skullgrl

I've had B12 deficiency/low iron for years. I just give myself B12 injections now. They work great. You may be able to find lactose free yogurts. 

Edit: Oops, pardon the last sentence. I didn't realize it was an allergy! My apologies.

Some tips, since everyone has covered the basics:

1. Don't apologize. You bring your own food and enjoy it, if other people are offended by your health problem it's their issue, not yours.

2. Don't be forced into eating something you aren't sure about. People generally won't do things like, "Oh but Mr. Diabetic, it's just a little sugar in this cupcake, you'll be fine!" "Oh but Ms. Peanut-Allergy, it only touched a peanut a little, I can just wipe it off!" Not OK there, not OK for Celiacs.

3. Find joy in the little things.

4. You will mess up, it sucks but it will get better again.

If anything ever happens to you again that happened with the appendicitis, and you are in serious pain (obviously, you were, I'm just saying for others who may have problems in the future) or for whatever reason you are in a hospital and they aren't treating you properly and you know something is wrong I have a very simple solution that has worked for both my Mother and I.

Start screaming. And I mean screaming. Have you ever wanted to vent all your earthly frustrations like when you were a baby? Do it. I waited over 3 years for a referral to a rheumatologist. My GP (at the time) wouldn't give me one, no walk-in clinic would nor would anyone at a hospital (and there were no new GP's around). Fastest referral I have ever gotten, and he actually figured out what was wrong with me (not the Celiac disease mind you, but sorting out the nerve pain condition was good enough).

If you are in trouble and no one is listening, then you have to be louder. You don't have to be rude but you do need to advocate for yourself. In Emergency, if you don't have a visible representation of how bad things are then you need to tell them. 

Fun Fact: 2 Hours in my Dad found the Emergency doctor asleep a few halls over, on a bench. 

Make sure they are monitoring for psoriatic arthritis, if you have psoriasis.  

Thanks for sharing! I think I might try them.

Please read all the newbie threads about cross contamination as well! It can take quite a while for things to start getting better but if you do a lot of research and make sure to avoid things like cross contamination it can make the transition phase a lot easier.

  On 7/10/2014 at 12:35 AM, CajunChic said:

I'll try it out!! My gut hates oil.

Awesome! Happy to share it and hope people enjoy it.

The cutting boards, colanders, and anything plastic, wood or nonstick (ie. pans/baking sheets/muffin baking sheets) can NOT be shared. You need to get all new ones because gluten is a protein that can get stuck in the cracks and will not be removed by the dishwasher. I would advise against using the same towels, you need ones kept strictly separate. If you have a really crappy dishwasher I wouldn't want to wash things that have a bunch of gluten on them with things that are gluten-free (I'm looking at you dishwasher, I see all the food you leave on things!!).

I would also not have any sort of wheat/gluten-y flour in my kitchen. If you breathe it in, it can go down the back of your throat and you can be glutened. I know when I bake I get flour everywhere as well, if you have a coating of it (like dust) on things then it can easily get into your food.

I also suggest going through all your spice mixes to see if they contain any gluten.

The simplest solution is generally just to go entirely gluten free. My boyfriend has free reign to go out whenever he wants and eat whatever gluteny thing he so wishes. Its really not going to hurt your household to go gluten-free and it will be a lot simpler. I know a lot of people make it work but I can't. I don't mind if someone heats something up in my microwave but beyond that I don't want it near my kitchen. Peace of mind, especially not having to worry about what's touched what when I'm making breakfast and half asleep means a lot to me.

  On 7/9/2014 at 7:29 PM, IrishHeart said:

I've done the kale chips and roasted chickpeas, and they are good, yes....but if I'm going to have potato chips, I'm not making them too. 

 

I eat Cape Cod chips if I have a hankering.

 

But thanks for the link!!

I love my kale chips too. Daw, I looked up the Cape Cod ones and now I'm drooling all over the computer.

  On 7/8/2014 at 4:46 PM, IrishHeart said:

I can't have those darn things in the house. Absolutely zero self-control with those. Seriously, what IS IT with potato chips?? 

I'll paint a picture for you; it's 11 PM, I'm craving something salty, something crunchy and I know there are potatoes in my fridge. I needed a quick fix, and I found it. Marvel in the glory that is the microwaved potato chip (and you don't have to buy that silly contraption).

Open Original Shared Link

Takes a little trial and error to figure out whats best for your microwave but it's worth it and for people who have issues with frying/oil, well, it doesn't use any. They don't stay crisp for a long time but I'm seriously considering making a bunch and tossing them in my dehydrator.

They may be gluten free but if I remember correctly the Tostitos are made on a shared line (at least they are in Canada). The whole new law for gluten free labeling in the U.S. (I'm not sure where you are located) is not in effect until August 2nd, meaning the term gluten free on foods don't really carry much weight.

  On 7/5/2014 at 9:27 AM, Angelmel said:

I've made the decision to do a strict gluten free diet. I just can't wait for testing. The abdominal pain and diarrhea came back work than ever.

A couple of questions:

1) should I be getting new cookware etc to ensure no cross contamination occurs?

2) if so what all should I replace? Pots, pans, cuuttingboards, plates, utensils?

3) are oats okay? I've reading conflicting ideas.

I don't want to take any chances. The safer the better, I guess?

Thanks everyone.

Please make sure you get diagnosed first, if possible. Anything with teflon/nonstick coating, plastic and anything that can scratch and hold gluten in it. Colanders as well because its too hard to clean all the little crevices. All metal pots are fine. Cutting boards need to go. When looking for things to get rid of ask yourself, "if gluten was a bacteria that I couldn't remove because it's a protein would I still use this?" I got rid of things like my blender and food processor because the bowls were plastic and I used very gluten-y things in them. Depending on how much you cook, you can slowly buy pieces as you need them. If you're old items are in working order you can always sell them (any appliances) or donate them. 

Oats - once you are feeling like you are in a good place, with little to no symptoms, try some gluten free oats (make very sure that they are gluten-free) and see how you feel. Don't eat to much at first, because they are pretty fiber-y which could make you think its an issue. So add them in slowly and try not to introduce other foods to see if they cause you any problems. 

This article will help further with cleaning up the kitchen. By eating only plain foods and a few certified gluten-free items (mainly spices) I have eliminated all my vertigo, fatigue and all other ataxia symptoms. 

  On 7/4/2014 at 5:03 PM, Pegleg84 said:

Sushi has become a very occasional special thing to me. I'm also soy-free, so that makes it extra fun. I've found one nice, reasonably-priced, good quality place here in TO. I haven't had sushi out in the city for a year maybe. I've had much better luck when travelling. In San Francisco, there's a Japanese restaurant with, yes, a dedicated gluten-free tempura fryer. THAT was a treat. Also, there's a completely gluten-free Japanese fusion restaurant in Canmore, Alberta, of all places.

 

At home, make sushi rolls out of whatever you want. It doesn't have to be raw fish. You can cook it up first if you want, or do a more Korean style version with pork or beef. The tricky part is getting the rice just that right amount of sticky/vinegary, and not putting too much in the roll.

 

Have fun.

Dedicated... Tempura... Fryer... ohmy. Do you happen to remember the name? In case I ever travel there.

  On 7/4/2014 at 9:18 PM, Kimbalou said:

So today at work we are having a potluck. Everyone kept talking about how wonderful the carrot cake was. On and on and on. I didn't say a word. Most of the food was gluten free, so that was nice. Someone told me "I am so sorry you can't eat gluten, this cake is SO GOOD." Finally I just said "That's ok, it will make you fat anyway." ha. I couldn't resist. I told her "sorry, I couldn't resist saying that." Sometimes I have little tolerance....and I thought her comment was annoying.

I wouldn't mind if they rave at each other about how good it is but the moment one of them comes over while shoving it in their face-hole and tells me how good it is and that they're sorry I couldn't eat, I'd tell them to shove it. That really isn't necessary nor is it helping. Its kind of like a little kid showing another little kid some candy they can't have. The parent is supposed to tell their kid to put away the candy until the other child leaves.

Like kareng said, good for you. I'm all about opening up dialogue and not being completely rude but some people are just obnoxious. 

You have to be careful with the sushi rice. It is usually is cooked with vinegar and it can sometimes be one of the types of vinegar with gluten in it. Never hurts to ask.

If you are the one pouring the dry kibble and there is a big dust cloud, you can breathe it in then it would have to go down your throat (remember they're connected). Or if the dust is getting on your clothes and you touch your mouth... etc. etc. If its wet food is it possible that you're washing the cat food dishes with your regular ones? A dishwasher should be able to wash both and get it off but I don't trust the terrible dishwasher in our apartment. If you leave the dishes in your sink together that might be an issue, if you don't hand wash them well enough.

It doesn't hurt to rule out the kitty food whilst taking a look at other things. 

The dizziness and spinning are most likely Open Original Shared Link. I get that quite bad myself. 

  On 6/29/2014 at 12:43 PM, powerofpositivethinking said:

so it ended up not working out with that guy due to major character flaws on his part, but from every experience we gain new insight   I haven't been posting a lot because instead of moping around like my pre-gluten-free self would have done, I decided to just get back out there.  

 

My go to date restaurant is Iron Hill Brewery.  They have been very accommodating in the past, so I keep going back.  If you're in the Philly/Delaware area, I highly recommend this local chain!  

 

Moment of realization...having celiac lines you up for a second date.  If the guy's enjoyed your company and then you tell him I can't let you kiss me because of what you ate, then it's, when can we go out again?  Oh the positives make life so much more enjoyable!  Out late last night with friends, so I see a nap in my future before I go on a third date tonight with the same guy    

 

Dating with celiac can be a little more stressful, but with healing comes confidence, and with confidence comes enjoying life 

If I wasn't in a relationship, I would carry around a ziploc baggy with a fresh travel toothbrush and safe toothpaste in my purse for dates. 

Learn and practice cooking and baking. When I'm going to a function where there is no hope that I can eat anything (I'm super sensitive so that's everywhere) and food is a focal point of the occasion I just bring my own food and if I'm up to it I make something I really like. If its too much to make something for everyone just make something delicious for your self and think about what they are missing out on (when I'm feeling crusty, I regret to say I get satisfaction when someone looks over to what I'm eating, knowing they aren't getting any of it and says something like that looks amazing or that's my favorite). Remember that these functions are not really about food, although it may seem like it. It was a one year sobriety celebration, you're there for support and celebration. 

When I go on vacation, if my none gluten-free family members want to go eat something (that isn't just a quick bite or snack) I just tell them to go and enjoy. I used to love this amazing steak house in Florida, that I would visit every time I went there. I know my boyfriend still loves their food so I send him on his merry way to enjoy it, I'm not going to sit there and watch him eat some of my favorite food. I have lots of time on the vacation to spend with him doing other things so that hour or two I can find something I enjoy and not have to watch him stuffing his face with deep fried oreos dunked in vanilla ice cream. During vacations, especially ones with new cuisines, do research and cook your own! Pack up a hot plate (if you don't get a place with a kitchenette), pan, pot, knife and a cutting board and find a place to source meat and veggies. 

Lastly, perhaps its simply my antisocial nature but any event where the focal point/most interesting thing is "who knows what filled" burgers and hot dogs is not something I would go to. If its something I am obligated to go to I bring my own food, enjoy it and focus on why I'm there rather than on what other people are eating. 

  On 5/19/2014 at 2:49 PM, GottaSki said:

We use Lundberg in our home too.

 

I don't know how much rice you are consuming, but perhaps if you eat a smaller quantity or cut it for a time and then try it again. 

 

What I'm saying is it simply could be your body is having a hard time with rice (for now).

I haven't actually tried adding in any rice yet and I wouldn't plan on consuming much of it. I would just really love to eat some occasionally.

I do like Lundberg's No Unhatched Duck Smushing policy!

Their response to my questions, I said I would post it.

Q:

"Hi, I was wondering if your rice is tested to see if it is gluten free. If so which testing method do you use and to what parts per million is it tested too?

We are not required to test for gluten as our rice mill and packaging facility has no allergens or ingredients present other that rice.  This statement applies to all packaged table rices and rice blends.  If you have any questions, please feel free to contact us here at the farm.

Thank you,"

  On 5/19/2014 at 1:00 PM, dilettantesteph said:

Alter Eco has rice certified gluten-free by GIG.  That's what my son and I eat.  We have had problems with other rice.  We are also oat sensitive. 

Good to know. I'm not sure if my local health food store has Alter Eco, definitely worth checking out.

  On 5/19/2014 at 12:06 PM, IrishHeart said:

To be safe, I go with certified --the big G F in the circle--on those types of alternative grains. 

Lundberg has that certification. it's all they grow, as far as I know.

Both Gemini and I are easily affected by trace gluten CC, and we both use their rice.

No problems and our repeat celiac testing is always fine.

I know she would pipe in here and say this, but she is super busy with work right now. 

 

That's my best advice. 

Thanks Irish, 

I only use certified stuff. The one with the big circle is GIG/GFCO certified. I just couldn't find it on the Lundberg packaging which is what made me come here and look for other options.

Hey everyone,

thanks for all the info. I know rice isn't usually contaminated I have just found that after eliminating just about everything that wasn't just butchered or pulled out of the ground, I've been recovering. Its awesome especially after a year of not really getting anywhere. I was having a lot of issues with Open Original Shared Link apart from my usual Celiac-ness. I've successfully used things that were tested to be GIG Certified (although I can't eat too much of it). Considering what even trace amounts of gluten do to me I just figure its better safe than sorry. I emailed Lundberg about their testing methods and if I get a satisfactory answer I will definitely give it a try. I will also post their response.

Like I said, I know rice should be fine but its not worth me feeling awful for a few days if it has trace amounts. 

I was wondering if any of you awesome people could help me to find some rice I can eat. I've found myself to be super-sensitive and can't eat most if not all p remade gluten-free products. 20PPM is just to much but I've had success with adding in foods (in moderation) that are certified gluten-free by one or another of the groups who test to 10PPM or less. I'm looking for rice that us tested to this level. Thanks for any help!

I've been having some problems like this after going gluten-free. It was driving me insane, I had plateaued and was still feeling terrible while my anemia was still there a bit but otherwise it seemed I was recovering. I then read about gluten ataxia in a gluten-free magazine (Living Without I believe) and realized it described me to a T. Among the other usual ataxia symptoms I would also get stabby sudden headaches (which I noticed were markedly different from the migraines I get).

I have in the past 2-3 weeks gone completely processed food free. Nothing that is labelled gluten-free I use with two exceptions - GIG (Gluten Intolerance Group) Certified spices (from Spicely.com) and a few things from Nuts.com (taking care not to eat too much). I go with GIG certified things because they are tested down to 10PPM and they are actually active about checking. I know in Canada there were standards for the word gluten-free before the US (that new law, right?) but its not as if they have anyone checking, its only after complaints that items are recalled. I'm not sure how it is in the US (or elsewhere) but I know here if something is naturally gluten-free, they can label it gluten-free no matter what crazy stuff it touches on the way to you. 

I must say I've been doing a lot better and saw a really big improvement almost immediately. I was a little sceptical at first that trace amounts could be doing anything but I ran out of almond flour from nuts.com and picked up one labelled gluten-free at the store near me and after making pancakes with it I felt terrible all day and had a lot of neuro symptoms. 

I have an MRI scheduled soon and I can update you if I have any abnormalities. I finally got an appointment to get one; I started having seizures around January, which only happened a few times, thankfully.

Edit:

Rereading your questions I have a bit more to add. 

One of the theories is that because the cells in your cerebellum are similar to those of your intestines, the body decides to attack those as well as the intestines when the immune system is activated by gluten.

Open Original Shared Link

The general consensus is that if you are super diligent then the brain can slowly repair itself but it is slow and there is a point of diminishing to no return (middle age+ and someone still eating gluten). Its incredibly important for someone with ataxia to not slip up as it can set you back quite awhile. This is why I felt so frustrated. I would read about people being glutened and a lot of the times it would be along the lines of, "Whelp, I pooped myself for a week but I'm starting to be on the mend now." (not trying to diminish anyone's suffering, I just couldn't relate to many people's symptoms which left me feeling a little lost) where as it would take a month or more for me to feel anywhere near normal. Anyways, I'm feeling a lot better now and I'm super thankful to have this forum, I doubt I would have found the information I needed to get better without it. Its also great to vent to other Celiacs/NCGS.