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Withdrawal Wars


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#1 ScionTC

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Posted 22 January 2010 - 03:10 AM

First off, its really nice to meet all of you.

I was diagnosed around the middle of October '09. So far, I've been on the gluten-free diet 3 different times, and failed twice, due to accidents. My last accident was, of course, over the holidays, probably December 26th or 27th. This time I'm determined to succeed, and I've been gluten-free ever since, but the withdrawal symptoms are destroying me! In the last week, I've been having a lot of head aches, brain fog, difficulty concentrating, some eye and temple pressure (almost a passing out sensation), some assorted flu-like symptoms, insomnia, and a few day bout with the big D. Minus the D and insomnia, these are all new symptoms for me (longest I've been gluten-free so far!) While still on gluten, I mainly suffered with chills/shakes, severe stomach cramps, fatigue, and constipation.

I have also cut out soy and lactose to be on the safe side, but I know for a fact lactose cramps me up really badly. My questions are: 1.) Are these symptoms at all typical of withdrawal? 2.) How long have some of you experienced withdrawals? College just started back up (thankfully I commute, makes eating easier), but these symptoms are really destroying my ability to focus in class and on homework/studying, which is really the last thing I need at the beginning of a fresh semester. I welcome everyone's input!
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#2 ravenwoodglass

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Posted 22 January 2010 - 04:40 AM

First off, its really nice to meet all of you.

I was diagnosed around the middle of October '09. So far, I've been on the gluten-free diet 3 different times, and failed twice, due to accidents. My last accident was, of course, over the holidays, probably December 26th or 27th. This time I'm determined to succeed, and I've been gluten-free ever since, but the withdrawal symptoms are destroying me! In the last week, I've been having a lot of head aches, brain fog, difficulty concentrating, some eye and temple pressure (almost a passing out sensation), some assorted flu-like symptoms, insomnia, and a few day bout with the big D. Minus the D and insomnia, these are all new symptoms for me (longest I've been gluten-free so far!) While still on gluten, I mainly suffered with chills/shakes, severe stomach cramps, fatigue, and constipation.

I have also cut out soy and lactose to be on the safe side, but I know for a fact lactose cramps me up really badly. My questions are: 1.) Are these symptoms at all typical of withdrawal? 2.) How long have some of you experienced withdrawals? College just started back up (thankfully I commute, makes eating easier), but these symptoms are really destroying my ability to focus in class and on homework/studying, which is really the last thing I need at the beginning of a fresh semester. I welcome everyone's input!


I could be wrong but the symptoms I bolded are the symptoms I get from a glutening. Is there any chance you may have been glutened? Gluten can be sneaky, are you eating many processed foods? Have you eliminated gluten from your toiletries and checked all your meds? Are you doing baking with gluten flours for others? Have you replaced your toaster, scratched pans, wooden cutting boards and spoons etc.?
I did go through withdrawl but it was in the week or so after I quit gluten and the symptoms were increased anxiety, depression and irritability. Everyone is different but the withdrawl does not usually include D, that is more commonly caused by accidental injestion.
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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)

#3 bluebonnet

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Posted 22 January 2010 - 04:55 AM

i am 12 days into gluten free while still waiting for labs to come back and i am feeling some of the symptoms you are. yesterday seemed particularly difficult and i thought maybe i accidentally ate gluten because i was feeling anxious and a little irritable the whole day. i got bloated and my joints were hurting pretty bad too. i still haven't slept good so i'm hoping that continuing on will benefit me there soon!!! no doubt i'm feeling better but i too am curious if this is "withdrawl" or accidental glutening. sorry i can't offer advice but can tell you, you aren't alone! hope you get to feeling better!
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#4 ScionTC

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Posted 22 January 2010 - 05:23 AM

Thanks for the replies. The only non-whole food I'm consuming is Heinz Ketchup (I'm the only user of it, no cross contamination). Everything else is fresh fruits, veggies, lentils and unprocessed meats. I do take Centrum Liquid Multi-vitamin, which is supposed to be gluten-free, and take regular tums for calcium. I drink nothing but water, use a variety of Tom's toothpaste, use dial hand soap and prell shampoo. I was using listerine, but for some reason after using it I was getting shortness of breath, so I've been away from that for two days now.
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#5 mindwiped

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Posted 22 January 2010 - 06:12 AM

Thanks for the replies. The only non-whole food I'm consuming is Heinz Ketchup (I'm the only user of it, no cross contamination). Everything else is fresh fruits, veggies, lentils and unprocessed meats. I do take Centrum Liquid Multi-vitamin, which is supposed to be gluten-free, and take regular tums for calcium. I drink nothing but water, use a variety of Tom's toothpaste, use dial hand soap and prell shampoo. I was using listerine, but for some reason after using it I was getting shortness of breath, so I've been away from that for two days now.

Check your Tums...there was one type we'd had in the house that had wheat in it. I hope it's not the type you're taking.
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"When I'm worried and I can't sleep/I count my blessings instead of sheep/And I fall asleep counting my blessings"- Bing Crosby, White Christmas

#6 ScionTC

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Posted 22 January 2010 - 06:15 AM

Check your Tums...there was one type we'd had in the house that had wheat in it. I hope it's not the type you're taking.


Ah, you probably mean the smoothie or whatever type. Nah I don't take those, and according to their website, the rest of their products are gluten-free.
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#7 sandsurfgirl

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Posted 22 January 2010 - 09:43 PM

You might just have a stomache virus. Not everything is due to celiac. The flu symptoms, headache, achiness and D are pretty much standard for a stomache virus. If you are sure you haven't had gluten, then I would just keep hydrated and you're probably contagious if you are feverish so stay home a few days.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#8 ScionTC

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Posted 23 January 2010 - 02:43 AM

You might just have a stomache virus. Not everything is due to celiac. The flu symptoms, headache, achiness and D are pretty much standard for a stomache virus. If you are sure you haven't had gluten, then I would just keep hydrated and you're probably contagious if you are feverish so stay home a few days.


I really hope you're right! Thanks for the support everyone :)
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#9 sandsurfgirl

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Posted 23 January 2010 - 04:05 PM

I really hope you're right! Thanks for the support everyone :)



One of the most frustrating things about this disease for me is that the symptoms mimic so many other things. The attacks that I had prediagnosis that sent me to the E.R. always seemed like a heart attack. Scary!

My kids have had so many stomache viruses over the years I feel like a stomache virus expert. :) You sound like you are so careful and strict so it just doesn't make sense that you got glutened.
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Lots of doctors diagnosed me with lots of things including IBS, lactose intolerance, wheat intolerance, and quite a few of them threw up their hands in total confusion.

Had GI symptoms, allergy symptoms and unexplained illness my whole life.

Jan. 2010 Diagnosed celiac at the age of 40.
Ready to get well and get on with my life!

#10 muchmalignedminx

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Posted 09 February 2010 - 02:03 AM

Hi...I was diagnosed last friday the 5th feb 2010. I started being gluten free straight after my visit to the doctor (biopsy positive for villious atrophy) From late evening I started with a general feeling of being 'not quite right', increased thirst, feeling as if I couldnt think straight, found it difficult to find the right word when in a conversation...became withdrawn, craved something sweet to eat, tearful and irrational. These symptoms increased over the weekend. I devoloped abdo pains and couldnt sleep. Sunday night I'd had enough and went to my local a & e but was sent home when I explained about my diagnosis and symptoms. Told it would get worse before it got better and to hang in there! not helpful really. Its tuesday now and I feel a little more clear headed and most of the other symptoms have faded away. Still very tired and pale but Im feeling confident it will get better over time. Knowledge is power really I guess and you've done the right thing by looking at forums like this...it does make a difference. Fingers crossed you feel better soon.
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#11 Raleigh333

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Posted 10 February 2010 - 07:37 PM

Hi...I was diagnosed last friday the 5th feb 2010. I started being gluten free straight after my visit to the doctor (biopsy positive for villious atrophy) From late evening I started with a general feeling of being 'not quite right', increased thirst, feeling as if I couldnt think straight, found it difficult to find the right word when in a conversation...became withdrawn, craved something sweet to eat, tearful and irrational. These symptoms increased over the weekend. I devoloped abdo pains and couldnt sleep. Sunday night I'd had enough and went to my local a & e but was sent home when I explained about my diagnosis and symptoms. Told it would get worse before it got better and to hang in there! not helpful really. Its tuesday now and I feel a little more clear headed and most of the other symptoms have faded away. Still very tired and pale but Im feeling confident it will get better over time. Knowledge is power really I guess and you've done the right thing by looking at forums like this...it does make a difference. Fingers crossed you feel better soon.


Hello. I was also officially diagnosed via endoscopy Feb 5 2010. Started gluten free Jan 13 2010 after the doc's office calling about the positive serology. It's rough but I was mentally prepared since I thought this was a possibility for the past few years. Wish I would've been more persistent in following up. Also not sleeping well at all this week...slight migraines by the end of the school day, dizzy, and some heartburn which has steadily increased over the past year. Irritability i'm blaming on the stress this is bringing on with explaining this to coworkers and shopping and cooking for myself. I don't think symptoms are going to completely go away until the intestines can heal and the antibodies get out of our system...but I don't know for sure. Bloating/loose stools etc have cleared up...now i see what normal is again...couldn't tell with gradual changes over the years. These forums are comforting! Good luck
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