So Discouraged

[across]

This is my first time to post in this part of the forum. I've been gluten free for about 9 mos., and I seem to be getting more sensitive. Recently, I had seizures from cc'd cashews (made on a line that I didn't realize processed wheat). 

 

I'm extremely careful about what I eat, and I try to do everything I can to avoid cc. Yesterday, I got glutened, and I don't know how. I suspect it was the Naked Juice I drank (no glutenous ingredients, but apparently, a shared facility/line?)

 

I'm depressed today (a usual reaction to glutening for me), but I'm also depressed because I have tried SO hard to avoid anything that would make me sick. Now it seems like all I will be able to eat are completely unprocessed foods. I have a very stressful next few months ahead of me with my work and school and a pending move, and I feel unable to deal with the added burden of trying to avoid cc 24 hours a day!

 

I know there are no answers, I just wanted to share this with folks who might understand what it's like. I'm very discouraged right now. Thanks for listening.

 

 

[Live4vacations]

I know exactly how you feel and feel your pain! I am 3 months (on Friday) post diagnosis. I am still trying to adjust. Food was a huge part of my life/socializing, etc.. Which may have been a bad thing but it was who I was. Not only was that taken away from me but I am very frustrated at how much in my life has changed as a result. If I live in my bubble (at home only) then I am okay but dread going out as I know I will either get sick or spend countless time explaining why I need to be gluten-free, cc''ing and asking/reading ingredients. I could see doing this if it was a choice but when you are forced to do this virtually overnight, it is beyond frustrating.

I am sure on a positive note, things will get better? Wish I could offer some advice but as a newbie, I seem to be in the same boat.

This is my first time to post in this part of the forum. I've been gluten free for about 9 mos., and I seem to be getting more sensitive. Recently, I had seizures from cc'd cashews (made on a line that I didn't realize processed wheat). 

 

I'm extremely careful about what I eat, and I try to do everything I can to avoid cc. Yesterday, I got glutened, and I don't know how. I suspect it was the Naked Juice I drank (no glutenous ingredients, but apparently, a shared facility/line?)

 

I'm depressed today (a usual reaction to glutening for me), but I'm also depressed because I have tried SO hard to avoid anything that would make me sick. Now it seems like all I will be able to eat are completely unprocessed foods. I have a very stressful next few months ahead of me with my work and school and a pending move, and I feel unable to deal with the added burden of trying to avoid cc 24 hours a day!

 

I know there are no answers, I just wanted to share this with folks who might understand what it's like. I'm very discouraged right now. Thanks for listening.

[BlessedMommy]

No real answers, but I'm sorry that you're experiencing this. Neurological problems are so scary! 

[dilettantesteph]

I feel your pain.  Try to tell yourself that the depression is another symptom and things aren't as bad as they are seeming right now.  I am on an almost completely unprocessed diet.  I'm going on 7 years.  My son is that same way and my daughter is close behind.  I can give you the reasurrance that you do stop getting more sensitive after a few years.  I was getting more and more sensitive and then it leveled off.  I found digestive enzymes control the glutening symptoms fairly well.  They also make it take longer and with more serious symptoms for me to notice if I have started glutening myself. The mixed facility thing is hard since it is not required to be put on packaging.  Also, even gluten free facilities can source things which were contaminated by someone else. 

 

With more time you figure out more solutions.  It does get easier.  It has helped me to keep a food/symptom journal, though it is time consuming and hard to do every day.  It has also helped me to try to only make one change in what I eat every week or so.  That way if I do get sick, I can figure out why.   It's also possible that something else is going on so be sure to look into that.  It will get better.  Hugs.

[icelandgirl]

Hi across...I want to send you a ((hug)) and let you know that you are not alone. I'm sorry that is happening to you. Seizures sound very scary. I'm eating only whole foods myself and it can be very depressing when I try so hard to do all of this right and still have issues. So...I get it.

One thing to keep in mind is that you may not be getting glutened...your body nay have become sensitive to or intolerant of other things...not fun I know. I ate watermelon on Monday for the first time in a year. Unfortunately I ate a bunch because it tasted to good. 30 minutes later my stomach hurt and I had D the next day. Bummer.

Hang in there...maybe do a food and symptom diary and see if you notice any patterns.

[Rosiesallergies]

Hi Across,

I've been doing this Celiac fun thing for 12 yrs now. Seems like a lifetime! Reactions and new intolerances are no fun at all. You will get to know how long until you feel human again. For us it's two weeks of horrible and then we turn human again I've had to adjust my cooking to the kids allergies several times now. It's hard. It averages 3 months before the new diet is what we consider easy. Here's some of the things that help us.

Find a couple restaurants to go to where you can order a safe meal. Plain steak and baked potato. Whatever the safe meal is. That way you don't feel so isolated and can still go out with friends.

Find recipes to replace what you miss the most. Then stock the freezer. It will help when school starts up and the move is happening. I always worry about food and if I have anything safe to eat. Stocking the freezer helps.

Feel better soon!

[T.H.]

Hugs, hon.

 

For some reason, I think there's something more upsetting about getting sick when you are being careful, you know?  If you were not taking as much care and you get sick, it's more like 'dang it, I knew i shouldn't have done that.' But when you are taking care - and often missing out on foods and activities you may like as a result - it can be so disheartening.

 

We've all been there. I was in the exact same place a couple weeks back, reacting to things that I'd been trying to avoid and feeling SO down about it. But...the mood goes back up, yeah? Maybe you could even put a ridiculous little post it note put up in a few places to remind yourself that it will.

 

Or listen to some really uplifting music.  

Open Original Shared Link (Like this one - it's even the sing-a-long version, heh. ^_~)

 

One thing that might help is Pinterest and paleo recipes.  These recipes will be grain free, dairy free, and legume free. Some have nuts, but many more involve meat. They are very often processed-food free. Pinterest has some amazing paleo recipes on there now - it's like a giant cookbook geared toward people who have to cook with whole foods. 

 

Makes it easier than trying to figure out all these recipes yourself. See if you can find some easy-to-make ones with some of the foods you have on hand right now, even.  Might make you feel just a little better. Even doing something like chopping a banana into pieces and putting it in the freezer, or freezing some blueberries, would make you a quick, cool snack food you could have right now for little to no effort.  It just seems like that might be helpful right now, yeah?

 

 

Take care - you can do this, and other folks going through it are always willing to listen if you need to vent a bit.

[across]

So many kind words, and so much good advice -- thank you all!

 

I'm better now. The gluten bogey-man has cleared my system, and I'm thankful.  

 

Your words and your kindness have really helped. I'm not alone in this. Other people understand what it's like. That helps. Right now, every time I eat it feels a little like playing Russian roulette, but I know with time, things will improve.

 

Have a very busy couple of days ahead, but will try to post more later.

 

Thanks, again!

[RollingAlong]

Make sure that you keep an eye on levels of zinc, iodine, vitamin d, b12, iron.  Deficiencies will aggravate. 

[Finally-45]

I've been in your shoes too. I hope you figure it out soon.

The Naked drinks have cross contact with barleygrass, which is in the Green one I believe. Some ppl say it doesn't bother them, but I don't tolerate barley or wheat grasses. I let go of the Naked drinks about a year and half into the gluten-free diet. It wasn't obvious at first, but they gradually became nauseating. It was about that same time I realized just how closely I had to read the labels and not eat anything manufactured in contact w/wheat, rye, or barley. (Those were the good ole days.)

I've also heard of new Celiacs developing fructose intolerance.

[Frosted]

I completely understand how you feel.  I was diagnosed 2 1/2 years ago and have been strict gluten-free since I found out what I had.....at least I thought so.  My symptoms never really abated, and got really bad again a couple of weeks ago.  Back to the doctor for an ultrasound (clear) but TTG IGG blood test still showing gluten antibodies.  So....either I'm getting it somewhere or I'm developing refractory, which scares the heck out of me.....endoscopy tomorrow and then Mayo Clinic in December if I can't find some answers.  Anybody out there have a blood test turn up positive when you thought you were being careful and it WASN'T refractory??? 

[MJ-S]

Frosted, refractory is really rare so if you still have high antibodies it's more likely that you're still getting glutened. Have you tried giving up processed foods to see if it helps? Most celiacs do fine with the standard gluten-free diet, but there are some of us who are more sensitive and require a non-processed food diet. Even though it's a pain, it's WAY better than being refractory!

 

A new study was just published this month discussing cross-contamination of gluten-free products, including certified gluten-free products:

Open Original Shared Link

 

Basically, the study found that out of 158 products tested, 5% of products labeled "gluten-free" and 4% of products labeled "certified gluten-free" tested above 20ppm.

 

While this may not sound huge, if you are one of the unlucky ones eating these products (and statistically, that's 1 in 20 products), you could be affected even if you're not super-sensitive. 

 

The best defense is to skip the processed foods until you get your antibodies down. You're not a newbie, so hopefully you have other variables under control at this point (shared kitchen with gluten eaters, personal care products, etc.)

Good luck!

[bartfull]

Frosted, have you checked all of your supplements and medications? Do you have your own dedicated toaster? Are you using scratched teflon pans or scratched plastic containers? How about your old cast iron pans? Cast iron is porous and if a pan ever held gluten, you will get glutened by cooking in it. How about the silverware drawer? They collect crumbs. Do you use old wooden spoons or cutting boards? They hold gluten molecules too.

 

Do you read every label every time? Ingredients can change at the drop of a hat depending on price and availability. Do you eat at restaurants or friend's houses? If you wear lipstick or lip balm have you checked to make sure they are gluten-free? How about hand lotion? If you use a kind with gluten and don't scrub it off before popping something in your mouth you are glutening yourself.

 

Pet food can gluten you too. If you pour dried food into the bowl dust rises and just like flour dust, it can get into the back of your throat where you will swallow it. And doggie and kitty kisses can gluten you just like significant other kisses can. Make sure your significant other brushes teeth before kissing if they eat gluten.

 

Have you read the Newbie 101 thread in the coping section? It'll tell you more. Let's think as hard as we can and we WILL find out what is glutening you. Together we can get to the bottom of this.

[nvsmom]

Some people do take a very long time for their autoantibodies to come down, although it isn't common. I think it was Gottaski who took about 3 years for her to stop making autoantibodies and to have a normal endoscopy.  That is at the extreme end, but there are quite a few that take over a year to normalize; I was getting close to normal a year ago but I have no idea where I'm at now.

 

Keep checking but in the meantime recheck everything as the others suggested.  There is a chance gluten is getting you somewhere.