Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dealing With Getting Glutened?
0

21 posts in this topic

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!!

 

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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. 

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

"(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

0

Share this post


Link to post
Share on other sites




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... : )

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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... : )

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

 

. 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.

0

Share this post


Link to post
Share on other sites

. 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.delightglutenfree.com/glutenfreemyths#.UoObz9yIzvE

 

Best wishes to you.

0

Share this post


Link to post
Share on other sites

Hmmm. are you sure irish? I've done a lot of research, and talked to a couple pretty reputable experts - they all say that alcohol distilled from wheat is many times NOT gluten free if it hasn't been distilled that many times. So, cheaper vodkas many time make celiacs react very strongly. more expensive alcohol that has been distilled many times generally does a better job taking the gluten proteins out - so good vodkas shouldn't do too much. 

 

Most of the sites that i've seen distilled alcohol been "verified" on aren't too legitimate, most sensitive celiacs and doctors agree that hard alcohol is many times a huge problem. i have two friends who are celiac as well, and we all pretty much die if we drink alcohol distilled from wheat. There doesn't seem to be too much a question about it for me.

 

I dunno, anyone else out there who could shed light on the whole alcohol distilled from wheat issue? I am pretty confident it's a problem but i'd appreciate any input!

 

GFinDC, i agree, cutting back on alcohol may be a wise choice. I guess it's hard, being in college. But, to be fair to myself, i've never actually had any sort of reaction - gluten or otherwise - from a gluten free drink, or many drinks. Whatever reaction i got from some mysterious thing, must be from something else! ahh. 

0

Share this post


Link to post
Share on other sites

Hmmm. are you sure irish? I've done a lot of research, and talked to a couple pretty reputable experts 

 

 

 

Yes. I'm sure. I've done the research too.

I gave you a credible source above. Shelly Case.

And the link Karen provided is to just one of the Celiac Centers that says it's safe for celiacs.

 

Just saying "most sensitive celiacs and doctors say it's not safe" does not make it  true. Sorry.

In this case, I am going with experts that have been vetted many times over.

 

If you have an issue with pure spirits,  it's not because of the gluten. 

 

Here is a chemist's article on this issue for you.

 

http://www.celiac.com/articles/21886/1/Distilled-Spirits-Grain-Alcohols-and-Vinegar-Are-they-Gluten-Free/Page1.html

 

If you wish to provide me with these reputable experts' published materials, I'd be glad to read them.

Thanks.

 

I know it's just my opinion, based on my experience, but I assure you, if there were gluten in alcohol,

I'd be dead by now. All the celiacs I know, drink alcohol (we sound like a rowdy bunch lol)

and none of us have damaged villi or gluten-related symptoms as a result.

 

However, I did not drink alcohol the first year after diagnosis, so my gut could heal. FWIW

0

Share this post


Link to post
Share on other sites

I don't know how to link to an earlier post thread on here, so I'm just copying/pasting - this was posted as a response received back from Austin Nichols - the makers of Wild Turkey Bourbon:

 

 

Thank you for taking the time to contact us regarding glutens in beverage alcohol products specifically Wild Turkey Bourbon. We have received an approved answer to your question about glutens. Please see information below.

Gluten is a class of proteins found in certain cereals, particularly wheat, rye, barley and oats. They are volatile and, in the production of distilled spirits from such cereals, they are not distilled into the spirit product.

For example, by definition bourbon is produced from an original mash of at least 51% maize. The remaining 49% of the cereal grains in the mash may contain gluten. However, during distillation gluten would remain as part of the spent grains and not on the distillate or finished product. The bottom line is that, by the time the product has undergone distillation, maturation, blending and shipment, there is no gluten present in bourbon.

We would recommend that you contact a physician, as this involves a medical issue also, before consuming any beverage alcohol products.

Best Regards,

Earline

Wild Turkey Bourbon

Consumer Relations         

0

Share this post


Link to post
Share on other sites

Hi Nick,

 

College or no college, your health is still important.  That being said, have you heard of Tito's vodka?  Tito's is made from corn, so there is no gluten in the processing.

 

If you are sure that the alcohol wasn't a problem, then you'll need to look hard at your diet.  Figuring out how to eat gluten-free safely is not an overnight process for many people, it can take some time, like months or more.  Processed foods are convenient and abundant in everyday life, but they are also risky for celiacs.  Getting control of your diet is going to be very important for your health.  Knowing what you are putting in your stomach is something you'll get used to over time.  But it does take some extra effort at first to learn to be vigilant about gluten.  Many people don't pay much attention to the ingredients in their food, but we have to be aware.

 

Some people use a food and symptom log/diary to help get things figured out.  They write down what they ate each day and how they felt, including physical and mental symptoms.  Over time trends may show up from that.  Some common gotchas are vitamin pills, teas or flavored coffees, drinks, etc.  Basically anything you tend to automatically assume is safe to eat is a possible gotcha.

 

The payoff is a healthier body that doesn't develop additional food intolerances over time due to a constantly irritated gut.  And possibly many other health issues avoided.

 

There are 300 possible symptoms of celiac disease, and they include just about any area of the body you can imagine.  After all, we are what we eat, and so if what we eat is poisoning us, we are in trouble.

 

Eating gluten-free is tough to start but is gets to the routine after a while.  Then it is easier.

0

Share this post


Link to post
Share on other sites

Hey again! Ironically since I've finally felt better enough to go out and do some normal-ish life things instead of just moaning sadly on my couch, I've been away from the thread a little while. But thanks so much to everyone for the advice! This is definitely an ongoing struggle...

 

Nick, ugh, so sorry you're in the same boat...it's a miserable, miserable, one. But since we're both in it I know what you mean, it's definitely nice to have the company! When I first got diagnose, I went and read a lot of books and blogs that talked about how once you learned about reading ingredients and talking to restaurants and generally ate safely, life would be totally manageable, and you'd be in control of your health, and able to eat lots of great things still. Which is definitely not how it's been going for me so far, so I'm glad it's not just me like, doing it wrong, you know? I think some of us just get unluckier than others in terms of symptoms and sensitivities, but I think I have to accept it instead of feeling like things should be easier and less restrictive for me than they really are turning out to be.

 

I'm realizing I'm honestly a completely unrecognizable person for a while after I get glutened, like, to a Jekyll and Hyde level (except less going out on rampages in the night and more just a shambling wreck of a person with random crying jags and crappy netflix sprees and being totally unable to put a coherent thought together, haha). Even though I've been through it enough times now to know rationally that I will eventually feel like a real human being again, it always puts me in a head space where that just seems impossible, so it's a huge relief to be feeling the haze lifting again.

 

Basically right now I've decided to go on a super restricted diet for at least a month - not quite as extreme as only eating a very specific set of foods, but I'm only eating things I cook myself from whole/raw/minimally processed ingredients. This past time I was SO SICK that I could really just see my health, job, and my whole life falling apart if that keeps happening to me. So I had a bit of a come to Jesus talk with myself and decided that my approach of trying not to let celiac disrupt my life completely in terms of eating habits, and also of feeling entitled at least to eat out at places with gluten free menus/kitchens, or eat prepared foods labeled as gluten free, was just not working and I needed to let go of that. I haven't let go of wanting to eat food I actually enjoy - so I've been baking some gluten free breakfast bars and cooking nice (but basic) meals for myself, and I'm still striving for as much variety as I can within the restrictions I've decided to stick to. 

 

It's been about a week and so far no mishaps (though I did give myself a bit of a heart attack when I nibbled a crumb without thinking about it, then spat it out like a crazy person in the middle of my office lol - but I'm pretty sure it was from my own food anyway, phew). I've cut out anything I have the remotest doubt about being safe and non-angering for my system, which right now means no alcohol, no dairy, and even no stuff I know is safe like glutino crackers and Udi's bread and all of that. I'm considering phasing back in some gluten free pasta (which has never given me a problem to my knowledge) and maybe some Aidell's sausages, but that's about as far up the food processing chain as I'll be going.

 

I'll see where I'm at in a month - to my knowledge, I don't have problems with anything but gluten and maybe dairy, but it's hard to really know until I can manage to stop glutening myself for long enough to see if I'm still having any other gastro problems. Really it's the gluten turning me into Hyde-me that's the thing I can't still live my life through, though, so I'm OK with having a slower timeframe to see if I need to figure out other intolerances, too.

 

Nick, in terms of distilled alcohols, I don't really drink them (and only rarely before I got diagnosed) and I'm not sure on their safety - it's one of those foods where I've seen people (celiacs and "expert" people) being equally vehement on both sides of the issue, so I've filed it away in my "not sure and maybe experiment when I'm in a place where I can do that" folder. Like I said I'm giving myself a break from alchohol for a while to spare my system from anything that might upset it, but I personally mostly drink cider or wine when I drink - I actually realized beer was no good for me a few years before I got diagnosed, so that's nothing new. Angry Orchard is great (and easy to find), but if you live in a place with stores/bars with craft brews, you can likely find a whole lot of interesting ones to try! I will say watch out for "gluten free" beers that are brewed with barley with the "gluten removed" (e.g., Omission) - I tried Omission once and had a ridiculously violent reaction to it, so although they test and certify each batch...it may be more complicated than that, and I won't try anymore unless it's a time/place I can afford to risk getting sick.

 

You might really want to think about taking a break from alcohol for a month - or until you've gotten your system more even-keeled in general. I know it's a totally crappy thing to contemplate especially in college, bu I saw a lot of friends in college go through patterns where they would get sick, just barely start to feel better, and then go out drinking again, thus making themselves sick again. My friends who were just sick from the flu or whatever would gradually bounce back, but I think with a chronic, systemic disease, you may not be able to count on being that resilient. I'm in an over-cautious mood myself these days, so you can take this with a grain of salt, but you may find it's just better for your body (and sanity!) to give yourself a long enough break to really let your body get itself back together, before you start putting it through all the standard abuse that college people/20 somethings like to inflict on ourselves : ) I'm calling it my month of enforced clean living, haha...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,345
    • Total Posts
      917,406
  • Topics

  • Posts

    • Weird Reaction
      Yes, I was surprised about the MSG in broccoli as well. I just had a quick look now as I couldn't remember where I had read it but some mushrooms have it to. A Google search will bring up a few things. I always just thought MSG was an artificial food enhancer!! Insecticides are still a big possibility though. Why do you not want to try organic? We buy organic when we can and fruits and veges that are in season are usually the best and cheapest.  Thank you for the link, Cristiana. Very helpful. I have an appointment with my Naturopath in a couple of weeks and going to have a blood test done before that. She is excellent. Very knowledgeable and loves her work. Until then I'm not taking any supplements. I generally eat pretty well anyway so we'll see what she says. In the past I have used B12 injections (aka Neo Cytamen) which I found much better and safer than taken orally and very cheap. The energy boost was very noticeable. I didn't know it helped with anxiety though. She has also had me on Magnesium, Probiotics and Vitamin D3 and I also make my own Liver Tonic (Milk Thistle, Dandelion Root Powder, L-Glutamine, Taurine and Choline Bitartrate) which I use from time to time for a quick detox. Too much of anything can be bad but I think iron can be not real good in large amounts. Deficiencies can be related to gut health and/or competing for absorbtion with something else you may be taking I found. I'm no expert though but just a few things I've picked up during research. My normal GP told me to just eat some more red meat but I want to speak to my Naturopath first before supplementing. Her knowledge on nutrition is a bit more up-to-date.  I was just sitting there at lunch today after feeling great all morning and had a "weird feeling" come over me. Just a not quite right feeling. Very hard to describe and slight nausea. It's funny that as I get older any little thing I get I seem to think it's life threatening.  
    • Gluten and panic attacks
      There are great gluten-free pizza crusts out there, as well as good dairy free cheese. I find the key is to add good toppings, e.g. meats, carmelized onions, other veggies, white anchovies. Life goes on. Congrats. Hope the good feelings keep up. 
    • Gluten and panic attacks
      Just want to update incase anyone can find this helpful. I have stopped eating grains and dairy and everyday I'm feeling more and more like myself. It's amazing and I don't really care that I won't eat a regular pizza again. I mean 4 months ago I would have said I would die without gluteny soft pizza, now I am happy to never eat it again if it means I will never have to suffer a panic attack.
    • Daughter with celiac- need test result help
      Thanks so much for your reply and the encouragement! She has not had the dgp test. I will ask her doctor at the next appointment in two weeks. Her doctor is out of the country now for a family emergency so I can't talk to her before her appointment. Her thyroid is good. The whole thing has been tough - logistically dealing with the dietary change and how extremely careful we have to be. Emotionally - worrying about her health and her feelings about all of this. I'm happy her number came down so much. There's hope. I'm just praying there's not more wrong and trying to prevent any possible risk of cross contamination. It seems she's very sensitive. It's also tough she's a kid at school with gluten on every surface. 
    • Newbie: mother to coeliac kids
      Wonderful news to hear that he has finally had his testing done, and can go gluten free. I understand that he is afraid of needles. Most children are. It is great that the hospital have acknowledged his and your family's suffering. Hopefully now they will give him the A1 treatment that he deserves. I am really looking forward to hearing of his improvement, as no doubt he will come along in leaps and bounds. Children are remarkably resilient, and with any luck he will enjoy a healthy and bright future with adherence to his required diet. Way to go Mum, you have been through a lot, watching your boy suffer. I hope that you are handsomely rewarded with being able to watch him flourish now. Good luck with your older boy too. Keep us posted.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined