Friday, September 9, 2011

...The Mystery of Wheat and Gluten Intolerance

This week, I noticed a shift in the air around me, I'm being transformed by the way-cool feedback I've been getting on my new blog.  Thank you! My energy is different; no, I'm not exactly ready for bike-riding,  but I'm needing less sleep.  I've found a new purpose to my days.  Sleep, some say, is like a temporary death anyway.  I'm reaping the benefits of " the power of loose connections".   Readers and fellow MS bloggers from near and far are reaching out.  Please join my blog.  There's some bugs in "blogger" software, so get in touch via other channels, like regular email, not "google friends".  I'm now going to tell you about my week's extracurricular adventure and, for the medically inquisitive, gluten intolerance and its mystery.

So, Tuesday evening after dinner I tried something different.  I drove over to a functional MD's after-hours lecture on wheat and gluten intolerance.  I walked in, sat myself down on a rather hard folding chair, and hoped to remain wide awake for the next two hours. It turned out that was no problem at all.  I got a bit emotional - Beethoven's 9th was playing softly and its a beautiful piece.   Humm, a doctor's office with a mood-setting stereo system, fancy stuff.  A woman, a complete stranger, sat down next to me.  Noticing my cane, which I carefully, but unsuccessfully, always try to hide, she said: "If you're going to have a cane, its good to have a stylish one.  I've a feeling you're going to get rid of it here."  She then got up and sat somewhere else.  I think she was an angel.

Check out Bob Dylan's first track, on the CD "Modern Times".   "I'm gonna forget about myself for awhile so I can see what others need."  The doctor told us he doubts that 90% of MDs are even aware of this topic.   Celiac disease and/or gluten intolerance is very widespread in both adults and children.  I knew about it because eliminating wheat and gluten is common for many people with MS active in their recovery mode.  (An analogy: the general population getting the message loud and clear that tobacco is a no-no.)  A person can have gluten intolerance with no gastro-intestinal symptoms - it can show exclusively as a neurological disease, compromising the brain and nervous system.  Like other degenerative disease, it involves intra-cellular inflammatory processes.  Sound familiar, MSers?   For the record, I absolutely believe vascular disease, CCSVI, is also a culprit in MS.  More on my personal CCSVI adventure-experience soon, in a future blog.  Its a topic so important it needs my total blogosphere.

The program went on to say that gluten elevates cortisol, an anti-inflammatory hormone released by the adrenal glands.  Too much cortisol production depletes the adrenals, not a good thing.  You can ask your doctor to test your cortisol levels.  Gluten intolerance can also present as "Ataxia", meaning lack of muscular coordination, unsteady gait, wobbliness due to the brain's failure to regulate the body's strength and direction of limb movements.  I hadn't known any of this, because it never is mentioned in my 15 minute widely spaced neurologist visits. The mean age Ataxia shows up is often between 48-54.  BINGO - I had to give up my bicycle riding at age 54.  I couldn't stay balanced every time I had to come to a stop.  Same would apply to motorcycle riding, were I so inclined....

Its becoming more widely reported, by both patients and medical professionals on research's cutting edge, that some MS folks are halting and even reversing their symptoms/disabilities.  Patients are doing this simply by changing their diet and totally eliminating wheat, gluten and dairy.  I believe there's so much to learn and that no one has all the answers.  I rec'd some excellent advise this week in the form of an email from a doctor very involved with MS recovery.  "Think deeply and read widely".  Before Tuesday's lecture, I thought I'd achieved 100% gluten freeness.  I may have been wrong.  Gluten sneaks in innocuously in ketchup, for one.  Oats are a safe grain, but can be contaminated in their manufacturing process. When I've traveled, I've ordered oatmeal, mebbe causing an imperceptible but damaging inflammatory response in my brain. 

I've asked people with MS why they don't follow a gluten and dairy free diet.  What they say is that freedom to eat whatever they want is one of the few remaining pleasures in life.  In the spirit of equanimity, I let it go at that.  I also read something unsaid: "My neurologist doesn't tell me anything about diet restrictions, and I only follow the doctor's advise."  That's very sad.  I can truthfully tell you that in my house, we have never eaten so well, with so many different varieties of veggies, meats, fish, seasonings, textures, then at the present time.  So what if the bagles or chips are long gone? My loving husband Greg is thrilled to get home, smell the aromas, and reap the rewards of my healthy addiction. A significant portion of my "budget" goes towards this lifestyle.  If I can't ingest it, rub it on, read it, or be entertained by it, I'm not too interested anymore.  A certain affinity to the kitchen also gets me standing up more at counters, a side benefit people with MS and their physical therapists can relate to.  So, let's be cool and get the inflammation down!!

Hey - don't forget to email me,  or otherwise follow my blog anyway you can.   Thanks for reading!


  1. My allergy test came back positive for wheat, bakers yeast and egg whites. I feel that I have no choice but make diet changes, but am surprised at how many comments I have already received about how I can just have a little or cheat or whatever. Um, no thanks! I'm also surprised that allergy testing is not done more often for those of us with chronic illnesses, as there definitely seems to be some connection, IMO. Anyway, wheat is in a LOT--and can contaminate a lot in the manufacturing process. I just bought g/f oats and I'm trying to decide if that means I have to throw out what I already had!

  2. Ginia, for me, I usually go cold turkey and let someone else finish off the potentially offending oats. FYI contamination showed up in less than 100% of tested oats. (reference, the DVD). Yes, I agree allergy testing should be made part of the standard of care, we'll have to demand it, since our docs are not trained in nutrition. PS, you are lucky, I am sensitive to at least 25 different, common food items!!

  3. Hi - nice to "meet" you and sorry too for the reason why. I am like you, 60, w/Relapse Remitting MS, i was diagnosed in June 2004. Let's hang on together. Stop by my place if you get a moment - my bog is not MS specific although it is part of it, for sure as is MS part of me - not all of me, but part.
    Love Gail