Gluten And Lactose - When You Should Try It?
Posted 04 May 2009 - 02:04 PM
Someone mentioned to me that beer/alcohol can increase the negative side effect of adderall - being dizzy. I'm going to call my pharmacist and ask if this is something that can continue throughout the day, or if this would just be when I have the beer.
However, I have been told repeatedly that gluten-free diets can help some narcoleptics, and that sometimes lactose intolerance can give side effects that seem related.
The issues I am dealing with
- sometimes feeling just plain queezy/ill for no reason at all
- sometimes feeling the need to vomit, but dry heaving (??) for no reason at all
- sometimes feeling slightly dizzy or having "swooping" sensations in the head
What are signs that you should try avoiding or cutting out these foods entirely? It would be a severe lifestyle change for me (I'm broke and can barely cook as it is), so I hesitate to "just try it" for no reason at all.
Posted 04 May 2009 - 08:57 PM
The most common symptoms of celiac disease include:
• Addison's disease
• Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, reflux)
• Headaches (including migraines)
• Mouth sores
• Weight loss/gain
• Inability to concentrate
• Amenorrhea/delayed menarche (menstrual cycles)
• Bone/joint/muscle pain
• Dental enamel hypoplasia
• Short stature
• Tingling numbness in the legs
Symptoms also include:
• Abnormal liver test
• Addison's disease
• Autoimmune hepatitis
• Chronic abdominal pain
• Chronic fatigue
• Crohn's disease
• Dermatitis herpetiformis (a "sister" of celiac disease)
• Down syndrome
• Family history of celiac disease
• Gall bladder disease
• Total IgA deficiency
• Insulin-dependent diabetes (type 1)
• Infertility/spontaneous abortions/low birth-weight babies
• Iron deficiency
• IBS (Irritable Bowel Syndrome)
• Multiple sclerosis
• Non Hodgkin's lymphoma
• Osteoporosis, osteopenia, osteomalacia
• Pancreatic disorders
• Pathologic fractures
• Peripheral neuropathy
• Primary biliary cirrhosis
• Recurrent stomatisits
• Rheumatoid arthritis
• Scherosing cholangitis
• Sjogren syndrome
• Systemic lupus
• Turner syndrome
• Ulcerative colitis
I got this list from here. It was the best list I could find. Before I went gluten free, I had constant nausea, would wake up vomiting nothing in the mornings from time to time, had digestive issues I thought were normal. I gained weight and couldn't lose it no matter what I did for exercise or diet. I had huge mood swings, depression, panic attacks in the middle of the night, and of course...severe C, seizures, and sleep attacks. I do have N as a stand-alone disorder, but it seems to have been caused by Celiac which runs in my family quite a bit. If I control the Celiac, I control the N (except some C when I laugh.)
There are several things you can do if you're concerned about gluten. Firstly you can get screened by your doctor for Celiac disease. This involves a blood test and, later, an intestinal biopsy if the results are positive. But, like everything else, these tests aren't 100% and they can miss it. So the 2nd thing you can do if you don't have a dr. is to just go gluten-free yourself. It is not any more expensive than regular eating because you can eat regular food. Meats and veggies are a-ok, as is rice, corn, and some other grains. The simplest way to do this is to eat plain meats and cooked veggies and avoid seasonings and condiments to start. Also cover your baking sheet with tin foil if you've ever used it for cookies, etc., since gluten tends to stick to cookware forever and come off in your food even if it's clean. You have to make sure if you eat chicken or turkey that it's not coated or injected with broth, because broth usually contains barley, which contains gluten. Here's a site that will help you understand what to avoid. (scroll down for the chart) Beware of spices, broths & soup bases, soy sauce, vinegars, cereal, etc. Many products like spices and vinegars won't declare gluten was used even though it may have been used as a binding agent in spices or may be found in vinegars made from grain. It's safe to stick with apple cider vinegar.
It seems complicated at first because there is a lot to memorize but if you go to Celiac.com they have a great forum with a lot of info (they even have a sleep section where you'll find a few PWN.) I also like Gluten Free and Beyond forum at http://www.gutenfreeandbeyond.org They are much nicer people and they like to read and share scientific articles. If you want more links and info on gluten intolerance and N, please visit my blog at http://glutenfreenoc.blogspot.com/ I'm currently exploring the link between Celiac genes and N genes and there's a bit of overlap.
Posted 04 May 2009 - 10:34 PM
My brother is going to try going gluten-free this summer. I'll let you all know if it helps him with his N.
Anyways I recommend trying it out. It's really not as hard as it sounds. Although for me I'm bad at paying attention to spices... I always forget. I need to work on that.
OH! btw... corn chex is now gluten free
Posted 05 May 2009 - 10:30 PM
Posted 05 May 2009 - 10:34 PM
LoL my roommate just told me about it 5 mins ago! She said the word at Starbucks today was that it's really good.
Posted 13 May 2009 - 12:13 PM
Nice to see a few familiar names around here.
Just thought I would let you know I have a new website up that covers all my current research on gluten and Narcolepsy.
I now believe Narcolepsy is an interaction between gluten antibodies and herpes infected neurons.
Please stop by and check it out, I have also put up a blog for comments and questions.
Apparently Mignot just published a paper that indicates a T-cell abberation, something I discuss in my hypotheses. I believe it results in incomplete latency of the herpes viruses and accelerates the antibody internalization process.
Greetings from my kitchen table,
Posted 13 May 2009 - 02:51 PM
Okay, and so I've gone gluten-free once again. I tried it a couple of summers ago and frankly I can't remember exactly how much better I may or may not have felt, as that summer was a particularly stressful one anyway and I hadn't yet been dx'd with N yet either....
and so...I thought i'd give it another go considering the definitive evidence that N is autoimmune and that so many people with N seem to either have celiac and/or a general intolerance to gluten.
You tell me if my logic makes sense:
N is autoimmune. I have that.
Antiphospholipid syndrome is autoimmune. I have that.
Raynaud's Phenomenon is autoimmune. I have that.
And so wouldn't it make perfect sense that I may have a gluten intolerance and/or celiac disease given that my body has an affinity for attacking itself? I don't have any GI problems per se, although I used to, (lactose intolerance/IBS), but both seem to have disappeared over the past 5-6 years; however it's hard to say whether those GI issues were b/c of some drugs I was on at the time (docs were using me as a lab rat 15 years ago and I was on all kinds of crap) or whether it was b/c it was at the beginning of my whole body breakdown issue, that is the onset flare; for the most part my major issues are the freakin EDS, exhaustion, fragmented sleep, mild cataplexy and mental muck that goes along with a sleep-deprived brain. Actually, now that I think of it, maybe I do still deal with IBS somewhat, as my status quo seems to be in a perpetual state of constipation, which I've had since I was a kid. At my worst, going once a week was a miracle. Is this too much information? lol I find it's much better when I'm taking acidopholis bifdus and eating regular meals. Anyway, my point: could I have gluten issues with the main GI issue being constipation?
And so I'm heading into week number two, so let me ask for some suggestions.
Cookies: i have covered. And they're quite good.
Granola bars: i have covered, although I had to get used to that taste, but they'll do.
Waffles: I have covered and top them with sliced organic strawberries and raspberries
organic fruits/veggies: i have covered.
gluten-free chex: i have covered but i haven't tried it yet.
Here's the thing: I like pizza. can anyone recommend a frozen pizza or any other frozen brand dinner/foods that they enjoy? eating gluten-free/organic is in fact more expensive and so I'd rather invest in foods that I know others would recommend as opposed to just buying a brand and hoping for the best. What about chips? I find that I'm craving salt like mad. Can I eat cashews?
One of my docs will every once in a while say: do you think you are allergic to gluten? And so I think I'll ask her on Monday if we should just get it over with and test for it, although I do understand that the tests aren't always accurate. seems that's the case with many things these days. But still, it wouldn't hurt to test, right?
This condition (N) can be so frustrating. I took my meds today and I'm still falling on my face with exhaustion; this after 12 hours of so called sleep last night, as I woke incessantly and had about a million different dreams; when I finally forced myself to get up (and believe me, it was forced) I felt as though I'd been through the war of watching a quadriple feature and needed the silence of real sleep; I really need my brain to quiet down and shut the *%&$ up once in a while, you know? If Joe Blow on the street took these stimulants he'd be bouncing off the walls with energy. It's so frustrating. No two days are ever the same, which makes my already tightly scheduled life all the more difficult to manage. The weekend was a wash, canceled plans everywhere; i just couldn't do it.
And one more thing: my naps are never true -turn the brain off and rest- naps per se. They are agitated, exhausted--I realize I'm napping (or trying to)-- kinds of periods. I never feel truly out; although this may be b/c I'm on Adderall and trying to nap; it's a catch-22: don't take the meds and you'll nap all right, in fact all day; take the meds and you still feel exhausted and need to nap but you're agitated and can't truly tune out for a short time. Does anyone else experience this? Very rarely does a nap leave me refreshed so to speak and if so, it's only for 1-2 hours. And may I say, this sucks. I'm sick of myself and dealing with several serious conditions; of trying to find the answer or the right combination to keep moving forward; of being the eternal optimist who says: it could always be worse. Today I'm saying it: this sucks.
Eh, I guess I'm whining a bit today and you all know I'm rarely a whiner. I'm having a rough time lately and I'm anxious that my new gig at the university is going to knock me on my ass even more so and make my life even more difficult than it already is to manage. LOGIC: if you're on your ass now jenji, what's gonna happen when you start in August? Thank you very much logic center.
Anyway, that's my vent. Any gluten-free food suggestions are greatly appreciated. Dinners. Chips. Salt. Oh, and pasta brand and sauce brands, please.
WAIT! One other thing I'll ask while I'm blathering on here, as opposed to opening the question up somewhere else: does anyone else experience cataplexy in their dreams? That is, you cannot even keep up in your dreams and find yourself collapsing in the dream and barely able to speak or breathe a word to anyone around you? I collapse in my dreams all the time, very much the way I used to at my worst.
Posted 13 May 2009 - 06:53 PM
Yes, constipation is as common a symptom as IBS and diarrhea.
Some packaged nuts have gluten, some don't. You'll have to google the brands and call manufacturers but you should be able to find something easily. See my list below for chips. Frito Lay is definitely our friend.
There are no gluten-free frozen pizzas, but there are crust mixes you can buy and some delivery places make gluten-free pizza. Of course, with delivery there's the chance of cross-contamination from flour dust but I've had pretty good luck with them. Plus they charge a small fortune for these little slices of heaven.
There are certain frozen dinners that are safe but I don't eat them so I don't know what they are. You can search at Celiac.com. They'll know.
I'm shocked your doc would suggest it and not order a test right there. shame on them! anyway, you have to have been eating gluten for at least 3 weeks before you do the test or you can get a false negative. Of course, you can get a false negative anyway...tests are never perfect. But it can't hurt unless you have a close-minded doctor that doesn't consider feeling better on a gluten-free diet as evidence you're gluten intolerant. There are a bunch of antibodies they're supposed to test for and some places only test for transglutaminase. I just took my son in for a blood test and they only test for one but there's like 5 they're supposed to screen. Oh well.
Don't give up! You'll make it!
Lays potato chips. Their website has a long list of ok brands.
Cool Ranch Doritos (NOT regular Doritos!! Those are bad!!)
M&M's and Dove chocolates
Tostitos (check the Frito Lay website for specific flavors)
Pasta: there are lots of rice pastas available. I know my local Fred Meyer sells them in the gluten-free section but you can ask around where you live. you might not have a Fred's.
Classico Spaghetti Sauce (check the website but most flavors are GF)
Heinz Tomato Ketchup (NOT Heinz 57 or Hunt's!!)
that's all I can think of at the moment....
Yep happens to me all the time, especially right before I wake up to a bad C day. I always fall flat on my face in the dreams, too. I lie there forever and can't talk and the dream goes on around me and I can't do anything. Sometimes I can't even breathe.
Posted 13 May 2009 - 11:33 PM
I found a gluten free frozen pizza at whole foods, and it was ok. I thought I couldn't live without pizza, but it turns out I can! I only bought it one time. If there is a whole foods near you I'd check for ideas there. I know it is expensive! The first time I went there I didn't even buy anything, but they have the gluten free stuff all together, so then I knew what to look for at my regular grocery store.
Sorry I don't have time to say more. Remind me in 2 weeks!
Posted 14 May 2009 - 10:40 AM
Heidi L - I've read your site and your history is strikingly similar to mine. Even down to the reproductive issues.. but in my case it was a luteal phase defect, not pcos... similar, but caused me to have countless miscarriages before they finally figured it out. I also have symptoms that go back to when I was very young... have vivid memories of sleep paralysis and hh's as far back as kindergarten.. remember being terrified but just grew to assume it happened to everyone (until a couple of years ago..lol). It seems just from listening to the folks around here that most were 'normal' in childhood, but developed problems later on. I've always been like this....
Anyone here have any clue how to go gluten free as a vegetarian.. or maybe have a helpful website they could share? I've gone so long without eating meat that the thought of eating it really churns my stomach. I do eat fish though, so that helps.
Posted 14 May 2009 - 10:56 AM
Sorry I don't have time to say more. Remind me in 2 weeks!
REALLY? I'm shopping at the wrong stores! I gotta get me some o' dat! lol
Posted 14 May 2009 - 11:02 AM
go to http://www.celiac.com/gluten-free/ and sign up for their forum. (you can search it even if you don't sign up) There are a few GF vegetarians there. You can eat fruits, veggies, rice, and other grains (you'll have to look them up...buckwheat, quinoa I think.) You can make your own bread...bread machines come with a Gluten Free setting now, I hear. It doesn't seem to me that it would be that difficult to eat this way, but I've never tried it. There's rice-based pasta too. I feel like the majority of the food I eat is vegetarian. The only meat I eat is the plain meat I cook for main meals.
Come to think of it, there's a database you can download that tells you what's gluten free AND vegetarian. http://www.clanthomp...fe_cel_veg.php3 http://www.clanthomp...oads_demos.php3
Posted 14 May 2009 - 11:08 AM
I even found cake. Good cake. Cake that the rest of my family will happily eat!!!
I don't know if Bob's Red Mill stuff is available where you guys are, but their stuff is good. They have pizza dough mix, if you'd be interested in making your own pizza.
If you like Indian food, instead of going out, the brand Patak's has gluten free flavours that are clearly labelled on the package.
And for cost, the bulk barn! The bulk barn near me has a good selection of rice pastas (marked gluten free) and alternative flours as well.
I also eat a lot of rice anyway because my boyfriend is Chinese, so rice is kind of a given, but it's cheap and plentiful. Not to mention easy.
For a cheap and easy lazy meal I use my $10 rice cooker. I put extra water in with the rice and toss in vegetables/tofu on top. It's cheating but the extra water steams the veggies. Then if I'm in the mood for more flavour I scoop out some sauce into a bowl, put it in the microwave for a bit when the rice cooker is done and when the sauce is warm throw in the veggie/rice combo. It is max. 5 minutes prep time and maybe 20 minutes for the rice cooker (ie nap time!). Plus, the rice cooker is superawesome because it turns itself off. So if I get into a daze (which happens a lot) it just turns off and I can microwave it when I'm ready.