Some hairsprays DO contain gluten. As do other styling products. I've been going to the same stylist for years...and he knows to not use any unapproved products around me! Bring your own if you have to!
What a great conversation. It's nice to have people to relate to! So many "atypical" issues here that are simply "just" Celiac. I feel like I'm always looking for more answers to fix my fatigue, aches, brain fog... I will continue to do so, but more than likely what I need is time-time to eat good, nutrious food. Time to rest. Time to understand my body and know that "more exercise to get in shape" isn't always the right answer! Some days I can only walk a few minutes at a time. Others more than an hour!
Last night I was teaching/directing my Tuesday night music group (adults)... There was a point in time (happens periodically!) when I just couldn't make my mouth say what my brain wanted it to! Fortunately, they've seen it before and we can generally just laugh about it. It's like oral ataxia...my tongue and lips just can't quite get their balance. (yes, I just made that up!) It's funny because most of them are at least twice my age, yet we have many of the same body-is-betraying-me type of experiences. In my case, however, I'm VERY hopeful that it is a temporary condition. What a painstakingly slow process recovery is for some of us!
And on that thought... Never ask the universe for patience. It just may give you the "opportunity" to develop it.
Posted by thleensd
on 07 September 2011 - 10:12 AM
Great question. I hope someone can find a scientific article with some solid facts, but I don't know if research has gone quite that far... at least the placebo controlled/double blind types of studies.
Based on what I've read, I have a couple of guesses. Note the word guesses. Sorry. (They aren't totally blind guesses, though!)
-Inflammation. We know that gluten causes inflammation of the gut. Having an auto-immune disease means that we react (and over-react?) to normally "safe" substances. This is an article on inflammation in general. I don't know the mechanism, but I wouldn't be surprised if the inflammation does not limit itself to the gut. http://www.huffingto...w_b_269717.html
-This might be more controversial, but intestinal permeability ("leaky gut") could play a role - substances cross over the gut barrier that are not supposed to, leading to multi-systemic issues. Traditional western medicine is starting to recognize and research intestinal permeability, and some studies indicate that inflammation leads to permeability. That pretty much "allows" the gluten dominos to start to fall and reach other body parts.
-This article: http://charlotteceli...ew_Cellular.pdf is a bit scientific, but it explores the neurologic connection in Celiac. What it comes down to is that there is a lot they don't know. It's not about joint/muscle pain per se, but more related to brain/nerves:
"While advances have been made in understanding the pathogenesis of the intestinal lesions in celiac disease, the patho- genesis of the neurologic manifestations has yet to be elucidated. Current data point to molecular mimicry and intermolecular help as two possible mechanisms that could explain how ingested gluten can result in damage to the neuraxis." In other words, they are starting to understand fully how the gut gets messed up, but they're trying to figure out why the rest of it happens.
I read an article about a family in Rexburg ID that would bring their own bread for their family. They had to get some buy in so the teenage boys that handle it knew about how easy cross contamination was. Turns out there were others in the ward that needed to be gluten-free and eventually they had a whole tray of gluten-free bread that went to those who needed it.
Keep talking to leadership. Your DD should in NO WAY compromise her diet. If nothing else, bring a bite of your own bread/cracker and just eat that.
Especially for those who have had a long recovery:
I've been strictly gluten-free for two years and five months. When I went gluten-free I went from mostly bed-ridden to sort of being able to function. For the next two years I got a little better, but still had debilitating fatigue. I had to stop working and have family members care for me. We all have been eating a very healthy diet (gluten-free house), and started to drink more fresh juice and veggie smoothies. Tried a few elimination diets and settled on corn-free as well. I stopped eating *most* processed foods, but still was cooking with Bob's Red Mill flours and a few other products like tinkyada pasta. I still wasn't improving. It was as it there was a ceiling on my getting better. I have been in physical therapy (since my body was pretty wrecked from the whole ordeal), but not able to make process since my fatigue was so persistent. I've looked into MANY of the healing diets so many here speak of, and....
...I found something that seems to be working for me! I have been completely grain-free (and pseudo-grain-free...ie buckwheat, etc) now for 44 days. I also go easy on beans and potatoes, though I still eat those at times. In this time my stamina has already increased dramatically. I've been able to cook, load and unload the car, concentrate to do errands and pay bills, play frisbee and even dance. Not all the time, but more often. I went on a hike yesterday long enough to get sunburned (duh! skin hasn't seen that much sun for a while). I still need to be careful with my activities since my muscles haven't caught up to my energy level and my back and hips are pretty messed up (read: painfully slips out of place) I will be increasing my physical therapy dramatically starting in about two weeks, and am hopeful that my muscles will actually build now! Fingers are crossed, wish me luck!
I just wanted to share my excitement and give some encouragement to those who are still trying to find their personal magic combination of what to eat and what to avoid. I've gotten a lot of inspiration and recipes from the raw diet people and the paleo (caveman) diet people.
+100 to shopping the perimeter of the store! A lot of gluten-free processed foods aren't that good for you anyway... so, to avoid the crying breakdown in the supermarket while trying to figure out what to buy (been there, done that! ;-) ) Fruits, veggies, meats are a great way to start. Rice and beans, too. Then work in other things as you find them.
Staples for me: San J Gluten Free Tamari (soy) sauce, brown cow yogurt (lots are gluten-free, but a lot of them have junk in them like corn starch - yuck), and quick-grab snacks like Lara Bars.
There's SO much more gluten-free food available now...try to resist the urge to try it all - there are some good posts here about "favorite snacks" etc if you search.
I have a little bag I grab whenever I'm leaving the house. It has nuts and dehydrated fruit and a prana bar in it. If I'll be out for a while, I also add a couple of pieces of fruit and maybe an ice pack plus yogurt.
I hear what you're saying, Korwyn, but I don't think that the diagnosis of a mood disorder is required to test my nutrients, iron, and thyroid. She could've easily written something that would've been more accurate like "anemia" or even "malnutrition". She's straightforward with me about the system sucking, so she shouldn't try to be sneaky and not tell me.
Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.
As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).
Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!
Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.
. . .The irony of all this? One $149. genetic test confirmed what I already knew.
There needs to be a better understanding of this disease. For starters, it is NOT an allergy (I cringe when people say that) and it can be devastating and someone doesn't even have to have the tell-tale gut/bowel issues. Silent celiac is frightening! Even after diagnosis, doctors (and others) say "oh just avoid gluten, you'll be fine"... they have NO CLUE what's involved in recovering full body and brain function! NO CLUE what body systems have taken a hit and what vitamin and mineral deficiencies and bone loss we have suffered.Even after DX, I had to go back and TELL my doctor what tests to run to find the folate deficiency and loss of bone density I had! I'll be in physical therapy for a year to regain lost muscle mass and strength and mobility.
For pete's sake...who's the med school grad here??? Again, if I had not READ so much, I still would be floundering around, in a wheelchair or a mental health ward.
But only a "gluten-savvy" doctor is going to recognize the symptoms and that will only happen if there is more emphasis on EDUCATING them, instead of coming up with new drugs or vaccines that will NOT solve the huge problem in this country--a nation of sick people who are mainly gluten intolerant.
Just my two cents! sorry, guys....I don't know where all that "rant" came from.... whew......
Preach it, girl! Seriously, this is so familiar to me. Gah.... (Curious how your physical therapy is going, or if you're still in it. I go just about every week.)
I'm fascinated by this thread in part because of how emotionally so many of us respond to the modern medicine quick fix. Don't get me wrong, if I have appendicitis or a broken leg, I'll be first in line at the doc's...but I've been burned by the influence of drug-pushing physicians. Those drugs made me worse more often than better. When I was at my worst right before I was diagnosed, my doc don't me the GI department "wouldn't even talk to me" unless I took Prilosec for two weeks. Since I wasn't assimilating nutrients properly at that time (read: starving), that "safe" drug pretty much made it impossible for food to break down. Fortunately, I only took it for a couple days.
There would have to be a LOT of explanation and testing before I would even BEGIN to consider a "vaccine" like this one.
While I'm sure that there are a lot of medical researchers out there that truly want to help, it's not the individuals that are the issue... it's the surrounding system and where the money comes from. Then docs are rushed through their patients each day and pushed to give them quick fix drugs, knowing very little about nutrition (unless they personally choose to research it).
It's not just you. It's been two years and two months for me. I've been very strict about my gluten-free, including non-food products... Also eliminated corn, soy, nearly everything artificial or overprocessed, sorghum, and experimented with eliminating quite a few other things.
That being said, I was pretty bad (hospital stay) by the time I was diagnosed. I've been to every western and eastern doc I can afford, and now I'm just trying to eat as purely as possible, and trying to balance rest with getting stronger. I'm putting my fingers in my ears and saying "LALALALALALAICAN'THEARYOU" to the word refractory.
I don't have much to offer, just know you're not alone. Keep your chin up, and keep searching for answers.