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spunky

I Have To Vent, Somewhere!

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Well Hello...

I'm afraid I am totally fed up! I have always hated doctors anyway.

My story and my frustration and anger in a nutshell:

Over ten years ago, I decided doctors had always done me far more harm than good, so I decided to take health matters into my own hands. I began reading about health and diet, as an attempt to empower myself and my family in protection against chronic disease, etc.

My readings eventually led me into some doctors who teach veganism as a means of avoiding disease. I bought books, DVDs, read their websites/got onto message forums there, etc., and began putting my family onto a whole foods, vegan, low-fat diet. I don't want to mention any sites of names, because I'm not into trashing anyone, but I have to admit sometimes I'm feeling angry and resentful about this whole thing.

From day one, or near day one, my body began acting up on the low-fat, whole foods, vegan diet. I mentioned it a few times on the websites and people all assured me that this was what happens to everybody at first: irritable bowel type things and other "detoxing" things. I continued on. Throughout the early months and years my health got worse and worse, but we were busy and had multiple things on our minds to deal with...I had so many worries about other family members and such that I generally ignored how I felt and just continued on with the diet. There were times in which life slowed down temporarily enough that I noticed I was doing badly, and I even e-mailed the low-fat vegan doctor himself asking if he thought I could be having a gluten problem; his response to me at that time, probably 7 or 8 years ago, was that he eats gluten himself every day and thought that everybody else in the world is constipated from typical American diet, and that Americans just don't recognize good "bowel function" when they experience it (yeah? Like broken glass diarrhea all moring, hot air balloons and wolves howling away in the afternoons inside your gut, and then acid-burning poops all evening--????) and that exchanging a few gas pains for good health should be a happy thing, not something to complain about. Okay...I'll give him the benefit of the doubt: this was just e-mail correspondence. But I listened to his advice, trusting he was better than doctors anywhere else, and I continued on...life got busy again and I ignored my sypmtoms.

At one point I began to realize a few things: I was cancelling trips and evening activities because I knew my gut problems would interfere with these things, and that I was only capable of holding onto my job because my office door (and lucky to have a private office of my own to work in, where I could scrunch up my knees, moan, have loud tummy sounds, and fart all day long in private) was located just about 8 feet from the restroom door...though, sometimes I did not get there in time...I had to one day wake up and smell the coffee...NORMAL people do not carry extra underwear to work with them every day!!!!!

I did more gluten research and diagnosed myself as having a real problem. I began noticing, at this same time, that others on these low-fat vegan websites also seemed to have similar problems, and when I attempted to point out this possibility for them, I would get lots of ridicule from the vegan communtiy. Where they say people are in denial about the harmful foods in the so-called Standard American Diet, they themselves are just as likely to deny any possible harm in coming from any plant foods. I went through a lot of battering on those boards. I saw a lot of people who also seemed to have gluten problems just dropping off the boards too...nobody seemed to notice, in fact I believe they were happy to see "trouble-makers" leave the vegan communtiy.

I'm not slamming vegans, but I'm saying that this was very frustrating for me. I guess I do blame veganism as triggering celiac for me. I'm not officially diagnosed, but the way my health degenerated, and the way it has finally come back is pretty good evidence.

So, now after following this doc's advice, I have gone from a healthy person, to one who can never eat a normal diet again. Sorry, maybe I'm BLAMING, here...but this makes me kinda mad.

Also, like so many vegans (not all, I realize, but I was a bad one!), I was so convinced that low-fat veganism would prevent and/or cure just about all of the common chronic diseases, that I was a preachy vegan. Now it's pretty much egg on my face. I'm embarrassed around everybody I used to preach to, and haven't even told them about the whole celaic issue: it's just too embarrassing to admit that as confident and preachy as I was, I was killing myself, and maybe they were lucky to NOT have followed my advice.

On top of this, I recently heard a podcast featuring this doc, whom I had such confidence in as a great humanitarian, saying that if people won't give up their hamburgers they can "Just die," and that he really did not care.

I now have respect for only two vegan doctors: Klaper, as I saw a video in which he advised vegans to be careful with gluten and maybe it would be best for them to avoid it, and Doug Graham, a chiropracter who teaches raw veganism and has been yelling about gluten for a long time. But raw veganism is very difficult to follow, and I can't do it successfully, myself.

Now I am no longer vegan. I just lost faith in the whole idea, plus it got to be too difficult to give up what had become about 45% of my diet...some type of gluten, in one form or another and feel like we were getting enough to eat. My poor husband has been dragged through this whole process with me, and he's glad we're no longer vegan, and fortunately, very understanding and supportive of my gluten problem.

Although the doc I once believed in has let me down in many ways, I have to say he did finally put up a gluten-free section on his forum. Still, I really believe this was just because others were tired of hearing me and wanted to have these discussions kept away from general readers of the forum. I still see people on there who appear to have gluten issues, and are still told everything under the sun as an explanation, rarely ever any word about gluten to look into and see if that's the problem.

It still seems to be a big denial issue among vegans. And I guess the rant is necessary because I feel like their denial is what caused me the suffering, confusion, and finally the radical change in diet I needed to finally get back on my feet again and feel almost as normal and healthy as I did before I went vegan to "get healthy." I can't help but worry about all the others who question about new health issues, or exacerbations of old ones when starting the diet, and then just drop off the message board later. I think some of those poor folks may be repeating the same unfortunate scenario.

Would I have ended up celiac/intolerant, or whatever anyway? I don't know. But I feel now that it was the closed-minded attitude of the vegan doctors that instigated this for me.

Okay...I feel better now! As I said, I'm not trying to trash anybody's diet or any doctors' reputations here, but I'm feeling a little angry and frustrated. I am a self-diagnosed, embarrassed, closet celiac at this point. But happy to finally be feeling better again!

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Celiac.com Sponsor (A8):

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Sorry you had such a hard time on the vegan diet. I hope remoing gluten from your diet is the key to good health.

My SIL and BIL were both vegan for a while. They got reeeeeally preachy. It got to the point where we dreaded going to Thanksgiving dinner because we knew the lecture we were going to get over the turkey and mashed potatoes. Turns out both of them ended getting really sick from vitamin deficiencies and started to reintroduce dairy and some meat into their diets. They don't lecture us anymore. :lol: I am glad the vegan diet works out for some people, but it definitely is not for everyone. I have toyed with the idea of removing meat from my diet, but I don't think I would want to go totally vegan.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I sometimes feel the gluten thing was a big PAYBACK for me.

I'm so sorry I was preachy to people about veganism. Now, most of the people in my life have no idea what I eat or don't eat...I'm embarrassed to tell them what happened to me, and I'm pretty sure they just think that now that I won't touch anything, I must have some psychological eating disorder or something.

After the way I used to preach at everybody, it's just too embarrassing for me to tell them what happened. Like I said before: I'm now a self-diagnosed, severly humbled, ex-vegan, closet celiac!

I am happy to be feeling pretty good these days, though!

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I sometimes feel the gluten thing was a big PAYBACK for me.

I'm so sorry I was preachy to people about veganism. Now, most of the people in my life have no idea what I eat or don't eat...I'm embarrassed to tell them what happened to me, and I'm pretty sure they just think that now that I won't touch anything, I must have some psychological eating disorder or something.

After the way I used to preach at everybody, it's just too embarrassing for me to tell them what happened. Like I said before: I'm now a self-diagnosed, severly humbled, ex-vegan, closet celiac!

I am happy to be feeling pretty good these days, though!

Spunky

I guess it's one of those things that you have to go through before your understand the "other guy's" point of view. Prior to my husband being celiac, I thought gluten - free diet was a quirky fad like vegan is a fad. I couldn't see the purpose of gluten free living as much as I could see the purpose of vegan.

A vegan diet would be the death of my husband literally as he cannot digest fruits and vegetables - has not be able to since 1977. He would die of starvation on a vegan diet. He was almost like a dead person for many years on a regular diet as he didn't know he had celiac. He was not absorbing his nutrients, fats and calories for many, many years. Little did we know that if we switched him from "WOBR" based foods to all meats for example, he'd get better. He is truly someone who needs the "caveman" diet.

I think there's a place for both gluten free diet with meat and vegan diet; but I do resent militant vegans who want to stop any and all production/consumption of animal meats. I do not want any interference from vegans and wish they'd mind their own business....it's like when someone tells you about their religion and is desperately trying to convert you - to the point of using violence or belittling the carnevore. MYOB..and get away from me and go eat your vegetables yourself.

WOBR = wheat oat barley rye


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I sometimes feel the gluten thing was a big PAYBACK for me.

I'm so sorry I was preachy to people about veganism. Now, most of the people in my life have no idea what I eat or don't eat...I'm embarrassed to tell them what happened to me, and I'm pretty sure they just think that now that I won't touch anything, I must have some psychological eating disorder or something.

After the way I used to preach at everybody, it's just too embarrassing for me to tell them what happened. Like I said before: I'm now a self-diagnosed, severly humbled, ex-vegan, closet celiac!

I am happy to be feeling pretty good these days, though!

I am glad your feeling better. Time will get you over your embarrassment. You need to think of this as a learning experience and I hope you will eventually get past the point where you feel like hiding your celiac restrictions. You should come out of your closet and use this experience to help others around you. Celiac is genetic so at the very least you need to clue in your relatives. It may be hard to admit that you were a bit overhanded about being a veggie but the amount of respect you will gain from others by admitting that you were in error may be more than you think. It is not the mistakes we make that color others views of us as much as the inability to say we were wrong. There is nothing wrong with a veggies way of life but with celiac it is very, very hard to do. You didn't know you had celiac when you were preaching, now you do and it is so very important that as many people as possible are woken up to the possiblity of celiac in themselves and others so that they don't have to struggle for the length of time so many of us have.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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....it's like when someone tells you about their religion and is desperately trying to convert you - to the point of using violence or belittling the carnevore. MYOB..and get away from me and go eat your vegetables yourself.

I know completely where you are coming from. My MIL, preachs about this miracle juice she found on the internet. She claims it cures cancer and everything. She is always pushing it in my face as well as John's. John had cancer 5 yrs ago and had a few rounds of high dose chemo. In turn he has major neuropathy problems in his feet, for which he is on pain medications for or he would not be able to work. She pushes the juice to him, preaching that he doesn't need any drugs and we all rely on drugs to get us through the day. The only pill I ever take is an occasional immodium or tylenol pm.

Since I work with cancer patients, she is always pushing the juice for me to give to them too, saying it has cured Hodgkins and such and she knows people....this and that.

It bothers me, cause she doesn't care about anyone's point of view but her own. She thinks that because I work with patients who are on clinical trials, that I should be more open-minded.

She is also very religious and is pushy with that too.....


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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The thing that gives the Vegans so much credibility in their own minds, is the fact that most meat is tainted.

I live near farmers and they do still give their steers hormones and they feed them "wheat gluten" to save on feed costs. It's very sad and very sad for the cows as well. You can see that the cows are not happy and not well.

It's not the meat per se that's bad, but what they are fed. How undernourished these cows are, I can only imagine.

I do believe the caveman diet is the way to go. The Weston Price people really do have this figured out, when they say eat grass fed beef, but who can afford it.

I live near soybean fields and they spray those crops and then the deer eat the sprayed soybeans, so even deer meat is not safe, but of course it's safer than beef.

I can also understand your embarrassment at believing in one diet, one moment, and then changing your mind. All this diet stuff is confusing. I know I've went back and forth many, many times. You are not alone in that.


Osteoporosis, and sacroiliac arthritis diagnosed 32 yrs of age.  Chronic low wbc, Severe constipation, Migraines, severe GERD, multiple miscarriages, Sjrogen's disease, positive ANA, thyroid nodules (hyperthryoid), fatty liver disease with elevated enzymes, low vitamin D, low protein, IBS, SIBO, Discoid lupus, mulitple food allergies and massive hair loss.  I left my career because I was too sick to keep working, and it was devastating because I couldn't apply for disability without a diagnosis.  My daughter was a preemie and she has Central Auditory Processing Disorder (CAPD) and had a positive ANA and Rheumatoid Factor at 16 and now has been dx'd with Hashimoto's.

 

Allergic to:  corn, rice, beans, tomatoes, dairy.  Not diagnosed as celiac.

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It may be hard to admit that you were a bit overhanded about being a veggie but the amount of respect you will gain from others by admitting that you were in error may be more than you think. It is not the mistakes we make that color others views of us as much as the inability to say we were wrong.

I so agree with ravenwoodglass here. Being upfront about how you shouldn't have been preaching and that it is obviously not a diet for everyone will take you a long way (IMO).

And kudos to you for listening to your gut and figuring out that you needed to go gluten-free when your vegan support group was telling you not to.


Janet

Experience is what you get when you didn't get what you wanted.

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Okay. Before I start on doctors, let me point out something. A lot of doctors do not know about Celiac. It used to be taught that celiac was rare and only found in small children. But now, doctors still do not know and they SHOULD. There are a few doctors that do test for celiac and things. My pediatrition grabbed my mom's book on Celiac and read it... I think she still has it. I got diagnosed by another doctor. It's simply a matter of choosing a good doctor. Thank God for the internet, as that is how we found ours. But not all doctors are terrible. There are a few good ones.


I live behind an eternal mask

Glued there, to my face,

All it shows is happiness,

All it shows is fake.

-Light

Please leave your sanity in the sanity box by the door. There is no sanity allowed in this room...

THE CAREBEARS WILL JOIN WITH THE BOOHBAHS AND TELETUBBIES AND TAKE OVER THE UNIVERSE WITH MACHINE GUNS AND BRAINWASHED CHILDREN!!!!!! DUCK AND COVER!!!!

If you believe that the media is trying to brainwash our children with pointless television copy and paste this into your siggy with your name attatched. : Daughter_of_TheLight

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