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 the Mike had .........
A GLUTEN PROBLEM.
I said, ``It showed what? Well, I'll be darned!''
For confirmation, Schwartz 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
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 by gut 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 manifestations 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. 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,'' Schwartz says. ``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 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 that is normal, I will still recommend a six-month trial on a gluten-free diet,'' Schwarz says.
Research by Dr. Marios Hadjiovassiliou and colleagues published in Brain in 2003 states, ``.... IgG antigliadin antibodies by definition remain the best diagnostic marker for gluten ataxia.''
Diet for Life
It used to be that Mike Howell's breakfast of choice wqas 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 that 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 foods 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 clean.
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,'' Schwarz 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.''
Reprinted from Living Without magazine - Winter 2007 issue - Author Alicia B Woodward
posted
No, I don't think it was really cheating to print the article "All in Your Head" here.
Even knowing the magazine was about celiac disease while I was reading the article I kept saying this sounds so much like hubby.
See a previous thread I posted that explains why this sounds like neuroborreliosis to so many of us. The symptoms of celiac disease/gluten sensitivity, mercury toxicity and neuroborreliosis can sound almost identical because all three of these disorders can affect the same area of the brain -- the cerebellum.
Technically celiac disease/gluten sensitivity is diagnosed by antibody and genetic tests. Hubby has always been negative on those, but he has tested positive to a functional test which is similar to a leaky gut test.
After reading this article hubby is more committed than ever to following a strict gluten-free diet. If he follows the diet and then slips up and eats wheat he usually gets a headache and/or a stomach ache.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Ice cream does contain casein -- a milk protein -- not sure about gluten -- would depend on the brand.
Many people are sensitive to both gluten and casein. It is not the same as being lactose intolerant.
A change in diet sure couldn't hurt and it might help. Probably would take a minimum of 1 month or even as long as 3 months or more to see a difference.
My mom has lactose intolerance -- the docs told her to avoid all dairy products for a week and then to eat some dairy and see how she felt. By avoiding the food and then rechallenging the body it was very easy to identify reactions to dairy products.
But with gluten and casein it is a different mechanism than an intolerance or simple food allergy -- the immune system is involved so it is much slower for someone to notice the effects of a diet change.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
yes, i'm allergic to both:
gluten.... wheat and rye;
casein ... cow's milk, cheeses, egg whites, and garlic.
eat plenty of FRESH FRUTIS/VEGGIES and meat. it was a rude awakening for me having eaten cereal, bread, and eggs occasionally for breakfast.
you can't afford the GLUTEN FREE foods; 300-400% higher than normal foods.
i learned a lot from this article that i didn't know before. thanks bea for posting.
ice cream....no gluten but has CASEIN/cow's milk.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Through another web forum (Braintalk) I had learned that lyme disease, celiac disease, and B12 deficiency can all cause similar problems.
So, I went to my PCP and said I wanted to have a celiac panel run, B12, MMA and homocystine (other markers of B12 def).
When I ended up with Dr. F at Columbia for the lyme evaluation and related this part of the story he said "You are GOOD!"
The celiac panel and B12 all came back normal. The lyme did not.
One CANNOT jump at a lyme diagnosis unless you have flaming positive tests. It is important to rule out many other things that can mimic lyme.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I think this drives home the point that for someone that has NO reposnse to antibiotics at all, it is likley not a lyme problem or even a bacteria problem at all, or at elaat one that is causeing the immediate problems.
It still could be a bug transmitted diseae that is non-bacterial, like a virus or protozoan. Interstingly, some people with celiac claim that the problem started with an insect bite. I can only presume that the bug transmitted something that activated the anitbodies that are present in celiac, be it viral , bacterial or otherwise.
When I was trying to figure out what I had some years back, I greatly varied my diet in search of a trigger agent. None were found. Luckily in my case, IV antibiotics had an initial and very rapid positive effect.... but it did not last and I have been dealing with nasty relapses ever since.
How do steriods work with celiac?
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Good stuff. Serves as a reminder that immune overexpression can have many causes. Not only is finding the cause (step 2) very difficult, but learning the problem is immune-related (step 1!) may be even more difficult.
Doctors seem to be amazingly uninformed in this area. I'd bet a very low percentage of the people here have been given immune system tests, and very few have been advised to check for things like celiac. IMO, that's tragic.
Posts: 727 | From USA | Registered: Mar 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I was - and still am - very involved in the celiac disease community and my local support group although had to scale back due to Lyme.
Fortunately, I had already gone completely gluten-free prior to being bitten by the tick. It seems that many Lyme patients do better on a gluten-free diet so I think I would have had to learn it anyway.
From just the anecdotal experience of knowing so many true celiacs, it seems that the gluten ataxia/brain celiacs are a much smaller subset of the intestinal celiacs. Dermatitis Hepetaformis, the skin form of celiac disease, is also a small subset. Of course, those with intestinal celiac disease can also have many of the neuro symptoms, too. That is why whenever I meet a celiac that has the ataxia symptoms, which are so similar to Lyme Disease, I always educate them about Lyme just in case that may be the true cause.
Yet another disease where there is so much confusion. American doctors were taught in medical schools that celiac disease is a European disease. It was only recently that Dr. Fasano, from Italy but runs a celiac program in the U.S., did the groundbreaking study showing that 1 in 133 Americans have celiac disease.
Please remember that true celiac disease is a genetic autoimmune disease. One must carry one or both genes to be predisposed, then there must be a trigger. Many more people likely have gluten allergies or sensitivities and benefit from a gluten-free diet, but it is not physiologically the same mechanism in the body as celiac disease, which is an intolerance, not an allergy, to gluten.
As previous posters mentioned, those with gluten issues often have casein issues, and often lactose issues - especially at the beginning when the small intestine has not yet healed.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have gluten intolerance, too (non-celiac).
I was on the gluten-free diet and still not getting better (except for my digestive issues and most of my joint pain) when I realized something else must be going on. I got tested for Lyme (at my request, my doc was clueless) and realized the symptoms were from Lyme.
I am very sensitive to gluten though.
Some ice cream has gluten, you need to read ingredients. Sometimes it's the ice cream itself, though not often. Malt comes from barley, so any malted flavors have gluten. Anything with cookies, brownies, etc. also have gluten.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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