eleep

Funny, I was training for my first half-marathon when I caught on to the celiac thing myself. My diet was actually pretty un-gluteny (for someone with no knowledge of celiac or gluten), but I needed to consume extra calories to support the training and I started eating a lot more carbs from wherever I could find them -- it was a box of Mac and Cheese that actually made me collapse and think there must be some issue with wheat....

I've found that meditation works for me when I don't have the energy to fully workout or do yoga -- oddly enough, I'd always assumed it was the physical exercise before the "corpse pose" in yoga class tha calmed me down, but I stumbled into a meditation class last fall in a period when I was overcome with exhaustion and I realized that regular meditation can actually have that same sanity-making calming effect without the exertion.

Although my preferred way to deal with this stuff is to go running -- mmmmmmmm Endorphins!

Thanks,

That helps a lot. I guess I'm going through that emotional uncertainty about whether this is all in my head or not -- but my body knows it isn't. The confusion I'm feeling now is emotional, the confusion I felt a week ago was a foggy brain, achey kind of confusion that made it impossible to think straight or get any writing done on my dissertation.

I'm actually starting to realize that the emotional confusion is more powerful than I thought it was. Usually, I've happily been a "things in moderation" kind of person who ate lots of veggies and fruits and whole grains -- but was able to enjoy cake or pasta or other kinds of comfort food occasionally. I had a bit of a freakout last night because we didn't have any gluten-free food in the house that was comforting -- and somehow I _wanted_ to have comfort food in a way that was scary and that I'd never experienced before. It was made harder by the fact that I have an uncertain diagnosis -- this uncertainty is a really tough one to get comfortable with when you're faced with changing all these aspects of your life so much.

So, I've decided that I'm going to stay gluten-free for a month and then do an experiment with pasta and see if it still makes me feel as lousy as before. Until I'm done with graduate school, I'm stuck with kind of lousy school insurance that won't pay for me to get the Enterolab testing, and I'd rather not tax my savings by having that testing done at my own expense right now. I'll do that when I have a "real" job.

I'm going to dig back in on the dissertation and keep trying to learn how to live comfortably with scientific uncertainty and listen to my body. I'm going to try not to freak out my boyfriend, who is also writing his dissertation and who has done his best to be supportive through all this.

Everyone on this board has been an incredible source of support -- I've found a lot of strength and information reading through posts and such -- thank you so much. You'll probably be seeing me around -- I'm going to try to be as helpful in return as people were to me.

Erica

Well,

I dunno. My blood test results showed no nutritional malabsorption problems, and the celiac panel results were as follows:

IGG <3

IGA 3

TTG, IGG <3

TTG, IGA <3

I also have high levels of beta-carotene (although I think I was supposed to have fasted before that particular test and I didn't) and some test called LD was flagged as abnormal at 89 -- Oh and the MCH count on my hemogram was slightly high.

So, the good news is that I don't have to have an endoscopy. The bad news is that I got a pat on the head and sent home with a fructose-intolerance diet (of all things -- does this make sense to anyone? I don't eat a lot of processed foods and eating fruit actually makes me feel great). I'm sure I came across as a total hypochondriac.

However, I do feel significantly better not eating gluten -- and I know that my blood levels may be skewed by the fact that I was fairly gluten-avoidant beforehand. I guess I'm going off to the nutritionist at my school's infirmary and seeing if she can guide me through figuring out food intolerances and whatnot.

Meh. My big issue is my Type I diabetic father who gets very angry if anyone but him suggests that they might not be able to eat a certain food. When I was a vegetarian I dutifully ate meat served by my stepmother every time I visited. Now I'm just hoping I can avoid the bread basket at home without drawing undue attention to myself.

Erica

Cognitive Behavioural Therapy can be a very good way to get healthy emotional/life habits and structures in place to help her weather all this stuff. It won't "cure" seizures or anything like that, but it can help make her more resilient.

Even before the possibility of having celiac came up for me, I'd radically changed my diet over the last few years in an effort to deal with my fatigue and foggy brain symptoms. So, I went through a long process where I was eliminating things from my diet -- or cutting back a whole lot. Dairy was one -- I love cheese, but I was eating way too much of it, so I really focused on gradually replacing cheese with other, "healthier" things that I sort of liked -- nuts, beans, turkey sausage, etc....

What I've found is that, while it's really hard to give up food that you love, the long term results tend to be more than worth the effort -- and that, once the body adjusts to these changes, it starts to crave the new, healthy stuff more than the cheese. This can take a long period of adjustment, however. I've dealt with the emotional aspect of this by focusing on the healthy stuff I can eat (and do love -- like strawberries and avocados) and learning to cook new things that I really like a whole lot.

Hang in there -- this does get easier over time!

I don't know about how to deal with a reversal of cortisol patterns, but I do know that regular exercise (especially aerobic exercise) can help to manage high cortisol levels. Basically, anything that's good for dealing with anxiety -- meditation, exercise, etc.... will help regulate cortisol levels. Maybe this will also help you to reset your natural rhythms.

I have an on/off again twitch in my left eye which tends to show up at times when I've been eating a lot of gluten -- these also tend to be higher-stress times because that's when I've been more likely to grab sandwiches and cook pasta than put on a pot of bean soup.

In the process of getting tests done and whatnot, I've been eating a bit more gluten -- at the rate of about one peanut-butter-on-wheat sandwich a day (which makes me feel really really lousy) -- although I've been trying to de-stress and take it easy as much as I can with the awareness that I won't feel sick forever.

The eye tic has come back with a vengeance-- does anyone else have this symptom? Most of my celiac disease-like symptoms seem to be more neurological in any case -- but I'm working with a GI doctor right now. Once I get a diagnosis, should I see a neurologist? Could this just be stress?

Thanks

Erica

Thanks! This is very helpful -- I had the trail mix thing covered, but we also go on long trips and pack weight/whole meals/nutrition are a big issue. I guess that the extra dehydrated meals will all have to be consumed by my boyfriend when he hikes the Benton MacKaye trail this summer for six weeks.

This is the first thing that's made me start to cry so far -- I can give up beer and good bread, but the thought of having to cut back on backpacking is something I don't think I could stand. Amazing how a health issue really clarifies your priorities for you!

Ummmm,

We're about to head out on a hike next weekend and I just looked into the box of Enertia trail foods dehydrated stuff we got for Christmas (two sampler boxes) and realized that I probably cannot eat any of it.

So, before I go do some yoga and calm myself down over this one, I thought I'd post to see if there are any other gluten-free backpackers out there with ideas for trail meals.

Heh.

Erica

2nd -- perhaps 3rd the beans thing -- any legume really helps fill me up and I know it's high fiber and plenty nutritious. I've got a great recipe for lobio -- which is a kidney bean/walnut vinaigrette salad thing -- actually, I got it from the Moosewood Cafe _Daily Special_ cookbook -- which isn't gluten-free, but does have a ton of gluten-free recipes for soups and salads.

Most beer definitely isn't gluten-free -- it generally has barley malt (as you mentioned above). I know this because my fiance is a homebrewer and we're in despair of my ever being able to taste his beer again (let alone the fact that we may need to ban his brewing supplies from any other kind of kitchen use)..

e.

My boyfriend and I had already switched to Barilla Plus for our dry pasta before this whole gluten-free thing became an issue. It's a wheat pasta -- but also with lentils and flax seed. He was wondering if we could find a recipe for lentil pasta dough that was gluten-free -- he wants to use the pasta machine.

Anyone got a recipe?

Oh wow -- I'm new to this -- haven't been officially diagnosed yet, but I became aware of _some_ kind of gluten-related issue recently because I'd already cut a lot of gluteny carbs out of my diet two years ago. Things went pretty downhill after holiday eating. I'm making myself sick now eating just a peanut butter sandwich every day while I wait to have my blood drawn on Friday -- but when I first heard about celiac last week I was having fantasies about my last chance to eat all sorts of things before I went gluten-free. I can't imagine eating these things right now, but I'm sure I'll eventually miss them as much:

A chocolate croissant from the local French bakery -- actually _anything_ made with puff pastry as well.

Potsticker dumplings.

Blueberry cobbler with biscuit toppping (from my Chez Panisse dessert cookbook).

Oh, and my boyfriend just started brewing his own beer six months ago -- I got him set up for his birthday. Did I mention that I was also a bread baker for a while and had recently said that I should start a sourdough again?

Finally -- Cheese on Wheat crackers -- totally processed and evil, I know, but I've been thinking that I'm going to have to avert my eyes from them every time I walk into a convenience store....

Oh yes -- and we're talking about getting married in the next year -- damn it -- I'm really trying not to think about cake issues -- I'm sure I can find a way to deal with all the reception food except that....

I've just posted on some related stuff in the thread about anxiety -- one thing I said there that I think really relates here is that brain chemistry can change over time in response to long-term, un-dealt with anxiety, depression, etc.... -- that is, anxiety and depression that aren't managed earlier on (perhaps through lifestyle changes, perhaps through medication) can develop into more persistant, difficult-to-treat disorders that require medication.

I don't know how bipolar disorder fits into this exactly -- my mother was diagnosed as bipolar (although she was put on Prozac at the end of her life -- which is a no no for someone who's bipolar -- and she didn't have any of the mania associated with bipolars on SSRI's). I do know that bipolar disorder is often initially triggered by stressful life circimstances -- so people with bipolar disease in their families would do well to find ways of managing anxiety and depression early on.

Just a note to people wondering about taking "anti-depressants" for anxiety -- most of the serotonin-influencing antidepressant pharmaceuticals and supplements (the SSRI's and the 5-htp, etc...) are used to treat anxiety because there's _some_ connection between serotonin, a few other neurotransmitters and the cortisol/adrenaline systems (these are the ones at play in anxiety). So SSRI's are now one of the most-indicated prescriptions for anxiety-related disorders.

A chapter of my dissertation is on biological psychiatry -- I'm a cultural studies scholar, not in a medical field, but I have done a lot of research on the biochemistry so I can translate between the two a little bit. Essentially, ongoing anxiety problems have to do with one's cortisol production getting out of whack -- which can be caused by a high-anxiety childhood, a long period of unrelieved issues with anxiety, etc... -- basically what happens is that the triggers get set to low-tolerance levels so that it's much more likely that high anxiety will flare up in the future -- even in situations where anxiety levels would otherwise be pretty low. It's unclear whether this is a permanent neurochemical change (although I know a few psychiatrists who treat it as such). There's also a strong relationship between cortisol production and low serotonin levels. However, all of this is really new research (relatively speaking), so no one has hard answers.

Personally, I prefer to manage anxiety through yoga, diet, jogging and meditation, but that doesn't always work (or isn't always possible), so I have a lot of respect for the power of the psychotropics to pull people out of really difficult situations where they just need a leg up. I took an SSRI for a while after the death of a parent. What I think is most important -- regardless of how you choose to handle anxiety -- is to be aware of it when it's going on and to find some way of managing it -- because the long-term effects can get worse and worse.

That's not a particularly un-stressful way of looking at it now that I read what I've written, but I really take a very positive perspective on this -- meditation helps a _whole lot_ here for me!

Thanks everyone! Yeah -- it's been difficult to keep eating as I usually do lately without feeling somehow that I'm really poisoning myself, but having grown up with a Type I diabetic father, I know how much of a commitment making really definitive dietary changes can be. I can say that -- now that I'm keeping a food diary and logging GI symptoms -- I can detect some correlations between gluten consumption and celiac-type symptoms -- particularly the GI stuff and the fatigue (which I've been battling and concealing for years).

Hi all -- I'm new to this forum and the whole idea of celiac -- I stumbled across the disease when I was researching what appeared to be a bad reaction to holiday eating and, in particular, a white pasta experience that really threw me off.

I'm 36 and have had a lot of the celiac symptoms in somewhat manageable form for most of my life since college (oddly, right around the time I had mono -- which I've seen people discuss on the board). In my 20's my diet was pretty bad -- I was in rebellion from a Type I diabetic father (another indicator) and ate a whole lot of pasta and refined grains. I started to try to deal with the overwhelming brain fogginess and fatigue (which I thought might be depression -- and was also diagnosed as ADD at one point) by really overhauling the way I cared for my body sometime around my 29th birthday -- I made a lot of slow, gradual changes, but basically they amounted to becoming a dedicated yoga/weights/jogging person and really focusing on cutting processed, refined foods out of my diet -- I actually backed off on being a total vegetarian and started to bring some limited amounts of (mostly) fish, poultry and meat into my diet.

Among the changes I made were to really focus on getting most of my carbs from close-to-nature sources -- so for the last 2 1/2 years I've predominantly been getting most of them from beans, whole grains -- including whole wheat bread, that Barilla plus pasta (which is very lentil/flax seed heavy as well as wheat) things like quinoa and sweet potatoes and brown rice, winter squash, etc. However, I'm not a fanatic -- I do eat refined stuff occasionally, I do eat some sugar occasionally -- usually on special occasions or when I'm out at nice restaurants -- or when I really really have to try out the artisanal bread at the new bakery or someone brings an almond cake to a party or something.

Okay -- long intro, here's my question: has anyone else had this experience where their diet was pretty well-regulated and semi-gluten-limited yet they were still able to be diagnosed as celiac? Could the relative mildness of my symptoms (especially the GI stuff -- I have D. or D. like BMs most days of the week, but they're really not a disturbance and it never occured to me that they weren't far from normal) have something to do with the fact that my diet _isn't_ really gluten-heavy?

I have an appointment to see a gastroenterologist next week -- I'm hoping he'll at least be able to definitively make a blood/biopsy diagnosis, but I'm a little concerned that my "healthy" habits over the last few years might make a diagnosis hard -- how paradoxical -- anyone got any experience/advice? If it is celiac, I'd really like to cut out the gluten, but I want a hard diagnosis before making this decision.