sallyterpsichore
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Just a FYI, Align contains Milk protein. I use Pearls...they don't contain milk products or other additives.
Also, a big FYI on the Benefiber - directly from their site:
What type of fiber is Benefiber?
Benefiber contains wheat dextrin, a natural soluble fiber.
If these things aren't helping, also google anti-candida diet.
Per Benefiber: it also says "gluten free" on their label and both my doctor and nutrionist (of the famed "Celiac Center" in Boston) recommended it. I had the same exact concern. Sigh. Now I just don't even know.
To top it off, my stomach just expanded to about twice its girth and I've got super bad pain (possibly heading to a hospital soon-pain) from eating...plain white rice. WTF? I hate this...
rant ended.
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Sometimes probiotics can cause gas and/or bloating especially while your body is getting used to them. By chance, did the gas problems coincide with when you started the Align?
Just a thought.
A good thought, too, but unfortunately no. I started Align (as well as regular daily intake of Benefiber) about a year ago, per doctor's orders. And this gas stuff has been going on for maybe 5 months.
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What's happening is that the food you eat is putrifying in your gut. This is caused by bacteria which are digesting the protein in your food. There are various bacteria which do this and indicates that your intestinal bacteria are unbalanced.
I'm confused. I'm taking probiotics daily (Align brand as recommended by my gastroenterologist and nutritionist). Aren't those "good" bacteria meant to balance out the bad that are potentially overrunning in my gut?
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Also, be sure to take a QUALITY probiotic and enzyme with every meal until this starts clearing up. You won't believe how much this will help.
I've been in your shoes before...it's terribly embarrassing and uncomfortable, I know.
Also, I'm a big advocate for purchasing good, quality multi-vitamins.
Oh, and give up Soy.
I cut some of your comments just to clear up any scrolling frustrations people have, but I really appreciate your detailed and thoughtful response. The dairy I currently consume is primarily cheese (cottage and typical cheese) and some occasional Lactaid with my cereal (maybe once a week). If this is a casein issue, I suppose stopping the consumption of those is worth trying again (I LOVE cheese).
As for soy, I do like soy sauce in a stir fry (a couple of times a month) and have discovered that soy lecithan is in tons of things that I consume on an occasional basis(though I mostly make sauces, dressings, etc from scratch).
Several years ago, I cut out dairy and soy and continued to have all of these same problems, so I'm hesitant to cut out the foods I love if I've never experienced the results others have enjoyed.
Still waiting on the fax from the doctor who did my food allergy panel last year to refresh my memory on what I was tested for...
Thank you all for your kind suggestions, advice, and commiserating!
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Well geez, Sally, with my stomach today and my D and your gas, together we could clear the oil spill outta the ocean, it would just melt away and everything would be back to normal. I don't know WHAT causes that smell, exactly as you described. And I was at work! I know everyone musta been talking about old stink-o me.
I thought maybe it's the new B complex I'm taking - ? are you taking those?
Nope, not taking any B vitamins, other than whatever's in my multi...I can tell you, my dating life has pretty much drowned in the stink.
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What about soy? Do you eat a fair amount of that--I get breakouts and some gassiness from soy. I even found that I need to stop using topical products that have it--at least things that I use every day.
I do eat soy, but not in vast amounts and not daily. Oddly, I was going to do a veggie stirfry for dinner tonight, which would normally include soy. Perhaps I should skip it?
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A quick introduction and some background: I was diagnosed with celiac disease about 3 1/2 years ago and have (very slowly) improved in that time. My antibodies are back into the normal range (well, 25, which is significantly better than when I started and was somewhere >120!). I'm dealing now with several issues and am wondering if they're related.
The first: I have horrible chronic (every day, and about every 15-20 minutes are so) sulphur-smelling flatulence that is hot and hideously smelly. I also have some painful stomach cramps and diarrhea that happen every morning, as well as most evenings. I'm not incontinent, but I do need to get to a bathroom within a minute or so of getting the cramps.
I'm completely staying away from gluten, obviously, but back on dairy (for about 2 1/2 years now) and not avoiding any other allergens. I was tested for fructose intolerance, lactose intolerance, and all of the common food allergens and they all came back negative.
Other recent issues that I'm wondering about their relation to celiac: I recently got "adult acne" on my face out of nowhere (my doc has prescribed it as such, but the treatment worsened it significantly and after stopping the use of the topical meds, my skin is beginning to improve a little). Also, I have some major joint pain, but am seeing an orthopedic surgeon in a couple weeks to do some xrays and tests as I am a regular workout-a-holic. I also get these very sharp shooting pains in my lower back that feel two-pronged...pretty much where the indents in the lower back are located. They're very painful, but pass quickly.
Mostly, the sulphur gas is the main issue here, but if anyone has any ideas about the other issues, please do let me know!
I appreciate all your help. I'm not able to get in to see my gastroenterologist until the end of the month.
~Sally
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Hi there,
I'm really wanting to make a stash of breakfast burritos that I can freeze and then keep in the freezer and nuke when I'm on the go at work. Has anyone tried freezing any of the gluten-free wraps? The ones I use most frequently are the Trader Joe's brown rice wraps...
Here's the breakfast burrito "recipe" I was inspired by, but it's pretty standard: Open Original Shared Link
Thanks in advance for your help!
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Thanks for the responses to my pity party about kissing/dating as a celiac.
Looks like I need to move the man-hunt to new locales...who knew bars weren't the greatest places to begin relationships! 
Hahaha, ah well, such is life.Sorry to the woman who had a selfish (apologies if this is harsh) husband who left her over something as silly as bread. I guess finding that out from the get-go might be nice after all, eh?
Thanks again,
Sally
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My doctor as kind of a last resort option has put me on Amitriptyline to treat my "IBS" symptoms. It's an antidepressant, but on the lower doses, it basically numbs your guy into acting normal (that's my understanding). People taking it to treat depression take somewhere between 150-250mg a day and I'm on 25mg a day. The side effects so far are turning me into a zombie, but that did improve after the first several days. I didn't notice any improvements, but...
I had to go in to get tested for every allergy a person could have (food and environmental) to determine if I have some sort of allergy that's complicating matters. To have these tests, I had to go off of the Amitriptyline for 3 days and when I did that, things got much worse. Apparently, the drugs were helping after all! The allergy tests all turned up negative, as expected...except for dust mites, which is clearly not the issue here.
I'm now back on the Amitriptyline and am letting it build back into my system and see the effects of that.
By the way, my current symptoms are not gluten-related as we did an endoscopy and there's no visual inflammation and all of the biopsies came back normal (10 biopsies taken in different parts of the intestines). I also have some blood work pending...IGG and IGA numbers, I believe?
Any of you have any experience with this drug?
~Sally
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Acchh!! So now I am less inclined to just casually date someone even if its someone I know from the past before I knew I needed to be off all trace gluten. Whole new habits. Its kind of freaky. I can't be as spontaneous. I often forget I have this problem of being so different, but dating brings it out.
Bea
Yes, dating is now much more difficult. Granted, I'm recently out of college and dating in college is "easier" than anywhere else, most likely, but still...the gluten issue.
I don't mean to hijack the thread here, but...I'm a music reviewer and am often at bars and clubs where people primarily drink cheap beer, so no romance for me. And the guys that I've mentioned the gluten issue to (right off the bat when they ask why I'm drinking cider, etc.) literally walk away mid-conversation. I know it's a great way to "weed out the losers" but they seem to be the only ones left and girl needs her romance, know what I'm sayin?
I actually find the dating issues more difficult than the diet issues at this point (3 years of being gluten-free and cooking at home).
*grumble*
Sally
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My question is -- why do so many dog foods say "gluten free" but then contain barley???! The last one I saw said "gluten free" on the bag and it contained wheat starch. Why can they label the foods that way? I thought about calling one of the companies to ask. My cat's new food, Blue Buffalo is also guilty of this. Just wondering if anyone else had noticed this labeling matter.
Are you sure they're not just labeled "Grain Free"? They can then have malt flavorings. Most pet foods do. I've found a couple of gluten-free cat foods around me, but they cost a fortune. I live in a very expensive city as is, and on top of having an entry level job and paying for my own gluten-free foods, I really will be pushing my delicate budget by spending $30 on a 5lb bag of cat food. I'm going to bring it up with my doctors this month and see what they think. I'm definitely still sick...
Glad you brought the issue up here!
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I live in Mass on the south shore and am looking to talk to new people who also have a wheat allergy. I have a few relatives with it as it is hereditary in my family and have had it long enought that my friends are familiar but still don't really understand. My other family members with a wheat allergy choose not to follow the diet as strongly as I.
I work in Boston and live down on the South Shore near Cape Cod.
There's a Boston/Brookline Celiac group on meetup.com. If you go to the main site and search for it, it should come up. I've only been to one meetup, but it was great. Really nice people and they know where to get the good food in the area! I live in Brookline and work in JP.
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Assuming your insurance does cover the procedure, I would do it. I've had it done twice and it's not really a big deal. My blood test returned back high results (ttg greater than 120--we don't know how high) and I had to have an endoscopy done.
They can then tell what to what extent your guts are damaged
and also have something to compare future endoscopies to. I think you're supposed to get them done periodically, but that may just be me as I continue to struggle with symptoms two years later. What are your reasons for not wanting to have the procedure? Or is it just that you were unsure what your doctor meant by his response?
Best,
Sally
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I just saw this when I was searching for what warm, tingly muscles could possibly be and came upon this. I've been gluten-free for nearly two years now and this has been happening to me lately, too. I don't know if it's gluten-related or not, as I've also been lifting weights and doing a lot of heavy cardio for a couple of months and it could just be some kind of muscular reaction to that.
I have the muscle thing going on now and some major bloating, which makes me think I was somehow glutened (NO idea how unless my library book had gluten on it...ridiculous). Anyway, thanks for asking about this...I may bring it up with my doctors next month. I'll post if they shed any light on this one.
Good luck!
~Sally
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Hi Garth!
I sympathize! It took me a little while to nail down that corn really messes with me, too. It seems that I can tolerate rice - but even with that, I don't eat it every day. AFter finding that corn was a problem, I grew a little suspicious of all the grains.
Here's what I suggest...fulfill your carb cravings with some nice baking potatoes. You can poke fork holes and microwave one in 6-7 minutes (or until it gives under pressure). Or, if you're patient enough, just toss a couple in the oven and bake for an hour and a half. You don't have to preheat the oven to start them....just poke with a fork, toss them in and go about your business. Just set a timer so you don't return to a charry mess!
If you decide to elimiate dairy, too (I did for a while and might again), then you can always use mild olive oil, salt, pepper and perhaps a bit of gluten-free bacon to season your potatoes.
Try at least a couple of weeks off corn...then if you challenge it by tryinng corn, you'll have a cleaner reaction (or not).
There are a lot of other gluten-free carb options - but my sense was that you don't do a lot of cooking for yourself and were looking for simple ideas.
Oh - and whenever I am starting to feel a little sick...then I back up and only eat things I can wash beforehand...including meats. That quickly eliminates most of the processed foods that are more likely to have questionable ingredients. If you do a couple of days of "pure" eating, you can usually reintroduce the snacky foods and figure out what's bothering you.
Good luck! And don't use any toaster that's been used by your gluten-eating family!
Love them, but don't eat after them....I'm stealing the advice you gave to Garth for myself! Good stuff here, thanks.
~Sally
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Hey Garth,
Why don't you try the specific carb diet and tell me if it works!
Grains are so....cheap! I have many of the same symptoms as you and have been gluten-free for 1 year & 9 months. There has been improvement, but it's hard to see when you're still struggling with symptoms. I'm now (for a few days) off dairy and my daily coffee, so we'll see if that works. Elimination diets are a pain. So much time and trial to figure out whether or not you can eat "normal foods"...ah, well, that's what makes us special.
Sorry, no specific advice, just wanted to commiserate.
~Sally
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Have you tried eliminating the possible sources of traces of gluten that were mentioned earlier in the thread? It might be a long shot, but those bouts of gas do sound like a possible glutening to me, and until you try, you won't know if for example your cat is the source.
The thing with shampoos and lotions and so on, btw, isn't absorption through membranes but simply that it's easy for them to end up in your nose or mouth (directly, while shampooing, or indirectly, first on your hands and then to your mouth). Some people don't have problems with this, others do, so it's a personal choice. But I don't think it needs to be extremely difficult or expensive - to start with you just need to look out for wheat protein in shampoos, or wheat germ oil, sometimes barley or oats in products.
Something else - could it be instead that you react mildly to something else, like dairy? Dairy is well known for causing gas after all. Or for example I get very gassy from legumes.
I hope you find a solution eventually.
Pauliina
Well, I switched the cat over to gluten free food (I had to special order it from the fancy pet store--though I educated the owner, so that was good) and have stopped using my lotions. I'm clearly not a very patient girl, am I?
The thing that's weird is that it doesn't matter WHAT I eat, but come 2:30 or 3ish in the weekday afternoons (about half an hour after my lunch) I'm dealing with skunky gas and nausea. For about a week, then...nothing.
I've also recently cut out most dairy (with the exception of Stonyfield Farms yogurt) and stopped drinking coffee (thinking it might be an unnecessary irritant) to see if that's the case. But it's not as if I eat dairy and then feel awful. It seems to be ANY kind of food. I've done elimination diets before, but I guess it's worth another shot. I'll have a giant notepad for the doc and nutritionist next month!
Thanks for your advice (and patience!)...I just get so frustrated and whiny and I'm sure my coworkers, friends, and family don't want to hear it anymore. Hence, you lovely people do!
~Sally
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Okay, the latest updates are that I have finished my round of antibiotics and have been taking a daily probiotic (Align) for about two weeks.
Nothing has changed. I'm currently on day 3 of a terrible bout of intestinal gas...the very strong sulphur-smelling gas, and it's making me nauseous, exhausted, and embarrassed at work. This is just like it has been on numerous occasions in the past 2 years. About once a month (and, no, it's not menstruation time), I get really really bad daily bouts of this gas. It's much worse in the late afternoon to my bedtime. The daily gas goes on for about a week or a week and a half and then basically goes away and I feel quite a bit better. Then it comes back.
I've now taken two different rounds of antibiotics because the docs thought maybe it was bacterial overgrowth, but they haven't done anything. And I've been on probiotics, to no effect. I eat a lot of fiber and actually take Benefiber daily (the doc suggested I take it, even though there are minute amounts of gluten in it).
Anyone have any ideas? I'm kinda at the end of my rope with this stupid stomach I got!
Also, depression is a factor as of late.
Thanks,
Sally
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You need to find a gluten free food for your cat. Your cat eats then he washes himself. That deposits gluten residue on his coat. You then pet him and rub your eyes or put something in your mouth and you have been glutened.
The idea that we can not be glutened by things like shampoo and lotions etc is so false. You may not absorb gluten through intact skin but gluten is absorbed by mucous membranes and it also sticks to the skin. If shampoos gets in your eyes or your nose the antibody reaction will be triggered. If you are using a gluten lotion on your hands and then eat a something using those bare hands you will be glutened.
Both of these areas are issues as is the med you are taking. Did you check with the maker to be sure it is gluten-free? Your doctor would not know and almost all pharms will have to look them up. Generics are the biggest risk and need to be checked with each refill.
I have not been able to find a gluten free cat food (dry food) in my area. Any tips?
And I'm so confused about this shampoo, lotions, etc. thing. My nutritionist (who is a Celiac herself--diagnosed 15 years ago) and my celiac specialist doctor both said not to worry about absorbing gluten through skin and mucous membranes. The lotion makes sense and I've wondered about that myself. Is there somewhere with FACTS? I just seem to keep going around and around in circles because it seems everyone has their own information sources and hypotheses.
Frankly, I don't think I can afford to buy gluten-free cat food (if I can in fact special order it or something from a store around me), and all gluten-free body products. It's hard enough with the food. I'm 24, living in a city, and working for a non-profit company.
I guess I'll check out my local Whole Foods tonite and see what I can find in terms of gluten-free hygiene products, but I'm going to have to see a remarkable improvement for it to be worth it, financially. Sigh.
Thank you for the information; I don't mean to sound like I don't appreciate it. I just get so much conflicting info from reliable sources.
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Thank you both for responding. I'm am neurotically-vigilant about cross-contamination. I don't share a kitchen, so that cuts out quite a lot of worry, but nonetheless, it's a concern. I very rarely eat out (even if it's from a strict gluten-free menu) because I've had trouble in the past with, presumably, CC. I've also gotten sick when staying with my parents even though we were extremely careful.
I work in an office and eat in my own office because I'm paranoid about CC. I ride public trans, so I suppose that could be it, though I wash my hands afterwards whenever I can get to a sink.
I did transfer my cat's food to a pourable canister so that I don't have to dunk my hand into a gluten-filled bag and I still wash my hands diligently after touching his food.
I've heard from nutritionists, doctors, and experts that we cannot be glutened from things like shampoo or anything getting into our pores. I am careful with toothpaste, lipstick/balms, etc., but not really any of my other personal hygiene products. Anyone think this may be the problem?
I apologize for the length of this post, I'm just frustrated and (currently) really depressed about the whole situation. Of course, if I were to go back in time to a year and a half ago, I would see my obvious improvement, but from my impatient 24-year-old mind, I feel like I'm really missing out on my "golden years" here.
Note: I see my doctor and my nutritionist in August and will present both of them with my food + symptom journal to see if they can shed any light on this.
Thanks again!
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I've done travel backpacking and I'm just getting started wilderness backpacking. (Conditioning to climb Mt. Kilamanjaro next year!) For travel, I found that bringing my own hot cereal was about the best thing for me. Even the saddest breakfast buffet at a motel will have some hot water and the cereal can be so comforting. Hostels with kitchens are awesome for the food freedom they provide. And I packed a lot of the same snacks I bring hiking, too. Dried fruit and nuts. Lara bars. Instant hot cereal.
The UK, Edinburgh especially, is awesome for gluten-free eaters. There's even a gluten-free pizza place there. And there's a website where you can print out little cards in different languages that explain the gluten-free thing to waiters. They really saved me in Poland and Austria. I think it's celiactravel.com
A note on hostels: If you don't want to be dragging your huge backpack around all day, try to find one with locking doors or lockers. Then you can drop off your big pack and use a smaller one while you're out for the day.
You read my mind! I have a couple of friends currently living in Edinburgh and it's at the top of my list (cheap places to stay: i.e. free couches/futons). I was a bit worried about food, but no more! I heard that Ireland is easy for travel, too, from my local bartenders from Galway area.
What hot cereal can we eat? Is it the Bob's Red Mill stuff that I see in the stores all the time. Mighty Tasty or something?
What I'm gathering from all your responses is that I need to stop worrying about it, plan ahead and bring food in case I can't find anything, and just get my butt moving!
Thanks again, everyone, for your informative responses and perhaps I'll see you on the trails!
~Sally
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Hi everyone,
I was diagnosed with Celiac a little over a year and a half ago and then had a TTG of ">120" which was rather unspecific. After thinking I had cut out all gluten, my antibody count is still 40. I'm clearly being glutened somehow. I'm wondering if a 40 TTG is still high? I know "normal" is less than 19, but there doesn't seem to be any range online. I'm still really suffering with symptoms and was diagnosed with IBS in addition to the Celiac, but I'm kind of convinced that that's just a placating diagnosis as IBS just sort of sums up all of my symptoms, but offers no solution.
Any ideas? I'm currently on Xifaxan to kill of any possible bacterial overgrowth in my intestine. And apparently also to diminish internal hemerrhoids that I didn't know I had.
Thanks in advance for your help,
Sally
gluten-free Pasta For Cold Pasta Salads?
in Gluten-Free Recipes & Cooking Tips
Posted
Hi everyone,
I'm looking for a gluten-free pasta that works for cold pasta salads. Tinkyada hardens up after being refrigerated (obviously, because it's essentially rice). The salad I'm most keen on making has mayo so there's no possibility of heating it up slightly to soften the pasta the next day. Has anyone tried corn pastas for cold salads?
Thanks in advance for your help, fellow celiac chefs!
~Sally