"Super Sensitive" Celiacs.....

[Jestgar]

... and get me to a point where I have many more good days than bad.

sorry you still have bad days, but thanks for saying this.

I made a conscious decision not to go for a walk today because I've been feeling so fatigued the last few days. I was starting to get a bit mopey about it, and you reminded me that it will pass...

[MaryJones2]

Right now I'm using only almond flour (NOT BRM, I get it online from a place called Honeyville). Of course I have every other flour you can imagine in my cabinet. I still use potato starch or potato flour if I'm cooking something that has a sauce, or for the occasional breading that I do.

As for bread, I rarely have it, but I've made this one once. I used a pan that was too big, but it tasted great! So, I bought a smaller pan and I'm going to make it again this week. I'm trying to get the proportions right to make a bigger loaf.

Open Original Shared Link

Yum. I'll try that. I have so many flours too and rarely use them. Tapioca is my breading flour. I've been making Namaste bread using a cast iron loaf pan and it's really good. I am going to buy a bread machine and try that because my husband has decided that he prefers gluten-free bread and I can eat a loaf a day.

[jerseyangel]

I made a conscious decision not to go for a walk today because I've been feeling so fatigued the last few days. I was starting to get a bit mopey about it, and you reminded me that it will pass...

Aw Jess....it really will

It took me a long time to not panic when I had a setback or a bad day. The old anxiety would take over, and I think what I was really worried about was that I'd suddenly be back to 'square one'. I have to remind myself to take a look back and realize how far I've come and how much better I am compared to before I knew what was wrong.

It's a real process, though, and it takes such a toll on us. Bet you're out there pounding the pavement before you know it

[GFinDC]

Well, back on the oats...

This one is just for fun.

Poison Oats Cereal video

Blurb: 7.5 minutes long

:A great new Poison Oats Cereal that you can give to your baby's your children and even your dog! Its made from all natural poison oaks...i mean Pwoiuson Oats, with a "T"...because k's are lame"

Open Original Shared Link

OK, about contamination though. I am thinking that the contamination issue with oats is mostly related to wheat flour dust that might be present in the processing facility. I think the wheat grain itself in whole form is very different looking from the oats grains. So it would be visible if you are using whole oats vs the kind that are cut up in little bits, (steel cut oats). Generally I eat the oats that are not cut up myself, so the presence of wheat grains in them would be something I'd see, as they look very different. Wheat flour though would not be visible so it would be best to get the oats from dedicated processing facilities vs those that also process wheat flour. Bob's Red Mill does have a dedicated gluten-free facility they use, and they sell gluten-free oats.

[lizard00]

It took me a long time to not panic when I had a setback or a bad day. The old anxiety would take over, and I think what I was really worried about was that I'd suddenly be back to 'square one'. I have to remind myself to take a look back and realize how far I've come and how much better I am compared to before I knew what was wrong.

Patti, you have been at this a few years longer than I, but I can relate to that. I went through a really bad phase where I found myself really, really, dare I say depressed, that I still wasn't where I thought I should be. But then I had to remind myself that even though I didn't realize it at the time, I was really sick, and now I'm not.

I think most of us here don't dwell on the bad days, which is good. Sometimes, though, it's nice to know that I'm not the odd man out and still having an occasional bad day.

[Kaycee]

I think most of us here don't dwell on the bad days, which is good. Sometimes, though, it's nice to know that I'm not the odd man out and still having an occasional bad day.

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

[lizard00]

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

I'm so sorry to hear that you're still struggling. Have you cut out dairy, too? I find that I can do very, very little grains. That might be worth a try for you. Have you had your vit/min levels checked? I started taking vitamin D a few days ago and I'm starting to feel like I have more energy.

But strictly speaking from food, I cannot eat dairy or soy without feeling it. I eat rice occasionally, and if I do, I can only eat it once in a short time frame, so I don't eat the leftovers. I've only cut out corn a week ago, so I can't really make a conclusion yet. But it's looking like I'll have to limit that if not do away with it altogether.

It took me awhile to come to grips with this, feeling like I'm taking even more out of my diet. But in the end, it's really not. I don't have a shortage of things to eat.

[Kaycee]

Lizard, thanks for your reply.

In the beginning, about 4 months into the gluten-free diet, I did eliminated three further things in my diet, it didn't seem to make much change. So I added dairy back, then a while later peanuts, and then finally soy. I found soy is the one that I have had most problems with, symptoms very similar to gluten, so I avoid that as much as possible. I did not cut out corn/maize as I didn't want to go there, I thought it would be quite hard as most alternatives have corn in them. But I think I am ready to go there. What difference would cutting out one more grain make, with the type of food I eat, it would be simple to keep track of that as well. Then I'm left wondering, hey, I've got a truck full of food in my pantry with corn/maize in it. Do I wait till I've finished them, or throw them out. Times are tough, so I might just have to finish what I have first.

Cathy

[mushroom]

It does get to be a dilemma; what should I eat versus what can I not afford not to eat, and what is making the difference anyway. After gluten and soy, nearly all nightshades (occasional potato and a slice or two of tomato in a BLT), and most outright corn--not including corn syrup--my husband asked if I wanted some corn on the cob. I said just a very small piece, and only gnawed off a few kernels, and it didn't feel right. On the other hand I've eaten a few corn chips and a cracker and not had any problem. But then there come those sleepless nights and the palpitations out of nowhere, and you think, oh sheesh, where did that come from? I hate the thought of a food diary but it might be the only way. Why do there have to be so many things???

[marciab]

A few months ago, I had stool testing for food intolerances by Dianos-Techs and was glad I did. It showed that I getting gluten antibodies still and that I was allergic to egg whites. I'd been making my own mayo with eggs so this was a shock. I thought I was fine with them. It came back positive for candida and some kind of digestive immune system problem too ...

Genova is another lab that looks at food intolerances .. does Enterolab look at all that too ?

I've finally concluded that I feel better if I stick to the low carb Paleo diet / low oxalate. I was on this and was feeling much better but then around Thanksgiving, because I was feeling so good, I decided to play around with grains, etc .. Now I just have to undo this ...

[lizard00]

Ok, it took me two days to decide to ask this question:

Do any of you successfully eat McDo's fries???? or Have any of you successfully eaten them?

My family was eating them the other night and I really wanted one. I didn't though, because I thought better of it. I really don't want this to become the "is it safe, is it not" debate... I just want to know of the "super sensitive", can any of you actually eat them?

[jerseyangel]

Liz! I've wondered this very thing!

Bottom line--I'd love to try them but I'm scared. I was at a McD's recently.....we don't have small children anymore, but my husband wanted to pick up something to take home. I went in with him and stood right in front of where the man was making the fries. From a CC standpoint, it looked pretty good to me. He touched nothing with his gloved hand at all.

In the end, I chickened out.....but that smell.......one of these days I may say to heck with it and give 'em a try.

[ang1e0251]

In the beginning, I ate the fries, no problem. But then I found this forum and the great fry debate. I made the decision not to have them anymore. The reason is I've become more sensitive as time goes on and I just won't risk it. I've put that in my catagory with "made in a facility that also makes...." I just don't do it. My local place makes fries for me and I'm OK with them. Or I make them myself, that's it.

[Kaycee]

McD's fries. I admit to eating them in the past. I haven't had any problems with them. I now have two sons working for them over the summer months, and they confirm that they only use the fryer for chips. On the NZ McD's website it says they may contain traces of gluten But I haven't had any for ages, and if I want chips I can make my own. Actually the worst thing that happened to me at McDonalds, and that was twice, was getting a bad re-action from their plain garden salad without croutons and without dressing. How would that happen? Maybe it was glutenous fingers handling the food. So much for going healthy!

Congratulations on your new President. We had it all over our tvs yesterday and it was incredible. My sons girlfriend from Virginia was glued to the tele from 5.30am onwards. Aparently your president is 5 days younger or older than our prime minister, and they both were elected into office within three days of each other.

Cathy

[jerseyangel]

Thanks Cathy

[MaryJones2]

I can't bring myself to try McDonalds. Maybe two times a year I will do Chick-fil-A fries. I have a mandoline with a matchstick setting and a small fryer. I take a few russet potatos and slice them up and fry. It takes maybe 10 minutes total. The only problem is that they never seem to make it to the dinner plate

[flourgirl]

Ok, it took me two days to decide to ask this question:

Do any of you successfully eat McDo's fries???? or Have any of you successfully eaten them?

My family was eating them the other night and I really wanted one. I didn't though, because I thought better of it. I really don't want this to become the "is it safe, is it not" debate... I just want to know of the "super sensitive", can any of you actually eat them?

I haven't read past this.....so probably some brave soul has already spoken....but....I have wondered about this many times myself! I'm too much of a coward yet...I'm so afraid of getting sick again. I understand that they are supposed to be safe....but....

[flourgirl]

We have found sweet potato fries in the grocery store...finally! You bake these in the oven and the flavor is yummy! Haven't had them in a long while and was so happy to find them.

[num1habsfan]

A little extra stress sure seems to set off a Celiac attack more easily than it used to :/

[lizard00]

I haven't read past this.....so probably some brave soul has already spoken....but....I have wondered about this many times myself! I'm too much of a coward yet...I'm so afraid of getting sick again. I understand that they are supposed to be safe....but....

I think the general consensus is that we're a little too cowardly to try. I've had them once since going gluten-free, but I can't say that I remember if they made me react or not. It was a long while ago, and I was going through feeling pretty sick most of the time. So, I probably felt sick when I ate them and wouldn't have noticed a difference.

Now that I'm actually starting to feel human, it's hard for me to take that risk. I react to pretty much everyone else's fries... so, I make them at home now. I'm getting surprisingly good at it.

[lizard00]

Liz! I've wondered this very thing!

What can I say, great minds think alike!

[rinne]

From what I recall of their fries, I can think of other foods I'd take a chance on before them, seriously.

I just feel so spoiled with the most delicious food lately that I wouldn't risk it.

As for fries I've made them at home and they were so good and doable I got ambitious and decided to make potato chips. Oh my, oh my, my first thought was so THIS is why they sell potato chips. They were amazing, my second thought was how could I have lived this long and never tasted them before.

Then I started the SCD.

[raisin]

Makeup is a constant topic among celiacs in general.. But I have yet to across a thread just about no-CC makeup.

Does anyone know of a brand with any line of any type of makeup that is safe?

(I am especially interested in eyeliner and base/cover up)

The only one I know so far: Softlips brand is 100% gluten-free ,and now makes colored lip tones with a light scent.

[Lori T.]

I was thinking it would be nice to have a thread where we can kick ideas around that work for us, as well as share our frustrations with others who understand.

My original thread on the subject was inadvertantly lost, but there was so much interest that I'd like to try again.

After being gluten-free for a good three and a half years, I find myself just as sensitive--if not more--than I was when I started. My reactions have gotten less severe, but they tend to drag on a lot longer. One thing that has improved greatly is the anxiety. Before I was diagnosed, I had full on panic attacks. I've not had a panic attack since going on the diet, and the near-crippling anxiety is all but gone after taking about 18 months to begin to improve.

I still can't tolerate things made on shared equipment with gluten, and so many of the products that are tolerated well by other Celiacs cause me to react. I had a real problem dealing with this for a long time, obsessing on trying to figure out "why?".

I think I have finally arrived at a place where I accept things the way they are--that this is me. I do wonder sometimes if it is because of the years I was ill and continued to eat gluten because no one knew what was wrong. Could be, I'll never really know.

Hi. Wanted to reply to your thread. Cannot eat shared equipment stuff either. In fact, found that the gluten-free products so starchy that they bind me. Not so much the cereals and crackers, but the bread, pizza, pasta. Told someone else on another blog that that stuff could plug an elephant. Had the panic attacks back to back to back for a long time. Alot of it was the stress of being sick all the time. Still get them when I have been glutened which is not often thank GOD. I found that an allergist was the best thing I ever did. There are others on this thread reading this and I have told my story of allergies before, but for those not in the know, the list of allergies for me started as follows: corn, tomatoes celery, onions, carrots, nut, soy dairy, casein, annatto chocolate, carob, gums, msg, most frouits, artificial sweeteners, artificaial colors, alcohol, seeds, spices, cucumbers, cabbage, peppers. The environmentals were: mold, grasses, treees, diustmites, cat/dog dander, most soaps/cleansers/detergents. Long enough list. After finding the allergist, was living on rice,potatoes and cheese. Stomach issues improved, anxiety was getting better, skin improved, but got bound up unmercifully. Went back to her, she sent me to the GI who diagnosed me and I found nutritional advice there that helped immensely. Upped the lower carb veggies and fruit and water and the works are working much better . I think that we avoid so much too for so long that our bodies tend to reject things when tried again. I know I left carrots alone for a long time and then had some dip with a couple of carrots just to try it out. Did o.k. So I figured it was ok to start eating them again. Love them, so started taking them to work with me. That was a BIG mistake. Stopped eating them, not the dip and was fine. True intolerance?? Just think that too much of a good thing becomes a bad thing. Another thing to consider as if we don't have enough already is the fact that one autoimmune problem probably means you have more than one. A rheumatologist can rule out any others. But, lastly, I think that a lot of times life gets to all of us. Just think of all the things that come with the gluten-free diet and Celiac diagnosis: doctors that many of us have never heard of, dietary restrictions, learning the diet itself, learning to read labels, deciphering the names of some ingredients to identify offenders which gives us a long shopping experience, testing up the wazoo and frequently, bowel issues and other organ issues, vitamin deficiencies, aches and pains when glutened. You know the list. This alone is a nerve jingler. Then when all of this gets to us, we go in a cycle of depression, eat, deeper depression, no eating, deeper depression, binge eat. Whatever your cycle, you go off your norm. And like me, eat something maybe you have not eaten in a long time and set yourself up for disaster. Too bad there is not a therapist who has a specialty in just Celiac who actually has Celiac to talk to. I guess that is why we talk to each other. No one understands the frustration better than we do. One more thing as if my note is not long enough, even if you had your gallbladder out, which I have had mine out, you can experience pain like you were having an attack. Had a problem with not digesting things, pain in the right abdomen through to the back and discovered a web site that dealt with all my symptoms:gallbladderattack.com. Alot of things that were off with my body were due to a need to change my diet again because of the inability to digest fibers and other stuff that are staples of the gluten-free diet. Thought I would mention it because one the people answering you had a question about pains that sounded like me. Take care.

[happygirl]

Do any of you successfully eat McDo's fries???? or Have any of you successfully eaten them?

I used to --- but would react sometimes....finally had to just stop. I think it was a cross contamination issue, as I didn't get sick every time. I haven't eaten them in 2-3 years.

We have our own little fryer - and we buy the Ore-Ida frozen french fries and fry them up - no difference (other than convenience!) compared to fast food french fries. It only takes a few minutes.

Oven baked fries are just not the same.