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Life StoryJune/July 2010 Issue

Giving Up Gluten

When Deb Nevergall changed her diet, she felt worse before she felt better. Was it gluten withdrawal?

Courtesy of Gemmer Photography<br>

Courtesy of Gemmer Photography

Deb Nevergall with daughter Jessica. Nevergall's Victorian home (shown below) is ready for the tearoom she hopes to open.

 

Deb Nevergall had just purchased an old Victorian home for her special-occasion tearoom and was working on the menu, which included cucumber sandwiches, scones with clotted cream and petits fours, when health troubles hit.

First, Nevergall’s teenage daughter, Jessica, was diagnosed with celiac disease after having suffered for years from painful stomach cramps, fainting episodes and mysterious anemia.

“I’d never heard of celiac disease,” says Nevergall of Findlay, Ohio. “Not many doctors in our town were familiar with it either.”

Once Jessica started on the gluten-free diet, she made a rapid recovery. Her stomach cramps disappeared almost overnight. In fact, Jessica was doing so well that Nevergall turned her attention to her own health complaints. In recent years, she had suffered from countless frustrating symptoms—weight gain, brain fog, headaches, arthritis, fatigue, upset stomach and bloating. Having learned that celiac disease is an inherited autoimmune condition that runs in families, she got tested.

When results from the blood test came back negative, Nevergall admits she was relieved that she wouldn’t have to give up her favorite foods. But over time, her symptoms, once just annoying, seemed to be worsening, affecting her mood and energy level. She was becoming depressed.

“I looked sickly and worn-out and felt almost unrecognizable to myself. At that point, I was ready to do whatever it took to regain my health,” she says.

Over the next few months, Nevergall saw several more physicians and repeated the testing, this time with a small bowel biopsy, considered the gold standard for diagnosing celiac disease. Results revealed no evidence of the condition.

Courtesy of Gemmer Photography

Courtesy of Gemmer Photography

“I knew there was a root cause for my mounting health problems. I just wanted to find it,” she says, frustrated.

Given her daughter’s celiac diagnosis and her own ongoing malaise, Nevergall wondered if she might have some sort of sensitivity to gluten, even if she didn’t have celiac disease. Nagging suspicion prompted her to read up on gluten intolerance. Many of her symptoms—stomach upset, bloating and brain fog, in particular—fit the profile for gluten sensitivity. She consulted her doctor. Should she give the gluten-free diet a try?

Celiac experts strongly discourage anyone from going gluten free before being thoroughly tested for celiac disease. The reason is that being on the gluten-free diet leads to negative test results. “Once patients are on the diet for an extended length of time, it’s almost impossible to clarify the diagnosis and help the patient. We have limited tools at that point,” says Stefano Guandalini, M.D., medical director of the University of Chicago Celiac Disease Center.

Yet in a case like Deb Nevergall (i.e, a person who has celiac-like symptoms, a first-degree relative with the disease and negative results from a blood panel and biopsy), removing gluten from the diet and observing symptom changes can be the next logical step. Nevergall’s doctor was on board with the idea and so she decided to give the diet a try.

For Nevergall, going gluten free meant more than just a dietary adjustment. Nearly everything on the menu at her Victorian tearoom would now be off limits. Unable to sample new recipes and taste-test at will, she wasn’t sure she could pull off the new business venture—not to mention withstand the constant temptation. So she put her entrepreneurial plans on hold.

Feeling Faint

Just days after going gluten free, Nevergall noticed she was dizzy. It started as a vague sense of lightheadedness that quickly escalated until it became almost debilitating.

“I was unsteady just walking around the house,” she says. Nevergall’s husband, Dar, had to help her out of bed and guide her on the stairs. Even when she sat quietly, she would feel woozy and notice that her vision would start to fade.

“I was afraid I’d pass out. It’s a horrible feeling because you don’t know what’s going to happen from moment to moment,” she says.

She also experienced strange, difficult-to-describe sensations in her brain. “It was the oddest thing, like a mild electric current running across my scalp and brain.”

With unremitting dizziness and the distracting sensations, Deb stopped driving and didn't get out much. “I stayed home and relied on my husband to take care of a lot of the cooking, laundry and household chores.”

The curious new symptoms alarmed Nevergall even as the timing gave her pause. Could they possibly be linked to removing gluten from her diet? It seemed like a stretch yet the coincidence was striking. Pushing down her growing concern, she logged into various celiac blogs and support groups and was surprised to discover threads discussing a condition called ‘gluten withdrawal.’ It was a moment of eureka—and relief.

“It turns out others experienced similarly disturbing symptoms when they started the gluten-free diet,” says Nevergall. “I figured I was going through some kind of withdrawal as my body got rid of the gluten.”

According to the National Institute on Drug Abuse, ‘withdrawal’ is defined as the variety of symptoms that occur when addictive drugs or substances are reduced or stopped. For Nevergall, gluten withdrawal seemed like a plausible explanation for her strange symptoms. But in reality, is there such a thing?

A Controversial Call

Celiac medical experts give a nod to anecdotal reports of gluten withdrawal but point out there’s no scientific data or research that substantiates the condition.

Nothing in the medical literature supports a true gluten-withdrawal syndrome, says Guandalini.
“It’s hard to account for it.”

Still, parents and patients who have experienced or witnessed gluten withdrawal contend that it is very real. So does Charles Parker, D.O., a psychiatrist who has treated numerous patients with food intolerances.

“If you’re looking for withdrawal symptoms in newly diagnosed celiac or gluten-sensitive patients, you’re likely to find them,” Parker says.

Symptoms can be highly diverse, he explains, ranging from neurologic (like Nevergall’s) to gastrointestinal (such as nausea, diarrhea, cramping or even extreme hunger), to psychiatric with mood disturbances, irritability, anxiety, depression or sleeplessness.

Parker suggests that gluten withdrawal may be related to an underlying addiction to gluten. He contends that some of his celiac and gluten-sensitive patients have been unknowingly addicted to gluten for years, craving the very foods that make them sick.

One theory is that digestive by-products of gluten–peptides (proteins) called gliadorphins–enter the blood stream more easily in people with leaky gut syndrome, a condition thought to contribute to celiac disease and certain other autoimmune conditions. When these peptides bind with opioid receptors in the brain, they can mimic the effects of opiate drugs like heroine and morphine. Abruptly eliminating gluten cuts off stimulation of these receptors and may trigger withdrawal symptoms, explains Parker.

Support for the theory that peptides from certain foods exhibit powerful opioid effects gained ground in the late 1970s. Researchers at the National Institute of Mental Health demonstrated the conversion of gluten into peptides with potential central nervous system (brain and/or spinal cord) activity in 1978. However, the research was preliminary and conducted on laboratory mice, not humans.

To date, subsequent data confirming an opioid effect in humans has not been published.

A Bright Outlook

Fortunately, patients who suffer from gluten withdrawal report a quick recovery. It typically lasts just a few weeks, says Parker.

Once Nevergall linked her symptoms to going gluten free, she relaxed and let it run its course. “I knew it would end,” she recalls. “I was able to look at this period as part of the process of getting well.”

It took six weeks before the dizziness and inexplicable brain sensations finally ebbed.

“It was such a lift when they were gone. I felt so clear-headed and light on my feet,” she says.

Nevergall acknowledges that it may be difficult for some to accept the reality of gluten withdrawal but says personal experience validated the phenomenon for her.

“I’m sick when I eat gluten and I got sick when I stopped eating it—temporarily at least,” she says. “It’s been a long and bumpy road. I’ve figured out that I’m highly sensitive to gluten and that I have to be extremely vigilant with my diet.”

Today, Nevergall is feeling better than she has in a long time. Her brain fog, headaches, arthritis, fatigue, upset stomach and bloating have all improved dramatically.

“Plus, I lost 20 pounds when I started the gluten-free diet,” she says, “and I’ve managed to keep the weight off.”

But the best part for Nevergall is the increase in her energy level. With renewed vigor, she is revisiting her dream of opening the tearoom—she’s considering a gluten-free one.

Medical writer Christine Boyd lives in Baltimore.

Comments (28)

Thank you for this article! I found it searching for gluten withdrawal symptoms because I too have experienced dizziness/light-headedness.

Posted by: GFreeVA | April 3, 2014 5:14 PM    Report this comment

There are many good books that talk about the gut brain connection, which would show that these types of reactions are valid. I have learned much from a book titled "Dangerous Grains" by Braley and Hoggan, as well as the "Gut and Psychology Syndrome" book by Dr Natasha Campbell-McBride. I am so thankful that for many of us who suffer with any wheat/gluten or allergy issues, we have more resources to learn how to be healthy. We owe it the next generation. I have a friend who notices that her daughter functions better doing home work now off all gluten. It could help many other children. I am glad that I found this site and enjoy the magazine!

Posted by: Amber B | March 6, 2013 6:35 PM    Report this comment

I don't recall having withdrawal from gluten, but the diarrhea and foggy feeling went away. I did discover that my borderline low blood sugar issue was a lot more real than I knew. I have to watch the sugar and eat small meals or snacks (that include protein) frequently. I carry a homemade protein powder with juice drink (orange, apple or a mix of juices) when I do my substitute teaching and and unable to prepare snacks. I sip it all morning until lunch. As for the gluten intolerance, I also cannot eat corn, or foods with corn syrup (all candies and so may other products),or brown rice. So far white rice is fine. I cannot eat "supposedly GF" oats, starchy vegetables like limas and peas and now I am adding Xanthum gum to the list. Guar gum is milder from what I have read and that has not been a problem. Hope this helps others. I wish some of those GF coffee houses would move out to the suburbs...It's nice to have coffee and a nice baked good with a friend or with a good book which often is equally nice.. (One of those small but great pleasures in life.)

Posted by: cbemge | March 5, 2013 6:34 PM    Report this comment

I was sick all my life, throwing up all the time after eating, stomaches so bad I can only say it felt like I had swallowed razor blades and could feel them moving throughout my intestines every inch of the way, feeling like I was literally living in a fog - everything seemed gray, feeling sad, withdrawn, socially isolated....I always knew there was something wrong with me physicially but was always told I was imagining things by my parents and doctors. I finally demanded my doctor send me to a specialist when I was 22 years old and had a daughter 6 mths old. Throughout my pregnancy I was hospitalized three times before I even had her! I was always vomiting and fainting all the time! The specialist my doctor sent me to admitted once he exhausted his efforts to find the cause of my problems, that he didn't know I had celiac disease because my symtoms were so backwards from the "norm". He did the biopsy as a last resort because he didn't know what else to do for me.

Within days I felt alive! I had never felt so good in my lifel I was just shy of turning 23 and I felt amazing. I have stayed on the GF diet every since, 30 years now, and have never cheated on the diet! Why poison myself with something that harms me? Would I eat rat poison? No, so why cheat because it does the same thing.

Of my three kids, one is a true celiac diagnosed 10 years ago, and another 'sensitive' to gluten. The third should be tested but hasn't as yet. Too many symptoms to ignore there!

Following the diet 30 years ago was incredibly hard because there just wasn't the products available for those who were GF. I survived on very gross rice pasta (think it was rice, not sure but gross) and rice krispie squares. I made my own bread for the first 15-20 yrs I was diagnosed and am now quite happy to purchase any variety my heart desires. What a difference in foods available.

I don't recall every having withdrawal symptoms at all. I think my body was just so happy not to be poisoned every day it did the happy dance:) Once I started the diet, I got rid of all those 'symptoms' thank God.

I can't recall the number of people I have educated over the years! It feels good to help those who want to know out of curiosity and for those who have been diagnosed! I'm all for eating right to live life to the fullest. After all, I may be 52, but I still feel and act like I'm 28. I figure I have another 30 + years to go so I'll enjoy it as much as I can, gluten and guilt free.

Posted by: Brenda P | March 5, 2013 6:09 PM    Report this comment

I've been GF for about 8 years. I went on the Atkins diet, and after being carb-free (which coincidentally meant gluten-free for me), the joint pain, stomach problems, and numerous other symptoms I'd been living with for years disappeared. I added back bread after two weeks, and was immediately slammed with joint pain again. I'd been tested for so many things, but not celiac. So I resumed a GF diet, and never looked back. Because there's no help for celiac disease or gluten intolerance of any kind other than eating a gluten-free diet, I've never seen the point of pursuing further testing, because that would require eating gluten for awhile beforehand to create the necessary testing condition. I will not subject my body to that ever again. As for withdrawal, I was already in so much discomfort that I didn't notice anything except positive results, which doesn't mean that withdrawal isn't real. When you stop eating your favorite gluten-laden products, you're bound to get depressed and experience cravings. It sometimes helps to think about the food, even imagine eating it; in a bit, you may notice that you've moved on and no longer feel the craving. There are so many good GF products on the market now, and so many great cookbooks, you can develop a whole new list of favorite foods without feeling deprived. I keep a GF kitchen at home, and my non-GF husband doesn't miss a single thing. Also, for those of you who are dairy-free: try goat and sheep products. Goat's milk yogurt is great, and there are so many perfectly wonderful cheeses. You have not eaten your last mac & cheese, I promise you!

Posted by: Judy R | March 5, 2013 10:15 AM    Report this comment

When I was diagnsoed with celiac two years ago I was told the gluten free diet would immediately make me feel better. I was not prepared for what actually happened. I did become very emotional, like many others here, but I also broke out in huge painful boils all over my neck and back. Then a cyst on my ovary burst. The withdrawl lasted about 3 weeks. But the pain didn't end there. I soon learned that I couldn't tolerate eggs, then dairy, then buckwheat, quinoa, and oats. The thing is I didn't start to feel better until I gave up GF products. I think when people go GF because of celiac disease they need to to be as gentle to their bodies as they can and eat basic whole foods like vegetables, fruits, potates, rice, meats, and broths. Rotate food often. And supplement with fermented foods to replenish healthy gut bacteria. GF products usually have trace amounts of gluten because most grains (even GF ones) are processed alongside wheat. Those trace amounts start to add up when you eat a GF muffin in the morning, GF sandwich bread for lunch and even more at dinner and snacktimes. Just steer clear of it all until you've healed your body for at least a couple months. Then you can gradually add things back in and your body will tolerate them so much better. I wish someone had told me this in the beginning. My doctor was of no help to me outside of diagnosing me. These forums are all we really have.

Posted by: Margo E | March 5, 2013 10:04 AM    Report this comment

Yes, yes. The first 2 days of my GF diet my symptoms were worse---could hardly stay out of the bathroom. On the 3rd day, I woke up feeling better. I've never looked back; it's been almost exactly a year. A year free of "IBS", of terrible stomach pains and migraines, in particular. The dr also suggested I stay very low-lactose, and that's helped a lot. I already knew I was allergic to MSG, nitrates, sulfites and artificial sweeteners. Added gluten and oats to the list as well as lactose, and wow.....very grateful.

Posted by: JEANNE A | March 5, 2013 9:57 AM    Report this comment

Congratulations, Deb and Jessica, for figuring out your issues. I understand how challenging it can be to seek answers but not receive them, especially from the medical world. I grew up in the midwest but now live in Boulder, CO - health central - and even here it can be difficult. My daughter and I have gone through the tedious process of gluten sensitivity. My GI doc told me 2 yrs ago that it is one of the most underdiagnosed conditions in our country, and that 1 of 5 people in the next 5 years would discover they have it. I have been watching that unfold. Your persistance has paid off, Deb. I am very excited by the prospect of your next challenge - educating the public with your newfound knowledge through your lovely Victorian tea room! One person at a time. Best of luck!

Posted by: Kelly H | March 5, 2013 9:50 AM    Report this comment

I have been to so many doctors with no relief at all. A year ago I went to a naturopathic physician and have eliminated gluten (have celiac disease,) and dairy from my diet. He also has me on "Eat 4 Your Blood Type" diet. I no longer have the bloody diarrhea, brain fog, dizziness, fatique, cramping, achiness, nausa, achy joints (arthritis,) prickly skin feeling, depression, extreme irritability, stomach pains, bloating, gas, and my osteoporosis is getting better! My small intestine is healing, my allergies are getting better, and I AM GETTING MY LIFE BACK! Now I just need worker's comp to approve surgery on a work related injury that has been plaquing me for 23 years and I should be good to go.

Posted by: Debbie L | January 23, 2013 12:36 PM    Report this comment

Can relate to so many of the withdrawal symptoms listed in this article, especially the electrical sensation across the forehead and scalp. Its kinda like a weak pins and needles but not specific "pins" of the sensation. Thanks for the validation!! :)

Posted by: Turf109 | December 2, 2012 8:25 PM    Report this comment

I have been lactose intollerant from birth, am allergic to many medicines, anastesia, medical beds, flu vaccine, stitches, even medical dressings. About two years ago i developed an allergy to salmon too. I have suffered from many aches and pains low blood pressure but never thought that gluten may be my trigger. Well my Dr. told me although not tested he advised i get off gluten entirely as all my symptoms seem to be indicating an intolerance. So ive been off for three days and i am having wierd symptoms so logged here. I am having pins and needles and numbness in my hands and legs and am having severe joint pains like a bad flu. Im also feeling really exhausted and sleepy which isnt me at all. Is this normal??

Posted by: sdep | September 30, 2012 3:26 PM    Report this comment

It would be awesome for you to do a Gluten-free Tea Room. There is a tea room over by me, but they sell no GF products. I would love to go out with my friend and have some tea and a brownie or cookie, but we are both GF, and there just isn't anyone capitalizing on this growing market. What's wrong with businesses?

Posted by: Diana J | August 21, 2012 4:31 PM    Report this comment

I gave up gluten 2 days ago. My body aches all over and I have a slight headache. But I don't have any cravings, just feel like I have the flu but no fever.

On the plus side, inflammation in my hands and legs which was previously constant, has diminished. So I'm hopeful and pleased so far.

Posted by: Margie F | August 16, 2012 8:24 AM    Report this comment

A note to the person who commented on Aug 14 that they were waiting anxiously for hip gluten free restaurant to open in Chicago--there is one already!!

Check out Rose's Bakery in Evanston. It is an amazing place--everything is GF. I love it and eat there whenever I visit Chicago!

Posted by: Ruth R | August 15, 2012 6:42 PM    Report this comment

I was diagnosed with celiac disease 15 years ago and to this day I remember how angry I was at everyone even though on the GF diet I instantly felt so much better. I remember telling a friend how I felt like an addict going through withdrawal. I knew people who quit smoking or drinking and they all behaved like me. It was not until a year later that I started feeling human again and didn't cry when I passed a bagel shop or snapped at my husband when he was having a dessert in a restaurant. I would like to add also for all those new to the diet beware of hidden gluten in cosmetics. Some are easy to spot because it will say "wheat germ" but the word "tocopherol" is tricky. It is a form of vitamin E and sometimes but not always made from wheat germ. I got very sick last year from using Neutrogena Sensitive Skin Sunblock Lotion on my face for about 5 months before realizing that's what was causing my problems. I would wake up in the middle of the night with chest pains and bloating which were always relieved with lots of hick up type burping. The same thing happened to me when I was hiking or walking. My doctor zeroed in on my heart right away but there was nothing wrong with my heart or arteries. I got an email from Living Without just at the time when I was waiting for my results about the problem with tocopherol and immediately stopped using the sunblock. The symptoms were gone right away. The tricky thing is that there is no way to find out where the tocopherol came from because the manufactures of these products don't know themselves. If you start looking for tocopherol you'll find it in almost every cosmetic product. Wouldn't it be nice if the manufacturers of tocopherol specified what it was made from?

Posted by: Mary H | August 15, 2012 1:06 PM    Report this comment

CP I have known for years that I was gluten-intolerant but because of the intense cravings kept on eating it; however, I've been off gluten now for 3 months and was so glad to read about the withdrawels one can have, which I'm having. I have suspected for a long time now that parasites are involved in the very beginning. I'm hopeing a study will be made of this. It shocks many people to think that WE (people) can have parasites. It is so easy to pick them up. I've read articles where they can be airborn from cats and can simply be breathed in. Drinking water can be another culprit. Most of our rivers are contaminated with the Guiradia (spelling) parasite, I have read, also. This is the one that bores through the intestinal wall and can enter the blood stream.

Posted by: Claudene P | August 15, 2012 11:13 AM    Report this comment

Thanks to all of you that responded, I really appreciate your support. A couple of other things I wanted to mention...I am also Lactose intolerant, which I am finding out now, runs right along with GI. I gave up milk when I went vegetarian 8 yrs ago, but kept eating cheese. When I went GF 7 weeks ago, I also decided to go vegan, so stopped eating cheese and eggs. The above article states not only is there Gluten withdrawal, but also Casein withdrawal...so maybe I was stacking the deck without even knowing it. I am going to go GF again, only this time I will give it more than 6 weeks and will stay away from corn(as in grits) as well, since corn and wheat are both raised pretty much the same way in this country...genetically modified and heavily sprayed with pesticides. When I first began this journey, I thought, how great it would be if my stomach and other problems could be solved with something as simple as avoiding wheat. Well, holy moly, I had NO IDEA how hard it would really be! That was probably the hardest thing I have ever done, even more so than becoming vegan and having to read labels to avoid animal products. I will do this , though, and I will get it right this time. I'm sorry my posts are so long, but there is really no one else that I can talk to about this...they don't want to hear it. Thanks again for listening.

Posted by: Lisa H | August 15, 2012 9:32 AM    Report this comment

Lisa H., get the book Living Gluten Free for Dummies...there are so many variations of wheat, barley and rye and their derivatives (such as malt), food additives and binders, thickeners, flavorings etc. All very hidden unless you know what you are looking for...EVERY label must be read! Don't worry, you get used to it, and now there are many GF food options at your natural food stores..even Safeway has some items. And don't forget, many foods are naturally gluten free, such as rice, potatoes, vegetables, etc. Living Without has great recipes.(Just avoid sauces at restaurants unless they can guarantee they are gluten free..remember to ask, they don't mind letting you know). Testing is almost impossible with certain HMO's..my blood test was negative, and they won't do the biopsy. But I know how to take care of my body, so I'm gluten free for life.

Posted by: Lauren J | August 15, 2012 8:12 AM    Report this comment

The symptoms and withdrawal mentioned in the article AND in the comments sounds a lot like a problem with candida overgrowth and candida die-off symptoms. Most medical doctors do not acknowledge candida overgrowth as a problem... but most naturopathic doctors do. It is a real problem. I know because I have a candida overgrowth. I have been diagnosed with IBS, Meneire's Disease, hypothyroidism, allergic to gluten, dairy, and cocoa. I did all the things that the medical doctors told me would "cure" me... but none them worked until I realized that all of my symptoms pointed to an imbalance of my good and bad bacteria. I cut out all foods that fed the candida, started anti-fungals/probiotics, and I am finally on the road to recovery. I have never felt this good in my life. I'm finding symptoms disappearing that I didn't even know I had!

Posted by: Unknown | August 14, 2012 6:30 PM    Report this comment

Lisa H. Don't give up..yes it is worth trying again. Everything this article says is true. AND..you can be just as sick from a gluten "sensitivity" as celiac disease. My daughter had been sick for 9 years. Diagnosed with IBS and hypothyrodism, became anemic, got her period every two weeks since 11 years old, could take the pill cuz she was too sick all the time...just miserable. She also couldn't eat dairy anymore either. Took her off gluten for a week while waiting for test results. Came back negative so I let her go back on gluten.....big mistake. It can take more than a week or two to see results, as in our case. My daughter ended up having to have a colonoscopy and because that liquid flushed everything out of her system (and I hadn't given her any gluten yet), she stopped being sick IMMEDIATELY. It was a like a red flag to me. I thought, I have to be putting something in her that is making her sick. Gluten was the only guess I could come up with. She had suffered with diarrhea right after eating for over a month ....every time she ate ...and once we prepared her for this colonscopy, the diarrhea magically stopped. The only difference was I had not given her gluten from the day before the procedure til now. Its been four months and she has not missed school or work once. She has been able to go to Disneyland, fly to Washington to see a friend and actually LIVE like a normal 19 year old!! I NEVER thought I would see the day my daughter could actually move out of our house. And FYI to all those who don't believe in Gluten related withdrawals...you're fooling yourselves. My daughter was the sweetest, kindest person for 18 years until she went through gluten withdrawals. She became nasty, angry, felt like she was "outside of her body looking in", dizzy, and rude to me like she has NEVER EVER been. The worst of it was over in 2 or 3 weeks but the dizzy and emotional sensitivity lasted a couple more weeks. If it wasn't for celiac.com I would have freaked out and thought she needed help psychologically. She is GREAT now. And if she accidentally gets some gluten in her, she feels foggy headed and the diarrhea and stomach aches come back immediately. All she ate was a little frosted flakes..(didn't know malt was gluten). My heart goes out to you who can't have gluten...it is very difficult to adapt to and takes a lot of patience. My daughter also takes Jarrow Irritable Bowel Support probiotics and vitamin b-50 from Trader Joe's regularly. My prayers are with you all!!

Posted by: S&SH | August 14, 2012 5:19 PM    Report this comment

I've found through experience that most doctors will tell you what they've been taught and they won't speculate about anything someone hasn't proved first. For instance, I went through Chemo about ten years ago and had terrible mental side affects. The nurse said that it was "Chemo-brain", that everyone had it. I asked the oncologist about it and he said it was just a myth. When I checked with other chemo patients, they were having the same symptoms, such as memory loss, slower reaction time, inability to focus and inability to multi-task among other symptoms. It took me about three years to come out of it. In fact, I am still not where I was before treatment, and I don't think that's all about being older. Same thing with celiac and gluten sensitivity. After reading a recent article in "Living Without", I felt I finally had some confirmation that gluten can cause brain fogs as well as physical symptoms. I have no doubt that doctors will eventually admit that gluten consumption in sensitive individuals is a whole body/mind poison and we are not making it up or being "emotional" as I have been told in the past.

Posted by: Ann W | August 14, 2012 3:51 PM    Report this comment

I just wish I had found and read this article about a week ago! (I'll apologize in advance for the length of this post) I was diagnosed with IBS and Fibromyalgia in 1992 and Hypothyroid in 2004. Due to high cholesterol, I became vegetarian also in 2004. I had a colonoscopy about two yrs ago and the doc said he was SURE that I had Celiac...however, the follow-up blood test was negative. So I went on my merry little wheat based way and continued to have terrible stomach problems, depression, headaches and terrible body aches, par for the course for me. My lovely gastro doc(whom I refuse to see again) tried to convince me that my ONLY option was to live my life on antibiotics and laxatives....not no, but H*** NO! About 7 weeks ago, I decided I would give the GF life a try. For about the first four days, I felt wonderful! I thought I had finally found the answer...until my husband and I ate a restaurant with no GF or veg options, except a bowl of grits with fresh fruit on top. As terrible as that sounds, it was pretty good and I really didn't feel too deprived. Shortly after that, tho, my symptoms returned with a vengeance and I just assumed the grits had been contaminated with wheat, but the symptoms continued off and on until I finally decided GF was doing me no good and went right back to it about a week ago. I must say, I feel terrible...I have had an almost constant headache, dizziness, body aches, stomach pains, constipation and bloating. This may sound stupid, but how do I know if this is actually a wheat sesitivity or just another IBS/Fibro cycle? If I had known there was a possibility of wheat withdrawal, I never would have gone back to it. Is it worth trying again?

Posted by: Lisa H | August 14, 2012 3:48 PM    Report this comment

After reading this article I feel compelled to respond. For years I complained about stomach ailments, bloating, constant diahrrea ,loss of energy and weight gain. My Dr never paid much attention when I complained about the bloating, gas and the fact that my abdomen was extremely hard all of the time. I had dx of irritibal bowel, acid reflux etc. In October of 2011 I suffered extreme diahrrea, lack of energy and severe dehydration lasting for two months. I literally thought I would die. A trip to the ER resulted in no findings and Drs were of no help at all. I finally googled my symptoms (something I'm told is not wise) but I was directed to A celiac/gluten intolerance site and saw myself in print. I immediately removed bread from my diet and upon further reading started eliminating all gluten products. Within weeks I began to feel better. I no longer felt like I had a tumor in my abdomen and bowel movements became normal, energy was renewed. When I mentioned this to my Dr, his response was that It was a good thing I figured it out because it is not something he would look for. As I'm learning more about this affliction, I wonder why the medical community is not more attuned. Since learning this is genetically transferred, I recall some of my mother's symptoms and realize that she most likely suffered from an intolerance. My great aunt died of stomach cancer so I'm fitting all the pieces together. Hopefully I can find a test that will tell me exactly what I have, but I'm not counting on it. I'm encouraging my daughter who's son is ADD to begin eliminating gluten . When I remember how terrible I felt last year, I don't even miss the foods that I used to eat. Bottom line---- THANK YOU FOR ALL OF THE HELPFUL INFORMATION. Joan W.

Posted by: Unknown | August 14, 2012 1:21 PM    Report this comment

I hope she moves forward with her gluten free offerings. I think this choice would be the "gift" in experiencing gluten sensitivity. It gives her something special to offer people that they can't get otherwise. I am waiting on anxiously for hip gluten free restaurant to open in Chicago. It's delayed opening only makes me more excited to see them open their doors. If the food is good--- it doesn't matter what it is made of.People will come! Good luck!!

Posted by: cynthia r | August 14, 2012 11:13 AM    Report this comment

Interesting. I have been dx. with a wheat sensitivity and noticed that for the first three days or so, I felt horrible...kind of like having the flu. But happily, since I have been feeling better and better. I have been tx. for 17 years for depression and have known the entire time that the "depression" was more about energy loss than feeling despair, etc. In fact, despair is so far from where I am. But just cutting the wheat/gluten out of my diet has helped immeasurably. My energy is returning to normal, my food cravings have completely ended and since I'm eating more protein in my diet, my appetite has decreased. Also, an annoying rash on my chest, upper arms, and front and back of my legs has disappeared and my skin is returning to being smooth again. That rash has been dx. as sun damage, pre cancer! It will be interesting to watch the faces of the dermatologist when I tell him what has happened. (I've seen at least 4 different dermatologists over the past 17 years who have pretty much dx. the same thing....sundamage, pre cancer. ) Such good news to have some control back.

Posted by: therohrers4@frontier.com | August 14, 2012 10:30 AM    Report this comment

I thought I was going crazy! I have become very angry, depressed, had severe headaches (I am not a headache sufferer), and my anxiety has increased. I glad to know that there is an end to gluten withdrawal.

Posted by: Amy W | June 10, 2012 5:26 PM    Report this comment

I went gluten free five days ago after my celiac diagnosis. I have no symptoms of celiac besides low thyroid. I just started having dizzy spells two days ago, mostly in the morning, along with being thirsty more than normal. A visit to the dr. didn't reveal anything out of the ordinary except close to being hypoglycemic (in the afternoon). I think its gluten withdrawal! I hope this doesn't last!

Posted by: Jane K | May 13, 2012 11:36 AM    Report this comment

Just found this article because I was searching for a reason for my depression since starting a gluten, dairy and egg free diet. I have had extreme irritability and feeling depressed especially in the evening. I have even been envisioning myself grabbing a cookie or piece of cake and eating it. I have to mentally shake myself and stay focused. It sounds like it is common to have some form of withdrawal, I just hope it is short lived.

Posted by: Bev W | September 25, 2011 12:35 PM    Report this comment

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