Great to hear you have had such positive results with a gluten free diet, Ibken! And nothing like an obvious reaction to gluten like the one you had... to confirm to yourself, at least, that gluten is a problem for you. It contradicts any notion that the improvements are placebo affect or coincidental.
How long did it take before you noticed improvement? My young daughter had been exhibiting ataxia like symptoms, but they all resolved within the first couple months... mostly within the first weeks..although we did have a few early oops with the diet that resulted in symptoms showing.
And those little bits of gluten do matter... for some people the slightest cross contamination during food preparation can provoke symptoms, or prevent someone from experiencing meaningful improvement. Live and learn. Even when doing your very best to avoid gluten 100%, there will be some unavoidable mishaps.
I'm getting used to the diet...sometimes inconvenient and limiting and expensive - but doable.
I couldn't agree more... and after six years... I don't even notice I'm doing it...except when I go out to eat or I'm traveling. There is still a lot of food in the world that isn't wheat, barley or rye! I just have a little different grocery list than I used to... that has very few boxes.
Did they suggest that you also remove cow's milk? 50% of those with gluten sensitivity also have casein sensitivity, which can do much the same things. Both gluten and casein sensitivity have been suggested to aggravate various neurological and autoimmune diseases. But, it is individual... for some it is one or the other, but sometimes both. OK... corn and soy and yeast for some people, too. Essentially any food can provoke neurologic symptoms depending on the individual, but gluten, casein, soy, corn and yeast top the lists. So... if someone sets out to self experiment, I'd probably follow the dietary guidelines suggested on Direct-MS.
Little is PROVEN in this arena, except for Celiac Disease. And you can definitely have gluten sensitivity without having Celiac Disease... a subject still in hot debate among mainstream medicine... but Dr. Marios Hadjivassiliou
has come a far way in proving it during this last ten years. It is proven as far as I'm concerned.
For the most part, gluten sensitivity is thought to be for life. If you stop eating it for long enough, the immune system may calm down and you may be able to tolerate it again for a while...but it will generally catch up with you again.... although it might even take years. That is ABSOLUTELY TRUE in Celiac Disease. There is no question that gluten is out of your diet for life in those who have a Celiac Diagnosis.
However, I do personally believe it might be possible that some gluten sensitivity might be secondary to another condition. For example, if your gut is badly damaged from an h. pyloria infection, parasites, or yeast overgrowth~ that can lead to secondary gluten sensitivity. Sometimes, if you clear those problems and heal the gut, perhaps gluten could reenter your diet. Most people I hang out with, though, would never take that chance.... simply because the risk is to great for recurrence. What if something goes wrong in your gut again? And what if the gluten sensitivity was actually the primary problem and directly responsible for the initial gut damage, and poor nutritional status and poor gut health is why you succumbed to h. pylori infection or yeast overgrowth... something a healthy strong immune system would fight off on its own.
These are just my thoughts... that come from many circular discussions we've had trying to figure this all out. My family doesn't have Celiac Disease (or Parkinson's Disease), but we do have family history of autoimmune diseases (thyroid, pernicious anemia, diabetes) and gluten sensitivity, and we've had a wide variety of neurological problems.
I personally believe anyone with any neurological disease of unknown cause should look closely at nutritional status, potential food sensitivities, and the immune system. Goes true for those with any autoimmune disease.
I pulled these references out of The Gluten File as I thought they might be of interest, especially when talking about whether gluten sensitivity might be secondary to another condition...especially the last one.
"Oxidative stress plays an important role in inflammatory process of celiac disease.....
"We've had many patients who were extremely sensitive to dairy and wheat.... and did marvelously after the CF/GF diet. Many of these same patients completely lost their sensitivity to casein and gluten after the antioxidant supplementation..... and now can eat a normal diet without a problem. (Aug 21, 2003) " [NOT Celiac Disease...jcc.. please read in entirety.]
There is testing available for gluten sensitivity, but I don't want to get into that now (gone on too long already) except to say you can test negative for IgE wheat allergy and test negative for Celiac Disease... and still have a big problem with gluten. There is a page on diagnostic testing in The Gluten File, and a page on Food Allergy that lists labs that do IgG food allergy testing... also of great debate in the medical community...for anyone interested in pursuing testing.