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newyorkdave

Gluten = Opiate? Help Appreciated

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Hi I would greatly appreciate any feedback on this. I know you are not doctors, but here's the story - I tested negative for celiac, but apparently there is something called "gluten intolerance" which is not as severe as celiac and the symptoms are more benign/subtle. And I wonder if I have it. Maybe somebody could offer some feedback? or if it sounds familiar?

Basically my symptoms (which led me to test for celiac) are:

Sleepiness

Eye twitching

Feeling run down occasionally

Watery eyes

Lowered athletic ability

Exhausted all the time

Legs feel like lead sometimes

Get shaky/weak, especially when i have eaten sugar or fruit juice or when i am stressed out.

Hair seems dryer than it was in the past

Skin seems dryer, doesn't feel supple, feels more "uncomfortable" somehow

I love bread and beer with a passion... :) rice and wine just is not the same and never will be

Please note I don't have the usual diarrhea/constipation and stomach pains that are the "classic" gluten symptoms. That is why I am confused.

Adrenal fatigue seems to match my symptom list - i read that gluten intolerance can cause adrenal fatigue.

then i read that gluten has opiate-like qualities. wow. for some reason that resonated with me. beer and bread are kind of my go-to foods when I'm feeling bummed out.

Health wise everything else is fine. But I KNOW I am not fine. Or I could be a whole lot better let's put it that way. And the doctors - well, they wait until you're really screwed up before they do anything. After all, they've got sicker people to deal with.

THANK you in advance to any replies.!!!

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I am gluten intolerant and tested negative for celiac. You can do one of two things at this point, one is try the gluten-free diet and see how you respond. The other is be tested by Enterolab. They test for gluten intolerance.

I also have adrenal fatigue syndrome. Adrenal fatigue can also cause the symptoms you list. I just read a good book on in called Tired of Being Tired by Jesse Lynn Hanley, MD. I am following all the suggestions in the book and have found an MD who also practices holistic medicine. My doc did a hair analysis, which told me all my mineral levels and what dietary changes and supplements I need to get better. I also purchased a far-infrared sauna and use it 30 minutes each day -- my skin is now as soft as my 8 year old's, and I'm 43!!

I've still got a long way to go ... but I'm doing much, much better now that the adrenal fatigue has been addressed. Many celiacs and gluten intolerants do not have the gastro symptoms.

Welcome!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I was tested by Enterolab after my daughter tested positive. I thought I didn't have any symptoms but going gluten-free gave me more energy. I used to always be tired and need a nap even after getting 10 hours of sleep. My eyes used to be watery and I just noticed they are not anymore. :) My daughter used to complain that her eye was twitchy.

So I think it is possible your symptoms are caused by gluten intolerance. You could either try the diet and see if they go away or get tested by Enterolab which is more sensitive than the blood tests.

I used to love bread, too, but I don't even miss it now. I don't want to go back to the way I was. I noticed a difference in 2 or 3 days, so you might see results pretty quickly if it is gluten intolerance.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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Welcome! You came to the right place.

I don't have Celiac either, and can relate to your list of symptoms. I did have some digestive issues, but not as bad as "classic" Celiac. Didn't get the bad weight loss like some do. Gluten intolerance is very real and needs to be treated the same as Celiac - with a gluten-free diet. I've wondered if I have Adrenal Fatigue too, but am trying to stay in denial.

Have you tried the diet? It can't hurt and will help a LOT if gluten intolerance is really your problem.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Hi Dave -

After almost 9 months, I kind of feel like EVERYONE could benefit by giving up gluten....but who knows.

Just a thought - did they test your thyroid?

And BTW - - I was severely Celiac by the time I was diagnosed (at 44), but had NO intestinal symptoms until about the last 3 - 4 years. All kinds of other "issues" for most of my life, and those seem to be abating, blessedly (depression, mainly).


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Wow thanks everyone for responding so fast. I just checked out the enterolab website and it looks like it can't hurt. Yes, I have tried the gluten free diet - I can only manage about 3 days at a time, it SEEMS like I felt a little more "steady" I guess after about 3 days, but my mood was bad - beyond irritable I would say more like simmering rage. So to counteract this depressed rage-filled mood I would give in and get myself a delicious turkey sandwich a bran muffin and a few bottles of Guinness! the rage was gone and I felt relieved. I would tell myself this gluten thing is in my head. But then a couple of days later sure enough I would start feeling like crap again. I guess I have to give it more than 3 days, huh? I live in NYC in the entertainment biz and having to find gluten free food on the go is a MAJOR PAIN. Gluten free for life would be a major pain - no eating out, no convenience eating, meal planning every day. for example, dates are restricted to starbucks or a bar - no dinner. As far as asking chefs if the meal is gluten free, forget it - you can't trust that. But there are worse things. Maybe diabetes is worse - although I don't know. Diabetics can eat crusty italian bread. <_<

dingogirl my thyroid is fantastic, thanks for asking. :)

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Wow thanks everyone for responding so fast. I just checked out the enterolab website and it looks like it can't hurt. Yes, I have tried the gluten free diet - I can only manage about 3 days at a time, it SEEMS like I felt a little more "steady" I guess after about 3 days, but my mood was bad - beyond irritable I would say more like simmering rage. So to counteract this depressed rage-filled mood I would give in and get myself a delicious turkey sandwich a bran muffin and a few bottles of Guinness! the rage was gone and I felt relieved. I would tell myself this gluten thing is in my head. But then a couple of days later sure enough I would start feeling like crap again. I guess I have to give it more than 3 days, huh? I live in NYC in the entertainment biz and having to find gluten free food on the go is a MAJOR PAIN. Gluten free for life would be a major pain - no eating out, no convenience eating, meal planning every day. for example, dates are restricted to starbucks or a bar - no dinner. As far as asking chefs if the meal is gluten free, forget it - you can't trust that. But there are worse things. Maybe diabetes is worse - although I don't know. Diabetics can eat crusty italian bread. <_<

dingogirl my thyroid is fantastic, thanks for asking. :)

Dave, sorry just got home, Ill respond tomrrrow (European time) but I have plenty to say :D


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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And BTW - - I was severely Celiac by the time I was diagnosed (at 44), but had NO intestinal symptoms until about the last 3 - 4 years. All kinds of other "issues" for most of my life, and those seem to be abating, blessedly (depression, mainly).

If you don't mind me asking, what type of symptoms did you have?


~Kristy~

Zachary (5 y/o son) -negative labs, no biopsy, gluten-free diet 3/06 with amazing results

*Enterolab testing: auto-immune response, main-Celiac gene/HLA-DQ 2, non-Celiac gluten sensitivity gene/HLA-DQ 3

"Congratulations!

Today is your day.

You're off to Great Places!

You're off and away!"

--Oh The Places You'll Go

by Dr. Seuss

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Dave, sorry just got home, Ill respond tomrrrow (European time) but I have plenty to say :D

:lol::lol: Sorry, Steve, have to pick on you a little ...

Dave, he'll have plenty to say!! ;) And very good info, too. He researches everything, and knows how to live as a celiac, and live well and eat well, I might add! You won't be as restricted as you are now thinking. There are actually a lot of restaurants that have a gluten-free menu -- PF Changs, Cheeseburger in Paradise, Carrabas, Maggiano's (no gluten-free menu, but the chef comes to your table and they have gluten-free pasta), Outback (even their Chocolate Thunder From Down Under is gluten-free). Also, if you're a regular anywhere, you can teach them to cater to you. In NYC, there are a lot of other options as well. Everyone always wants to try Risotteria when they go there.

I'd keep researching the adrenal thing, too.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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If you don't mind me asking, what type of symptoms did you have?

I don't know where to start.....but I have always felt that my brain was "off." Dealt with major bipolar issues, swinging from depression (very deep) to mania, for the last 25 years, but felt it in childhood also, and worked SO hard to overcome. Felt the fog in my brain increasing in the last 15 years, and the last 10 very severely. I was a pretty voracious reader and quit reading in the last few years (just started again) as my brain was literally as a sieve - things just fell thorugh. At times would spend weeks on the couch, hardly able to move...and conversely, I have been FIVE entire - and I do mean entire - days without sleep. I think I'm one of those who's been hit hard neurologically/psycologically. here's an article I got today, about cognitive impairment and Celiac:

http://www.newswise.com/articles/view/524150/

And when I removed gluten, my brain sort of....settled, and cleared. I don't know how else to explain it. but, my body, after all these years, is a bit worn out and that is what I'm addressing now.

Dave - - do not despair! the gluten-free life is not nearly so difficult as you're makign it sound. check out this site:

celiacchicks.com

two girls in NY who have quite a good time and don't suffer in their lifestyle. It is far easier than you think to dine out, a phone call in advance to the restaurant is my best advice. And eating on the run.....that will take a bit of planning but even that is not that hard.

As for your Guinness...well, that's a tough one....I'm a wine drinker myself but used to enjoy Guinness. There is a gluten-free beer (Bard's) I found to be quite decent....


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Wow thanks everyone for responding so fast. I just checked out the enterolab website and it looks like it can't hurt. Yes, I have tried the gluten free diet - I can only manage about 3 days at a time, it SEEMS like I felt a little more "steady" I guess after about 3 days, but my mood was bad - beyond irritable I would say more like simmering rage. So to counteract this depressed rage-filled mood I would give in and get myself a delicious turkey sandwich a bran muffin and a few bottles of Guinness! the rage was gone and I felt relieved. I would tell myself this gluten thing is in my head. But then a couple of days later sure enough I would start feeling like crap again. I guess I have to give it more than 3 days, huh? I live in NYC in the entertainment biz and having to find gluten free food on the go is a MAJOR PAIN. Gluten free for life would be a major pain - no eating out, no convenience eating, meal planning every day. for example, dates are restricted to starbucks or a bar - no dinner. As far as asking chefs if the meal is gluten free, forget it - you can't trust that. But there are worse things. Maybe diabetes is worse - although I don't know. Diabetics can eat crusty italian bread. <_<

dingogirl my thyroid is fantastic, thanks for asking. :)

There are LOTS of gluten-free restaurants in NYC, so if you do decide to eliminate gluten, you'll still have plenty of options as far as eating out...


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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Dave, the rage, the cravings etc. are obviously caused by an addiction to gluten, and are withdrawal symptoms! They could last for up to two weeks, and giving in to them is not helpful. You need to stick it out and go through it, just like you would have to if you'd be withdrawing from street drugs.

Once you get through the withdrawal stage, that's when you would start feeling better. You can do it, I promise. Others here have gone through the same thing and lived. :blink:

As many people have already said, you'll be able to find gluten-free beer, pizza, restaurants etc. It won't be as convenient any more, no doubt, but you'll be so much healthier!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

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:lol::lol: Sorry, Steve, have to pick on you a little ...

Dave, he'll have plenty to say!!

I'd keep researching the adrenal thing, too.

Yep but Ursula already got most of it ......

Dave.... if you want to research this look in google for "exorphins" this explains what you are going through....

Symptoms wise.... well you are a perfect example of how different people react.

I tested negative for celiac, but apparently there is something called "gluten intolerance" which is not as severe as celiac and the symptoms are more benign/subtle

This is a well debated issue, my OPINION is there are celiacs and latent celiacs ... you are either celiac or not and people react vastly differently BUT IMVHO if someone is reacting to gluten they are celiac, we just don't understand the mechanisms well enough and rely instead on a diagnostic on a single symptom which is the biopsy. This is changing though in favor of blood tests and now the enterolab stool tests and the main idea of both of these is catching the disease before it does any further damage.

Sure the intestines are important but it is proven that celaics also get many other non-GI symptoms...

Start off here for reading http://jccglutenfree.googlepages.com/thene...tationsofgluten

Again its just my belief here (with a lot of research) that those who do not have intestinal damage are just in a phase of the syndrome where their bodies natural recuperative powers can repait the villi as fast as being destroyed. This doesn't help the immune system which is in effect running in overdrive 24x7 NOR does it stop the enforced cell replication increasing cancer risks .. it just means the villi are being repaired faster than destroyed.

At the same time people can also have positive biopsy but have expressed no GI symptoms... that is their villi are completely destroyed yet they don't report diarrea or cramps... perhaps theere is also a bit of the gradual onset here whereby you start to think its normal to have D every so often.

Unless you are a sexually active homosexual male or a nursing mother or exposed to nursing kids then the normal incidence of D is less than 4 times a year. Even if you are in a high risk group its less than 6....Your obviously not a nursing mother, you don't mention kids and your sex life is noones business than your own so these are just guidlines on normal incidence of diarrea...in other words most celiacs don't realise this.. we get used to having diarrea from time to time and think its normal...

With that knowledge you can perhaps work out if you have D more than the normal incidence....

If you do then the medical community will blame IBS.... in other words, they don't have a clue so they will just class you with other people who they don't have a clue about either.

However and this is important a very significant percentage of IBS sufferers test +ve for celiac disease.

Still others have soy or dairy intolerances. In other words IBS is Interesting BS..(fill in the missing letters) .. it doesn't really exist except for a way of classing a whole set of people with different not understood or diagnosed digestive disorders together.

So where does this leave you.....

Firstly if you have insurance get a blood test immediately ... you need to be actively eating gluten for the antibody tests and you should get a FULL PANEL....

A complete celiac panel includes the following tests:

antigliadin IgA and IgG (indicates gluten sensitivity)

anti-tTG and/or anti-endomysial

total serum IgA (rules out IgA deficiency)

anti-reticulin IgA

See http://jccglutenfree.googlepages.com/diagnostictesting

Whatever the results you can then decide from there BUT if you do remove gluten for a while and you do feel a new person then believe me the last thing you will want to do is go back....

Now onto survival:

As everyone has said, its really not THAT hard.

People tend to find it hard because their normal convenience food is wheat based but lots of convenience snacks exist... you can have sushi for instance (just take a small bottle of gluten-free soy sauce - I use the little cosmetics bottles that body shop sell ofr shampoo samples or you can buy similar from travel boutiques)

I can't say it will be as easy as picking up a sandwich or pizza but it is not so hard as you feel.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I don't know where to start.....but I have always felt that my brain was "off." Dealt with major bipolar issues, swinging from depression (very deep) to mania, for the last 25 years, but felt it in childhood also, and worked SO hard to overcome. Felt the fog in my brain increasing in the last 15 years, and the last 10 very severely. I was a pretty voracious reader and quit reading in the last few years (just started again) as my brain was literally as a sieve - things just fell thorugh. At times would spend weeks on the couch, hardly able to move...and conversely, I have been FIVE entire - and I do mean entire - days without sleep. I think I'm one of those who's been hit hard neurologically/psycologically. here's an article I got today, about cognitive impairment and Celiac:

http://www.newswise.com/articles/view/524150/

And when I removed gluten, my brain sort of....settled, and cleared. I don't know how else to explain it. but, my body, after all these years, is a bit worn out and that is what I'm addressing now.

Thanks for sharing, and I'm glad you're starting to feel better. :) Shame on the medical community for not being well versed in Celiac Disease and letting people like you, and so many others, suffer for so long.


~Kristy~

Zachary (5 y/o son) -negative labs, no biopsy, gluten-free diet 3/06 with amazing results

*Enterolab testing: auto-immune response, main-Celiac gene/HLA-DQ 2, non-Celiac gluten sensitivity gene/HLA-DQ 3

"Congratulations!

Today is your day.

You're off to Great Places!

You're off and away!"

--Oh The Places You'll Go

by Dr. Seuss

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Dave, it does take about a week to feel better when you are cutting out foods.

I made it my life for two whole months to watch everything I ate.

For a few weeks I also did a food journal. When cutting out gluten foods, I was extremely witchy, VERY tired, and all I wanted to do was eat non stop to fullfil some void. on day four I started to feel better from the withdrawl symptoms.

If you have others living with you, or work closely with other people in the work place, let them know ahead of time that you are cutting gluten cold turkey, and you may become a raging butthead for a week until the stuff clears your system.

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It took me SIX LONG DAYS off gluten - and I felt like an utterly new person...physically and mentally felt as though I"d risen from the dead. :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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. I also purchased a far-infrared sauna and use it 30 minutes each day

what is this and where would one procure it? And what kind of price?


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 got one of these www.sunlightsaunas.com. There are all kinds of price ranges; we got a large one, so it was a bit pricey. It was worth every penny though as I think it's helping. It's hard to tell because I made so many changes all at once.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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