Since they don't test for cancer when they do the celiac panel, they wouldn't catch it even if it was there.

Helena, I read several of the best books on celiac disease (written by experts), plus what other people here say who've had a biopsy. And the consensus appears to be that in order to get a positive biopsy when you have celiac disease, it is highly unlikely (but in some cases possible) to get a positive result if consuming gluten for less than six months. And in many cases it would take longer.

If you really want to know whether you have celiac disease or not, try Enterolab, their test is accurate, painless, and you don't have to be on gluten.

Are you saying that you have been eating barley, rye and oats, and have only been mostly wheat free for two years? If I read you correctly, than you have never been gluten-free.

I agree with gfp (who lives in France, and knows first hand the way things are done over there), that having a wheat allergy and having celiac disease are two totally different things.

From what you say you're allergic to, it looks like you may be intolerant to lectins. Why don't you follow the lectin link in my signature to find out more?

Oh, no I wasn't implying that she had cancer only asking if cancer or signs of it would show up in blood work.

[Ursa Major]

Oh, no I wasn't implying that she had cancer only asking if cancer or signs of it would show up in blood work.

Yes, it would, but you'd have to test specifically for it. And it isn't likely (even though I think it may be a good idea for older celiacs) that they would do that test along with the ones for celiac disease. I think that blood test for cancer is quite expensive.

[Helena]

[

quote name='Ursula' date='Aug 21 2006, 10:59 AM' post='189990]

Helena, I read several of the best books on celiac disease (written by experts), plus what other people here say who've had a biopsy. And the consensus appears to be that in order to get a positive biopsy when you have celiac disease, it is highly unlikely (but in some cases possible) to get a positive result if consuming gluten for less than six months. And in many cases it would take longer.

Thanks for clarifying. I'd be interested in checking out one of those books--which would you recommend in particular?

If you really want to know whether you have celiac disease or not, try Enterolab, their test is accurate, painless, and you don't have to be on gluten.

Can't afford it. (I'm in Canada--free medical services here.)

Are you saying that you have been eating barley, rye and oats, and have only been mostly wheat free for two years? If I read you correctly, than you have never been gluten-free.

No, I was 100% wheat free for 3 years. Was heavily into oats until Oct. 2004 . . . after which point I had them rarely. I tried rye and barley a few times during that period . . . not sure how often/how much. More in 2004 . . .. hardly any in the last year. So I haven't been gluten free but I haven't been eating very much gluten. Mostly just having millet and rice and sometimes tapioca for the grains/starches.

I agree with gfp (who lives in France, and knows first hand the way things are done over there), that having a wheat allergy and having celiac disease are two totally different things.

Didn't mean to imply that they were the same thing. Just that I tested positive for wheat allergy (i.e. hive on the skin prick test . . + positive the blood test. These tests are for IgE mediated reactions to wheat (allergy) and not celiac disease.) Now I'm thinking I have celiac in addition. What I was saying is some of the symptoms could be either due to wheat allergy/celiac or both. I know that tiredness is not usually a symptom of IgE mediated allergy (although one can feel icky) so that is why I was suspecting celiac. On the other hand, hives . . obviously not celiac.

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

[Ursa Major]

Don't be so sure about the hives. I get hives when glutened, amongst other symptoms.

You know, I am in Canada, too. And the government insurance would NOT pay for the bloodwork for my youngest daughter, we had to pay the $130.00 by ourselves, even though my doctor ordered the bloodwork. Total waste of money, too. My doctor had no clue what tests to order, she copied the information from a brochure I had printed for her. Meaning, the lab obviously rarely (maybe never) tests for those exact things. They only sent back a report, stating that everything was negative, no numbers, no details, I was so mad.

Now my daughter, who has many symptoms that could be caused by celiac disease is totally unwilling to even try the diet, because she claims the negative results of her bloodwork prove that there is nothing wrong with her, and I just WANT her to have celiac disease, too! She thinks I am paranoid, and now want to 'diagnose' everybody around me.

Our health care system is, for the most part, worse than useless, it is often dangerous, as far as I am concerned. The doctors are clueless, many of them rude and uncaring, and have their little assembly lines, with giving you less than two minutes at each visit. How can anybody accurately diagnose anything in that time?

My doctor at least cares, even though she doesn't know a whole lot.

The book that is a absolute MUST READ is 'Dangerous Grains', by James Braly. Another one is "Celiac Disease, A Hidden Epidemic" by Peter H. R. Green.

[Matilda]

..

[gfp]

this is the standard practise of GI doctors in North America according to my reading (medical journal articles--if you're interested in a citation, would be happy to provide it)

I'm not saying it is right . . . I was just guessing what my GI doctor would do if the biopsy is negative.

Yes I realise this, I'm just saying I can give you plenty of citations for the inverse etc. but that's not really what I'm saying.

There are GI Dr.s and there are doctors specifically researching celiac disease.

Nearly all the Dr.s actually and specifically researching celiac disease are not advocating biopsy and certainly not as a diagnostic.

Yes, you have old school "this is what I learned in med school" GP's and GI's... and a certian momentum to overcome but its changing... every year. Today your certificate might be a better cert than blood tests but I doubt that will be valid in 2 years ....

Blood testing is and has developed much faster in the last few years than biopsy which is still with minor improvements still the same procedure as the 50's....

I can't see sigs, I turned them off ..I could turn them on and read then submit but it would be easier to post them.

What Ursula and I are saying is if you have been gluten-free mostly over 2 years the chance of the biopsy being +ve is pretty small. You will then have a definate NO for Dr's who still regard the biopsy as the golden test and be no nearer.

The other option is a deliberate and prolonged gluten challenge: to try and ensure accuracy but this involves deliberatly poisioning yourself and deliberatly damaging a important organ for a certificate that is decreasing in "value" ....

Considering there is always a chance that THIS glutening will be the one that doesn't repair fully (and by definition you are trying to damage it as much as possible for the test) this is not something to be taken lightly.

Given what you said about cost the ideal situation is not an option... if you had a few hundred loonies sitting idle you could get a biopsy and then if neg carry on the challenge, test again every 3-4 weeks until it is just good enough to be positive... BUT your provincial healthcare is not going to pay for this... if you get one you are going to have to make it count .... and the question is how sick will you make yourself before getting the biopsy...

Just because you feel really bad after say a month doesn't mean it will be detectable on biopsy... and a negative biopsy is not going to help you.. you can choose to eat stuff with a trace of gluten perhaps but for how long? How far would you let your health slip ??? and if you then (perhaps in 5 years) think you have need for anoither test will your province pay?

[Helena]

Ursula, thanks for the reading recommendations! I agree there are lots of problems with our medical system . . . at the same time, my doctors in Toronto have helped me a lot. I need to keep on top of everything myself though which means a lot of research.

I've found that one can get around paying for some things by seeing a doctor in one of the major teaching hospitals. Not sure if all hospitals operate the same way, but I didn't have to pay for my celiac blood tests probably because I was tested in hospital. If my GI doctor refers me to the hospital's dietician, then I won't have to pay for that either. (I'm short on cash these days--am finishing up my degree.)

gfb -- just FYI (since you can't read the signatures)--my blood test was positive for tTG antibodies, negative for gliadin antibodies (I know the tTG test is the most definitive)

I find it interesting that some doctors are questioning the biopsy. In one of the articles I read (by Armin Alaedini and Peter H. R. Green) the authors mentioned a couple of studies which question the reliability of the biopsy . . . but they indicate that the biopsy is still considered to be needed. I would love to find a GI doc who wasn't as keen on doing the biopsy, but I don't think I'll find one in Toronto.

article title: Narrative Review: celiac disease: understanding a complex autoimmune disorder in Annals of Internal Medicine. Feb 15, 2005. 290-198

I understand that I might be doing myself more harm than good, but I still want a definite diagnosis . . . though I will be avoiding the gluten containing grains regardless. I'll talk to my GI specialist though to raise the issue that the biopsy might not be accurate especially in my case. A good doctor should understand that . . . I hope I have a good doctor!