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I'm Freaking Out

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Posted 31 July 2011 - 06:13 PM

I've been gluten free for about five days now and things are changing so quick I'm getting really freaked out. I've been overweight for a while, even though I don't eat a lot, but my gut is shrinking visibly every day. I'm getting fevers, and having bouts of extreme fluid retention. It was so bad tonight, my wife gave me a water pill to help. I was getting deep indentations in my legs just from sitting for a few minutes. I feel shaky and nervous. I even broke out into hives two days ago. I feel good mentally, and my digestion is fine. There just seems to be a whole bunch of weird stuff going on with my body and it is starting to make me nervous. Has anyone else experienced such rapid and extreme changes in so short a time. I have even noticed the bald patches on my legs (alopecia) regrowing hair already. Any advice or shared experiences would sure be appreciated. I wasn't really expecting too much when I went gluten free, but this is insane. My pants are already falling off and I had to move my buttons over and inch inwards, and now that is starting to feel loose. This can't actually be because of going gluten free, can it?
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Posted 31 July 2011 - 06:54 PM

i went through withdrawal/detox. night sweats, mood swings, extreme fatigue (no hives) but i was terribly UNDERweight so i don't know about that part about losing weight. i have gained healthy weight. i DO know i could DEFINITELY feel the difference almost immediately, especially with digestion - like, oh, this is what i'm supposed to be eating all along. if you are feeling that worried, see your doctor. there are many things related to celiac disease that you may need to consider.
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misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010


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Posted 31 July 2011 - 06:57 PM

I don't have any good advice or wisdom, but I wanted to send you hugs and hope anyway! It's a journey... :)
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Wife of a wonderful, gluten intolerant DQ2/DQ2 husband!
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Posted 31 July 2011 - 07:51 PM

My withdrawal symptoms include hot flashes and sweats, nervousness, fluid retention and light-headedness. However, I mentally feel very sharp-- the brain fog lifted very quickly. My mood is good, though I feel kind of jumpy. Cramps and bloating are gone. The sores on my hand and my leg are healing. Believe me, I don't mind losing weight at all, it just seems too rapid, and its kind of freaky. I suppose there is just a lot going on in my body now that I am no longer eating "rat poison" every day. I guess maybe I got used to being the way I was. I don't know. I just wish someone could say, Yeah I know what you're going through, and put me at ease.
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Posted 31 July 2011 - 08:38 PM

It wouldn't be a bad idea to check with the doctor, but just in terms of changes? Extreme, quick changes within days are within normal parameters. It's crazy, isn't it?

I started losing weight too when I went gluten free, within days. I was losing 1 - 1 1/2 pounds a day for quite a while - I was overweight, too, when I was diagnosed. By 6 months, I believe I'd already lost 40-50 pounds, without trying to diet at all. My hair started coming back in. I was not depressed for the first time ever. Insomnia went away, exhaustion went away, skin cleared up. Keeping my temper was suddenly 10 times easier than it had ever been. Aches and pains and vertigo and poor memory and clumsiness - all gone.

It's truly been stunning how much of what I thought was 'me' or 'getting older' has turned out to be gluten.

In your case...

The weight loss can be very normal. The shakes and nervousness could be gluten withdrawal.

The fevers and fluid retention...that I don't know. For me, I get both of these when I GET gluten. They go away without gluten. Something that many people get when they go gluten free is an increase in their gluten sensitivity. Some people have this happen a few months in, but some have the sensitivity level go up within days, and the reactions can change, so it could be a reaction to mild gluten contamination, perhaps.

But...I would be concerned a little with those two symptoms, potentially. Might be worth talking with a doc.

The hives - I really hope I'm wrong on this one, but that's one I can relate to. Some celiacs have other food allergies they were completely unaware of, and for whatever reason, they start becoming more of an issue after they go gluten free. The theory I heard that made sense to me was that so much of our body's energy was focused on attacking ourselves that there weren't any resources left to react to allergies much, even if our bodies would have done so normally.

For myself, I started having reactions to allergies I never knew I had, within days of going gluten-free like yourself. I started having headaches and other symptoms to other foods after about 2-3 days gluten-free, and at about 2 weeks gluten-free I ended up having breathing trouble from a food for the first time.

I was tested for food allergies and found some that way. I also ended up keeping a food journal, and that found a few other foods that seem to be problems.

So hives would be something to be paying attention to, at least.
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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


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Posted 31 July 2011 - 09:29 PM

The weight loss is for sure getting off gluten. Once I went off (Feb 1) I started losing weight like crazy. I'm down 43 pounds and going strong. :) My theory is that my body was storing all these toxins because I would gain weight for no reason and so quickly! Now with it falling off it's like my body just realized it could release it all.

Congratulations on the good things....and I hope you get the negative effects worked out soon!
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Posted 01 August 2011 - 03:57 AM

Thank you all for replying. I'm feeling somewhat better this morning, and hearing your stories has put me at ease. I think the rapid weight loss is making me swing back and forth from feeling good to feeling bad as toxins are released by the fat being gotten rid of. Had a dermititis eruption this morning, but just on one finger, haha. It's so weird. Guess I'm just going to have to hold steady and stick to my gluten free diet and wait out the weird attacks and ups and downs. Trying to not go crazy worrying about it, but it's tough.
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Posted 01 August 2011 - 04:39 AM

It does sound like you are going through withdrawl and that should end soon. As for the weight loss, I also lost quite a bit very quickly. I went from a size 14 to 16 to a size 2 to 4 within a month. It had me worried but it leveled off quickly and I stayed stable at that size and weight for years after that. Most of what I lost was bloat and it was nice not to look 6 months preggers any longer.
I hope you get through the withdrawl part soon. Stay strict with the diet as if you get accidental CC it can possibly keep the withdrawl hanging in.
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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)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)


Blue Heron

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Posted 01 August 2011 - 06:26 AM

Hi There -
I am new here, but have been gluten free since 2007. I went through all the withdrawal issues too - sometimes when eating something unknowingly contaminated - they come back for a spell.... I had severe allergies develop after going gluten free I was put on an elimination diet - finally had blood work, and scratch testing done - 35 foods to remove. Eventually the body healed and some of the foods have been added back in. I am on a rotation diet for lifetime. Each one of us is different - each of us had different withdrawals & food intolerance/allergies coming off Gluten. Hang in there & good luck :)
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Posted 01 August 2011 - 07:17 AM


I'm also very new - gluten free for 8 days. I WISH I had rapid weight loss. Could use the 50 lbs gone. I'm also freaky out, but for other reasons. I have a wee tad of complusive eating / binging. Have been to OA / FAA / Kay Sheppard. (Side note - I have not seen anyone mention anything about celiac and complusive eating specificly, are there any willing to say?) I have done avoid wheat/sugar/flour thing before for a while, but never able to stay with it - thinking now it was the gluten in those foods and my unwillingness etc.
Now naturopath has tested me and again stated I must stop gluten etc. Have twice in two years do blood work/ urine test and both times it shows intolerance to wheat / gluten / grains / dairy / eggs. (Having md do blood work, waiting for results, nervous actually that they will come back negative).
I feel clear headed, even if my body is aching (could also be the fibro... I'm a walking autoimmune disorder).
But weight loss.... clothes still tight, and afraid to weigh. And I'm heading for the gluten free processed foods, which I KNOW will not assist weight loss. This is where my complusive fear there is no food that I will be able to have. I know logically that there is LOTS of healthy good food. I just have to make it. (part of an issue especially when I'm not feeling well, and can't seem to lift a pan or stand for long and emotionally then want comfort, quick food).
I feel a bit alone in this, not in the celiac - I'm getting so much info on this site, but on the fear, and the fear that the blood shows negative and I will 'add' things in, and the fear that I won't be able to maintain staying on a celiac plan. Blessing besides this site, is my hubby is very supportive. Onward I continue..........
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Posted 01 August 2011 - 07:22 AM

I know exactly what you're going through. I went through a decent withdrawal myself when I removed gluten & casein from my diet. Hang in there. Lasted for a couple weeks and things began to improved fairly quickly. My symptoms were mostly neurological but that anxious, nervous, dizzy, panicky feeling was the scariest part of it.

The gastro I consulted at the time didn't have a clue. He didn't undertand about gluten withdrawal and made a face when I brought up what my research had uncovered on the subject, here and in other reading. But once I felt comfortable that it was normal for me to be feeling this way and relaxed a bit, that seemed to be half the battle. Weight loss, for me, a big yes!!! and it's stayed off effortlessly for over a year now!

Sometimes you just have to trust that your body knows what to do, returning to a state of health. Good for you!!!!
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010



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Posted 01 August 2011 - 04:11 PM

Thanks. You all are so generous with your advice. I went to the health clinic today and was told to take Zyrtec for the hives. That seems to be helping hold the allergies at bay. Luckily, my doctor's friend's daughter is celiac, so she is familiar, and very understanding and compassionate. She said the Zyrtec can be taken every day without building a tolerance like I would if I continued to take Benadryl. Sticking to the diet is no problem for me, although I did pig out on some gluten free lunch meats last night. LOL! Ate it with gluten free chips. I have been reading alot and I even downloaded an app for my iphone that identifies gluten-free foods. It's not complete, of course, but it does have an ingredient list that is helpful with all those long scientific names and initials, telling what is really gluten in disguise. It's called "Is there Gluten in that?" It's $7.99 on the app store, but to me it was worth it. Tonight we are having pork chops, tomatoes and cucumber and fried eggplant. We are using Pamela's gluten-free flour to bread the eggplant and make the gravy! For dessert, gluten-free brownie. Feel deprived? Nope. Just itchy. LOL!
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