"Super Sensitive" Celiacs.....

[TES]

I had never even thought about that....guess I was willing to do ANYTHING to stop coughing my guts out! I haven't had honey for days but I guess I'm still paying for it!!!

Rub your feet, (massage) with Vapor Rub, put socks on , and see if your cough improves. I have a couple friends that swear it gets rid of their cough. I haven't had a cold in years, so I haven't tried this. Let me know if it works!

[jerseyangel]

Rub your feet, (massage) with Vapor Rub, put socks on , and see if your cough improves. I have a couple friends that swear it gets rid of their cough. I haven't had a cold in years, so I haven't tried this. Let me know if it works!

I've heard of this, and would love to know if it works too. I don't get colds all that often (knock wood) but when I do they always end up with a lingering 2-3 week cough.

[lizard00]

Rub your feet, (massage) with Vapor Rub, put socks on , and see if your cough improves. I have a couple friends that swear it gets rid of their cough. I haven't had a cold in years, so I haven't tried this. Let me know if it works!

I tried this with my son a few weeks back when he had a cold... I think it made his cough worse. In any case, it didn't help him.

[mayfaire]

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.

[jerseyangel]

I tried this with my son a few weeks back when he had a cold... I think it made his cough worse. In any case, it didn't help him.

That's what I was afraid of Hope he's feeling much better!

Thanks Liz

[flourgirl]

Hi all. I'm catching up on several pages. Nice to know there are others with the same difficulties, and sometimes give me "food for thought".

I've had so many problems I've given up on a lot of things that I'm sure would be safe....but I'm not THAT sure. I'm going back to journaling.....everything I eat, sleep patterns, symptoms...all of it. I not longer am even tempted to eat any kind of bread, cereal...so many things. I have to wonder.....am I still dealing with aftereffects of something I'd eaten days....weeks....months ago? Is is something in my regular diet that is escaping my notice?

I read the threads about candida...and I'm skeptical. Someone posted a thread asking how to test, besides the spit test. I don't think anyone answered because the thread has not come up again in new posts. I'm at a point where I'm skeptical of just about anything.

One of you mentioned strange eating habits long before diagnosis, also mentioned eating disorders. I believe that a LOT of those disorders are nothing more than the struggle between eating to stay alive and the body knowing that those very foods (that we "need") are killing us. I stopped eating breakfast at age 11. By the time I was 14 or so I stopped eating lunch. I survived many, many years eating only one meal a day. I truly was living on coffee. Healthy? No, but not sick all of the time anyway.

I guess I'm just rambling. Feeling very frustrated myself these days and am tired of it all. Mostly I realize that on a daily basis it isn't that hard. I just want to see better results!

Thanks for listening. It's nice to have a place to go and share the burdens

[jerseyangel]

Yeah Theresa, I also stopped eating breakfast because I didn't want to have to deal with stomach problems at work. Then it was lunch--it got so that I would only eat when I could be home (like in the evening), and before I'd eat anything I had to think ahead.

Not a great way to have to live, but I truly think that my anxiety and panic attacks are related to this--it all started when I was in my late 20's. I had lots of stomach aches as a child that seemed to disappear in my teens and early 20's--now, of course, I realize that this could very well have been the "honeymoon" period of Celiac.....a lot of things make sense now.....

Talking about grains before.....I needed to be completely grain, corn, and egg free for the first 2 years I was on the gluten-free diet. The food diary is a great tool for figuring this stuff out. I'm still very sensitive to several "other" foods but I was able to re-add rice, corn and some egg (in recipes).

[mayfaire]

I thought I could keep my sanity if I could just hang on for two weeks of the diet change, then I had to change that plan and just hang on for the 90 days...

I am 52 yrs old and March 4th will be 90 days of going gluten free for me. Initially I had a very bad experience with several different medical practioners before I did some reserch on my own and realized I have Celiac. Although I have had many symptoms of gluten sensitivity over the years (bloating, dry skin, etc) it wasn't till Sept. of this year when I went thru the nightmare of misdiagnosis of kidney stones among other things to feeling like my intestines were suddenly taken over by aliens that I knew I was very sick. From what I've been reading ("How Gluten Sensitivity Can Undermine Your Health" and "Celiac the Hidden Epidemic") I think all my villa must have flattened because I initially couldn't consume anything but water with maple syrup or honey. After a week of that I was able to introduce avocados then basmati rice and some baked chicken mixed in a blender. Right now I still can't do dairy, soybean, nuts or corn in addition to gluten, so it is frustrating when I go into the health food store and they want to sell me gluten free stuff I can't eat yet. I have good days and bad but feel depressed that I could still be sensitive to most foods after thinking I was going to be better sooner. I am able to take liquid iron and sub-ligual vitamin B12, it's lonely and exhasting trying to figure all this out on my own. Thanks for letting me vent.

[jerseyangel]

Hi Mayfaire--I'm so glad that you found us

It sounds like it's been a very difficult road for you, but now that you know what the real problem is you're doing what it takes to heal. You will get there--there's light at the end of the tunnel. It's not uncommon for the course of healing to be like a rollercoaster with some days being better than others.

We're all here to help.

[Del]

I'm glad you mentioned this...thought people would think I was crazy if I said anything about it.

Weeks before I had a cold or cough my Avon lady called and told me about rubbing Vicks on the bottom of my feet for a cough. So when I was coughing my guts out I tried it....sometimes it worked and other times it didn't!!! (The first time I tried it I was positive it wouldn't work...I was talking to myself telling me how crazy I was for even trying it!!!! And, darn, if it didn't work!!!) It was just hit and miss with me! Definitely worth a try for anyone!!!

[ravenwoodglass]

One of you mentioned strange eating habits long before diagnosis, also mentioned eating disorders. I believe that a LOT of those disorders are nothing more than the struggle between eating to stay alive and the body knowing that those very foods (that we "need") are killing us. I stopped eating breakfast at age 11. By the time I was 14 or so I stopped eating lunch. I survived many, many years eating only one meal a day. I truly was living on coffee. Healthy? No, but not sick all of the time anyway.

I

Me too. By the last 10 years before I was diagnosed I like Patti stopped eating unless I was home for the night. I would sometimes take Carnation Instant breakfast, which I found out later was gluten-free, and mix it with my coffee in the morning just to get some nutrition to be able to work. It was the only thing I knew would not upset my stomach more than it was always upset. Yea breakfast, 2 immodiums with that mix, lunch 2 more immodiums then dinner and the night in a the toilet. It too bad doctors couldn't listen. But of course it was just 'my nerves'. Yea right..... Okay vent over but I do think it was the length of time it took for diagnosis that strongly contributes to how sensitive we end up afterwards. One thing about this board, it makes you realize how not alone you really are in all the struggles.

[Mike M]

Just a quick note here, I got a chance to call and talk to the folks at Domata living flour this afternoon. I have now been using this flour for over a week and have not had one issue. This may not be a good flour for everyone (it does have corn starch in it and other things) but if you want to avoid Wheat, Barley, Rye and Oats, they got it covered. She said every batch is tested and certified below 5 parts per million. There are no other grains handled at this facility the gal told me, they even use a positive pressure filled mixing room (this keeps out any chance of drafts from the outside). They also have a field walker that goes out and checks the fields to make sure before harvesting that there are no other grains growing that could get mixed in at harvest time. Anyway, wanted to let all know about this. They have a regular multi- purpose cup for cup mix and a pizza flour mix. I am not posting to compare this to any other flour, just want to let the super sensitive know (and others that want to minimize their risk) that there is a WBRO celiac friendly flour (tested down to below 5 parts per million) that is out there for us. All the best, Mike

[jerseyangel]

Thanks Mike

[flourgirl]

Hey Raven.....it's funny you mention the Carnation instant breakfast! There was a long period of time when these were some of the few things I could tolerate....years ago! My doc at the time was telling me I had ulcers, and milk was considered good for that. I stopped buying them when I thought (at the time) that they were getting expensive. Good to know they are gluten-free...I'll have to look into those again!

[lizard00]

Just a quick note here, I got a chance to call and talk to the folks at Domata living flour this afternoon. I have now been using this flour for over a week and have not had one issue. This may not be a good flour for everyone (it does have corn starch in it and other things) but if you want to avoid Wheat, Barley, Rye and Oats, they got it covered. She said every batch is tested and certified below 5 parts per million. There are no other grains handled at this facility the gal told me, they even use a positive pressure filled mixing room (this keeps out any chance of drafts from the outside). They also have a field walker that goes out and checks the fields to make sure before harvesting that there are no other grains growing that could get mixed in at harvest time. Anyway, wanted to let all know about this. They have a regular multi- purpose cup for cup mix and a pizza flour mix. I am not posting to compare this to any other flour, just want to let the super sensitive know (and others that want to minimize their risk) that there is a WBRO celiac friendly flour (tested down to below 5 parts per million) that is out there for us. All the best, Mike

Just on a side note, Z Pizza (if anyone has one near by) uses crusts made by Domata, and they are so STINKIN good. Our location has also completed the GREAT program, which is a certification program to ensure CC doesn't happen. For those of you that have purchased their flour, do you prefer it over other blends? I've been curious about it for awhile.

[GFinDC]

I thought I could keep my sanity if I could just hang on for two weeks of the diet change, then I had to change that plan and just hang on for the 90 days...

I am 52 yrs old and March 4th will be 90 days of going gluten free for me. Initially I had a very bad experience with several different medical practioners before I did some reserch on my own and realized I have Celiac. Although I have had many symptoms of gluten sensitivity over the years (bloating, dry skin, etc) it wasn't till Sept. of this year when I went thru the nightmare of misdiagnosis of kidney stones among other things to feeling like my intestines were suddenly taken over by aliens that I knew I was very sick. From what I've been reading ("How Gluten Sensitivity Can Undermine Your Health" and "Celiac the Hidden Epidemic") I think all my villa must have flattened because I initially couldn't consume anything but water with maple syrup or honey. After a week of that I was able to introduce avocados then basmati rice and some baked chicken mixed in a blender. Right now I still can't do dairy, soybean, nuts or corn in addition to gluten, so it is frustrating when I go into the health food store and they want to sell me gluten free stuff I can't eat yet. I have good days and bad but feel depressed that I could still be sensitive to most foods after thinking I was going to be better sooner. I am able to take liquid iron and sub-ligual vitamin B12, it's lonely and exhasting trying to figure all this out on my own. Thanks for letting me vent.

If the rice is working for you sounds like you are making progress! I really like quinoa as an alternative, ir has better protein in it than rice. How about soups? Can you do homemade soups like pea soup or lentil soup yet? If you keep a list as you go of the foods you can eat, that would be helpful. Since you are on a pretty restricted diet, you can consider adding one new food every other day or so. If you have a reaction to it then put it on your bad list and try a different food. I also like adding a bit of psyillium husks powder to food for fiber. I know the honey and water worked for you but I think I would have a hard time with that myself. I try not to do sugar more than one day in a row.

Welcome to the gluten-free team and stick around for the victory party afterwards!

[ravenwoodglass]

Hey Raven.....it's funny you mention the Carnation instant breakfast! There was a long period of time when these were some of the few things I could tolerate....years ago! My doc at the time was telling me I had ulcers, and milk was considered good for that. I stopped buying them when I thought (at the time) that they were getting expensive. Good to know they are gluten-free...I'll have to look into those again!

Make sure you check to make sure they still are gluten-free. At the time I used it all were except for the chocolate malt but that may have changed.

[mellajane]

I work in a restraunt and i am very sensitive as well. The kitchen guys laugh at me because im so crazy about contamination. But its real some take it better than others. When i meet someone who says yeah im not that sensitive i do feel like ahhhh..wish i wasnt. I dont get as sick as i used to but cross contamination does effect me.I have been wheat and gluten free for almost 5 years now. I also have or should say had high anxiety problems. It used to get me sick and trigger my gastropersis. It does seem as if since controling my celiac better i have not gotten sick as much.My anxiety is much more chill. Before i could not even travel to see my family now its okay....

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.

[julirama723]

This is such an interesting and enlightening thread! I just have to post!

I'm not officially diagnosed with celiac disease, and I doubt I ever will be. I think it's too late to diagnose me now, since I've been gluten-free for a few months, and it turns out that I've got a selective IgA deficiency--discovered by my allergist, something which my GI never bothered to investigate while there was still the minute chance of testing positive. But I digress...

I can't say that I'm overly-sensitive to gluten, though I do notice that when I do get glutened, the attacks last longer and my symptoms are more severe, which seems pretty typical, based on what I've read. My problem is that I am becoming overly-sensitive to EVERYTHING! I go back and forth on whether this was pre-existing or something that's developed. It could be that the gluten was such a huge problem that it covered up all of my other food problems. Or perhaps now my body is cross-reacting to other proteins and foods?

I've always had problems of various sorts with grains. As a kid, all I ate were carbs, I was seriously addicted. I also had migraines constantly, usually one a week. If I ate too much cereal too early in the morning, I'd end up with a migraine. I'm not the "typical" celiac case, as I gain weight, LOTS OF IT, when I consume gluten. In fact, that was one of my first symptoms--weight gain for no logical reason. Since I began having symptoms, I'd gained 35 pounds.

So fast forward to this past fall, I figure out I have a gluten problem. I give up gluten, I'm good for a couple of weeks, then I get slammed with dairy intolerance. I've been eating cheese my whole life, usually on everything, but didn't notice that dairy made me feel awful until I was 27! A few weeks later, I notice that corn gives me awful symptoms, almost as bad as if I'd eaten gluten. Out goes corn, soon followed by rice. Eating whole grain rice makes me feel like glass is going through my insides. A couple of weeks later, a run-in with soymilk and soy cheese cause me to swear off soy for good.

During Christmas break I felt wonderful, I stayed away from these problem foods, but did eat a bit of rice flour in some Christmas cookies I'd made. I'd eat a few a day (they were small, I cut them out with a shot glass ) and I had no problems! A few weeks later, even rice flour hurts when I eat it. (Maybe too much of a good thing? I don't know if it was the amount but perhaps the frequency?) Then I was glutened, and I was seriously out of commission for about 10 days. Lethargy, GI problems, fatigue, brain fog, migraines, the works. Suddenly, it seemed like EVERYTHING I ATE made me sick. I had a stretch of diarrhea that lasted about 2 weeks, culminating in a marathon bathroom session that actually caused me to miss a day of work, as I couldn't venture from the toilet for more than 20 minutes.

I'm now down to vegetables, meats, eggs, fats. I can have a glass of wine on the weekends with no adverse reactions. I feel SO much better, but of course, this way of eating takes preparation and lots of planning. I know this works for my body because just in the past month or so, I've lost about 15 pounds, it just dropped off me. (My body retaliates by making me fat when I eat something it doesn't like. )

I don't know if I'll be able to add any of those foods back in. I think perhaps the fructose malabsorption might be temporary? I had increased my fruit intake dramatically since Christmas, as I'd had to give up most everything else.

I'm not sure if I react to minute amounts of gluten, if I'm extra-sensitive in that sense. I can't eat any processed foods to speak of, but I don't know if that's a CC issue or because of another food-intolerance, or both.

So that's my tale! I'm definitely sensitive. I'm just hoping I don't lose any more foods...

[mayfaire]

Hi Mayfaire--I'm so glad that you found us

It sounds like it's been a very difficult road for you, but now that you know what the real problem is you're doing what it takes to heal. You will get there--there's light at the end of the tunnel. It's not uncommon for the course of healing to be like a rollercoaster with some days being better than others.

We're all here to help.

I hope I'm using the reply button correctly. Just wanted to say thank you jerseyangel for the encouraging words, I have been trying to keep an even keel all this time and didn't realize how scared I've been till I read .."light at the end of the tunnel" and "healing" (gave me a good cry)

[mayfaire]

If the rice is working for you sounds like you are making progress! I really like quinoa as an alternative, ir has better protein in it than rice. How about soups? Can you do homemade soups like pea soup or lentil soup yet? If you keep a list as you go of the foods you can eat, that would be helpful. Since you are on a pretty restricted diet, you can consider adding one new food every other day or so. If you have a reaction to it then put it on your bad list and try a different food. I also like adding a bit of psyillium husks powder to food for fiber. I know the honey and water worked for you but I think I would have a hard time with that myself. I try not to do sugar more than one day in a row.

Welcome to the gluten-free team and stick around for the victory party afterwards!

Thank you for the ideas, GFinDC, I've been making my own chicken broth but am too sensitive to eat legumes right now, my sister mentioned quinoa also, I will give it a try.

It is a relief to read some of the experiences in here, it sounds so much like my own experience--I try to explain what is going on with me to my family but it really baffles most of them.

[campinggirl08]

Hi everyone,

I'm new here and wanted to thank you for this thread. I'm just beginning my journey in discovering and accepting the level of my gluten intollerance. I've been severly lactose intollerant for over 20 years and have had issues with gluten for the past few years. They've gotten worse and it's time for me to get serious about avoiding it. Been feeling very bloated the last couple of weeks and have trouble sleeping.

Looking forward to learning more and getting tips from everyone.

-Dee

[rumbles]

Copied/pasted from Nestle's Carnation Instant Breakfast web site FAQs (hopefully their

web site is up to date):

http://' target="external ugc nofollow">3. Do CARNATION

[Gentleheart]

Just a quick note here, I got a chance to call and talk to the folks at Domata living flour this afternoon. I have now been using this flour for over a week and have not had one issue. This may not be a good flour for everyone (it does have corn starch in it and other things) but if you want to avoid Wheat, Barley, Rye and Oats, they got it covered. She said every batch is tested and certified below 5 parts per million. There are no other grains handled at this facility the gal told me, they even use a positive pressure filled mixing room (this keeps out any chance of drafts from the outside). They also have a field walker that goes out and checks the fields to make sure before harvesting that there are no other grains growing that could get mixed in at harvest time. Anyway, wanted to let all know about this. They have a regular multi- purpose cup for cup mix and a pizza flour mix. I am not posting to compare this to any other flour, just want to let the super sensitive know (and others that want to minimize their risk) that there is a WBRO celiac friendly flour (tested down to below 5 parts per million) that is out there for us. All the best, Mike

Having read all the posts on how good this product is, I sure hate that they had to use cornstarch. I would love to be able to look forward to using this mix someday. I wonder why such careful companies like this make those kinds of executive decisions. I realize that a few people are also allergic to tapioca starch or arrowroot starch or potato starch as well. But I am pretty sure that a much higher percentage of people are allergic to cornstarch than all those others. I've not personally read of anyone allergic to arrowroot, for instance (except people who can't have any starch at all). Just wish they would have chosen a different one. Oh well. Can't have everything!

[Mike M]

Having read all the posts on how good this product is, I sure hate that they had to use cornstarch. I would love to be able to look forward to using this mix someday. I wonder why such careful companies like this make those kinds of executive decisions. I realize that a few people are also allergic to tapioca starch or arrowroot starch or potato starch as well. But I am pretty sure that a much higher percentage of people are allergic to cornstarch than all those others. I've not personally read of anyone allergic to arrowroot, for instance (except people who can't have any starch at all). Just wish they would have chosen a different one. Oh well. Can't have everything!

Hello Gentleheart, I'll betcha if you give them a call, they would consider a small special run for you and leave out the cornstarch. I could be wrong. They seemed like really nice folks. If you don't feel like calling them, let me know. I will call. All the best, Mike