celiac stuff
Jun. 30th, 2006 03:25 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rmI just went and bought groceries to prepare for my sewing weekend. The Whole Foods people are very nice to me, and open up packages to let me sample new gluten-free things. I can't tell you what a kindness this is, when your diet is so restricted and so many of the alternative foods are just nasty.
One of the many unfortunate realities of having this thing is that I spend about four times as much on groceries as I used to. On the other hand, as it is a health expense it should largely be tax deductable, although I will probably need lots of documentation on that, because in America celiac is not widely regarded (although it's getting better) as a serious illness. Anyone who knows me, and knows I will work through anything has seen exactly how serious this is with me. My not being able to work, to even sit up to read, the way my eyes twitch if I eat contaminated food so my body stops absorbing vitamins -- everything. I'm never off my feet. This got me for months more or less, and now it's constant vigilence. It's had a profound effect on my personal, professional and inner lives in a way that makes me utterly, utterly angry.
Many of you have asked me what I eat now. One of the ironies about having to shop at Whole Foods to get most products I can use, and having to have things mostly made by smaller producers is that I eat better in general -- organic, no additives, less refined sugar, etc.
Thanks to wheat-free soy sauce, I eat a lot of sushi. Larabars are also a staple. Corn chips are used for everything from hummus (which I eat lots of) to peanut butter (which is hard to find in a non-contaminated version). Oddly, I've largely lost my taste for meat in all of this. I still enjoy it occassionally, and it's one of the safest things I can eat, it just seems I rarely do anymore; I've been told this is common, as my body is not being interfered with anymore as it tries to absorb what I do eat. I also don't have accute citrus or sugar cravings anymore, nor do I find my body pining for wheat-based things.
While I've gained back a lot of the weight I lost in this ordeal, the fact remains I'm at my base weight from when I was 19 -- that is, 103lbs as opposed to my adult weight which has been between 110 and 115. I'm very fine boned, and this doesn't look terrible on me, but this isn't really what my body wants right now -- it's just it's all it can do. I am accepting of it, largely because society doesn't particularly penalize being too skinny and because my internal landscape is so much younger and more male than my external one -- I don't really mind the physical results. But it's hard to be this 103lbs as opposed to the strong, wirey 103lbs I was back then. I'll probably try to go to a nutritionist soon, but unless I make it my only job, the weight might not be something I can gain back.
I have to google about foods constantly to see if they are safe. In doing this, I'm bombarded by information about celiac from sources good and bad. This can be hard. Celiac disease is associated with higher risks of some cancers (although whether this is triggered by eating gluten, a pairing of a genetic trait, or the nutrition absorption problems, no one knows), and there are some neurological associations with it -- particularly in childhood onset cases. However, every time I want to see if I can eat something, it sucks to bump into the litany of things I'm supposed to worry about now -- cancer, epilepsy, infertility and more. It is very tiring. I should also note here that celiac is largely considered a disease of women (as most auto-immune diseases are) although statistics don't actually seem to support this significantly. Additionally, studies show that nearly 50% of celiacs have approximately 30 doctors visits related to celiac symptoms before receiving a diagnosis. You are the only advocate for your health.
On the other hand, I am doing much better about not lamenting things I can't have. Although the snacking issue can be the toughest, like when there's a bowl of popcorn on a bar and I don't know what's in it.
The more I learn about celiac, the more I'm sure I've had this my entire life, and it just took a while for my former cast-iron stomach to be effected by it. My inability to gain weight and mental health issues throughout my life are just two of several clear signs including skin problems, constant snacking, and the fact that the nature of my type of heart murmur is increasingly considered to have a neurological link as well.
This is tiring stuff. And pretty minor as compares with many of my friends here and elsewhere with chronic medical concerns. But it is like crossing a river and being told you can't go back, and back over there are the living and over here the living too, although so many, even those involved, seem less inclined to believe it. I think, perhaps, this is a poor metaphor in a world where travel is easy, but that is the point I am trying to capture. It seems like it should be easy not to live in this land of without -- it is so easy to do everything else; I have a box smaller than a pack of cigarettes that let's me talk to anyone anywhere in the world anytime I want, afterall. But there's nothing for this, and we're spoiled, and that makes the acceptance of it hard.
And in a way, I'm glad this happened to me, because I think I needed to know I could survive in these borderlands too.
One of the many unfortunate realities of having this thing is that I spend about four times as much on groceries as I used to. On the other hand, as it is a health expense it should largely be tax deductable, although I will probably need lots of documentation on that, because in America celiac is not widely regarded (although it's getting better) as a serious illness. Anyone who knows me, and knows I will work through anything has seen exactly how serious this is with me. My not being able to work, to even sit up to read, the way my eyes twitch if I eat contaminated food so my body stops absorbing vitamins -- everything. I'm never off my feet. This got me for months more or less, and now it's constant vigilence. It's had a profound effect on my personal, professional and inner lives in a way that makes me utterly, utterly angry.
Many of you have asked me what I eat now. One of the ironies about having to shop at Whole Foods to get most products I can use, and having to have things mostly made by smaller producers is that I eat better in general -- organic, no additives, less refined sugar, etc.
Thanks to wheat-free soy sauce, I eat a lot of sushi. Larabars are also a staple. Corn chips are used for everything from hummus (which I eat lots of) to peanut butter (which is hard to find in a non-contaminated version). Oddly, I've largely lost my taste for meat in all of this. I still enjoy it occassionally, and it's one of the safest things I can eat, it just seems I rarely do anymore; I've been told this is common, as my body is not being interfered with anymore as it tries to absorb what I do eat. I also don't have accute citrus or sugar cravings anymore, nor do I find my body pining for wheat-based things.
While I've gained back a lot of the weight I lost in this ordeal, the fact remains I'm at my base weight from when I was 19 -- that is, 103lbs as opposed to my adult weight which has been between 110 and 115. I'm very fine boned, and this doesn't look terrible on me, but this isn't really what my body wants right now -- it's just it's all it can do. I am accepting of it, largely because society doesn't particularly penalize being too skinny and because my internal landscape is so much younger and more male than my external one -- I don't really mind the physical results. But it's hard to be this 103lbs as opposed to the strong, wirey 103lbs I was back then. I'll probably try to go to a nutritionist soon, but unless I make it my only job, the weight might not be something I can gain back.
I have to google about foods constantly to see if they are safe. In doing this, I'm bombarded by information about celiac from sources good and bad. This can be hard. Celiac disease is associated with higher risks of some cancers (although whether this is triggered by eating gluten, a pairing of a genetic trait, or the nutrition absorption problems, no one knows), and there are some neurological associations with it -- particularly in childhood onset cases. However, every time I want to see if I can eat something, it sucks to bump into the litany of things I'm supposed to worry about now -- cancer, epilepsy, infertility and more. It is very tiring. I should also note here that celiac is largely considered a disease of women (as most auto-immune diseases are) although statistics don't actually seem to support this significantly. Additionally, studies show that nearly 50% of celiacs have approximately 30 doctors visits related to celiac symptoms before receiving a diagnosis. You are the only advocate for your health.
On the other hand, I am doing much better about not lamenting things I can't have. Although the snacking issue can be the toughest, like when there's a bowl of popcorn on a bar and I don't know what's in it.
The more I learn about celiac, the more I'm sure I've had this my entire life, and it just took a while for my former cast-iron stomach to be effected by it. My inability to gain weight and mental health issues throughout my life are just two of several clear signs including skin problems, constant snacking, and the fact that the nature of my type of heart murmur is increasingly considered to have a neurological link as well.
This is tiring stuff. And pretty minor as compares with many of my friends here and elsewhere with chronic medical concerns. But it is like crossing a river and being told you can't go back, and back over there are the living and over here the living too, although so many, even those involved, seem less inclined to believe it. I think, perhaps, this is a poor metaphor in a world where travel is easy, but that is the point I am trying to capture. It seems like it should be easy not to live in this land of without -- it is so easy to do everything else; I have a box smaller than a pack of cigarettes that let's me talk to anyone anywhere in the world anytime I want, afterall. But there's nothing for this, and we're spoiled, and that makes the acceptance of it hard.
And in a way, I'm glad this happened to me, because I think I needed to know I could survive in these borderlands too.
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no subject
Date: 2006-06-30 08:13 pm (UTC)no subject
Date: 2006-07-01 08:29 am (UTC)no subject
Date: 2006-06-30 11:37 pm (UTC)no subject
Date: 2006-07-01 12:22 pm (UTC)no subject
Date: 2006-07-01 08:29 am (UTC)Like many PFCs, I am always on the lookout for anything that can make me feel better.
no subject
Date: 2006-07-01 12:20 pm (UTC)Basically the blood test can only tell you if you are intolerant to gluten. It can't tell you if you are celiac (basically, you can be allergic to wheat without the allergy causing an immune response that results in ulceration of the intestine, which is what happens in celiac and makes the allergy a long-term illness issue. Officially the diagnosis process for that is still ridiculous -- intestinal biopsy while eating wheat; six months wheat free, another biopsy; six months eating wheat, a third biopsy -- however, if the evidence seems clear many doctors will give you the diagnosis without it, because a) that's very intrusive and the condition is debilitating enough that it's absurd to ask a person to reintroduce gluten to their diet for six months (I literally couldn't do this and work or function on any level at all) if eating even a speck of it makes their intestines bleed (and pretty much a single bite of whole wheat bread is enough to do that to me noticeably and even contaminated food makes me ill with results that last for days)).
What a blood test can't tell you is if wheat is effecting your mood and energy levels (wow, I'm not clinically depressed or having episodes of rage for the first time since birth) which is also common both in people with and without actual celiac disease.
Wheat is scary -- it's a good food more and more people ae becoming allergic to because we are using additives derived from it in everything, causing people's bodies to develop some very scary immune responses to it.
The good news is, that an elimination diet will tell you what you need to know very quickly -- intestinal distress will start with subside within 48 hours -- mood, skin and the like changes are just as abrupt but take a few days more. The other good news is is that if you want to do a blood test (in which gluten must still be in your diet to see if the reaction is occuring), it can be ordered online and done at home for about $100 if redoing that panel of stuff at a doctor is too financially or logistically inconvenient.
Honestly, I would tell anyone who suspects thish might even remotely be a factor with them to just not eat the stuff for a few days. This was something that came u as a possible cause of my problems repeatedly while I was ill, but I, my friends and my doctor all dismissed it repeatedly _solely_ because we all felt it was too inconvenient to stop eating gluten (which it is, it's in everything). If there's even a chance this is effecting you, try it.
If you need info on gluten-free stuff to watch out for or places to lood for hidden wheat in foods, let me know.
no subject
Date: 2006-08-02 04:41 am (UTC)Looking around, I think my problem really is just IBS and not gluten. I've even made my own wheat gluten meat substitute and not had major problems from eating pure gluten in that form.
no subject
Date: 2006-07-01 10:17 pm (UTC)When I was diagnosed, some of the questions my GI asked me were:
"Do you often have bloating and/or gas, especially after eating?"
"Do you have symptoms of acid reflux, or have you ever been diagnosed (untested) with an ulcer?"
"Do your bowel movements leave a greasy sheen on the toilet water?" (sorry, but she really did ask that)
I can't remember any of the other relevant questions, but those were all pretty major indicators. Though she didn't give me an absolute diagnosis until after the endoscopy, she seemed quite certain of it based on the symptoms I reported to her (combined with my anemia).
no subject
Date: 2006-08-02 04:49 am (UTC)Thank you for the information, though- I am chronically ill and if there's any chance that this could be something treatable, I jump at it.
no subject
Date: 2006-08-03 09:04 pm (UTC)I should clarify about the weight loss/gain issues: I've been overweight essentially all of my life - there is some speculation by my doctors that I have consistently overeaten in an effort to get the vitamins and minerals that my guts weren't absorbing. I've never been a huge wheat-eater, because of the bloating and discomfort that I associated with things like bread, but in 2002 I quit working for two years, and as a result, ate even less of the stuff. When I started working again in '04, I started back on the "office diet" - the occasional pizza party, treats brought in by coworkers, a bagel for breakfast most days. The sudden overload broke my system somehow, and changed the celiac from a constant, low-grade issue into a constant, acute one. It had been going on for nearly 3 months before I saw the GI.
I didn't have any idea what was wrong, so I tried to stick to a classic bland diet - which meant bread & saltines, among other things- so I made it much, much worse. By the end of the 3 months I had lost over 40 lbs.
Since I've learned what the problem is, and made the appropriate changes in diet, and found all sorts of tasty, gluten-free substitutes...I've gained back that 40, and then some. Sometimes I consider (only half-jokingly) going back on a wheatfull diet just to lose some weight...it doesn't seem to be budging otherwise.
So I guess what I'm saying is that it might still be worth your while to try an elimation diet for a week or two - just because your issues aren't acute at the moment doesn't mean you're not dealing with the same problem.
Another note: though there are some people who have actual wheat allergies, celiac is NOT an allergy. It's an auto-immune disorder that causes your body to try to eat itself, basically. So it wouldn't show up in most sorts of allergy tests.
You might get some use out of the Specific Carb Diet info, here:
http://www.breakingtheviciouscycle.com/
no subject
Date: 2006-07-01 05:02 pm (UTC)no subject
Date: 2006-07-01 07:06 pm (UTC)no subject
Date: 2006-07-03 02:41 pm (UTC)The UK Coeliac Society (http://www.coeliac.co.uk/) publish a directory of foods, I'm assuming you have something like that.
If it's any consolation, the situation is far better now than it was in the 70s. These days you can get gluten free bread in the health food stores; back then, my bread had to be shipped to us in cans. I remember the first time we were able to get an actual loaf of bread that was gluten free, my whole world changed.
You should probably get a bread machine and some mixes (http://www.glutenfree.com/glu/showprod.cfm?&DID=7&CATID=1&ObjectGroup_ID=31).
no subject
Maybe no one's done a study on it, but anything that causes constant irritation is likely to cause cancer. Your risk will probably go way down at this point. As for neurological disorders: do you know how many of them can be triggered simply by a lack of B vitamins?
Congratulate yourself: there may be less fun stuff on this side of the river, but you're also a lot safer.
I'm wondering if celiac is considered a disease of women simply because women are taught to pay attention to their bodies' signals, and men are taught to ignore them. "Just grit your teeth and keep walking."