"Super Sensitive" Celiacs.....

[Mother of Jibril]

Wow... thanks for that note about Bob's Red Mill. It's great that they're trying to get up to speed and produce reliable products... but I'm one of those people who can't handle corn No wonder I was having problems with products that appeared to be "safe."

[num1habsfan]

Can't believe it...took me 3 days to tolerate anything at all in my stomach after that glutening earlier in the week. Ugh. Stomach pain is sstill BAD!!

For some reason the DH breakout is maybe the worst its ever been. It's taking over my foot...and driving me nuts. The hands are bad enough, at least those I can scratch if I'm sitting in class or something. But the foot? Blah.

[aliciatakescare]

I am extra sensitive celiac patient myself. I cannot eat things produced on common equipment or anything of the sort. Any tiny tiny cross contamination sends me in a spiral of pain, migraine, nausea, vomiting and of course the diarrhea -- all of which are lasting a minimum of 2 days. I have become very diligent about making sure my dishes/pots/pans/etc are all washed, dried and put away by me. i am also finding that it is necessary to wash all my laundry including my own towels/wash clothes separate as well. i also have to wash out the bath tub before bathing each and every time. I have had to change my vitamins and mineral supplements.

i have also found that i become dehydrated and anemic if i do not take these supplements and this has become a terrible problem, worsening with each "glutening".

i have experimented with many types of noodles and the ones i like the most are "Notta Pasta" rice noodles or Tai Rice Noodles - great texture AND taste. i am finding that using grape seed oil is the best type of oil for me to tolerate. the gluten free cupboard also has great tasting brownies. kinnikikwik is the best bread and pancake mixes i have found. I make everything else pretty much homemade and i only eat at friends' houses who take my issue seriously, otherwise i eat at home.

[JNBunnie1]

Does anyone have a 2 lb. bread machine mix or recipe that they use that is free of dairy, soy and corn? I tried Pamela's and my body is telling me that it's got a little soy in there so I was hoping someone had another suggestion. I have a few nut based breads but was looking for rice, sorghum, bean, etc.

Try this one:

Open Original Shared Link

About two thirds of the way down is "Gluten free bread that just might make you cry". It's an eventual bastardization of Lorka's bread from this forum. I tworks GREAT in my breadmaker. I use all sorghum instead of rice flour though, I don't like using rice flour. I also use less xanthan gum, but that's after some experimentaion, so you do your thing.

[lizard00]

I have to tell you guys about this dream. I know you are among the few that will understand...

I dreamed about pizza last night!! LOL

Recently, we went from having nowhere to get gluten-free pizza, to 5 locations now serving gluten-free pizza. In my dream, I was watching one of the places make my pizza, and then they grabbed a handful of regular flour and put it on my crust. And of course I flipped out, and told them they were harming people, and they didn't understand why I wouldn't eat their pizza.

So, we went to the next place, and I had my yummy pizza. I didn't want to get up this morning because of my pizza dream.

How sad is that???

I'm sure I've never dreamed about food before...

[jerseyangel]

Liz, you're right--we can all relate!!

I've had a few dreams about food since this started--in all cases, I have eaten things I shouldn't and then wake up in a panic.

[oceangirl]

Hi.

I just saw this thread and thought I'd throw in my two super-sensitive cents. I, too, react to a molecule of gluten and could not believe this would be possible when first diagnosed. In fact, when told that some had that reaction I think I said something like, "Yeah, RIGHT." Well almost 4 years later I've learned the hard way that I am ultra-sensitive.

I also spent 2 years gluten, soy, corn, egg, legume, nightshade and dairy free. Everything seemed to bother me. Now I am mostly well (although currently suffering through a random glutening from what source I cannot determine- I think it's in the bloody air sometimes.) I am still gluten, soy and legume free but am fine with dairy and eat eggs when cooked in something. I have had some corn and I THINK it's okay, but I'm not positive.

I think I am similar to Patti; whenever she has advised me over these years, she's been right. I am beyond grateful for her posts. And many others as well! I cook everything myself or my partner Michael cooks. My sister has bought new pans for me and is very serious about the diet so I trust her as well but sadly, cannot trust my Mom (even though she tries and is an amazing French cook, but her pans! And she doesn't understand the extenuating circumstances involved in this disease!)

I, too, have things sitting in my cupboard I've dared to buy (like quinoa) but haven't dared yet to try. Food scares me. The reaction is so painful- the left side pain, bone pain, more C than D and the feeling someone poured cement into my distended system. Mouth sores, joint and hip pain and feeling depressed and "fuzzy" all add to the festivities when gluten is around.

I cannot stress enough to those who are new the value of keeping a detailed food log. I have had one for 3 years and it has helped me so much!

Thank you, Patti, for starting this thread.

lisa

[Mike M]

Another FYI...Tested Wendy's Fries, Chocolate Frosty and Chili.....I asked and they do (at this Wendy's) use a dedicated "fries" only fryer.......

I think it was on this sensitive thread that I was reading about fast food fries? anyway......I tested Wendy's French Fries and Chocolate Shake and they tested totally negative for gluten....The Chili had an ever so slight positive, so it is somewhere around 10 parts per million or less. I did not eat the chili, but did eat the fries and the frosty and can report no symptoms at all and I am hypersensitive. Matter of fact I went back today and got another frosty. Not saying it is healthy food but in a pinch on the road, it will do. All the best, Mike

[jerseyangel]

Hi.

I just saw this thread and thought I'd throw in my two super-sensitive cents.

Hi Lisa

I'm so glad you posted! It seems we super sensitives have so much in common

Gosh, I remember when I first went gluten-free, I also didn't believe that such a minute amount of gluten would be a problem for me. I checked my foods, but looking back I was lax about cross contamination and I didn't give my topical products a second thought. How wrong I was

Keeping a log is such a valuable thing to do, I think. I still do it when I get a mystery reaction that persists.

Did you determine that the puppy treats are the culprit, or are you still searching? I hope whatever it is, you feel better soon

[oceangirl]

Hi Patti,

I did switch to low-gluten puppy treats (can't find gluten-free yet) and still am feeling a little "reacty" so I'm not sure. It could just be from the initial reaction. I am feeling a little desperate and angry- it never seems obvious to me! That's why I am so scared to put anything in my mouth or on my face without conducting doctoral level research on it first!

Thanks for asking and take good care,

lisa

P.S. Your new picture is very nice.

[jerseyangel]

That's why I am so scared to put anything in my mouth or on my face without conducting doctoral level research on it first!

I hear ya! That gets so tiring

[dilettantesteph]

I thought I'd be best off posting this here so Momma Goose won't give me flack for using the home gluten test.

I decided that I should order a bunch of whole grains and grind them into flour myself. I figured there would be less of a chance of cross contamination that way. Also those bread mixes don't have much whole grain in them.

My order from Purcell Mountain Farms came yesterday and I was excited to get cooking. The first package I opened, amaranth, came out positive for gluten with that home test kit. I imagine it was below 20 ppm, so legal, but too high for us. Come on, how much processing could it have had, contaminated already?? It wasn't cheap either. They will give me money back on what I send back, but with paying shipping both ways, I am still out a lot of money.

Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

[jerseyangel]

Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

I know I do. I have gotten to the point where I don't eat many grains since I seem to do better without them. However, when I do use flours, etc, I stick to Ener-g which is also dedicated.

[oceangirl]

Hi again,

I've been using Glutino rice flour to make some shortbread cookies with homemade jam when I want a treat and I THINK this company is okay. IS it dedicated? Thoughts, anyone? The type I use is just plain rice flour.

I,too, eat almost no grains so don't do the substitutions.

Thank you!

lisa

[Mike M]

I thought I'd be best off posting this here so Momma Goose won't give me flack for using the home gluten test.

I decided that I should order a bunch of whole grains and grind them into flour myself. I figured there would be less of a chance of cross contamination that way. Also those bread mixes don't have much whole grain in them.

My order from Purcell Mountain Farms came yesterday and I was excited to get cooking. The first package I opened, amaranth, came out positive for gluten with that home test kit. I imagine it was below 20 ppm, so legal, but too high for us. Come on, how much processing could it have had, contaminated already?? It wasn't cheap either. They will give me money back on what I send back, but with paying shipping both ways, I am still out a lot of money.

Just a cautionary tale. I guess we need to get our grains from exclusive companies too. Since then I found that you can get amaranth from Nu-World Amaranth which is an exclusive company.

I feel your pain!!! Oh that is rich!!!!! If the nay sayers would just step back for just a minute and think about what the ability to test is really doing for ALL of us, I think they would humbly get on board. Think about it, in the past we (the consumer) had no way to hold these food/health manufactures feet to the fire and keep them honest. Besides, not even they had a good way to check the product they are producing and claiming to be gluten free. Not anymore, a lot of them and more and more will be testing and checking the product they are producing and we too can check the product. This is called checks and balance and will and is making it better for us all!!!!

[Mike M]

Gluten free Dog treats for those of us who are very sensitive and don't want to be handling other treats.....I have tested and use PLATO dog treats. The chicken and salmon strips tested negative several times now. Here is the web address. www.platopettreats.com I buy them at our local health food store. Hope this helps, Mike

[jerseyangel]

Lisa--about Glutino. They are a dedicated company and many, many people here report enjoying their products with no problems. I've never used their flours but for some reason their crackers make me ill. I'm ok with all the ingredients, so I really don't know what the problem is with them for me.

So many times things that "should" be absolutely fine cause me to react. There sometimes doesn't seem to be any rhyme or reason to it. Even too much of something processed in a gluten-free facility that I'm normally fine with can sometimes cause trouble, although I feel that goes back to grains for me and to a lesser extent, sugar.

[happygirl]

Oceangirl - there are a few gluten free dog treats at the pet store that I've seen. I'll share them when I go next time and see if you have the same brands near you.

Patti - I do fine with Glutino, but there are other gluten-free companies that I do not tolerate. I don't know what it is, because it doesn't seem like gluten, but one of the companies that people love (K) get me....I just can't eat them.

Stupid, stupid, stupid sensitivity!

[oceangirl]

Thank you everyone! Patti, it's interesting what you say about Glutino because I was eating my special cookies when the recent glutening happened. And I completely agree about amount of grain consumption. I can eat Tinkyada with no problem but not for days and days in a row.

So, maybe I just had too many days in a row with a cookie. Bummers. I will look for Plato's, Mike- thanks.

lisa

[Fiddle-Faddle]

Gluten free Dog treats for those of us who are very sensitive and don't want to be handling other treats.....I have tested and use PLATO dog treats. The chicken and salmon strips tested negative several times now. Here is the web address. www.platopettreats.com I buy them at our local health food store. Hope this helps, Mike

Most dogs respond beautifully to nuggets of their (gluten-free) kibble being kept in the treat jar and used as treats. They really don't seem to care WHAT the treat is as long as it's edible.

Somehow, the manufacturers have convinced us that dogs need treats that are packaged differently from their regular food...

[Jestgar]

Most dogs respond beautifully to nuggets of their (gluten-free) kibble being kept in the treat jar and used as treats. They really don't seem to care WHAT the treat is as long as it's edible.

:lol:

I have a second bag of a different brand of cat food. When the kitties are begging, they get a few of those crunchies. They are delighted at getting a treat! :lol:

[New2008]

Truly mind-boggling. Blows my mind.

And what's even more mind-boggling is the people who think it's really not that serious.

Very true. Most people don't understand how serious this is and how sick we can get. I am struggling with that now regarding my employer. They just say well if you are allergic to it don't eat it....well true enough but sometimes we don't know we are eating it.

[New2008]

Bad days, and I try not to dwell on them, but I did feel like the odd one out to start with.

It seemed to take me forever to get to where I am now, three years later. But I still feel I haven't quite got to where I want to be. I have had glimpses of what I want to be, bright and bubbly, but invariably I'm still stuck in my cocoon, and not as outgoing as I feel I should be. I'm very careful, and I get glutened occasionally, but more often than I would like.

The lucky ones can go onto a gluten free diet and from day one their symptoms are gone and they appear to be fine. That upset me the first few months. I tried very hard to be gluten-free, I made mistakes, and at times I had made mistakes when I couldn't even track back to where I had been glutened. I felt like a failure and I must have been doing the diet wrong and making big mistakes, as I just wasn't getting anywhere fast for a good year. I have given away soy and I just try to eat simply and healthily. When eating like this it is easy to track down the offending culprit. It makes a big difference, but there is still something I am missing. Corn?

The next thing I will have to do, is convert my whole house to a gluten-free zone. That is a big wish that is not going to happen anytime soon.

Cathy

Cathy,

Don't feel bad I am in the same boat as you. It is a uphill battle and at times I get mad that I have this. I get depressed and feel alone, however, I read the posts on this site and it helps me to feel better and to understand that I am not alone. I make mistakes in my diet and others do to.

I also feel as if there is still something missing and corn is what I thought too. Really, if I eat a meat and veggie diet I feel great but I have trouble staying on that type of diet. When do you feel your best?

Angie

[Del]

Sure am glad to read that I'm not the only one that's struggled with this horrible disease....I keep reading about all the people that have felt so much better in just days or weeks after going gluten-free...that can get VERY discouraging!!! I've been gluten-free for nineteen months and everyday is a struggle!! At the beginning of this year I definitely wasn't where I wanted to be but I could look back and see how much I'd improved.....the I got the flu....now it seems I'm back to square one....maybe two.

I do have a question....my pain has always been on the left side now after nineteen months I awoke this morning with NO pain in my left side but now it's on my right side.....has anyone else had this happen. (I'm not talking about a horrible pain, just a tiny, nagging pain.)

Del

[oceangirl]

Del,

I haven't exactly had that happen (my big, bad pain is always INTENSE on my left side and in my left hip bone.) But, if you just had the flu that could be impacting you. And, when glutened, I can have random pains all through my abdomen. In fact, I get this type of more what I call "IBSish" reaction just to too much roughage or too much of some kind of food like dates or something.

Did you take antibiotics when you had the flu? That could screw up you intestines.

Hmmmm... hope you feel better soon!

lisa