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

[mh75.livejournal.com]

seems like it would be worth getting tested for celiac...

[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.

[roshismomma.livejournal.com]

Sorry I hit send before I meant to ... of course, I am all for going gluten free if it helps you without the test. But once you go GF, the test will likely not be accurate again. Just so you know that part. I don't mean to be unsupportive. Just our experience. And if you do go GF and want any guidance or recipes or whatever, I'm happy to help.

[mamagotcha.livejournal.com]

Thank you so much... if you want to shoot me some of your favorite websites or books, I'd be so grateful!

[roshismomma.livejournal.com]

For you, oh foodie sort of person, I think the best resource would be http://www.glutenfreegirl.com. She's awesome. I also like http://glutenfreegoddess.blogspot.com/ and http://www.elanaspantry.com.

Those are more about food. If you are concerned about how to remove cross contamination from the kitchen, or gluten related health problems, or whatnot, that's a different set of links...

[mamagotcha.livejournal.com]

I am still baking all the bread for our family, and I've invested too much time in learning about sourdough to toss it out the window! I am also trying to notice what amounts do what things... my feeling is that I have an intolerance rather than a full-blown allergy (I don't get most of the, erm, more exciting symptoms, thankfully). I've noticed that when I eat a piece of toast or any pasta, I feel drunk and stupid for several hours afterwards. But I'm not to the point where I'm feeling like I need to avoid every jot of gluten to be healthy, so I'm not stressing over salad dressings (yet, anyway). I'm wondering if, by staying away from the E-Ticket gluten rides, there could be an unwanted side effect of actually becoming more sensitive to smaller amounts (like what happens when I'm off caffeine for a while... it just takes a little to get a buzz going).

I'll enjoy digging through those sites, and I thank you for your time and kind words!

[via-lens.livejournal.com]

In my experience, it is dangerous to assume "oh, a little bit won't matter." In the short term it doesn't seem to matter, but the reaction is systemic and the more it builds up, the more likely you are to have worse responses. Going GF entirely is something I'm still struggling with, but I'm learning to substitute smartly and to understand that it is better to replace than to replicate -- that is, instead of going for a gluten free bread sandwich, to find a salad I like on the menu.

It is easy to make salad dressings without flour, or with non-wheat subs like quinoa flour or ground toasted rice.

Did you ever do an igG reactivity test?

[mamagotcha.livejournal.com]

No, I haven't done that test. I started to bring it up with the doctor during the last visit, but I had to choose my battles with her... it was pulling teeth to get anything (and at the end of the visit, I found out why: "We don't usually deal with more than one issue per visit." I was supposed to make six appointments instead of write out my requests and do my research ahead of time). I STILL haven't gotten the CPAP prescription from her; we paid out-of-pocket. So... new doctor. Soon.

I didn't notice the fog clearing (or didn't have as much problem with the brain fog) when I tried the anti-inflammatory diet to corral the psoriasis a while back (it didn't do much for the existing lesions, but the joints did feel better). I also remember feeling pretty good when I was doing the Atkin's thing about twelve years ago... I know now that it's not all it's cracked up to be, but definitely removing the grains did a lot for my inflammation in several ways. Menopause has hit full-force in the last year, and the brain fog was bad bad bad in the last few months. It finally sank in that it hit worst on days we had waffles or pancakes or bagels for breakfast (and I'd feel drunk for most of the day, enough that I didn't trust myself to drive sometimes). It seems to be the big doses that caused the shutdown; but I have to wonder what's going on with the smaller doses? Can I handle those just fine, or is there hidden reactions going on that I'm not noticing?

Good luck with your big upcoming event... fingers crossed!

[via-lens.livejournal.com]

Thank you for the well wishes! I wish YOU luck in sorting this all out for yourself and feeling better.

Paleo is the new Atkins. Not in terms of quackery, but in terms of a good low carb diet that is actually sustainable and also nutritionally complete.

In my case: if I eat the inflammation triggers on a semi-regular basis (so that they accumulate but I never have the really terrible gastric distress or the headaches), I get other issues. Like the bottoms of my feet will erupt in eczema, or I'll have a severe attack of rheumatoid arthritis in my knuckles seemingly out of nowhere.

Before I cut out most wheat, eggs, and dairy, I got a headache every single time I put food in my mouth. Now I almost never get headaches because I'm not eating those things at every meal, but a bad week still results in a bad day or two.

[popefelix.livejournal.com]

+1 Paleo

If you do go paleo, just be aware that there are a lot of opinions as to what is and isn't "paleo"; find a definition that works for you. For example, I have significantly reduced the amount of wheat and sugar I eat, and instead I eat lots of eggs, yogurt, milk, cheese, and meat. Nom nom nom meat.

[roshismomma.livejournal.com]

Sure. The gluten free girl in particular is a baker, so, you might dig her stuff.