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Dealing With Getting Glutened?


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#1 upsilamba

 
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Posted 06 November 2013 - 07:57 AM

Hey everyone,

 

So I was diagnosed with celiac back in June, been doing my best to avoid gluten like the plague since then, but I still seem to get glutened about once every few weeks. Unfortunately my reactions are pretty delayed-  i don't feel it for a day or two - so it's really hard to pin down the causes. Especially the last two times, I honestly have no clue - one was after a visit to my boyfriend's family where I made my own food but in their kitchen - I was being really cautious about what I used, but I may have just been unlucky. And then just two weeks after that, I got glutened again, this time no idea at all what it was. I think maybe an Amy's meal I had for lunch? I do eat those pretty frequently when I don't have time to cook/pack lunch in the morning, but I've read other people have had problems with them.

 

I'm going to try eliminating the Amy's meals, but this just seems to keep happening to me, even when only eating foods labeled as gluten free, and only eating (rarely) at restaurants that are either dedicated free or are rated by a lot of people as safe on find me gluten free, so I feel like unless I literally eat nothing but a few very plain foods and completely stop eating at any restaurants or other people's houses, it's kind of inevitable that this will keep happening.

 

The part I'm really struggling with is that my symptoms from gluten are pretty bad, and last usually 3-4 weeks - so basically as soon as I've started to feel actually better, I get glutened again. This time I got glutened 2 weeks apart, so I'm really at a low point now, haha. The first couple of days are the worst, I seem to get completely depressed/anxious/crying for no reason, and just totally unable to think or cope with the most minor stuff (which isn't like me usually at all) - and generally some really unpleasant gastro stuff as well. Then I have another few days where the emotional stuff calms down, but I just feel exhausted and still struggle to think/focus on anything (plus weird neuro stuff, like blurred vision and losing my coordination in my hands - I broke two dishes in a day, once, in this phase). And then the part that lingers is the gastro stuff comes back again, and I'll just be in pain/really uncomfortable/running to the bathroom a few times a day for 2-3 weeks until my system finally calms down.

 

This is already longer than I meant to write, but I guess what I want to ask is how do you all cope with it in terms of the rest of your lives when you get so sick? I started a new (really demanding!) job right before I got diagnosed, and I'm trying not to take too many sick days after all the time I had to take for testing etc, but sometimes I just can't make it in to work, or I drag myself in and then barely get anything done all day. My manager has been pretty understanding so far, but I haven't explained to everyone I work with how much this has been affecting me - it feels like such a lame excuse for falling behind on stuff...and my boyfriend has been wonderful and very supportive, but I feel bad for just lying on the couch feeling sick so many nights when i come home...

 

I guess any suggestions/wisdom you all have on how to keep up with the rest of your life when you get glutened, or reassurances that I'll get better at avoiding glutenings as time goes on, or suggestions for meds/remedies to help deal with symptoms in the short term would be wonderful!!

 

 


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#2 NoGlutenCooties

 
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Posted 06 November 2013 - 08:15 AM

it feels like such a lame excuse

 

I'm new at this, having been diagnosed just over a month ago, so I'll defer to the experts.  But I just had to comment on your "lame excuse" comment.  Being sick as a dog is not a lame excuse.  If you had cancer and was sick from kemo would you think it was a lame excuse?  If you traveled overseas and got some third-world nasty bug that almost killed you would you think it was a lame excuse?  Having your body completely betray you while it goes through its contortions of healing is not a lame excuse.  To hell with anyone who tries to say it is. 


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#3 bartfull

 
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Posted 06 November 2013 - 12:02 PM

Whole foods. Only eat things you have prepared yourself and in your own kitchen. Eventually you will be able to add new things, but for now, keep it simple. Even though you've been at this since June, if you keep getting glutened, you're not healing. Be really strict for another six months or so, then SLOWLY start adding some gluten-free processed foods if you feel that you need them. Against the Grain, Udi's, and any Kraft products that don't list wheat, rye, or barley in their ingredients are safe.

 

Right now, because you haven't healed, you could easily get sick from eating non-gluten foods. When our guts are all torn up, just about anything can set us off. That's why I say, eat whole foods only for a while. Yeah, it'll be boring, but you can do it. Make big batches and put individual servings in the freezer so you can just microwave your lunch at work. Bring your own bowl and utensils, and make sure you cover it while microwaving it so you don't risk getting CC'd by something a co-worker mic'ed earlier.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Pegleg84

 
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Posted 06 November 2013 - 12:02 PM

Ditto. If you're sick, you're sick. That is not a lame excuse. I end up taking a day off from glutenings on occasion, and my reactions really aren't that horrible (not compared to what you're describing), so don't feel bad. If your boss understands the situation, then that should be enough.

Unfortunately, it seems that the severity of your reactions are reason enough that you need to be super super strict, eat food only made in your own kitchen, make sure everything is indeed 100% cc free, etc. It's a pain in the neck, but if it means not being sick for weeks, it's worth it. Also, if you've had glutenings piling up on each other, your body really needs a long period of time to heal up. It sounds like you've been ccd by things in other people's homes, restaurants, processed foods, not your own cooking.

As for getting through it: take it easy, eat only guaranteed safe whole foods that are easy on your stomach, take probiotics, digestive enzymes, drink lots of water, etc. There's nothing much you can do but wait it out. When it comes to the emotional roller coaster, remind yourself that it's just hormones going nuts, not you. (anxiety is also one my symptoms. I hate it worse than gut stuff). Work when you can, don't when you can't.

I'm sure others will have more advice.

 

Oh, and welcome to the Forum! I hope we can all be of service.

Speedy healing

 

(sorry for repeating a few things Bartfull said. We were typing away at the same time)


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#5 bartfull

 
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Posted 06 November 2013 - 12:46 PM

"(sorry for repeating a few things Bartfull said. We were typing away at the same time)"

 

That only goes to show that great minds (and experienced celiacs) think alike. :D


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#6 upsilamba

 
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Posted 07 November 2013 - 10:41 AM

Thanks so much for the advice! I'm working from home today for the second day in a row (taking a little break to pop onto the forums now : ) ). I think you're all right that I do just need to get completely strict about what I eat for a long time to let my body get itself together - I've just been having a hard time bringing myself around to face that. Not so much because of the food limitations themselves - I actually really like cooking and plenty of what I like to cook is gluten free anyway, especially once I found some gluten free soy sauce etc! (although the being exhausted and stressed out so much of the time part has not been good for my cooking consistently, which is why the cans of Amys soup etc seemed like such a blessing...except that they might be poisoning me, whoops!).

 

It's more the impact that only eating my own food has on the rest of my life - I live in NYC and I'm in my 20s, and up to this diagnosis my boyfriend and I have both really loved wandering the city pretty spontaneously, going out and trying new activities etc, which logistically goes along with trying new restaurants if you're out and about for more than a couple of hours (it's hard to go do something after work without having any dinner in there, or spend a whole weekend day traipsing around without stopping in for some food!). Not to mention social/work times that happen out at restaurants...I guess I just need to get really resourceful about packing stuff up for myself that I can carry around all the time and will work for a meal with no heating etc? Do you guys think it's too risky to keep going to the few restaurants/bakeries etc where I've eaten safely in the past (all specialized partly/completely gluten-free places), or do I need to just suck it up for a while and just sit and watch my boyfriend/friends/coworkers eat when restaurant times happen, and find some time to eat some of my own food beforehand?

 

I think I'll definitely take more precautions when traveling and staying at other people's houses - I'm thinking I could bring some silica mats to cut/prepare on, and then use foil for cooking...I'll be with non-gluten-free family for Thanksgiving in a few weeks, so hopefully I'll figure out a good game plan for things I can pack/prepare safely while I'm there.

 

Thanks for calling me out on the lame excuse thing, it's good to be reminded that I'm not ridiculous but actually sick, haha : ) I was pretty like...nebulously sick so much of the time, I guess is the way to put it, for years before I got diagnosed, and I'd have so many times where I felt ridiculous for being tired or unable to focus or just not up for doing much of anything for no apparent reason. Finding out it was celiac all along was such a relief, but I have some bad reactions to break of feeling like I'm not justified when I feel sick like this!! I think my real fear in terms of my job, though, is that if I can't get this under control within the next couple of months, I just don't see how I can continue to stay there. It's a very everyone gives 110% all the time, long hours and challenging work type of a place, and if I feel like most of the time I'm just not physically equipped to keep up with that, then I just shouldn't be there (both because I'll be too stressed falling behind all the time, and because I won't be able to contribute what everyone else needs from me). Even though my manager's been really nice about this so far, I've been downplaying how sick I've really been because I just don't want to open up that conversation (and because any explanation of what I'm dealing with starts to get gross and graphic pretty quickly, haha, and I feel like no one should have to know why I'm spending half my time in the office locked in the bathroom, lol).

 

I guess here's hoping getting really seriously strict works, and doesn't turn me into a shut-in, and I don't have to go down the road of trying to find another job because of this!! I am super, super grateful to be diagnosed, and those windows I have when I'm not glutened feel so amazing, so I know it will be worth it to get to feeling that way all the time - I was just really hoping it would be less of a struggle to get there! I guess in the mean time, patience and lots of brown rice for me... : )


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#7 Pegleg84

 
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Posted 07 November 2013 - 11:01 AM

As I said, it's tough but it's worth it. I live in Toronto, and yeah, there's so much good food out there that I should be able to eat. gluten-free awareness is better, etc. However, any risk is probably too much for you right now, so the best idea is to cook at home for as long as you can.

After I got horrible sick last christmas, I stared the facts in the face and forced myself to do a real purge, No outside meals for over a month. Once I got everything back on track, then I let myself eat out every couple weeks or so at somewhere I knew would be safe. I've had to reorganize my routine, making sure I ALWAYS have something to take to work for lunch, either eat before hand or take a snack if going out with friends, etc. The only exceptions are vacation, and even then I do my research ahead of time. That's not to say I haven't gotten burned (for me gluten-free is easy, it's soy/dairy that get me) but I allow enough time in between outside meals to heal if anything did happen.

Yep, it's sucks. and it's overwhelming to think you'll have to do this for the rest of your life, but compared with feeling sick/achy/anxious/tired/crappy half the time, it's worth it.

Also, it means that if you only go out once or twice a month, you can splurge on something great!

Try to get through a month at least of home cooking only. Feeling better will be the motivation to keep it up.

 

Good luck!


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#8 upsilamba

 
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Posted 10 November 2013 - 11:01 AM

Thanks for the encouragement! I'm definitely on board with anything that might help get my body calmed down, at this point, so I'm all in for home cooking everything for a month or so at least, and I'll see how it goes. How far did you go, though, in terms of cutting out any "prepared" foods - would you do basic things that are sort of semi prepared, like gluten-free pasta? peanut butter? yogurt? plain canned beans or canned dice tomatoes etc? 

 

I'm planning out cooking a bunch of food for the week today, and I'm trying to figure out where to draw that line for myself. I'm curious what you and others who have tried the no-outside-foods route have done - right now I feel like I'm just making it up as I go along... : )


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#9 bartfull

 
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Posted 10 November 2013 - 11:23 AM

Well, I have other food intolerances besides gluten, so my diet is EXTREMELY limited. The only "processed" foods I eat are planter's cashews, rice (I guess you could call that processed), and Blue Bunny all natural vanilla ice cream. Other than that it's meat, sweet potatoes, broccoli and cauliflower, and eggs on the weekends. I can eat white cheddar cheese, but it's hard to get where I live so I only get it when someone makes a trip to "the city" and picks some up for me. I can eat bananas, but I have given up on them because the bananas here usually rot before they get ripe. I couldn't eat any of the gluten-free breads for a while because of my severe corn intolerance, but Canyon Bakehouse 7-grain doesn't have corn in it anymore, so I can eat that with butter.

 

If you have been eating things like the pasta, peanut butter, etc. without trouble, I don't think they would be a problem. What I do is make things in big batches and then freeze individual servings. I don't much like to cook so it's easier for me that way. I just grab a bag out of the freezer and head off to work. I microwave my lunch and then get on with my day.


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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#10 NoGlutenCooties

 
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Posted 10 November 2013 - 04:24 PM

I've been gluten-free for about 5 weeks.  The only prepared food I eat is yogurt, salad dressing, Luna protein bars, and the occasional small bowl of rice Chex.  I keep it to meat, vegetables, and an apple every day.  Eggs a couple times a week.  For carbs I do potatoes, yams, rice, or guinoa.  I've been used to cooking every night for years, so this wasn't a big change for me.  But once you get the hang of it it's actually pretty easy to cook a really tasty, really healthy dinner in under 30 minutes.  Oh.. and I do eat the occasional Aidell's sausage - which are minimally processed with no preservatives or other crap in it.

So far I've been feeling really good.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#11 Pegleg84

 
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Posted 11 November 2013 - 12:45 PM

I do eat pasta, prepared things like curry pastes/pasta sauce, peanut butter, gluten-free oats, larabars, etc, but these have already proven themselves safe. If you've been eating it with no problem, then it's probably fine. If it's certified gluten-free with simple ingredients, then it's probably ok. Frozen/packaged foods, baked goods, overly processed foods are a good idea to avoid, not so much because they might be contaminated, but because your gut might have a harder time digesting them until it's healed up.


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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#12 Nick_incollege

 
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Posted 12 November 2013 - 10:04 PM

Hey!

 

I'm 21 and in college, and am going through exactly the same thing you are. Like, exactly - when i first read your post I did a double take and had to make sure I didn't write it myself when I was in one of my hazy-i-dont-really-know-what-is-happening-to-my-life-its-all-a-blur gluten reactions. My reactions hit me 12-36 hours later, and last from 1 week to 3 weeks, depending on how severe they are. I get tired (ridiculously tired, if it's really bad - i.e. I took a shot of whiskey the other day, when i was drunk and clearly not thinking - I can barely get out of bed), moody, depressed (depressed as part of my reaction in addition the whole screw-my-life-how-can-i-deal-with-this-for-as-long-as-i-live sort of depression), nauseous, and worst of all, everything is just kinda hazy and shitty. I seem to be getting reactions as often as you - usually when I finish healing, I have a couple of days of freedom (which are pretty awesome days) and then my life gets screwed over again for a week or two. A lot of it is because I think i'm still learning that I'm extremely sensitive - I had made mistakes like drinking captain morgan (which, despite it being rum, is not actually gluten free) and eating fries that, as most fries are, had been fried with other gluten containing items. (yeah, I was drunk for that one too..) Anyways, it's gotten to the point where it just kinda sucks - i've watched everything I eat meticulously, I looked up my soaps, shampoos, etc, and somehow I still have problems. Most chefs aren't an expert on celiacs, so I get really scared whenever someone serves me food or I go to a restaurant. I stopped caring about having to ask and make sure that food is gluten-free and everything when im in front of my friends, but even though I check all the ingredients when someone makes me food, or meticulously ask a waiter to check the ingredients, shit still happens. I mean, there's a lot of times when you can't really avoid it, when you go to functions and formal events stuff and it seems almost impossible not to take the risk. Honestly, I've gotten frustrated. I do the best I can, but realistically there are so many of those impossible situations, and i don't know really how to deal with it. 

 

I got glutened for my first time a few days ago where i had absolutely no idea what had hit me - which is really scary. All other times, I had been able to come up with a reason for my reaction. This time, I can't. I only ate food that I prepared myself and had eaten on a regular basis. I guess what's scary about it is it means i'm ridiculously sensitive - does this mean the rest of my life is going to suck like this? The only theory i have is that my friends were baking in my apartment over the weekend, and maybe the flour got into the air or something and i inhaled it?

 

Anyways, i am in one of those crappy gluten days laying depressed on my bed, it makes me feel better that someone has exactly the same problem as me! From what I've seen, a lot of people who are celiac have sorta different symptoms, so it's cool that you are like me in a way. (I guess, haha) 

 

-- Nick

 

 

(Also, if you keep having problems, double check any alcohol you drink more than anything else. From what I've heard, gluten containing alcohol hits us 100x harder than consuming food with the same amount of gluten - alcohol sort of spurs on the reaction, or something. Most of the problems I've had have arisen from alcohol, so I have to check that I drink only alcohol that either says gluten free directly on it, or I go to their website and it says it's gluten free. 9/10 forums on the web say hard alcohol is gluten free, which is totally false. vodkas based on wheat (most american vodkas) are not gluten free, and enough gluten survives the distillation process to bother celiacs, and it bothers me a lot. I might as well drink a beer if i take a shot of wheat vodka. so, I only drink potato vodka (even then I look it up) and when i go to bars, I either only get angry orchard (my favorite cider, that stuff is amazing) or bacardi and coke. most rums (again, despite what most of what you find on the web says) are not gluten free, not because what they are distilled from, but because of added spices added after the distillation process. many manufacturers actually take the distilled sugar cane/molasses and put it back in mash after being distilled, just to add flavor. so, captain morgan absolutely wrecks my insides. bacardi is great, and my favorite rum too)


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#13 GFinDC

 
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Posted 13 November 2013 - 12:25 AM

Hi Upsilamba,

 

Don't worry too much about not being able to eat out and such with your friends, after all youth is wasted on the young. :D  Kidding!  You've got some good advice already, about mainly sticking with whole foods you  cook yourself.  Making food ahead of time on the weekends and freezing it is a great way to save time, and also have things ready to go quickly.   Rice dishes can be made many different ways, so after a month of new rice dishes each weekend you build up a nice variety.

 

I like to get the large family pack size of chicken thighs, and cook them all at once.   They store well and can be nuked with a little salt and lemon pepper and garlic powder real quick.  Fresh fruit is a good thing to have around for outings,

 

Getting your gut settled down depends on controlling what you put in it.  The fewer individual ingredients in your weekly diet the fewer chances of cc.  Or at least the fewer suspects to comb thru to find the culprit.  One important idea is to know what made you sick.  That is very hard if you randomly eat 3 or 4 things in  day that you never tried before or are unsure about.  Simplicity in your diet will help you while healing.  When you do decide to add something to your diet, only add one new thing per day.

 

Eating the same things over and over can be very exciting, not.  So try making different versions of the same dishes, by using varying spices or preparations methods.  Broiling, grilling, boiling, nuking etc.

 

If you don't have a problem with corn, Mission brand corn tortillas and corn chips should be a safe bet.

 

@Nick,  Hi and welcome!  The same advice can help you I think.  Cutting back on alcohol for a month might help you heal faster tho.  When your gut  and stomach are irritated, adding more irritation (alcohol) is maybe not the best idea.  Just a thot.


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 NoGlutenCooties

 
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Posted 13 November 2013 - 05:42 AM

 

. many manufacturers actually take the distilled sugar cane/molasses and put it back in mash after being distilled, just to add flavor. so, captain morgan absolutely wrecks my insides. bacardi is great, and my favorite rum too)

 

Adding back in sugar cane/molasses will not add gluten.  Captain Morgan is actually gluten-free - even their spiced rums.  I know for me, any rum is a guaranteed headache.  But it has to do with the sugar, not gluten.  You may just be sensitive to alcohol, which I'm finding out is not all that uncommon for Celiacs.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#15 IrishHeart

 
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Posted 13 November 2013 - 07:37 AM

. Most of the problems I've had have arisen from alcohol, so I have to check that I drink only alcohol that either says gluten free directly on it, or I go to their website and it says it's gluten free. 9/10 forums on the web say hard alcohol is gluten free, which is totally false. 

 

Not sure where you are getting this information from Nick, but honestly, distilled alcohol is gluten free. Even vodkas from wheat.

The distillation process renders it harmless. Celiac experts verify this information on many valid sites.

You may not feel well drinking alcohol for many reasons, including the fact that your gut may still be raw

but it is not because of gluten. 

 

"Distilled alcoholic beverages such as rye, scotch, gin, and vodka can be made from a variety of fermented grains. Like distilled vinegar, though, even alcohol made with gluten-containing grains is gluten-free because the distillation processed removes the gluten protein. Liqueurs are a mixture of distilled alcohols with added flavorings or extracts, though gluten-containing ingredients are not typically used in these products. Wine is made from fermented grapes and is gluten-free. Some wine coolers and ciders, however, may contain barley malt flavoring and are not gluten-free.  Obviously, it is important to check the ingredient label of these alcoholic beverages."

 

http://www.delightgl...hs#.UoObz9yIzvE

 

Best wishes to you.


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