I told you this shit was funny

[rm]

I can't use the hair stuff I've been raving about anymore. Wheat wheat and wheat. I'm hoping I can cancel the order I already put in since I was about out.

Anyone got any recommendations for shampoo recipes and conditioner recipes? It looks like if I want what I want I have to clean up the kitchen and go all mad science on this thing. (and yes, you can post links to wheat-free shmapoo providers, but I'm so picky about scent and ingredients for other reasons, odds are my kitchen is the only answer at this point).

I'm unhappy.

On the plus side, Villainess soaps and BPAL seem to be safe.

Monday all my wheat goods in the house go bye bye -- opened things in the trash and unopened things (mostly sweets) as an offering to the office to keep them away from my goods.

It's hard, going back and forth between this sense of this entirely not being a big deal at all and then feeling like it is. The only thing I'm sure of, other than I feel better, is that I have no perspective right now.

Comments

[fuyukodachi.livejournal.com]

What sort of names do wheat ingredients masquerade under, if anything?

I didn't see anything obviously wheaty in the shampoo/conditioner I'm using from Avalon Organics, which successfully moisturizes my hair and scalp (somehow, I have oily hair that is dry, and a painfully dry scalp -- wtf?) while leaving it feeling pleasant and soft: http://www.avalonorganics.com/?id=88&pid=28

Some of their things do have wheat protein, but not the peppermint kind, at least.

[grr-rob.livejournal.com]

Well, yeah.

It is a big deal, because it means Something Essential Has Been Fucked With. Food is a big deal, on all sorts of levels, and now this big furry evil piece of challenge has been plopped down in front of your path to happiness. And if not happiness, at least a nice piece of chocolate cake.

And yeah, not a big deal. Because if all you have to do is avoid this one piece of stuff, and you'll feel better? Yay. And it's easier than a nut or shellfish allergy.

I read about a kid who, at age 8 or 9, had to go GF. He and his mom went down the cereal aisles, mourning and saying farewell to all the kid cereals. I did a similar thing with Mexican panaderias. It is a big emotional deal, and it felt weird to me that it was like that, but it was.

Each person's experience is different, and changes over time. When I went gluten free, my allergist offered to do a bowel biopsy if I really wanted one, but didn't think it would add much to his diagnosis or my experience of life. So I didn't get diagnosed that way. But we agreed that celiac is likely what has been up, and I've stuck with that.

Random things I've learned:
-- This is much more common in people of Northern/Western European stock, and more common the closer you get to Galway in figuring out one's ancestry. Celiac is like 1 in 800 people of Irish descent, compared to 1 in 2500 ish in general. (These are figures out of my slightly spaced out head, so if the numbers are off, please forgive me. The proportions are pretty good, though.)

-- Some of my mood disorder symptoms went away completely. Some of my attention issues got wildly out of control. Watch for mood changes, and go easy on yourself the first month or so.

-- I find I don't have to be as rigid as I was the first several years. If I slip and use the soy sauce for my sushi dipping, I don't have a horrible reaction, like I did at first. But it's a dip, and once a very rare while, and not face first into a croissant.

The first three years I was really quite careful about all four of the grains. Now I can have organic oats sometimes, and I'm not as worried if barley malt shows up in a food. I've never been that worried about stuff that's made on machines that process wheat, but I'm not as reactive as some folks.

Kids, for example, usually have a worse time than adults, with having to be very, very careful at all times.

-- "Living Without" magazine is a great resource. Whole Foods has a dedicated GF bakery and all their stores have GF stuff. http://www.happyhappyhappy.com/ -- GF bakery in NYC.

GF bread often goes stale, faster, and usually tastes better warmed up. The dough of GF cookies? Often really gross tasting.

I never quit using the organic shampoo I was using, even though it had a low level of wheat protein. Since I wasn't ingest it, it didn't seem to make a difference to me.

Do you drink? That can be a challenge, finding something that's not wheat, rye, barley or oats. Vodka and tequila, I guess. (I stopped drinking before I went gluten free, and that probably saved me from totally losing my mind giving up the grain.)

I kind of gathered that taking communion isn't necessarily a big deal for you, but I don't want to make assumptions. If it is? Always call ahead and see if they can provide GF wafers. A couple of times I showed up with my little GF shortbreads, which then became the GF body of Christ.

So, there's some more of my words of celiac wisdom. It is a big deal, it isn't necessarily the end of the world, and it does get easier. And I'm so much happier and healthier, now, 8 years after the fact, than I was before I figure some of this out. Feel free to email if there's stuff I can answer.

[marzipan-pig.livejournal.com]

Going much-less-dairy has been a big emotional issue for me, enough that it's come up in counseling. "Saying goodbye" is an interesting idea. What helps me to remember is, there's tons of stuff I just plain do not like that I *never* eat that I see people eat all the time, and there's stuff that I've known from childhood on makes me throw up that I avoid. Yes, avoiding really common stuff starting in adulthood is a total fucking pain in the neck but feeling better is the point and why we eat in the first place.

Do you know if any of LUSH's shampoo or contioner bars would be wheat free, or the conditioners they have that have that sort of mucilage stuff in them? ("Marilyn" is for blonde hair but some of their others pots of conditioner have a similar consistency.)

[rm.livejournal.com]

The communion thing is a problem, just not in a Catholic /Christian sense, and can problem easily be dealt with, but it is annoying because I liked the wheat/oat cakes.

I'm glad to hear you say about what you did and didn't do about diagnosis. I am going to go to a doctor about this once I have insurance, but I agree, in terms of not seeing what a biopsy would add to my diagnosis.

Did the change in diet effect your weight at all? I've lost some since this started, so putting on a bit isn't a problem, but it's important to me to be able to maintain a consistent weight for work reasons, and I'm wondering what if anything I should expect with my metabolism.

The ancestry thing I had found researching online, and is why i'm somewhat surprised -- I'm mostly Italian and Russian, and the part that isn't mostly isn't European at all.

The hair thing concerns me because my hair is evil and it involve letting the shampoo and condition sit on it for a good thirty minutes. I also sometimes do leave-in condition, whcih means I'm getting wheat all over my hands. And I can trace my getting sick with this to also being around the same time as the new shampoo with wheat in it, so I figure at least for recovering from the damage (because if I can't have bread, I want bacon again!) I need to get all this stuff the fuck away from me.

I am both interested and concerned about the mood thing. I can't have caffeine and have always relied on starches to keep my energy level up. This really throws a wrench into my habits. And while I'd love to be less crazy, if I become a shiny happy person because of all this, I dare say, i might be dissapointed.

I've been purchasing at the Whole Foods GF which as I've said before is a nightmare for someone with food texture issues. It all feels weird!

I suppose on the plus side I can eat at Chipotle again, as long as I get the rice bowl and not tortillas. I miss my Chipotle.

[rm.livejournal.com]

Unfortunately Lush shampoo and conditions don't do what they need to do to my hair. It's one of the many routes I've tried over the years, and it jsut doesn't happen.

[ladypeculiar.livejournal.com]

Somewhere in our house is a book called "Secrets of the Spas" and it has recipes for making your own conditioners-- though honestly, if you're going DIY mashing up an avocado is the best route there ever was.

[rm.livejournal.com]

Yes, but then I'll eat it, and that just seems like a disturbing cross purposes moment.

[rm.livejournal.com]

In food, tons of things. In shampoo, what Ive been bumping into is mainly "contains wheat!" which seems pretty clear.

[raaven.livejournal.com]

"Celiac disease is the most common genetic disease in Europe. In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease. It is rarely diagnosed in African, Chinese, and Japanese people.

An estimated 1 in 4,700 Americans have been diagnosed with celiac disease. Some researchers question how celiac disease could be so uncommon in the United States since it is hereditary and many Americans descend from European ethnic groups in whom the disease is common. A recent study in which random blood samples from the Red Cross were tested for celiac disease suggests that as many as 1 in every 250 Americans may have it. Celiac disease could be underdiagnosed in the United States for a number of reasons."

From here: http://www.keepkidshealthy.com/welcome/conditions/celiac_disease.html

In Italy, all children are typically screened for celiac by age 6. So, not so weird that you could have it, in fact. Also, recent studies are putting the figure for Americans at as much as 1 in 133.

[raaven.livejournal.com]

As far as booze, anything that is distilled is fine. So are wines. It's really only beer and other malt liquors that are an issue, and for celiac beer-lovers there are now three different companies making sorghum rather than barley-based beers.

[rm.livejournal.com]

My current hysteria on that front is over absinthe, which is made with grain alcohol, which I assume isn't safe.

[raaven.livejournal.com]

Not precisely a recipe, but this site has basic formulas for creating your own shampoos & conditioners.

Two years after my own diagnosis, I am still going back and forth about how big a deal it is or isn't. Depends on the day. :)

[raaven.livejournal.com]

I'm not familiar with how it's made, but if it's like most liquors, it's been distilled and gliaden (the actual culprit in celiac) doesn't survive the distilling process.

I've heard of people having reactions to various distilled booze, but since reading the science, I'm skeptical about it. I wonder if they may be mistaking the cause of their reactions. My theory is that they're having booze in restaraunts, with food, and that the food has been contaminated - which is really, REALLY common in food service places.

The best thing I've found for anything that I'm unsure about it to test it myself. My system is pretty darned sensitive still, and I usually know within about 20 minutes of consuming something if it's a problem. Bourbon, vodka (which is almost all, these days, distilled from grain rather than potatos), scotch & irish whiskeys...all fine, at least for me.

On the other hand, I have reactions *almost* every time I eat out, no matter how careful I am. Fries that themselves are gluten free can pick up gluten from the oil they're fried in, if it's used for breaded items as well. Stuff cooked on a griddle that also cooks pancakes and french toast can be a problem. A salad chef might handle croutons right before making your non-crouton salad. The contamination potential is truly endless.

Dining out has become a real issue for me, as you might be able to tell.

[rm.livejournal.com]

I'm really worried about the dining out thing because the thought of being restricted to gluten-free restaurants is horrifying. That is good news about teh absithe though. It should be safe.

[raaven.livejournal.com]

On another, similar note...when I was diagnosed, I went through the full spectrum of testing, including a DEXA scan (bone density). One of the big issues of celiac is that it causes you to not absorb a wide range of nutrients properly, and high on the list is calcium. My bone density was such that my doc recommended supplements, but not so bad that it needed the heavy-duty prescription sort. If you decide to start taking supplements (which you probably should - osteoporosis is NOT fun), be sure that the supplement contains vitamins A & D as well - they are necessary for optimum absorption of the calcium. I use GNC's "Calcium Plus 1000".

[raaven.livejournal.com]

I wish I could reassure you about the dining out, but my experiences with it have been very hit-or-miss.

But yeah, absinthe ought to be just fine. Yay!!!

[chite.livejournal.com]

Not a recipe site, but have you looked at ingredients for any of the LUSH shampoos? I know the one I use (Rehab) has no wheat. A few do (one has beer) but for the most part I have found them to be pretty allergen free.

[rm.livejournal.com]

I acutally had my bone density tested a couple of years ago because of a different matter and it was not only good, but better than they expected, so I'm not too worried, but I will definitely start taking suppliments. Certainly, I do feel the nutritional aspect of this explains why my eyes had been twitching (which also happens when I don't eat right) for about a month before this turned into something awful, and seems to be stopping now.

[rm.livejournal.com]

There are wheat-free LUSH shampoos, which unfortunately don't work on my hair.