FeaturesWinter 2007 Issue

Ataxia and Untreated Gluten Sensitivity

As one couple from New York State discovered, untreated gluten sensitivity can affect your gut, your skin… and your brain.

[Updated July 11, 2017]

There is one Sunday morning that Mike Howell will never forget. It was about seven years ago, January 7, 2001. For Howell, the day began like any other Sunday. He woke early and dressed to attend worship service at the church across the street from the house he shares with Linda, his wife of 27 years. But this morning would be different. Howell walked into the church and lost his sight.

“Linda went on into the sanctuary but I wanted to check out the church bulletin board. As I approached it, I saw flashes of pink and blue lightning—and then I couldn’t see at all,” Howell says.

He stood in front of the bulletin board without moving, forcing his eyes open because he thought they were closed. Standing silently and alone, he broke into a cold sweat. The sensation in his eyes lasted two to three minutes, followed by a blasting ache in the back of his skull. Then his sight returned “like a small curtain rising.”

He proceeded quietly into the sanctuary, sat down next to his wife and whispered to her what had just occurred. After church, as the congregation filed out, Linda corralled a nurse friend and told her about Howell’s episode. At the nurse’s advice, the Howells drove to the local hospital where doctors ran a CAT scan and did some blood work and tests, suspecting a stroke. “But they couldn’t find anything,” Linda says.

Howell was discharged with a headache and a follow-up referral with his primary care physician.

gluten headaches

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A Gluten Brain Invasion

Mike Howell, 53, is a solid, consistent kind of guy, a hard-working man devoted to his wife and kids. Steady and reliable both as a family man and an employee, Howell, of Sodus, New York, worked as a stationary engineer for Eastman Kodak for 25 years, operating and maintaining industrial boilers. He rarely missed a day at the job and always showed up on time. Yet within weeks of the episode at church, Linda noticed that her steadfast husband was changing in alarming ways.

“He would have spells where he would forget how to get to work," she says. "He couldn’t spell his name. It was very scary. I knew we were in trouble.”

Howell visited his primary care doctor, Jeannine Dolan, M.D., and then a neurologist. After examinations, more tests and an MRI, doctors found white matter lesions on his brain but no evidence of a stroke.

“The neurologist wasn’t sure what was going on,” Linda says.

By the end of January, the doctor was calling Howell “a mystery man.” He suggested a psychiatric exam and recommended a psychotherapy group.

In the meantime, Howell was suffering from violent headaches that didn’t respond to any of the usual over-the-counter remedies. “He was in so much pain that he would grab the back of his head and hold it,” Linda says. “Nothing we did would stop it.”

“The left side of my body was numb. I just didn’t feel right,” Mike recalls.

By the end of March, Linda could barely control her frustration and concern. The more the doctor talked about Howell’s “psychological problems,” the angrier she became. “I’d been married to this man for over two decades and I knew this wasn’t psychological,” she says. Sitting in the doctor’s office one day, her temper exploded.

“I totally lost it. I was so angry that I was shouting at the doctor and crying. He looked over at Mike and said, ‘It doesn’t look like your wife is handling this very well.'”

They never went back.

The Long Road to Gluten Sensitivity Diagnosis

A visit to a second neurologist provided no additional insight. By June, Linda took Howell to a third neurologist who conducted more tests, including a spinal tap, another MRI and an additional psychiatric exam to evaluate him for depression and memory loss. He was tested for Mad Cow Disease (Bovine Spongiform Encephalopathy, BSE), Multiple Sclerosis (MS) and other neurologic conditions.

Howell continued to suffer from debilitating headaches but now he had episodes of face droop and slurred speech.

“It was like he was drunk, like his mouth was full of novocaine,” Linda says.

Howell would have periods where he didn’t recognize Linda or their children. “There was no rhyme or reason to it. He would be completely out to lunch, have no idea where he was or who I was … and then it would go away,” Linda says.

In early December, Howell was diagnosed with Binswanger Disease, a rare and progressive form of dementia that is characterized, among other things, by memory and cognition losses and difficulty in walking and speaking. There is no cure. For the Howells, it was a devastating death sentence.

“Mike was given five years to live,” Linda says.

Already grieving the loss of the strong husband she loved and now faced with his inevitable slow decline with no hope for recovery, Linda mourned deeply. To honor their life together and celebrate the vibrant years they had had, as well as the limited time still remaining, the Howells decided to renew their wedding vows. They planned a summer ceremony and invited friends and their extended family.

“The family was all there," Linda says. "They came in from all over. Our sons and grandson walked me down the aisle. It was wonderful.”

Gluten: the Unassuming Culprit

As the months progressed, Howell continued visiting doctors for various tests and ongoing treatments. Additional MRIs revealed more white matter lesions in his brain. He underwent chelation therapy to address heavy metals in his blood due to working in an industrial environment. As his symptoms worsened, he became increasingly dependent and began using a wheelchair. Settling down for the long haul, Linda quit her job in order to take care of him full-time.

brain health

In October 2004, Howell was referred to yet another doctor for a consult—Heidi Schwarz, M.D., a neurologist at the University of Rochester Medical Center and assistant professor of neurology at Strong Memorial Hospital. Almost immediately, the Howells sensed this doctor was different. Schwarz examined Howell, reviewed his medical history and listened intently to Linda describing her husband’s symptoms. “She never once looked at us like we were crazy,” Linda says.

“I was the fourth or fifth neurologist that Mike had seen," Schwarz says. "He had an abnormal MRI scan and risk factors for stroke. We were trying to control those risk factors … and yet he was getting worse.”

During one subsequent visit, while Schwarz was examining Howell yet again and “we were scratching our heads,” Schwarz says, “Mike’s wife happened to mention that some lab work years back had showed that Mike had a gluten problem. I said, ‘It showed what? Well, I’ll be darned!”

For confirmation, Schwarz repeated the blood test. Results revealed that Howell did, in fact, have sensitivity to gluten. With that, in January 2005, she nailed his diagnosis: gluten ataxia.

Diagnosis: Gluten Ataxia

Gluten ataxia, a disorder of the immune system, belongs to the same spectrum of gluten sensitivity as celiac disease and dermatitis herpetiformis. In these conditions, a heightened sensitivity to gluten, the protein in wheat, barley and rye, creates an increased level of allergy-fighting antibodies (specifically, antigliadin IgG and IgA) that turn on the body and attack it.

Symptoms of gluten sensitivity can be numerous and vary widely from individual to individual. Generally speaking, celiac disease is evidenced in the gut by damage to the small bowel. Dermatitis herpetiformis is evidenced on the skin by an itchy rash. With gluten ataxia, the focus of disease activity is in the brain, specifically the cerebellum, the center that controls coordination and complex movements like walking, speaking and swallowing. Often, the peripheral nerves located outside the spinal cord are also involved, leading to chronic and progressive neuropathy, a disease affecting the nervous system that results in feelings of numbness, tingling or pain.

Ataxia means clumsiness or loss of coordination. Symptoms of gluten sensitivity with neurologic manifest-ations are slurred speech, loss of coordination in upper and lower limbs, difficulty with normal walking, ocular problems, chronic headaches. It may affect the fingers and hands, the arms or legs, the body, speech or eye movements. In children and young adults, gluten ataxia can also cause developmental delay, diminished muscle tone, learning disorders and ADHD.

Recent studies indicate that gluten ataxia is a common cause of sporadic idiopathic (of unknown origin) ataxia, accounting for up to 40 percent of cases. Yet despite its prevalence, the disease isn’t well known and diagnosis is frequently missed. The reason? Doctors often look for gastrointestinal distress before they will consider the possibility of gluten sensitivity.

“Gluten ataxia is out there but so few of us have seen it—or perhaps recognized it," Schwarz says. "If you see a patient who has malabsorption problems, they can’t tolerate this or can’t tolerate that, if they have gastrointestinal complaints along with neurologic symptoms, then you order the antibody tests. Yet most patients I see with neurologic manifestations of gluten intolerance don’t have a lot of GI symptoms, if any.”

According to a 2003 study published in Brain, gastrointestinal symptoms are present in only 13 percent of patients with gluten ataxia. “It’s been estimated that for every one patient with celiac disease who presents with GI complaints, there are seven patients with celiac disease who have no GI symptoms …. Only a proportion of patients presenting with neurological dysfunction association with gluten sensitivity will also have GI symptoms.”

The bottom line is that gluten sensitivity can be primarily—and at times exclusively—a neurologic disease.

“This is a disease that’s difficult to diagnose unless you maintain a low threshold of suspicion,” Schwarz says.

The blood panel to screen for gluten ataxia is the same used to ascertain gluten sensitivity. It measures the antigliadin antibodies (IgG and IgA) circulating in the blood, along with the endomysium and tissue transglutaminase antibodies. “A small bowel biopsy is not needed if symptoms are neurologic and antibodies are positive,” Schwarz says.

“If antibody results come back positive, I’ll send the patient to a gastroenterologist to do a small bowel biopsy to check for classic changes attributable to celiac disease, but even if this is normal, I will still recommend a six-month trial on a gluten-free diet,” Schwarz says.

Research by Dr. Marios Hadjivassiliou and colleagues published in Brain in 2003 states, “.... IgG antigliadin antibodies by definition remain the best diagnostic marker for gluten ataxia.”

Gluten-Free Diet for Life

It used to be that Mike Howell’s breakfast of choice was a bowl of shredded wheat. For lunch, he’d grab a sandwich, sub or pizza. But these days, Howell stays away from his old favorites. The treatment for gluten ataxia is a strict gluten-free diet.

“I love donuts, muffins and bagels and I still would like to be able to eat this stuff,” Howell says. “But I know that if I touch any of it, I’ll end up more brain damaged.”

Linda has enthusiastically embraced all aspects of gluten-free eating, creating gluten-free pumpkin pie, bagels, and pasta for her husband. “When he gets even a quarter gram of gluten, he’ll have a problem. In less than 24 hours, there’s a massive change. He’ll look at you as you talk to him and he won’t understand what you’re saying. His legs will drag, he’ll have unsteadiness, and slurred speech,” Linda says.

“Then it takes me at least two to three days to get back to where I was,” Howell says.

After many months on the gluten-free diet, Howell has shown remarkable improvement. His progress has been slow but steady.

“Remember that this is an auto-immune disease where antibodies attack other cells in the body. Once the immune process starts, it sort of has a life of its own,” Schwarz says. “That’s why going on a gluten-free diet can take months to see an effect with these patients.”

Today, Howell is out of the wheelchair and walking on his own. His thinking has cleared. And the violent headaches he used to endure on a daily basis? “I haven’t had one since April,” he says.

Howell’s sensitivity to even trace amounts of gluten remains very high. Schwartz says this type of reaction isn’t unusual.

“If a patient’s antibody levels are up and, for example, they prepare their food on the same countertop surface as everyone else, their symptoms will return. That’s even when they’re careful not to eat anything with gluten in it,” Schwarz says. “Gluten is in a surprising number of products, like toothpaste and medicines. Whenever I put anyone with gluten sensitivity on a medication, we check with the manufacturer to make sure it’s clear.”

Schwarz’s advice for patients who have episodic neurologic symptoms with no apparent known cause? Be persistent with your medical team.

“Almost every patient I’ve seen with gluten sensitivity has been dismissed somewhere along the line with a psychological diagnosis like depression or anxiety. If a person is suspicious that they may have gluten sensitivity, they should approach their doctor with the idea that this disease is very difficult to diagnose and has a broad array of clinical manifestations,” Schwartz says. “A lot of doctors had seen Mike Howell and had said they just didn’t know. That’s what’s going to happen to these patients unless they’re persistent. You have to be comfortable in advocating for yourself. It’s the squeaky wheel that gets the oil.”

Comments (24)

This is such a great article. My husband has celiac disease, and has gluten ataxia. We went through the same types of symptoms as you mentioned above, but a little less severe. He actually lost his hearing in one ear at the onset of his symptoms. We had to go through a couple neurologists "looking" for answers for months, until we were fortunate enough to get a referral to Mayo Clinic. I was the one who suggested that my husband be tested for celiac after he had CAT scans, MRIs, a Spinal Tap, TEE, and a Cerebral angiogram. It was the neurologist at Mayo Clinic that was adamant that it wan't going to be celiac because it was too rare, and my husband's symptoms didn't match up. It was a very humbling experience for him when in fact Ryan did come back with extremely elevated levels on the gluten test. Then finally off to the GI doctor for the colonoscopy and endoscopy that confirmed Ryan's celiac.

It is so nice to hear this article that thoroughly relates the brain/ataxia with gluten. I feel this is missing in many articles and information about celiac disease.

Posted by: Erinpletcher | June 9, 2016 9:37 AM    Report this comment

This is me! They thought I had ms and all the MRIs were clean. I had brain fog, balance problems, muscle spasms, weakness, peripheral neuropathy and my favorite... Something I call 'minty fresh brain'. I saw two neurologists, a specialist and a psychologist. I was told it was Lyme disease, a mood disorder, ms, and in the end undiagnosed acute intermittent prophyria and was sent home with orders to eat more bread. But my stomach pain was a result of the wheat not a rare, undiagnosed genetic disorder no one else in my family had. I cut out wheat because thankfully my sister realized she couldn't eat it. In three days it was obvious that it was the culprit in two weeks I felt alive for the first time in two years. Thankfully I had a doctor who believed me, unfortunately he has had to retire due to his own illness. I never got to tell him why I was sick. Now my whole family is gluten free. We've banished eczema, bloating, irritability and a host of other problems. Thank you for your article.

Posted by: irishgirl239 | February 12, 2015 9:17 AM    Report this comment

People looking for clues might also consider the Specific Carbohydrate Diet, which takes Gluten-Free to another level by restricting gluten and several other carbohydrates to repair the gut wall, and prevent gluten/gliadin proteins from passing through into the lymph and blood, where they can set off the auto-immune cascade of chain reactions. The books are " Breaking the Vicious Cycle" by Elaine Gottschall, and "Gut and Psychology Syndrome" (GAPS) by Natasha Campbell-McBride. The basic premise of both books--they cover the same ground---the second in more depth--is that gut disbiosis--the wrong flora, which can often be the result of our over-use of anti-biotics attacks the lining of the gut, allowing penetration of gluten and other antigens. (Here's a possible answer to an earlier question about why so many people have this affliction--antibiotics!) I recommended this to the mother of a celiac sufferer, and with her help, and strict adherence to the diet, her daughter has her health back is working and even exercising again.

Other possible answers can be found in Dr. Ritchie Shoemaker's books on Mold, Lyme, and other Biotoxin Illnesses. In chapter 3 of "Mold Warriors" he lays out the "Biotoxin Pathway", a very similar chain reaction to the gluten/gliadin pathway. The toxins can turn on the inflammatory process, and once turned on, it can stay turned on forever. Brain fog, fatigue, pain, weight gain, are common results. Dr. Shoemaker has figured out a number of medications that help most sufferers. Consider--if the gluten-free diet isn't helping, it may be mold in your home or office environment that's causing a reaction. Removing the offending toxins from you system with Cholestyramine and staying away from the mold source are the two first steps, and finding an enlightened doctor to work with.
Hope this helps.

Posted by: Bob N. | November 3, 2013 8:35 PM    Report this comment

In 2005, I began having chronic ear infections. The doctor gave me oral & topical antibiotic for three years. They just returned so I quit going back. In the next few years I began have so many symptoms it is unreal!!!
Gums thinning, teeth shifting (got braces at 42), forget where I was going, slurred speech, fluttering feeling in my large intestine, excessive dry skin, then exzema with red dots appearing randomly, hair loss for six months every six months, dizzy, hypoglcemia, terrible muscle cramps, tingling sensations. I could go on & on.
I and still trying to figure this out today.
What I have experienced with the last doctor is absolutely NOT exceptable! He referred me to a hypocondriac book, when I ask why he said because in the end the guy finds out he is dying and doesn't have to worry anymore!!! The doctor never even addressed why I was there that day.
If you are having a problem with food, visit Gluten Free Soctiety online. He explaned why if reacting to gluten you cannot eat ANY grains incluing the so called safe ones rice, quinoa... You will probably react to diary, eggs. I cannot have sugar.
This is a nightmare! I find it hard to believe that all these people on the boards EVERYWHERE are all of a sudden getting autoimmune diseases. I believe our food is toxic. It is scary to thikg children can be experiencing this, before they can verbalize it.
The doctors need to get a clue....

Posted by: bb123 | March 4, 2013 7:44 AM    Report this comment

WOW!! I have experienced some issues recently that I believe were directly related to a gluten intolerance. Unexplained crying, bursts of anger, exhaustion, depression, headaches, foggy brain. I honestly thought I was bi-polar! my doctor asked me what I was doing different now, then when I was feeling good. I told him that I have been eating gluten again. He said to get off it.. so I did. Within FOUR days, I was a WHOLE new person! Now I am concerned that it may be genetic (like a peanut allergy so to speak) and my kids have a sensitivity to it as well. My 4 year old was always angry, for NO reason. Just walking around mad! Off gluten for 3 days now, and I can already tell a difference in him!! If he has any (they had pizza last night, I didn't even THINK about it :/ ) he goes back to his "old" self within an hour. Unreal!! My 15 year old has ADD and I cannot WAIT to see if getting him off gluten helps. His diet consisits of carbs and more carbs (the bread kind :)). So thrilled that we may have found the major issue in our home! And yes, ALL Doctors should read this. In fact, I am going to email it to ours :)

Posted by: Momof3boys | December 14, 2012 9:21 AM    Report this comment

Hopefully I am not stepping over any lines here but for those wanting to get tested, we can do a variety of tests (from genetic to extensive antibody testing) in most states and don't charge a consultation fee. We are just happy to help people struggling to get some answers. Most docs test one or two antibodies and make sweeping generalizations. That form of testing is inappropriate for just about everyone. We have excellent success with Cyrex Labs and Enterolab. Both have informative websites. We have no financial affiliation with either one so what we recommend will depend on the needs of each person. I have also written several gluten related articles that you can find at ovitaminpro.com. Daniel Schlenger, D.C.

Posted by: flynv | November 7, 2012 7:29 PM    Report this comment

This article has been an eye opener for me. I have always had itchy skin, but never knew that it was a gluten problem. And with this article, I found out that it's called dermatitis herpetiformis. It's really something how gluten can do so much damage to so many people. I have printed out a copy of this so I can read it from time to time. Thank you.

Posted by: Gioia G | October 4, 2012 7:02 PM    Report this comment

Mike and Linda, I am so very happy that you found a good Doctor who could help with the diagnostics of your problems. My family has also gone through something like that but it was with my then 20 year old son, he is now 22. He went from being a healthy young weight lifting man to having no energy to help do anything. It got bad enough that he once slept for 36 hours without getting up to eat or drink anything. My husband would get very frustrated with him and call it "lazyassidis", he thought that if he could go out with his friends on a friday night drinking beer and partying, then why could he not get up on Saturday afternoon and help around our farm. At the age of 20 he started with a rash on his knuckles and a white ring around his eyes (what they call the Butterfly affect) with the lids by the eyelashes being bright red, he has allergies to other things so we thought he had got into something causing a rash but it persistantly got worse so he went to a Dermotologist who after various testing thought that he may have Lupos, after more testing that was ruled out, but they did not know what he had. Needless to say as a Mom I became very concerned. The Doctors here where we live have a thing called Grand Rounds where they call in 10-20 specialist and you are their specimen for a couple of hours while they will question, look at and try to decide what you have. Thank Goodness for this, as one of the Head Doctors finally decided that he has Dermatomyocitis (an Auto Immune Disease) and the only thing you can do for this is to take steriods to try to get the symptoms under control but there is no cure for it as of now and Boys his age generally do not get it. Once again they really did not know what to do because children have it and it will usually go into remission and come back out again when they are in their 50 but Children his age (20) don't have it so they did not know what age group to put him into. He was put on the steriods which are cortical steriods and his moods would go up and down. He decided that he could not live like that and Went to see a local Doctor who likes to practice naturally, without being on drugs. He did a Blood test on him that also Measured what kinds of foods that my Sons body could not tolerate and put him on Basically a Gluten free (along with alot of other things, like beer) diet. This has helped alot but sometimes it is very hard for him to eat anywhere else but home. It has also changed our whole families diet because I was not cooking 2 meals for the same house! So now we have all basically become gluten free. My husband says he feels alot better too when he is good and stays to our families way of eating and does not cheat. I have decided that you have to be very careful when buying things at the store because gluten is in everything! I shop the section that has alot of Natural foods and we are now raising our own Beef and Chickens, all grass feed so he will be able to eat them. My son is still not healed completely and has bad days where he can not get out of bed but it has only been about a year and he does have more good than bad. Being Gluten free is not easy but it has become our way of life and I really beleive that it will soon be the way of the future!!

Posted by: D B | October 3, 2012 11:01 AM    Report this comment

By the grace of God I've finally been diagnosed as gluten intolerant! Last spring I attended a two hour seminar presented by an integrative functional medicine doctor who was speaking on fibromyalgia and food allergies. I was amazed at what I heard---her presentation related to all my ongoing health problems. Four months after testing revealed my gluten intolerance and many food sensitivities (including dairy, yeast, beef, and soy) and malabsorption issues, I have changed my diet and am now nearly painfree. I have also lost a significant amount of weight & feel I'm on the road to a healthy future. I was recently introduced to a very helpful book, The Essential GLUTEN-FREE Grocery Guide by Triumph Dining. It lists hundreds of products by name (both brand name and private label store brands). For me it has made grocery shopping easier and less time-consuming. Fellow readers may also be interested in checking out the free online newsletter available at www.triumphdining.com. I hope this will be encouraging to others.

Posted by: Ruth H | October 3, 2012 10:30 AM    Report this comment

I developed muscle spasms, tooth sensitivity, peripheral neuropathy, exhaustion and diarrhea about 2 years ago. My doctor was clueless even though I later found out that he does prescribe GF diet to some people. I got myself tested via EnteroLab (they are on the web) and found I was gluten intolerant. I put myself on a GF diet about a year ago. I'm slowly getting better and started B12 injections about 6 months ago which has really helped with the neuropathy. Progress is slow but steady. Every week there is a slight improvement in my neuropathy. The other symptoms have largely disappeared.

If you have gluten neuropathy try the B12 shots. They are cheap and easy to do yourself. Also b-complex daily in order to help the nerves heal. Read the book "Could it Be B12". I think the gluten ruined my intestines so that I wasn't absorbing any nutrients. Also, I'm on Metformin and Met interferes with B12 absorption.

Posted by: Laurel L | October 3, 2012 9:20 AM    Report this comment

For those who are not seeing improvements with gluten free: suggest also going dairy free. The two sensitivities often go hand-in-hand.

Posted by: Karen R | October 2, 2012 9:40 PM    Report this comment

For anyone interested, search Hadjivassiliou in pub med. You will find excellent articles on the neurological effects on gluten on the brain including those white matter lesions along with resolution in most as shown by follow-up scans after many months to a year on a gluten-free diet. Dr. Hadjivassiliou has been publishing this type of study for over 10 years but it seems that the word just isn't getting out. In my practice anyone with autoimmune disorders or strange neurological problems gets the gluten talk. Some go for the testing (Cyrex Labs Array 3) and some continue to look for a more convenient diagnosis.

Posted by: flynv | October 2, 2012 5:15 PM    Report this comment

That's it -- I'm getting officially tested. What type of doctor should I see?

Posted by: Aisling C | October 2, 2012 4:40 PM    Report this comment

Holly, I'm no doctor. Based on my journey in the gluten-free world, it took about one year for my body to feel healed. No More: "food poisoning" attacks, cloudy thinking and difficulty learning, migraines, severe itching and hives. Three months is insufficient time to cleanse the body of gluten.

Most Importantly, ask your pharmacist if your daughter's medicines and supplements are gluten free, which probably are not. Firmly ask that these items be gluten free. ALWAYS, EVERYTIME, you choose to buy food item, READ the label - even if you bought or used the product yesterday.

Contact a celiac disease association that includes gluten intolerance knowledge and get the complete list of "no-no"s such as autolyzed yeast, mono sodium glutenate (meat tenderizer), malt which seems to be in everything these days, and many more.

You are your daughter's advocate and know her best. The doctors are scientists first and think scientifically about diseases, symptoms and signs (two very different things). Specialists practice with blinders on - they "see" things in their field and can't link other specialties with their own.

My advice is to determine if her medications, supplements, body & beauty products (skin lotion, hair shampoo) are gluten free. My dermatologist recommended I use olive and avacado oils on my skin and no lotions (most have alcohol and glutens in them); she was right. Keep learning, keep searching, continue to reach out to the community for advice and information. We're here for you.

Posted by: Sunshine100 | October 2, 2012 2:07 PM    Report this comment

I too had many of the same symptoms expressed in this article and by those responding.

In addition, I was FINALLY diagnosed with a Brain Tumor (Prolactinoma) that is considered a possible tie in with Gluten.
Against ALL my Doctors arguments, I finally found a neurologist that KNEW what was going on and he removed the affending mass in my head. At the time, it was experimental surgery. Today, I am happy to say, it is almost main stream. It isn't an easy thing to go through, but look up the symtoms. It also isn't a "cure all".
7 years later I am still having issues. But I am alive. I have almost NO headaches. I DO have herpideformus dermitidis that continues to make me crazy and issues with brain fog and tingling. It is equitable trade!
If you are not getting the right answers from doctors, push passed them and KEEP TRYING!!!

Posted by: BG31 | October 2, 2012 1:31 PM    Report this comment

My 19 year old daughter has similar symptoms, and also a Lyme disease diagnosis. She has been gluten-free for up to 3 months with no improvement. All her symptoms get progressively worse, even with Rx and supplements, should we try Gluten-free again?

Posted by: Holly A | October 2, 2012 1:30 PM    Report this comment

Im thankful for this article and others like it,i had been in the hospital many times and they could not find anything wrong with me.But i knew there was a problem,my migraines were getting worse,my body aches were so bad i could not move out of bed in the morning and i had pains on my left side so bad i would cry all day..but after reading this and other articles i started taking gluten out of my diet..and now i feel much better,there no way i would go back to eating the way i did before..I work in the hospital and i can say that its sad that the medical community is in denial on how serious this issue is.

Posted by: Unknown | October 2, 2012 12:52 PM    Report this comment

Growing up (1950s+) I had "food poisoning" symptoms and attacks at least every week. Missed a lot of school. When I was 16, I caught the flu and missed 6 weeks of school. The flu kicked off asthma. Also, my "food poisoning" episodes went into hyperdrive and I was constantly sick. I was skinny with raccoon-shadowed eyes, developed emotional roller coaster, rage, and learning became increasingly difficult. Eventually (1997) my pre-diagnosed celiac disease progressed to where I was choking on food above the airway and did the Heimlich on myself 3 times -- honest and true. When mentioned this to GP, her reaction was swift and immediate: she walked me to the G.I. doctor's office next door and told the staff that I was to be seen immediately. Within one month, I was diagnosed with Celiac Sprue with Gluten Intolerance. It took a little over one year that my body felt "cleansed" and I had more energy, brain power, and almost 0 intestinal attacks. On my 2 year "anniversary" all of my symptoms were gone. When I see my GI Doctor, I tell him every time how much I appreciate him and that he saved my life.

Posted by: Sunshine100 | October 2, 2012 12:38 PM    Report this comment

Unknown: It took me much longer to heal because my case of celiac disease was so progressed (I'm two years into this diet, but I've got multiple damage issues like hashimoto's hypothyroidism, peripheral neuropathy, and chronic fatigue). I also became aware that multiple other foods were also bothering my body, which also happen to be foods that can cross-react with gluten. Stick with the diet and pay special attention to how the foods you're eating make you feel.

It was mentioned in the article that gluten can be found in toothpaste... Living Without, or anyone else who knows, can you please tell me which ones have it? That's so frustrating, I wish there was a reliable, one-stop source of GF product information that we could access instead of having to try and figure this all out on our own.

Posted by: Margo E | October 2, 2012 11:54 AM    Report this comment

Wow, what a story ~ Mike congrats on getting through this and finally getting some answers.

I have a similar story, but mine resulted in extreme weakness, I could not eat, chew or swallow food or even speak - my voice was barely audible. I also was weak in my arms and legs and needed help in getting up off the toiled even! I was 28 when the horror of this happened with a newborn! This was a death sentence also during the times that were supposed to be the most beautiful...

Anyway, over a lengthy process that promised nothing - I was diagnosed with Myasthenia Gravis - a rare neuromuscular autoimmune disease. When the treatment (a surgery + hardcore steroids and immunosuppresants) got me worse, I told my neurologist that I wanted to try a diet and supplement treatment - she basically said, and I quote "it's a waste of your time and money"!!!!!!!

Thankfully, I had a stubborn (and a little hopeful) nature... and I slowly changed everything in my diet, including removing dairy and meat products etc. Now I'm on a mostly plant based diet, with no wheat, rye or oats unless they're gluten free and I'm doing amazing. I can walk again and even starting up jogging again. I can chew and swallow food and smile again....

It can take a long time for a person who is sick to find these resources. I am not in this community so it seems like I know it all.... BUT there's a world out there full of sick people who are not getting the help they need. They are stuck in the old ways, eating the same old food that makes them sick without connecting their health to what they put in their mouth.

I hope more and more stories like this be out there for people to see hope in living life better, illness free, just by changing their diet.

All the best everyone.

Posted by: Ella @ Lifeologia | October 2, 2012 11:51 AM    Report this comment

J. Beck,

God definitely spoke to you and I am so glad that you listened. I hope that you continue on your path to healing.

Posted by: foodallergycoach@gmail.com | October 2, 2012 11:38 AM    Report this comment

I'm so happy to have read this. I've been diagnosed with idopathic peripheral neuropathy, idopathic high bp, and idopathic atrial fibrillation. Which basically means they have no idea why I'm having these problems even after multiple tests. I too got the dx of anxiety. I have a MA in Psychology and I know that this is NOT an accurate diagnosis. I finally went to see a Naturopathic MD and he recommended I go gluten free. I've been eating GF for 3 months and have not felt any better. Just this week I was ready to dismiss the GF diet thinking it wasn't helping. After reading this article though I'm going to stick with it. Maybe I'm just one of those people it will take longer to get out of my system. Thank you for posting this. It came at just the right time.

Posted by: Unknown | October 2, 2012 11:29 AM    Report this comment

I was well on my way to gluten ataxia almost 4 years ago. I kept thinking it was my blood sugar, while the doctors were treating me for depression, psoriasis, headaches, and various other ailments. I couldn't cook without plastic gloves, my hands and fingers were so broken and bleeding. One morning I stood in my kitchen thinking of what I would eat for breakfast, and decided to leave off the toast I usually had, still attributing my problems to blood sugar. An inner voice spoke to my heart and said, "It's not the sugar, it's the gluten." I had never heard of gluten. I went to my computer and Googled "gluten intolerance." I read for an hour and there I found ALL my symptoms. Within days on a gluten-free diet the brain fog I had lived with for almost 9 years began lifting, within two weeks my hands were healing, but it took six months for my intestines to normalize. I hadn't considered Celiac until the changes occurred and everything was normal. I've not looked back since. I'm not tempted to cheat, and endeavor to keep free of gluten in all areas of my life. Was it God who spoke to me? Yes, I believe it was.
J. Beck

Posted by: Janice B | October 2, 2012 11:22 AM    Report this comment

This article should be mandatory reading for every person working in the medical community. I spent over ten years being told I had "psychological" problems as the doctors had no answers for my symptoms. My grandson nearly died before we figured out it was the gluten and had to threaten the pediatrician to get him tested. My mother, who was never formally diagnosed, I am certain had gluten ataxia. She spent the last 11 years of her life in a rest home, bedridden and unable to recognize her own children. This should never happen. Gluten sensitivity/celiac is rampant, and the medical community is asleep at the wheel.

Posted by: wellagain | October 2, 2012 11:14 AM    Report this comment

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