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GTO

Withdrawals?

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I am new to this site and have found it very useful in trying to figure out my problem, but....

I am 42 years old and Approx. 10 years ago my family lived in a moldy house that made us all ill, we moved from that location where I had become terribly sick and everyone got well except me, I suffered terribly with diarea, GI problems, headaches, depression, anxiety, vision problems and more for a year, no doctor could find an answer. I learned on my own that the only thing that helped was eating very clean and very very slowly i got better. We lost everything we owned and over the years I have ate mainly nothing but whole wheat noodles and lauras lean beef. I decided sulfites or some ohter additive must be my problem, I managed to keep working and still had bouts and felt bad.

My mother also had similar problems where she ended up in the hospital for a month with chest, shoulder and joint pains and ill and despite all the test, they could not find the problem, only strong antiinflammorties helped. We did notice she improved when she only ate fresh fruits. An inflammation scan showed she had lots of inflammation thru her body, with the largest concentration being in her abdomen. She has since found if she stays away from wheat and gluten, she does well and doesnt need much medicine at all and all swelling goes down in her feet and hands.

So following mom's lead and insistance, I started trying to remove wheat from my diet early last year and got in trouble. I had noticed that while just eating wheat and beef, that if I didnt eat my wheat I got very weak and after eating eat was energized. So once going to Amy's mac and cheese (gluten free) I had a bout that took several months of beef and oatmeal to get out of, but never got back in my old groove. I did notice that my constant ringing in my ears started to come and go once I stayed off the wheat pasta. In Novemebr it hit again, I had been adding Kamut noodles to my diet and still eating oatmeal. Despite my efforts, nausea, direa, pains and headaches have flourished. Upper GI and scans showed no problems, was scoped from both ends and the GI doctor advised i was inflammed from stem to stern. Biopsy's for fungus and bacteria were negative. He adivsed my wife (i was abit out of it from the scoping) that if the tests were negative then it must be food allergies. He did find a hiatal hernia and acid reflux but too much inflammation for just that, gaveme an antacid and sent me home.

I decided to try and do the gluten free scenario and it made me even sicker. I went on a organic rice pasta and beef diet and things went horribly worse. the headaches were the worst I have ever had and the anxiety and depression hit. I cant watch TV or do much of anything, skin crawly episodes that end in sweats and depression, and ears ringing again. Its been two weeks of this torture and it seems that I am starting to possibly improve and my ears start improving when suddenly it hits again and I am very ill and ears start ringing again. The headaches arent as severe now but are of migraine status. It comes in waves. Especially about a half hour after i eat, then (if) when it lets up some, I get real hungry and try and eat again. I read about withdrawals (when I can read) and at times it does feel like I am going thru some kind of withdrawal from drugs or something. But I am loosing my will and very discouraged.

The GI doctor told my wife I should get off wheat and such but didnt do a celiac test since he said i was too big to be a celiac, and he didnt see any holes in my stomach and such while scoping so I couldnt possibly be that.

Is this withdrawal normal? I am starting to think I wont live thru this!

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GTO, have you given all gluten, not just wheat? You must stop eating wheat, rye, barley, and probably oats. Gluten is not just wheat. If you haven't given it all up, then that may be why you are still getting sick. The ringing in your ears may have nothing to do with gluten. I have tinnitus, which is a ringing in the ears. To me, it sounds like a field of cicadas and this time of year it is really bad. The doctor I work for told me tinnitus is worse in the winter, especially inside where the air is so dry from running our heat. Mine is terrible right now. Maybe you should have a thyroid test run too. Find a new doctor is he doesn't want to test you.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Deb,

Thanks for the reply, I am being super strict and only eat the organic brown rice pasta and beef. Only drink filtered water and watching all care products and meds. Had my thyroid tested before and it was fine. My tinnitus never changed until i backed off wheat last winter, but who knows why but it definitly seems connected. I did learn that bananas make them ring badly and make me worse. It seems everything went crazy after going gluten free, ears and all. I did fail to mention that my bowels are staying pretty much normal now and my stomach pains and such seem to be better, but I seem to be getting extreme fatigue/exhausted now. Can withdrawal make it move to your head and generate so many more symptoms like the bad headaches, sinus pressure, stiff neck, depression and anxiety? Been two weeks and really getting discouraged.

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Try not to get discouraged, it can be rough at first but we have to remember it took a long time for us to get sick enough so this was found and it can take a varying amount of time to get better. You should get over the withdrawl period soon and things should improve alot. For me it was like this great cloud lifted about 2 to 3 weeks into being gluten-free.

Is your house gluten free? The sources of possible cross contamination in a home where gluten is still being consumed can make it real hard at first. Toasters, wooden utensils, pet foods, can openers, scratched cooking pots that have been used for gluten foods, shared grills etc.. can all be sources for CC and of course there are many more like drywall, glues, clays etc.

It is a real learning curve at first and it can seem to take forever before we heal, but for most heal we do.


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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Deb,

Thanks for the reply, I am being super strict and

Only drink filtered water and watching all care products and meds. Had my thyroid tested before and it was fine. My tinnitus never changed until i backed off wheat last winter, but who knows why but it definitly seems connected. I did learn that bananas make them ring badly and make me worse. It seems everything went crazy after going gluten free, ears and all. I did fail to mention that my bowels are staying pretty much normal now and my stomach pains and such seem to be better, but I seem to be getting extreme fatigue/exhausted now. Can withdrawal make it move to your head and generate so many more symptoms like the bad headaches, sinus pressure, stiff neck, depression and anxiety? Been two weeks and really getting discouraged.

Quite honestly that doesn't sound too healthy.....

Don't get me wrong... I can see why but perhaps you would benefit from more variety....

It could also be you are eating too much brown rice pasta... is it ONLY brown rice and water (+salt) ... ???

Also it sounds like a horrid time ... are you certain your wife is not eating gluten ? If she is then there is a very large chance you are being contaminated.... if she feels bad eating in front of you and stuff it probably just makes for increased chances of crumbs etc.

What I found with withdrawl is a lot of it is head based... its a very weird feeling and hard to describe to anyone who hasn't had it but variously its like a not-quite -outa body experience or feeling like you are disassociated slightly from your body and kinda driving by remote control.....

The reason I mention CC is this is a symptoms I get from very very low levels.... usually when its not enough to give me GI symptoms...


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

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Thanks for the feedback, every bit helps when feeling so hopeless and like your all alone in this!

I know my diet isnt healthy (for the most part) for now, but I had gotten so bad in the last 2 months I couldnt eat and lost a lot of weight fast. At least I'm not loosing weight now. I am being very careful of cross contamination and watching everything.

Since going gluten free, which i did once for 3 days and had some freaky sweating spells, quit and started eating wheat again, then very sick for another week and decided to try again. I had no idea that there was any kind of withdrawal possible and couldnt beleive how bad it got. It has seemed like I was not "in body" or floaty, my ears at one point got so sensitive any noise in the house seemed to cause pain in my head. Strangelty whatever is happening seems to hit in waves! And when its at its worse I get skeptical and start to second guess it all and give up.

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