[LizIis]

Hi Jenny,
It seems to me that different people have different symptoms. But I can tell you that in my case, I got brainfog in the sense that I couldn't remember anything. I wondered if I had Alzheimer's! But I've now been gluten-free for 5 weeks, and after about 3 weeks, I felt much better. I think I still need to keep a log of what I eat, since sometimes, after I eat, I still get that bloating and indigestion. So I think I may be allergic to something else too, besides gluten and dairy. But I feel much better in general. Keep up the good work! You'll get through it.

[jackay]

I really relate to the roller coaster ride of going gluten free. I feel better one day and worse the next. The symptoms are never the same. Looking at the whole picture, I must say I feel better than before I gave up gluten.

I am waiting for results of blood work for additional food and chemical sensitivities. I know there are going to be a whole lot more things I need to avoid. It's not going to be fun

Can someone recommend a good liquid multivitamin? I've seen mention of them under this topic. I just started taking a multi tablet but am betting that a liquid would do a lot more for me.

[YouMeandGlutenFree]

I am 2 years gluten free and still crave it now and then. It is very addictive and hard to get over. When you eat gluten little bits and pieces of unprocessed gluten (called peptides) enters your blood stream and reacts with the opiate receptors in your brain. It mimics the effects of narcotics such as heroin and morphine. Casein in milk does the same thing. If you are still having trouble you may want to look into going dairy free too. I just started taking dairy out of my diet, so we will see what happens. Good luck!

[mommy2maya]

Wow, you guys are blowing me away. When I started my almost 3 y.o. daughter on Gluten-free Casein-free, I had NO IDEA that there was going to be withdrawl.

I just started my daughter on Gluten-free Casein-free because she's having things happen that resemble autism. She'll be 3 in April and she is almost completely non-verbal. We are in the process of investigating the possibility that she has autism and, where we are, the diagnosis for autism takes about a year. She has had a lot of difficulty with language development and communication delays.

I've read some things that indicate that gluten and casein have a lot to do with aggravating how autism manifests itself. I started her dairy-free just over a week ago and, no word of a lie, her comprehension has just SOARED in the last week.

I came upon this forum because I was looking up any gluten withdrawl. She has been so lethargic and almost "depressed" today. I was really scared and I almost did abandon the gluten part of the Gluten-free Casein-free diet.

Some background:
My daughter was born 8 lbs. 4 oz. She was very tall (95th percentile for height) and thin (50th percentile for weight). When I started her on solids, particularly bread, she started losing weight. She ate a lot and I couldn't figure out why. She had dropped to around the 25th percentile and has yo-yoed to between the 25th and 30th percentile for weight while her height has remained in the 90th percentile. She is speech delayed and, lately, since she started having more dairy in daycare, she really started "stimming" in some very strange ways. She started "whispering" babble to herself. It all started when she was given milk on a regular basis at daycare -- prior to that, she had a comprehension haze about her (she doesn't have intellectual disabilities -- she has good problem solving skills and is adaptable and has demonstrated that she can learn things very well). I had never given her milk to drink since she started solids -- well, more that she just refused it. But she had always had some dairy in the form of yogurt or cheese -- I believed that I was doing good for her by giving her dairy -- at no point did I ever think that they would have neurological repercussions.

I have a pediatrician appointment for my daughter on Thursday and I will have to ask her further about what the relationship is between gluten and casein. My daughter has not been tested for celiac yet -- but a lot of the symptoms of celiac do describe her. But after reading what some of you have written about having celiac and having peptide withdrawl -- I will DEFINITELY have her tested for celiac. From reading some material before about the symptoms of celiac in children -- I did somewhat believe that she may have celiac disease. But, after seeing her today and her withdrawl symptoms and then reading what you guys have written about the addiction to the peptides -- I'm almost certain she does have celiac now. And, for a small child, it does have a HUGE impact on her language development. After taking her off dairy, it was like a haze has been lifted.

After some more research and looking further into my own family's history of digestive issues, I think that celiac may be running in my family. My dad had major digestive issues with chronic diarrhea. My brother is lactose intolerant and because of a "lazy liver" (this is how it was described to him by his doctor) he had to go on a super-low-carb diet to lose weight fast to get his liver to function normally. He wasn't tested for celiac but when I asked him about it, he did mention that when he doesn't eat a lot of carbs for a while, that he becomes more sensitive to dairy.


Today, I think my daughter has been going through withdrawl. It looked a lot like withdrawl. All the stuff you guys described, my non-verbal almost 3 y.o. daughter has been going through it and it's pretty scary seeing it from a 3 y.o. child. But I must try this as part of the autism intervention. And, to be honest, after reading about celiac symptoms in children, I've read that some of how celiac shows itself may sometimes be mistaken for autism or happen in conjunction with autism and make the symptoms of autism worse.

Thanks for encouraging me to keep moving forward with her being gluten-free. I had no idea this would happen and I was quite scared when I saw the withdrawl symptoms today.

[NJgirl]

Wow! I am so glad I found this thread today, it is exactly what I needed to read in order to stay positive. This is my 3rd day gluten free, the first 2 days I actually felt must better, but today I have just felt awful...fatigue, nausea, low blood sugar, headache, dizzy and brainfog. I have been very sick for the past 5+ years with chronic fatigue, depression, chronic sinus & upper respiratory infections, anxiety, severe dry eyes, mild nausea, unbelieveably awful flatulence, bloating, peripheral neuropathy, joint pain & swelling as well as vitamin D & b-12 deficiencies. I was tired of clueless doctors who would tell me that it was "just" stress. I thought I had been tested for EVERYTHING, but my blood test always came back negative. My rheumatologist noted the vitamin d deficiency on my last set of tests and thought perhaps I might have celiac. I started to do some research and have become more and more convinced that at the very least I am gluten intolerant. I just completed the blood tests this week, but I am so distrusting of blood tests at this point, I also completed the enterolab testing as well. I became vegan 4 months ago and noted that with that change in my diet, my gluten consumption had drastically increased and my symptoms had also escalated. I will be totally shocked if all of the tests come back negative. I reached at point where I felt so desperate, I didn't want to wait for the test results to come back, so I went gluten free after the tests were done. Today I was feeling so bad, I was starting to think that I had made a horrible mistake. I had never heard about gluten withdrawl before, however, it reminds me of the symptoms that I had when I gave up dairy, only much, much worse than with dairy. Thank you to everyone for all your posts and for sharing your experiences. I don't feel quite so alone now.

[GFinDC]

There is a ton of information on the web about how gluten and casein affect the brain, including info on gluten ataxia and schizophrenina, etc. Here is one description of a study on how gluten antibodies affect Purkinje cells in the brain.

Sensitivity To Gluten May Result in Neurological Dysfunction, Independent of Symptoms

Quote-
We were interested to determine the mechanism by which Purkinje cells are damaged in gluten ataxia," commented Hadjivassiliou.

Study results show that patients with gluten ataxia have antibodies against Purkinje cells and also that antibodies against gluten (antigliadin antibodies) cross-react with Purkinje cells.

"These results strengthen our contention that eliminating these antibodies through strict adherence to a gluten-free diet may have important therapeutic implications for patients with gluten ataxia," concluded Hadjivassiliou.
-Unquote

******************************************************

It might help to know that secondary food intolerances are pretty common with celiac. Lots of us have problems with soy, or corn, or nightshades etc.

Here is a list of the top 8 food allergens from Mayo Clinic. So if gluten and casein don't fix the whole problem, it may help to look at eliminating one of these other allergens listed.

Top 8 food allergens Mayo Clininc
* Milk
* Eggs
* Peanuts
* Tree nuts (such as almonds, cashews, walnuts)
* Fish (such as bass, cod, flounder)
* Shellfish (such as crab, lobster, shrimp)
* Soy
* Wheat

[Sue789]

I have just stated a gluten-free diet by the advise of my doctor. I have IBS & other auto inflamtion diseases. I am still awaiting my lab test. I went cold turkey..No Gluten. The second & third day I had a headache, then I also felt lightheaded, hunger, extreemly tired ( I slept for 3-4 days) I almost passed out when I fasted for my labs. I am a week Gluten free and learning a lot. I am better now, however I am eating a protein & carb at every meal. I do not skip meals like I used to. I include (real) fruit twice a day. My stools are improving. I even made the Bananna bread from the reciept on this site. It's easy. I even called the doctor with my symptoms and he stated that eveyones body reacts diffently. However, I think you should be doing better by now. Contact your doctor as their may be other issues. Have you had your blood sugar checked? Sue

Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet? I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas. Anyone else have similar symptoms? Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.
[/quote]

[ravenwoodglass]

 Sue789, on 26 June 2010 - 01:25 PM, said:

Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet? I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas. Anyone else have similar symptoms? Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.

Quite a few of us do experience withdrawl. It should pass soon. It would be a good idea to eliminate dairy for now also. Read as much as you can here because being gluten free involves a lot more than we would think at first. Be sure that you have deglutened your kitchen by getting a new toaster that is only used for gluten free bread. Get a new colander and replace any wooden untensils. If you share a home with gluten eaters you need your own condiments, butter, pnut butter etc. Dipping a knife in something after spreading on gluten foods can contaminate the butter or mayo or whatever.
Stay away from restaurants at first, and while you heal go with whole unprocessed foods as much as you can. Fresh meats, veggies, fruits, potatoes, rice etc are good to start with. If you have a Wegmans nearby everything that is gluten free is marked with a circle G.
I hope you heal soon and are feeling better.

[torimuse]

I went gluten free for a week, then challenged for a week before going entirely gluten free. That first week was amazing. Everything started feeling better for once. When I challenged for that week, I tried to keep my gluten intake to small amounts, maybe once a day. When I went back to being gluten free (almost 2 weeks ago, now!) I started noticing that I was taking about twice as long to feel better. I'm just now getting to the point where I'm having normal bm's, and I definitely have a shockingly increased reaction to dairy. However, I don't have very many cravings at all. It's like my body wants it, but I don't. It's not worth being that sick over, IMO, but evidently my body didn't get that memo.

Now that I read this thread, I can probably attribute most of it to gluten withdrawl, but I'm still going to do an extensive elimination diet to make sure I'm not missing anything.

Moderators: Is there any way to pin this thread or something, so that other people can know this is normal and it'll go away after a while? I'd think that being sick after going gluten-free could be very discouraging to others, and might cause some people to slide back to their old glutenous habits. If it were always there as a reminder, new people like me will know that it's a very real possibility.

[Nireen]

 bean, on 29 July 2005 - 12:25 PM, said:

I had some of the withdrawls too - it lasted about 2 weeks for me. Depression, fogginess, anxiety - all that fun stuff! Maybe this will help you understand what's going on - This is from the book "Dangerous Grains":

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.

...

Most individuals who have celiac disease or non-celiac gluten sensitivity are also addicted to gluten. The morphine-like peptides from gluten frequently stay intact because the bonds between some sequences amino acids are quite resistant to digestion. Those who have leaky gut will allow these opioids and other large peptides to enter the bloodstream. The addictive process has probably been at work in most gluten-sensitive and celiac individuals for many years, probably since childhood. This makes elimination of gluten a great deal more challenging than might be expected.

Jnkmnky - you don't have gluten-intolerance or celiac disease, do you? Maybe that's why you didn't present the withdrawl symptoms. You might want to put a note on your signature that you don't have celiac disease so that people wont assume that you are speaking from the perspective of someone who has it, but rather from the perspective of someone who loves & cares for someone with celiac disease

- Michelle

Hello :-) I have went gluten free now for two weeks today and wow I sure am experiencing those symptoms above and maybe more. My bones hurt a fair bit in different places. I am confused, brain fog, extremely fatique, sleeplessness, etc etc.

Kathryn.

[Robert M.]

 carriecraig, on 26 July 2005 - 06:14 AM, said:

Good Morning,

I was wondering if anyone has experienced "withdrawal" from gluten, once they started on the gluten-free diet? I have been gluten-free since mid-June, and am having bouts of light-headedness, brain fogginess, extreme hunger, I’m tired all of the time, and my stomach is still bloated after every time I eat, and I am having problems with gas. Anyone else have similar symptoms? Also, if you’ve been through this, how long does it take to feel normal?

Any insight you can provide is greatly appreciated!

Thank you.

I was just about to ask this same question myself. I've been gluten free for a couple of weeks and mostly feel great, stomach trouble gone, more energy etc.. However, like you, I still get a mild bit of brain fog. Mostly feels like I'm a bit disoriented.

[heidi g.]

i have brain fog, headaches, panic attacks, cant fall asleep, anxiety, nervous stomach, bloating, indigestion, nausea, gas, some cramping, fatigue, and i feel like the tin man from the wizard of oz without his oil! found out i had damaged villi in july and ive had a few slip ups. i have been properly gluten free for about 2 1/2 weeks and picturing myself getting hit by a bus is actually appeasing to me. o.O I am just loving life right now! :/

[UnhappyCoeliac]

I'm 4 days in going gluten free after not doing it for a year. Had diarrhea for two days and now I wake up with a shocking virus, I felt better on gluten

[hermpal]

Wish the withdrawal process for me wasn't so much with nausea. It seems to have become my best friend lately. I can't wait to be my old self again. I do have moments of my old self then fatigue will set in. I'm so glad I was diagnosed but withdrawal has been very hard. I am determined to make it a gluten free life for myself.