Why Does The Medical Establishment Stonewall Dr. Fine?

[tex]

Mary Beth,

Thank you so much for your insight on this issue. You're right, of course - if a medical professional disagrees with the value of the GF diet, the very least she or he could do is to be respectful of people who have found relief by using it. Lack of respect, or failure to observe common courtesy, can only be interpreted as rather unprofessional behavior.

IMO, the proof is in the pudding. If you scan the celiac support boards, (and there are quite a few of them on the net), you will notice many, many posts about the testing done by Enterolab. I certainly don't claim to have viewed even a significant percentage of them, but of the ones that I have seen, all seem to be very supportive of the testing offered by Enterolab - I have yet to see a post by a dissatisfied customer, who disputed her or his test results. If the tests are just a ripoff, why don't we see post after post, affirming that the tests are worthless?

One of the truly great things about the internet, (and, I suppose, in some instances, one of the worst things), is that when people are allowed to freely express themselves, scams and myths tend to be quickly unveiled, and the truth rises to the top. Probably, one of the reasons why so many GI doctors don't trust the internet, is because so many support boards contain negative comments about treatments, by posters who are dissatisfied because they haven't seen any improvement in their symptoms, after exhausting all of the treatments offered by their own GI doc, (especially in the case of people with food intolerances). In light of that trend, it seems rather inappropriate for GI docs to be casting stones.

We'll certainly be looking forward to your report on the I H camp.

Thanks,
Tex

[jcc]

Hi,

I found your forum here because someone posted a link to my website, and I wanted to offer some additional information in support of Dr. Kenneth Fine. This link includes other studies to support fecal antibody testing, and gives a few doctors who support his testing. I hear of more and more doctors using his tests all the time, particularly alternative/ integrative/ functional medicine docs.
http://jccglutenfree.googlepages.com/th ... ooltesting

Might also be interested in this page:
http://jccglutenfree.googlepages.com/gl ... iacdisease

We didn't do the stool testing through Enterolab, as my daughters had tested positive for blood antigliadin antibodies. Well, actually, I did do the stool test eventually on one daughter, after a year, as followup, but it was hard to relate blood antibodies to stool antibodies (which were still high at that mark) to know whether they were coming down.

We did do genetic testing via his lab. My daughter and I have double copies of DQ1. The link to our "story" was posted a few posts up by somebody else.

I had the pleasure of seeing Dr. Fine speak at the Wisconsin celiac conference in Milwaukee in 2001 or 2002. His presentation was extremely enlightening and convincing, and at that point I was very grateful to have some validation from a medical professional, whether or not he was "mainstream" accepted. He sure had the admiration of our local celiac support group, since over half the members were not gold star celiacs. My younger daughter was already on the diet (against medical advice of our GI ) and doing well. My other daughter was refusing, because the GI insisted she didn't need it. Everything Dr. Fine said made perfect sense. You know... both he and his daughter are gluten sensitive, not celiac, and had a long hard diagnostic road of their own. When you hear HIS story... you know why he is so passionate about gluten and other food sensitivity.

Back in 2001, he was still able to answer personal emails. I think today his inbox is likely just overpacked and he simply has trouble responding to all the requests he gets... from patients or doctors. He was generous in his responses to me back then, and he actually told me NOT to bother doing the stool tests on my daughter's who had already had positive blood antigliadin antibodies... because we already knew they were gluten sensitive. He also explained the genetic testing, and what you could learn without testing every member of the family. Because I had double copies of DQ1, all of my children would have at least one copy. Since my daughter also had two copies of DQ1, we knew that my husband had at least one copy. So... all of my children are at risk.

I've also met many other DQ1ers over the years, and darned if we don't seem to have more than our fair share of neurological issues...along with GI issues.

I see slow movement to acceptance of non-celiac gluten sensitivity. Even Dr. Fasano and Dr. Green are softening their previous hard line stance in regard to "gluten sensitivity w/o celiac disease", but you will probably never see their stamp of approval on the stool tests. Unless, maybe, they created a new and improved one .

I can't validate Dr. Fine's test, but I have probably crossed paths with 100 or more people who have used his tests, gone gluten free based upon the results, and enjoyed improvement in their health. And I've met hundreds of people who have been failed by traditional testing... including myself and my daughters. I didn't show ANY positive blood tests and began the diet just to support my daughter. A lifetime of nagging GI symptoms vanished. And more recently, I've given up casein completely, as I realized the few times I'd indulge... it was followed by a week of arthritis symptoms in my toe, thumb, and lower back.

I have stopped waiting for Dr. Fine to publish, which he's been promising to do "next year" since I saw him speak almost a decade ago. Frankly, he doesn't give a hoot about satisifying the medical community who have smeared him, and I don't blame him. He cares more about diagnosing patients.

I have come to appreciate though, that unless the work is published, it may never gain acceptance by the medical community. Dr. Marious Hadjivassilou has "gone by the book" in his research, and published his results, and I don't think we'd be making the "mainstream" strides we are today in recognizing gluten sensitivity w/o celiac disease...without his work. The guy is my hero. But, so is Dr. Fine, for offering validation to my family's unique presentation of gluten sensitivity. When you hear him tell his story, you understand why he doesn't give much of a hoot about pleasing the medical community. I do hope he gets around to publishing one of these days, though.

I also think it is important to know Dr. Fine's professional history, including his curriculum vitae. He is no slug off the street.
https://www.enterolab.com/StaticPages/F ... rculum.htm

I'll have to check your forum out a little bit more... I think its possible my youngest daughter actually has/had microscopic colitis. Here were some things I came across when investigating my older daughter's biopsy results because she showed lymphocytic gastritis on biopsy, but no hint of celiac disease. Lymphocytic gastritis is associated mainly with two things... gluten and h. pylori (they ruled out the latter during biopsy).
http://jccglutenfree.googlepages.com/h. ... is&colitis

Cara

P.S. I've taken a moment or two to browse around, and what a great collection of information you have here!

[starfire]

Thank you so much for your post, the info, and sharing some of your experiences!!

Looking forward to more posts from you.

Shirley

[tex]

Hi Cara,

Welcome to our board, and thank you so much for your insight. It's very gratifying to see that you support Dr. Fine's work so strongly, and I definitely appreciate the links. I was unaware of many of them, and one of those articles, (on H. pylori), was exactly what I was looking for, regarding another member issues. Her doctors can't seem to figure out why she has atrophic gastritis, and pernicious anemia, so I appreciate being able to use a link to that research article, in my response to her this morning.

I recall reading your story a year or two ago, but I had lost track of it. We truly appreciate the information you've shared with us regarding the double DQ genes. We try to tabulate genetic test results from members who've had that test, and the data can be eye-opening, in some cases. So far, we appear to have 7 double DQ1s, 2 double DQ2s, and one double DQ3. Yes, people with double DQ1 genes, who also have MC, tend to have more food intolerances, more neurological issues, (if untreated), and they seem to have a much more difficult time achieving remission from MC symptoms. Since we only have one member with double DQ3 genes, it's difficult to draw conclusions at this point, but she seems to have even more issues, especially in the form of physical damage/issues to her GI tract. Besides the diagnostic marker for lymphocytic colitis, (increased lymphocytic infiltration between the epithelial cells of her colon), she has been diagnosed with atrophic gastritis, and nodular lymphoid hyperplasia, (in the terminal ileum), and even though she shows other damage to the architecture of the small intestine, her doctors do not recognize it as celiac disease. Anyway, here is our listing of genetic test results:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645

Up until 2 or 3 years ago, some of our members often received e-mail responses directly from Dr. Fine himself, and phone consultations were an option, but as you point out, that has now fallen by the wayside, as his schedule accrues more and more demands.

Frankly, he doesn't give a hoot about satisifying the medical community who have smeared him.

I get exactly the same impression, but like you, I do so hope that it will eventually come about. That old quote about "Ye shall know the truth," etc., is definitely valid, and when the world is smothered by misinformation, a breath of truth can be incredibly invigorating.

Regarding ruling out H. pylori by means of biopsies, (the most accurate means), note that if the Giemsa stain is used, the test has only an 81% sensitivity, according to this research report, suggesting that the 100% accuracy of a culture test would be far more reliable, for ruling out H. pylori infections.

http://cat.inist.fr/?aModele=afficheN&cpsidt=1994812

As far as I can tell, the only salient histologic difference between lymphocytic gastritis, and lymphocytic colitis, is the location of the inflammation, (i.e., the stomach or the colon). Does that imply that it may be the same disease, or a subset of the same disease? Microscopic colitis, (IMO), was improperly defined, when it was originally described, because the name, (colitis), limits it to the colon, (only). However, we know for a fact, that microscopic colitis can affect the entire GI tract, from mouth to anus, much like Crohn's disease, because so many of us present with "extra-colonic", (is that a word?), symptoms, such as mouth sores, GERD, gastroparesis, gastritis, lymphocytic infiltration of the epithelia of the small intestine, gallbladder issues, pancreatic issues, etc. Remember that MC can only be diagnosed by means of proper examination of biopsies of the colon. That is to say, you cannot find MC, unless you specifically look for it. That's one of the main reasons why so few people have been diagnosed with MC, in the past, and why so many people are suffering from IBS, (history shows that the primary difference between IBS and MC, is usually a biopsy).

Thank you for taking the time to register and post such helpful information. It is always a pleasure to meet another seeker of truth, who is willing to share information, and shed some light into the "gray areas", in the complex world of medicine and health care. As Shirley says, we're hoping that we can look forward to many more posts from you, in the future.

Tex (Wayne)

[JLH]

Cara, I'm so glad you found us and posted. (I do want to know how you knew I posted a link to your site etc.)

I got my LC diagnosis on a Friday and was given the choice of Entocort or Lialda. I asked if I could have until Monday to decide.

I was backwards and found EnteroLab first, then searched for info on the legitimacy of EnteroLab and found the PP. I totally trusted Tex and the PP. I was gluten free by Monday....No meds but no remission, yet, either. Did the entire EL testing.

Today is my PP first anniversary. Thanks very much, Tex, and all.

[jcc]

Thanks for the friendly welcome :).

Regarding ruling out H. pylori by means of biopsies, (the most accurate means), note that if the Giemsa stain is used, the test has only an 81% sensitivity, according to this research report, suggesting that the 100% accuracy of a culture test would be far more reliable, for ruling out H. pylori infections.

Did not know this. All I know, according to the biopsy report for older daughter, is that "A special stain has been ordered to rule out Helicobacter pylori - like organisms and a final diagnosis will follow." I never actually got the second part of the report on that, but was told it was negative.

The daughter who showed lymphocytic gastritis on biopsy is the daughter who isn't on a gluten free diet, but should be. She had positive antigliadin IgG antibodies of 33 (> 30 moderate to strong). She does limit dairy because she has annoying symptoms with it that embarrass her (bloating and gas). She is now 22, and although her childhood was riddled with medical problems, apparently it will take something more to convince her. I made her sign off on a packet chock full of her various test results and articles back in 2003...when she was 16... to absolve myself of blame should she develop a complication from gluten sensitivity that isn't reversible. Perhaps I should resend it to her now.

My 13 year old has been gluten free since age 5. She had had two years of chronic diarrhea and stomach aches, periodic vomiting, and fleeting neurological symptoms. We actually skipped the biopsy on her because we weren't keen on putting her through it when we feared the results would be negative for celiac anyway. She has improved so much... is happy, healthy, growing well, excellent student, rashes resolved, neurological symptoms vanished... but although the frequency is just 1-2 times daily, she rarely has a solid stool. This still bothers me. I do suspect additional foods are problematic. She is 100% gluten free, and 99% dairy free. For a while we completely avoided corn, strawberries and apples. She'd break out in hives with strawberries and apples for a while. We've tried probiotics (still use them off and on) which I'm sure are useful, and tried increasing fiber. I have convinced her to take a "whole food only" challenge, without eggs, corn, (or gluten, casein) for two weeks this summer.

Her Enterolab stool test at the two year marks still showed positive for gluten. She did show positive for yeast sensitivity, milk sensitivity, and egg sensitivity. She rarely has food w/ added yeast. We have not given up eggs. Her intestal malabsorption score at two years gluten free was negative. I was a little disturbed by the still elevated gluten result, but Dr. Fine assured me if she was doing well, and her malabsorption score was good... we were on the right track.

She is HLA-DQ1*0603, 0603
I am HLA-DQ1*0603,0604

Do these predispose to MC? I don't even remember now, but I'm thinking that possibly even Dr. Fine told me this was a possibility. I guess because my youngest has improved so much, we've been content to rest at 90-95%. I still feel she isn't 100%, though, based on her gassy loose stools. She has no discomfort though, and no urgency.

Those were such hard years because this all came within a span of about two-three years, between my B12 neurological and GI symptoms, my older daughters seizures and asthma and lots more, and my youngers daughters GI/neurological problems. I was angry with the medical profession, collectively, for several years... for not knowing how to help us. Well, except for the handful of doctors who helped me via the Internet to solve my family's medical problems.... can you imagine, doctors who helped a stranger like me, for ZERO $$. Some were the well known kind (Dr. Fine, Dr. Hadjivassilou, Dr. McGinnis) and others were physicians I've met along the way, at forums like these, who were struggling with the same issues. I've come to understand that the average doctors we see just haven't been taught these things, and I no longer harbor the strongly negative emotions I once had, but I still avoid doctors the best I can .

It's been a while since I've retold our story to a new group of people. I guess perhaps I should learn more about MC, the symptoms of it, and whether that is something we should be considering... and if so, if there is anything more that could be done for my daughter. Most of me thinks there are just additional foods she needs to avoid (like the eggs)... and we've just been reluctant to remove that one completely.

Thanks for listening... you do have a great site here. I've added it to my Favorite Links page in The Gluten File and posted it on my related forum, and will certainly steer people this direction when I hear of someone suffering from colitis or IBS. I also have another page on IBD, IBS, and Crohns but I'm having trouble with the link working. You can get to it by scanning down the right bar of The Gluten Fileuntil you see you (pretty far down), and click on it. But, if I try leaving the url directly from the top of the IBS page, it says not found. I remember that glitch, but haven't been able to figure it out.


I will probably continue to poke around and see what more I can learn here. I know there is always a lot more to learn, but sometimes I really think I've maxed out this brain of mine. I do feel like I am traveling on the same journey and have the same mission as you do here.

Cara

[jcc]

(I do want to know how you knew I posted a link to your site etc.)

Hi Joan,

Happy Anniversary!

I hope you don't feel stalked . There is a free stat counter I added on my website, and part of what it collects is "came from" locations that point back to the site of origination. I don't check my stats often, but sometimes when I do... I will look at some of the "came from" locations. So, it wasn't that you posted a link , but that somebody else clicked on it to get to my site. It shows me the addy to the particular thread that the link came from. It also tells me how many hits I get on what pages. Actually the most hits always land on the B12 deficiency pages.

I know... the Internet is kind of creepy that way... the way it "knows things". I have occasionally been guilty of googling The Gluten File to see where it shows up, and find things that way. It actually makes me feel good that someone has found the info, and thinks its useful enough to post. I mean... that is why I put it all out there... to share so that other people can find answers a little quicker than I did. So, I hope I haven't scared you ;). You should also be able to get the The Gluten File by www.theglutenfile.com which is a tad bit less of a mouthful than the googlepages addy. I pay a whole $10 a year for that perk :). You can also just google ' gluten file '. Can you tell I hate the jccglutenfree googlepages addy!

I don't know much about colitis, specifically, except that gluten can be responsible for at least some cases of it. Oh... and apparently so can CORN.

We have a Wheaten Terrier, a breed which is actually predisposed to gluten sensitivity and other food sensitivity, too. We did not even know this until AFTER we bought him! Talk about serendipity! We had our previous dog on a gluten free diet anyway, just to avoid cross contamination in our home when handling the food. In any case, per the breeders recommendation and our own experience... this dog has been on a diet free of allergens preventatively. No wheat, corn, soy, barley, rye, or egg. He just got into some corn that neighbors put out for the squirrels. It was the feed kind of corn with hard kernels. Apparently a portion dropped over our fence. Our dog was having some episodes of retching for a couple of days, but nothing more than phlegm came out. He wasn't eating. On day two, I found a pile of very bloody stool in the backyard. The vet found lots of CORN in the stool, and xrayed him to be sure he didn't ingest the cob and have a blockage. That part was fine, thankfully, but the dx was COLITIS due to CORN ingestion. One lousy ingestion!! He's been on a bland diet and medication since, but is much improved and we'll start transitioning back to his normal diet.

Wheat, corn and soy can be bad for dogs, too! Has been associated with canine epilepsy as well!

Nice to meet you. I hope you show some improvement soon. OK, I get it... PP... potty people

[tex]

There is a much more reliable stain, and that is probably the one they ordered.

Regarding the daughter who does not follow the GF diet - we can certainly empathize with you there, because many of us face similar situations in our own families.

I will assume that your younger daughter tested negative to soy intolerance at Enterolab. Roughly half of us are soy-intolerant, and those who are intolerant to soy, are usually extremely sensitive to it, and find it much more difficult to avoid than gluten. Interestingly, we have found that the only time we test positive to yeast intolerance, is when we actually have a yeast overgrowth, (in our GI tract). The egg test is only for the albumen, and I have heard of people separating out the white, and eating the yolk, without problems. In fact, no one knows why this works, but we have found that most people who are egg intolerant, can eat eggs in baked goods, without problems, even though they react to eggs, when eaten individually. I can't guarantee that this works for everyone, but those of us who have tried it, have found that it works. If your daughter does a diet trial this summer, she might want to consider avoiding soy during the trial, even if she tested negative to it.

Unformed stools can be due to one of the sugar alcohols, (sorbitol, manitol, etc.). Most of us seem to have problems with sorbitol, to some extent, and many fruits are high in sorbitol. Unlike IBS, MC is adversely affected by fiber. Most of us cannot tolerate significant amounts of fiber in the diet, until the gut has healed sufficiently. We can tolerate certain vegetables, and a few fruits, but they must be cooked very thoroughly, (overcooked). Much of the fiber in fruit, is in the peel, so removing that, can help. Lettuce, especially, and one or two other items, can be rather catastrophic, for some of us.

The hives, due to ingested foods, suggests the possibility of mastocytic enterocolitis, or at least some sort of mast cell involvement, which may or may not be related to MC. Dr. Lewey has a pretty good blog about this issue.

Yes, those gene test results definitely predispose to MC, but that is certainly no guarantee that either of you will actually develop the disease. NSAIDs are a common trigger for MC, and there are various other meds, such as SSRIs, PPIs, etc., that can initially trigger it. If you or your daughter are using any of those, you might want to investigate further. Often, just withdrawing from the med, will resolve the symptoms, but that doesn't work for everyone, of course.

Well, except for the handful of doctors who helpd me via the Internet to solve my family's medical problems.... can you imagine, doctors who helped a stranger like me, for ZERO $$

.

The internet can be an almost magical place in some instances, and I believe that most of us will agree that we have learned far more about our issues on the internet, than we ever did from our GI docs, and as you say, at zero cost.

I've come to understand that the average doctors we see just haven't been taught these things, and I no longer harbor the strongly negative emotions I once had, but I still avoid doctors the best I can .

Most of us here feel exactly the same way.

I do feel like I am traveling on the same journey and have the same mission as you do here.

You took the words right out of my mouth, (or my keyboard, as the case may be).

Thanks for the kind words, and again, we appreciate all the information.

Tex

Incidentally, all you have to do to post an URL, is to list it, and the system will automatically convert it into a link. It's not necessary to click on the "URL" button. The system will also automatically shorten long URLs.

[tex]

Canines and felines are carnivores, of course, and evolved on a paleo diet of almost 100% meat. Somewhere along the line, over the last 50 years or so, the pet food companies arbitrarily decided that dogs and cats are omnivores, and they decided that grains and legumes, food items that did not even exist, much over 10,000 years ago, should be a primary part of their pet food formulations. Well duh! It's no wonder that our pets are having the same digestive problems that we're having. The pet food manufacturing companies, as a group, are the primary obstacle to improved health for our pets.

Tex

[JLH]

Thanks for that computer info, verrrry interesting.......

My daughter figured out on her own that her pound puppy was sensitive to gluten. I don't want to jinx it but there may be a dog in our, hopefully, near future. I hadn't thought about the food, yet. Thanks for the warning.

[jcc]

I will assume that your younger daughter tested negative to soy intolerance at Enterolab.

You know... that wasn't tested. It was back in 2003... might have been before they had added that one... but otherwise, I'm not sure why I would have skipped it. I am aware that soy can be a biggie... so I've tried to avoid soy substitutes for dairy, but we have not eliminated it completely. In fact, she occasionally eats the cheese subs with soy because I have trouble finding this locally. I'd personally rather do without, but she still wants it. http://www.galaxyfoods.com/ourbrands/usa/galaxy.asp


We use Almond Breeze milk sub, It has soy lechitin... does that count? Perhaps she's getting more soy than I'm thinking... and I will definitely stay clear of it for our trial. We are seriously going to try to eat only whole foods... which has always been a goal.. but we aren't quite there.

Unformed stools can be due to one of the sugar alcohols, (sorbitol, manitol, etc.). Most of us seem to have problems with sorbitol, to some extent, and many fruits are high in sorbitol. Unlike IBS, MC is adversely affected by fiber. Most of us cannot tolerate significant amounts of fiber in the diet, until the gut has healed sufficiently. We can tolerate certain vegetables, and a few fruits, but they must be cooked very thoroughly, (overcooked). Much of the fiber in fruit, is in the peel, so removing that, can help. Lettuce, especially, and one or two other items, can be rather catastrophic, for some of us.

The hives, due to ingested foods, suggests the possibility of mastocytic enterocolitis, or at least some sort of mast cell involvement, which may or may not be related to MC. Dr. Lewey has a pretty good blog about this issue.

Yes, those gene test results definitely predispose to MC, but that is certainly no guarantee that either of you will actually develop the disease. NSAIDs are a common trigger for MC, and there are various other meds, such as SSRIs, PPIs, etc., that can initially trigger it. If you or your daughter are using any of those, you might want to investigate further. Often, just withdrawing from the med, will resolve the symptoms, but that doesn't work for everyone, of course.

Thanks... very informative!

Sorbitol, mannitol. The food holiday will definitely not include chewing gum... which she does chew. I'd have to say adding fiber has not seemed to help... and possibly made things worse. Most recently we tried FiberSure/Inulin... at about 1/3 the recommended dose... for a few days and went no further. It did seem to make her gassier. Her favorite fruits are apples and berries... She doesn't like raw veggies...loves steamed brocolli.

Haven't seen hives from any food in a long time...

Definitely avoid NSAIDS and PPIs like the plague. I learned about the dangers of PPIs when I was B12 deficient. I wasn't using them, but learned they can block absorption of vitamin B12 and other nutrients, and have also been implicated in provoking food allergies. Oh man, and our GI's would like us to live on them! Push them like candy. NSAIDS... thankfully I've never been big on taking any medication that wasn't absolutely necessary. Did recently have to make an exception for an abcessed tooth... and I've also had to step back a bit and use some medications... like I've realized it makes sense to use decongestants/guaifenesin to avoid antibiotics for a sinus infection later.

Incidentally, all you have to do to post an URL, is to list it, and the system will automatically convert it into a link. It's not necessary to click on the "URL" button. The system will also automatically shorten long URLs.

That is good to know. Much easiers than using the "URL" button.

But... My little glitch is that when I copy the link directly from the top of my websites page when it is displayed... it doesn't work. Shows as Not Found.
Test: http://jccglutenfree.googlepages.com/crohn's,ibd,ibs

EDIT by admin:

This will work:

http://jccglutenfree.googlepages.com/crohn%27s,ibd,ibs

Hey thanks!
You are great!
Did I really just half copy it? because I tried it three times!

Thanks for some great tips. I know I have more to learn here. Like I said, we got so far, pretty far, and fizzled. I keep putting off going the final distance and my daughter does not want to give up any more food! But... I did get her to agree to the two week food trial... and we'll take it from there.

I've also been considering doing IgG food allergy testing for her (been talking about it for about five years) . Have any of you done that? We've actually had quite a few people report positive results by eliminating foods pinpointed by that testing.

Cara

[jcc]

Canines and felines are carnivores, of course, and evolved on a paleo diet of almost 100% meat. Somewhere along the line, over the last 50 years or so, the pet food companies arbitrarily decided that dogs and cats are omnivores, and they decided that grains and legumes, food items that did not even exist, much over 10,000 years ago, should be a primary part of their pet food formulations. Well duh! It's no wonder that our pets are having the same digestive problems that we're having. The pet food manufacturing companies, as a group, are the primary obstacle to improved health for our pets.

Tex

We have our dog on a Canidae Grain Free diet now. We used to do Canidae chicken and rice, until they added barley back into the formulation! No longer gluten free :(.

Have you all met DogtorJ? He promotes dog/cat food free of wheat, barley, corn, soy...(and dairy.. but that doesn't end up in pet food often, does it?) Here is a list of pet foods he recommendeds... the page has been updated a few times.
http://dogtorj.tripod.com/id39.html

[Polly]

Hi Cara!

I am a double DQ 1 and the original member here to discover multiple food intolerances. As a physician, I totally agree with everything you have said about traditional medicine and Dr. Fine. I emailed and spoke by phone with Dr. Fine back when 1st diagnosed and over the years, and I would still be sick today if not for him. He is my hero.

I believe about 50% of gluten-sensitives are also sensitive to soy. Although you will read that soy lecithin is OK for soy-intolerants, I have found this NOT to be true. I have to avoid soy in ANY form to have formed BMs. Also, I have found that I am sensitive to carrageenan, an emulsier that is used in many of the non-dairy milks (like the nut milks). I assume you already know that increasing fiber is a no-no for those with MC.

I think we must be kindred souls. My dog has been on raw food for years -no grains whatsoever (not even rice). I have shared a number of emails with DogterJ.

Love,

Polly

P.S. To Joan...

[jcc]

Hi Polly,

I feel like I've known you all for years...

I did not know that increased fiber and MC was a no-no until I read it just a few posts above. The only "diagnosis" we really have is gluten/casein sensitivity and that is pretty much self dx'd. I am suspicious whether MC might fit. But, I'm going to take your word on the soy... and the fiber. I can tell you I've tried fiber in the past, with very bad results. Still, I kept thinking maybe that was her problem in not having formed bms. But, it did not seem to help her. I was going to perhaps try it again with her this summer, but I will not!

We've been talking at my gluten forum recently about someone having trouble with vitamin D provoking neurological symptoms, which I had never heard of before. Turns out a few other people had similar problems, and one person suggested it was the soybean oil in the formulation. It was for her, and when she switched to a brand without soybean oil... she was fine. Go figure. Although some in our group do avoid soy, I don't think we have suspected intolerance might be as high as 50%. I think we've under appreciated it. We always list of wheat, dairy, corn and soy... but at least I.. didn't think soy applied as much .

DogtorJ and I have also shared a few emails. I can't believe you've all been sitting here and I never knew it. I feel like I may have stumbled past your forum one other time, but never stopped to read. Our group has a fair number of double DQ1ers, too. I bet it frustrates you, too, when you hear that people have been told gluten sensitivity has been "ruled out" because they don't have the celiac genes.

Anyone with Narcolepsy here? When I first googled DQ1 many years ago the only info out there was in regard to Narcolepsy. Since then, I've met a few different people who have had their narcolepsy completely vanish on a gluten free diet. Its just amazing how many ways it can manifest.

I wish we could just merge our two forums... because we are the same group... I swear! But, I will settle for visiting here... and comparing notes.. and I will definitely send people over if the shoe fits! In fact, I'll let all of our DQ1ers that there is a matched set over here.

Cara

[JLH]

Thanks, Polly. I can't wait for my gold star but I'll never catch up to all you four stars...........