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Rpm999

Something Just Isn't Right

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all of the symptoms i see people have with "gluten withdrawal", i have normally since i've been real sick, like:

"The addictive nature of gluten is often overlooked. For some, the first days and weeks of following a gluten-free diet are characterized by food cravings, disorientation, irritability, sleepiness, depression, mental fogginess, fatigue, and/or shortness of breath. If you are a member of this group, the very fact that you are experiencing many of these symptoms should reinforce the need to exclude gluten from your diet. These are common symptoms of withdrawl of detoxification from gluten-derived opiods and brain neurochemical imbalances. The evidence suggests that about 70 percent of celiac patients will experience these symptoms when beginning a strict gluten-free diet."

seriously, i don't think i can feel any more horrible than i do now, has anybody been in this situation? there has to be quite a few other things wrong with me, it just feels like that...messed up dreams, bad fatique, EXTREMELY off & foggy, crying for no reason

to all you people with experience, before i go gluten-free, what should i have checked besides thyroid/adrenal issues and all that? it's just killing me, i literally can't go gluten-free until i heal some other things at least cause it's been one thing after another, my system is so bad that i STILL have a sinus infection from MONTHS ago even :rolleyes: ....i just feel alone with this and going through beyond hell...anybody else been in this place? and yes, i know, in the long-run it'll be good and i definately plan to go gluten-free, but like i said i feel like i'm going through so much that my body can't even handle it with endless neuro and physical symptoms i have to begin with....makes it worst i don't have a doctor at the moment

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Keep in mind that you won't necessarily have "gluten withdrawal." I didn't.

Gluten itself can be causing all these problems, if gluten is the culprit.

How were you diagnosed/were you diagnosed?

It may be worth it to find a doctor as you may have other issues. Gluten symptoms can mimick (and be mimicked) by many other disorders.

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Keep in mind that you won't necessarily have "gluten withdrawal." I didn't.

Gluten itself can be causing all these problems, if gluten is the culprit.

How were you diagnosed/were you diagnosed?

It may be worth it to find a doctor as you may have other issues. Gluten symptoms can mimick (and be mimicked) by many other disorders.

yeah i need an immunologist/neurologist, ever since i had an insane acid reflux attack my nerves have just gone crazy, along with my body obviously. literally, the right side of my body feels inflamed/stiff...i have a dull feeling right in the center of my chest, glands popping around, locked up spine feeling...still a lot unanswered, but hey what can you do

i really just feel like some things got real thrown off in that attack, and it's evident my body is struggling.....i've been bed-ridden and just bad, everything feels so bad.....guess deficiencies should be checked too, neurolly it's just gone out of control.....i even have food cravings recently and only being able to sleep a couple of hours, when most of this time i've had no hunger whatsoever and sleeping way too much...i'd take that over this though :lol: probably thyroid i guess

oh but anyway i had some kind of bloodtest and all i was told was "one level came out slightly abnormal, another level came a bit more abnormal"....whatever it may have been

i'm just trying to figure out what else may be wrong just based on how things have came into play, that attack, how i felt during it....that acid reflux attack was about 10 hours, barely could breathe, threw my body so out of wack...sadly i still feel the damage

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I myself did not have gluten withdrawl either. I missed the convience of fast food and already made products from the grocery store.


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

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

36_22_10[1].gif

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I had a bit of withdrawl but it really wasn't any worse than most of my regular days before I went gluten-free. I got a little moody but that was a small price to pay since my stomach pain and intestinal cramps and D were gone within just a few days. Not everyone has any withdrawl but it is important to know it can happen. It is generally a mood thing for most and really not bad enough for you to delay your healing in fear of it. Blood tests when positve are quite accurate, you really do need to give the diet a good try for at least a couple months.

If you do get a bit of withdrawl drink lots of water, sleep as much as you can and just tell yourself that it is limited. Many of us felt the way they describe withdrawl every day before we went gluten free, you do run the risk of ending up that way yourself if you ignore this. My brain fog got so bad I had times I couldn't even remember how to start my car or what the name of a fork was, you so don't want to get to that point.

Start taking some sublingual B12 also as soon as you can that will help a great deal also with the withdrawl, if you even have one.


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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The only symptom I had of gluten withdrawal was desperately craving bread for 2 weeks.

I made do with Fritos and Guittard chocolate chips (not together, but definitely in large quantities), and finally the cravings disappeared).

The only symptom of gluten problems that I was aware of before going gluten-free was a truly horrific skin rash (DH), that itched, burned, oozed, and blistered. I had other symptoms, but didn't connect them with gluten, and pretty much ignored them.

The rash completely disappeared when I went off gluten, along with

1) alternating diarrhea and constipation

2) terrible acid reflux (which didn't completely disappear, but greatly improved, and I was able to cut my Nexium dose in half)

3) thyroid problems (again, they didn't completely disappear, but I was able to cut my dosage in half)

4) 20 pounds of fat (I was very happy about that one)

5) abdominal bloating

6) constantly growling stomach

7) feeling constantly exhausted

I can't speak for anyone else, but I felt SO MUCH BETTER off of gluten--that was all the diagnostic confirmation I needed to decide to stay off of it forever.

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The only withdrawl symptom I had was one scarey episode of low blood sugar. But I really brought that on myself, because I followed South Beach Diet when I went gluten-free because I didn't know what else to follow. If you're prone to low blood sugar, make sure you eat plenty of other carbs like white rice and potatoes and corn, if you tolerate.

I also was hungry all the time the first few days.

Incidentlly, my sinuses cleared within a week. If you don't already do so, do nasal irrigations. Go to Walgreens and get NeilMed Sinus Rinse. Nasal Irrigations help me tremendously, I'd be bedridden without them.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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I used to have sinus infections several times a year. I gave up dairy seven and a half years ago and never had another one. If you are still having dairy, this is a step you could take. You can google and read about the link between dairy and sinus problems. It is well documented.

I continued to have sinus headaches, though. Off the gluten and they went away ... at least unless I accidentally gluten myself :(

Another thing you might try is cutting out simple sugars. I know that when I am fighting off getting a cold (basically now I get a little sniffly, but I can pretty much stop any progression) I take Vitamin C and avoid the sugar.

Have you been given antibiotics for the sinus infection? If that didn't work, perhaps you need a different one. I remember my children getting infections that didn't respond to either of two more common antibiotics. The doctor finally did some research with an expert at a medical school and prescribed some unusual thing that the pharmacist didn't even have in stock. So rare that he came out and asked, "What is it that your children HAVE?" Boy, did the folks in line inch away from me then :lol: Then I read at home that the drug is usually prescribed for leprosy :o

Also with antibiotics, you kill off the friendly bacteria in your gut. So taking a probiotic could really help you feel better.

I think you need to get rid of that infection. It cannot but help cause you feel bad. What do your doctors recommend? Perhaps a visit to a specialist is needed.

I don't know of anything in gluten that will allow for healing. So that is no reason to continue on it. You may never feel better if you don't cut out what is making you sick.

Have you thought of an elimination diet? Simple, plain, easy-to-digest foods may be what your body needs right now.

But, if I were you, I would try to get rid of that long term infection. A lot of what you are experiencing could be due to that.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I generally felt better within the first few days of going gluten free. My GI symptoms improved almost immediately.

The only negatives I experienced were constant hunger for the first few weeks, and then a few months later some depression/moodiness. I think the mood problem was more from feeling deprived and thinking about that long term. I finally just got busy in the kitchen and learned to make all that I was missing in the way of food. It took repetition and perseverance , but I can now make just about anything I was longing for gluten free.

It has taken months for some of my original symptoms to go away, and some of them have not cleared up entirely. But in no way can I say that going gluten free caused me any further symptoms other than the two I just stated.


Positive Bloodwork January 2007

Positive Biopsy Feb. 2007

Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

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I didnt concider my post diet symptoms as "side effects" but yes I craved a pizza and other foods but I had always enjoyed them and going without a pizza for over a week was rough, but glad I did.... also happy I found a suitable replacement as soon as I could, granted first couple tries didnt quite live up to my craving but I got it down good now....

And I must say after "leveling off" somewhat am so very glad I started my health is so much better now!


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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Well, about all I can add is that since you're having nerve/muscle issues, like dropping things, and you mentioned having heartburn (or as you said "acid reflux"), what comes to mind first is B12. I had some serious nerve problems and body aches until I started taking methylcobalamin, a sublingual B12 supplement.

From what I've read, taking antacids can destroy the stomach's ability to produce something called Intrinsic Factor, which is an important first step to breaking down B12 from food. Without it, you cannot obtain the needed B12 from ordinary food sources, thus supplementation is necessary.

Also, magnesium has helped me beyond words. I could never say enough about that. We are all somewhat different, but apparently these two nutrients are typically helpful to Celiacs.

HTH


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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thanks for the advice everybody!!!

but yeah neurolly i just feel so weird, i feel like everything people say goes right by me, nothing just feels right....kind of freaky if you ask me, it's like....so hard to explain, i know how you people feel, it's just like there's no flow to things like there is normally, it's all off and a hassle....being sick for this long and mostly in the house has made me really see how it is, but it's hard when your body just can't take moving around much, rough to deal with...but it's weird, i feel happy sometimes, not depressed, just severely off....i guess it's good to have some levels checked, cause it feels like that to me, like some things just got thrown off in the midst of it all, especially since my nerves feel off....i get mad when doctors say anxiety, because they assume since my body is shaky that it is, but really it's just my nerves/pulse being all off, i'm not anxious at all...complicated huh? :lol:

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I can really relate to feeling off. I feel like I have only had hours of feeling "normal", not even days, since all this craziness started. I too had a crazy reflux episode that I can't believe was reflux and it was so crazy and painful and heart attack like. I have also had dizziness, nausea, severe headaches, all in "attacks" that keep me in bed or at home for stretches at a time. Doctors have kind of "undiagnosed" me from Celiac and are saying it's migraines and migraine variants and who knows if they are right. but i have been off gluten since May as i am willing to do or try anything to feel normal. Are you taking anything to help with reflux. Protonix has helped my reflux issues and I am taking a Magenesium, B2 supplement that's supposed to help avoid migraines.

It is really frustrating to not feel close to normal and not have any answers from doctors though. Hang in there. Good luck to you.


Liz

Dianosed "possible Celiac" May '07 per biopsy with blunted villi

Bloodwork negative

Gluten-Free since June '07

Do NOT have Celiac genes per GI doctor

2 kids, 3 y.o. girl and 19 month old boy

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