Musings on gluten

[mamagotcha]

So... my mother had a constellation of symptoms that eventually killed her. One of the worst things, for her, was the constant brain fog that clouded her focus (she was a nursing practitioner and had finished law school... her brain meant a LOT to her).

When she was towards the end of her life, I asked her physician if she could possibly have Multiple System Atrophy. He hemmed and hawed at me, and since there is no treatment or cure, I didn't pursue it. But it's always been bothering me that we never really knew what happened to her.

In the last year, I have been having these attacks of brain fog, as well as the psoriasis (it's under control with the light therapy supplemented by occasional topical steroid use, but it's definitely still there). I hadn't connected the fog and skin/joint issues until I found out about gluten intolerance, and so I've been experimenting with it. When I eat gluten-free, I definitely have fewer problems with the brain fog and joint pain. And while I was told that brain fog was a menopausal symptom... it turns out that ataxia is the most common sign of gluten intolerance. Joint pain is the second-most common.

I started to wonder... is there a possibility that the brain fog that plagued my mother in the years leading up to her decline and death was from gluten intolerance? One study says there is evidence to "suggest a possible role for gluten sensitivity in the pathogenesis of some cases of MSA." There are more studies that suggest a similar finding.

Turns out undiagnosed celiac problems can also cause earlier menopause and miscarriages. And quite a number of people start having more problems with gluten when they hit menopause.

I'm starting to think that going gluten-free is possibly a really, REALLY good idea for me.

Comments

[mamagotcha.livejournal.com]

Why? The blood test is notoriously inaccurate (up to 80%, by some estimates), I have no desire to do an intestinal biopsy, and my current doctor cannot even figure out how to renew my light therapy prescription (fortunately, I can override the cutoff on the machine) or CPAP filter re-order (We just paid out of pocket... yes, I know I need a new doctor). I am experiencing good results from a gluten-free diet... ataxia is nearly gone, joint pain much improved. Just running a test to confirm what I can clearly see via empirical evidence would be a waste of resources. If I were at a crossroads... do I do A or B?... and needed more information to make a decision, then pursuing other testing options might be worth it (stool samples, etc). Until then, I'm feeling OK with being my own advocate.

[mh75.livejournal.com]

That wasn't like a 'don't do this without doing a test first', but rather a 'would be interesting to know if you can pin it down to that cause'. My understanding was that there was a definitive test for celiac disease, whereas the effects of dietary changes are prone to placebo effects, and confounding variables. Forgive me if i am wrong.

On the other hand, it always seems like if you can find something that works in your life, and its at no cost to anyone else, why not pursue it. I hope it continues to work for you.

I do wish you could find a doctor who didn't frustrate you so much. That just doesn't seem fair.

[mamagotcha.livejournal.com]

Bill and I were talking about that last night. I need to get back onto that search. Thanks for the nudge!

[roshismomma.livejournal.com]

I would definitely get tested. I can go into our whole story if you want.... *if* your insurance would cover the tests, and here's why. For *me*, knowing I have the antibodies for celiac (I have the antibodies but had a negative biopsy my gastroenterologist calls it "latent celiac") keeps me more strictly adhering to my gluten free-ness than I think almost anything would.

Its really not 80% false though, the new tests are much better than that.

[mamagotcha.livejournal.com]

I gotta say, watching what my mother went through is a pretty damned powerful incentive. However, if I find a doctor who can convince me that they are not a technophobe or misanthropist or unaware of HAES (how I miss you, Jane! She would talk to clients via e-mail, often responding within the hour... she totally spoiled me!), and they think further testing is a good idea, then we'll do it.

Glad to hear the new tests are more reliable. That's hopeful.