mela14

I never thought of chestnut flour....i react to so many of the other flours. I would love to give that recipe a try. let me kow if you can post it!

i haven't had carob in a while so I don't remember how that sat with me...but will look into it next time I am out looking for something sweet.

thanks,

2 weeks ago I went to a new hospital for my monthly IGG infusions. I ususally spend about 4-5 hours doing the infusions and always bring my own snack. It's ususlly done in the drs office as he has the facility for it.

Well, I thought it was so nice of the nurses in the hospital to bring me a patient menu and ask what I wanted for breakfast and lunch. I told them I didn't want anything but a nurse came back with a muffin. I told her that I was gluten intolerant and refused it. she offered to get me some fruit which I thought was nice but I already had a banana with me. She then told me that my lunch would be a gluten free one as she called the nutritionist and requested one for me.

I thought that was soooooo nice. I didn't make it to lunch....they were late and i wasn't waiting around after my infusion. But....at my next infusion in 10 days I will make sure and double check everything even if they say it is gluten-free!!!!

You just have to always be on your guard.

Hi Westie,

You are very lucky that you have found someone who is taking the time to understand what is going on in your body.It should at least get easier being with him....so that you can enjoy each other's company instead of stressing over a meal.

Also, being a doctor probably makes it easier for him to grasp and understand. My ex was a physician and was always on board and trying to help with my ailments....too bad we hadn't figured out the gluten thing yet.

My hubby though, has been there through the entire process and has seen first hand how sick I get. Before we knew what was going on I was running from dr to dr as sick as a dog! I would moan in bed thinking I was poisoned! This went on for years...........until this past November when the first mention on gluten wa brought to light.

I feel that at least if he understands it makes it that much easier. I know he always has my back and its always coaching me when we are out with people. He will stand up for me and say that I can't have something or gently remind me not to eat something suspicious. It has been a learning experience and I still don't have it right....but I am trying every day.

You are so right about the senstivities to preservatives and food coloring and other allergies. I mostly go organic but haven't gotten all the food intolerances down pat .....so lots of gut issues are still at the surface. A few accidental ingestions are teaching me to scrutinze even more.

next week I am attending a local support group meeting and hopefully i can continue to learn form other's experiences and perhpas share them here.

It's not easy but having a caring partner helps! I am so glad that you found one! Please keep us posted............epsecially if you here bells!!!!

Take care,

good luck! Hope you feel better soon.

I too gave up smoking about 5 months ago..........just when I found out about the gluten issue. I just wanted all the toxins out of my body! I remember having a cigarette late one night and saying to myslef and my hubby......"I'm not smoking this crapy anymore!" And that was it........I stopped cold turkey. My hubby couldn ot believe it and was even afraid to bring it up thinking......he might remind me to smoke so we never dsicussed it until recently.

anyway, the reward is my lungs are healthier............

now,to work on the rest of my body!

I have been craving a piece of white chocolate. Dark choc does not do well with my bladder. Does anyoe know of one that is gluten-free and soy free? Dairy free would be good too but not sure if that can happen?????? hmmmmmmm

If I have a small peice ....a little dairy will probably not upset me...sometimes I have a drop in my coffee and am ok with it. A full glass.........well that's another story! (I'ld be sick for days!)

thanks,

"Coach" seems to work wonders for me! I just got 3 new bags and a beautiful wallet for my birthday 2 weeks ago! I picked them all out myself!

I just put in new shoe shelving in my closet....so there's a home for my new shoes!

Starbucks espresso always does the trick for a quick inexpensive pick me up!

but the best reward is a day when I actually feel OK to go out and do things with my nephews, family and friends. It makes me feel like the old me.

Now if I could just turn back the hands of time!

Hi Casnco,

boy is it tough. thanks for sharing your experiences. It just makes me realize how serious and how much harder I need to work at this. Not that I want anybody to be sick from this....but knowing I am not alone and have a place to come to talk....makes me feel a little less desparate.

last night was bad....as I woke up at 3:00am with muscle pain and vertigo....One of my telltale gluten signs!

This way of life is new to me ...I'm sure I will keep learning as I go.

take care of yourself. good luck with the wedding!

Thanks Susan,

I'm already doing a very plain diet. I can't even have the rice. It is too starchy and blows me up!

I found that the figs I was having......were making me violently sick. They WERE dusted with flour! Who knew....thank goodness Stephanie pointed it out to me ...I stopped eating them and was finally able to sleep through the night....without getting up sick at 3 am....

I am watching everything I eat....but today got sick at a catering hall restaraunt. I placed a post elsewhere.........but very quickly....I took all the precautions and ate what I thought was OK. then got sick. The only thing I could think of is cross contamination....I am realizing more and more that I am sooooo sensitive to the smallest amount and that most people do not go to the extreme that we go to.

Hopefully, this won't be as bad as during the week. I just can't take much more.

I have lots of functions to attend in the next few weeks.......I am learning the hard way how to do all this. Maybe I should just stay home......

Has anyone just given up on eating out?

I thought I did everthing right and still got sick.

I called ahead to the catering hall.........the hostess spoke with the manager and had plain grilled chicken and eggplant and a salad of baby greens..no dressing.

20 mintues after I finished my food I started to feel sick. All the typical gluten reactions for me. Muscle pain, light headed, stomach pain, eventualluy bloating.

I think I am at the point that I should just not eat in restaraunts...especially catering halls. I have had some good restaraunt experiences but not enough to have them outweigh the bad. I did everything I thought would help me to prevent getting sick...short of stand there and watch them prepare it..........and still got gluten. The party was fun and I just wanted to spend time with old friends like we used to.....and not be the poor pathetic sick one. At first I got all the..."my god....you make me sick...you are so skinny".......I'm sure a lot of you have been there...I would love to trade place with someone who is a little heavier and can eat whatever they want. Being this thin is NOT worth the pain I go through. I guess some people are clueless.......

Anway, the salad was great. The chicken was fresh and grilled with nothing on it. the same for the fresh eggplant. Neither had a drop of anything on them. My friend went to lengthy measures to make sure there was something at the brunch for me to eat. The only thing that I could think of is cross contamination. There were plenty of dishes that use flour for cooking.....especially their other chicken dishes. I'm sure that the meat was placed on the same table as all the other stuff.

I even took nuts and a banana just in case I wanted something else......(I ate the nuts for desert!)

Is it time to give up eating out? Or at least catering halls?

I am finally realizing that I am more sensitive than I thought...or wanted to accept. It's now been 5 months that I am gluten-free and although I am happy I finally found out what is going on...It is SO very hard to get it right! I am frustrated with this whole situation and upset that I am not better at it. I need to learn how to do it better!

To all of you that have good friends that are accomodating and helpful....that's great! I went to my best friends sister's baby shower today. It was a 2 hour drive and I picked another friend up along the way. they both know about my food intolerances and are always so helpful. This party was at a catering hall so I called the place ahead of time and my friend discussed my dietary needs with the banquet manager. They assured me they were making everything according to what my friend explained my restrictions were.

I left early this morning for the party so I took a bagful of raw nuts and a banana in my bag. In light of all the mishaps I have been having I wanted to be real careful. I can't afford to keep getting sick the way I have been. I takes days out of me and gets me totally depressed!

anway, the brunch looked great but of course I did not have anything. I had water when they made the toast as I did not want to even sip the champagne. The waiter knew of my needs and brought out a beautiful salad of baby greens with tomatoes...no dressing but a fresh bottle of olive oil on the side.I was so excited because that's exactly what I do at home! He thten told me they were grilling my plain chicken breast (naked) and grilling some plain eggplant. Great! when it arrived it looked good. I was finally able to relax and enjoy my meal. I knew it was fresh...no preservatives......they assured me and it looked like a fresh piece. I ate every last piece and was enjoying a girls afternoon. My friend came over and saw that I was eating....she was so nervous about the food for me but felt better once she saw that they had gone the extra mile. She then told me that she had a bad of fresh salad in her mother's purse just in case they had dressing on my salad. I thought that was so sweet.

then it hit........2o minutes after I finished eating I started to feel light head, disoriented and racy. My heart was beating fast and then the muscles in my legs started to feel such pain. I couldn't even stand up. I felt that I had swallowed poison. The typical gluten feeling! then the stomach pain started. Of course I got upset but didn't want them to see. My other friend who was sitting next to me saw that I didn't look good and asked what was going on. She even offered to go home right away. I hung in there and stayed another half hour....

while we were driving home the friend that threw the party called me on my cell to check on us and make sure we had a nice time. Seeing all that she went through I didn't want her to feel bad so I didn't say anything. I told her the party was fun and it was nice being all together.

What happened?

I'm sure I must have gotten cross contaminated.......They had so many dishes....all of which had some sort of flour. It's possible that the chicken breast was cut or pounded on the same table as the chicken rollatini, or eggplant parmigiana, or chicken francese, etc.....

My gut is now bloated and sore and I still feel weird.the muscle pain is better but still achy.........Maybe becasue it was just a little bit this won't be as bad as a full blown "glutenization"....I'm just so tired.............

I have 2 communions....one graduation, one 70th birthday...all within a month.

I am so happy that I finally know what is going on.....but it is so hard to get it right. I think that the only smart thing to do at the next party is not eat! I think it's different eating at someones house that you know....but with a catering hall....it is so hard to make sure that they don't cross contaminate. what a nightmare.

I've read about refractory sprue....but don't even want to to there with those thoughts!

I'm hoping that with a more stringent diet all of us can feel better.

One thing for sure is that when I accidentally ingest gluten my body is such agony. The fibro is always there but eating that "poison" just exaccerbates it!

Let's hope for better days.

Anxiety and stress will make the cystitis worse but it has to be there to begin with...for whatever reason. If you are lacking in hormones not only will it cause vaginal atrophy but it will do the same to the bladder. I think the estrogen helps to keep the bladder supple, which in turn causes less pain. Imagine how your bladder would hurt if it was dry and crackly...with all the fluids that pass through it. For me, I have to make sure that my diet is NOT acidic or my bladder acts up. The estrogen has made that better. I am now able to tolerate some veggies, like tomatoes (in moderation) and not be in agony!

I'm glad that you came out of that horrible bladder experience....whatever the reason was.

Hang in there!

I agree with you about dicussing it and it's something that we shouldn't be ashamed of. The point that I was making is that even though I discussed it with the waitress and my hubby discussed it with them before throwing the party I still got glutenized. I don't think most servers or chefs really know about gluten and all the precautions needed to take when dealing with someone who is intolerant to it. they also don't see how sick we can get. Unless of course you get a restaruant that caters to people with special dietary needs.

I always tell my server of my needs. There have been times that after they brought me the food I knew something was wrong so I wouldn't eat it. Not wanting to upset the eveneing I would make sure that I ate the plain salad. All in all, it still seems like such gamble to me. Unless I actually see the food, how it is prepared and handled I won't really know until hours later.

A few months ago I ordered grilled chicken in a restaruant. I had discussions with the waiter about my dietary needs. I had the waiter talk with the chef. They assured me everything would be ok. The chicken came back grilled with all types of spices on it. It was also not fresh as they assured me it was. It was one that was previously frozen (with all those preservatives!). i won't go to that retaraunt again!

I guess if you find a restaraunt that you know is safe...it's another story.

I've also had experience with friends that know about my needs. I've gone to dinner at their houses after discussing my restrictions. You won't believe the dinners that were prepared! I got so upset and nervous about one particular dinner that I finally just came out and told my friend that I could not eat her food. I ran home....a few doors away and was able to quickly get some chicken. the evening was saved and we had fun anyway. In the end she apologized for not understanding enough. Although we had discussed making PLAIN porkchops she thought that she would marinate them in bottled dressing for flavor. Not knowing that that ingredients in the bottle were like poison to me. when I told her that I couldn't have the marinate she proceeded to wash it off! she proudly told me that it had been marinating ALL day! And this is someone who knew all about my dietary challenges as I had been reporting back to her almost daily.

In the end we have to be our own detectives.......and are responsible for ourselves.

Again, it's not something that we should be ashamed of though. we just have to scrutinze everything we eat and make sure we know where it comes from.Taking something along with me in my bag is something that I'll do....just in case there is nothing there that I am comfortable eating...especially since it is hours from home!

Thanks Westie,

I really needed that hug and your email was so heartwarming.

You are right about the sulfites..........that's why I don't drink wine anymore.

So between the gluten and the sulfites I felt awful!

Thanks for the heads up on the cranberries I will look for them and try them when the time is right. I found raisins that are also free of preservatives and will try them as well.

This board has been such a great place for learning and sharing experiences. Where else can you get all this information at your fingertips? I had been going around in circles for years....so sick...with no help from doctors until one dr found something in a blood test that another dr took.

Sometimes, I sit back and relive old incidents of being really sick and then something clicks....and it finally makes sense. I can usually pinpoint it to exactly what I ate. It is finally all coming together!

How are you doing?

This morning is already a little better for me.

take good care,

HI bette,

thanks for the info on the nutramed. I will check it out. hopefully it doesn't have soy either!.

soy is a really bad irritant for people with IC. do you follow the IC diet? i can give you some diet tips whenever you like.

Hydrodistentions helped but I haven't had that done in years. The treatment of choice now....in the office... is bladder instillations. There are different things that they can put in there to calm the bladder down.

I've never been able to tolerate IC meds. they made me so sick....who knows what was in them.......hhhhhmmmmm

Why is your endo flarig up? Are you on hormones?

After my hysterectomy I did not get HRT for 2 years....i had terrible migraines...daily...more pelvic pain and burning...and worsening of IC. since going on an Estrogen patch in Nov...things have gotten so much better. The migraines were the first thing to get better.......everything else took a little longer but I can see such an improvement. If I slip up with my diet though my bladder starts screaming!

Incidentally.....after much research of my pathology reports........and continued symptoms I really don't think that endometriosis was the main problem. I think it was probably gluten related and drs misdiagnosing. It's such a crazy scenario that I get upset just thinking about it.

let me know if you need an IC info.

I have a baby shower this sunday and in light of how I have been feeling with accidental gluten ingestion I was thinking of not going. then I got a call from one of my best friends and after much conversation i gave into going with her.

She suggested eating a plain grilled chicken or something of that nature.....they just don't get it! we were all together about 2 weeks ago when my hubby threw me a surprise party and even with checking everything and speaking with my waitress..i got sick! I was sick for days. now i am so afraid to eat out because i haven't gotten really good yet at decoding all that they serve at restaraunts...also...i don't trust them. But......you can't hide from living your life.....there is so much that i've missed out on already.

my friend suggested having something right before and then eating a plain salad.... no dressing while there.

let's see how that goes. it's an early shower (12:00pm) and I have about a 2 hour ride before me.

Maybe I'll sneak something in my bag and just happen to go to the bathroom when they are serving the main course!

I guess the most important thing is being together and having a few laughs!

good luck and let us know how you make out!

You are probably right about overdoing it with the fiber...and I am also sensitive to sulfites. I guess potassium sulfate is sulfite!

I checked the dried figs and sure enough they were dusted with white powder....hmmmm.

given the toxic way I felt it was probably wheat flour.....no more figs for me!

Thanks again. I am learning to be more conscientous with what I eat.

I've learned my lesson with lunch meat!. Before I knew about gluten I couldn't understand why i would get so sick after a turkey sandwhich from the deli! I would blame it on everything else. It's finally all coming together.....you will learn a little more each day.

I now only "brown bag" my lunches! I make sure that I make a little extra the night before for dinner and then take it for lunch the next day. Grilled chicken breasts go a long way...I cut them up in a salad with a little olive oil and have lunch!

I hope that you are feeling better today and figuring out how to eat right so that you won't get sick.

Hang in there,

Hi Stephanie,

thanks for the heads up on the dried fruit. I never thought about dusted flour but it could very well be. My muscles feel like they have been poisoned! I woke up moaning that I felt sick , nauseous and achy... and was rocking back on forth on the bed (a gluten reaction for me). I am still wiped and in pain. my head is going to explode!

I'm sorry that you might have IC. I think that all of these conditions are related to a messed up immune system. 4 UTIs are a lot for one year especially if there are no bacteria present. That was the case with me....but then again I had bladder problems as a child and started with urethral dilations at age 9! Again, I feel an underlying immune problem that was never recognized.

Did they do a cystoscopy? or hydrodistention...that seemd to help when they did it for me.

Hormones play an issue and I finally feel that my IC is better since being on the Estrogen patch! So, if you are perimenopausal you might want to look into that.

The other thing is diet....which is something I have been doing too. Try to avoid acidic foods. they will irritate or trigger a response. I take Prelief (it's gluten-free) with meals to cut down the acidity in my foods and beverages.

Soy is a big trigger for IC ...so be careful with that. I actually had to get a bladder instillation 2 weeks ago to calm my bladder down after i accidentally had soy.

I see one of the top IC doctors in the country who has been helping me a lot...but the real help for me came from Estrogen and reducing acid. I don't take any of the IC meds as I get terrible reactions from them (they probably have gluten or one of the many other things I am allergic too!)

Email me if you ever have any questions.

Hope you feel better soon!

Thank you all for the words of encouragement. I say this between tears. I am so frustrated and at times feel so hopeless. Especially on days when there is so much pain.

My nutritionist told me to leave out starches right now as my body cannot handle them. She suggested BOILING a white potatoe and having a small peice of it. She said that boiling will help to break it down so as digestion is easier and a lot of the starch will seep into the water making it less starchy.

I am so afradi to give it a try.

I posted somehwere else about dried fruits that I have been having which I also think have been making me sick. someone wrote that they could actually be dusted with wheat flour to keep them from sticking. Boy this is really so involved. There is no denying how horrible I feel today.especially when I was up all night with gut and body pain. I still feel toxic and my hubby and I couldn't figure out why.

I would love to say that I just won't eat for a week or 2 just to get all this out of my system....but that is not practical...besides I still get hungry.

I am lucky to have found this site which has been so helpful and educational to me. I feel guilty that I don't give back as much as I get and often feel like a pathetic fool who is always having problems! sometimes I get embarassed to post.

My humblest of thanks,

It seems that no matter what i do about my diet I am affectred in negative ways.

I have been gluten-free, soy free, dairy free, peanut free but am still getting sick.

The thing is that when I ate less I felt better but in light of the fact that I have lost so much weight I have been trying to eat more. Especially since I now know that I have food intolerance. I try to eat things that don't have offending ingredients but am still getting hit with horrible symtpoms.

I had my typical grilled chicken last night with baby greens (just a little olive oil). For desert, instead of cake we had dried figs, prunes and apricots (sweet tooth was acting up!) I've been avoiding starches too as I have been having terrible reactions!

while watching Idol my hubby brought out some Ciao Bella frozen lemon sorbet. I read all the ingredients.....nothing to worry...so i had a few teaspoons with him. by bedtime I started to cramp and became totally bloated! Then I started to feel sick. I tired to sleep but woke at 3:00 with muscle pain, a migraine, nausea and a sick feeling to my gut. My stomach was also buring so I took a Zantac (but only after I looked it up in the products manual....it was gluten-free). By 7:00 am I had more cramps and total explsive "D"! (don't mean to be gross).

today I am sitting here scratching my head again..unable to go to the office (again). The ony thing that I can think of is that in addition to probably having too much fiber with the dried fruits.....I probably cannot tolerate the potassium sulphate and sulfer dioxide that is used as a presevative. I checked those ingredients too before I had the fruit and they seemed safe but even though they are gluten-free I am reacting to them. I'm sure the lemon sorbet caused the burning....as it was very tart....Thank goodness I really didn't like it and didn't eat much.

It seems that each day something is getting me. i wish I weren't so hungry then I wouldn't look for things to eat. I have been clearing all the food that i eat with the nutritionist first. She recomended the sorbet and thought the dried fruits were a good idea. I guess we are finding out how sensitive I really am.

No more dried anything for me! I am learning this all the hard way! Hopefully I will get a diet in place so that my intestines won't be screaming afterwards!

anyone else have problems with dried fruits? or sorbet? the ingredients in the sorbet are:filtered water,lemon juice, sugar, pectin, guar gum.........so much for trying to be dairy free!

I'm getting a little discouraged here and tired of feeling sick!

I also had the same thing happen. I wound up in the hospital several times with stomach pain, diahrea, dizzy, muscle pain, fatigue....each time I was rehydrated by IV and told it was probably the flu. Once they even told me I had Giardia and put me on Flagyl for it. when the stool test came back it was negative. I was actualy tested a few times and each time was negative for parasites and ova.

In hindsight it was probably gluten or some other food intolerance that I never suspected. I never thought I had a food intolerance but am realizing more and more that diet is key.

hang in there til you figure out what you can eat and try to scrutinize everything.

Hi Bette,

Good luck to you too with all that you are going through! I had the York food allergy testing and it was very accurate with the foods that I am reacting to. I haven't heard about the Kimball testing.

I kept a food diary for about a month when I was first referred to a nutritionist to help me with a gluten-free diet. I learned a lot from the diary but the dietician was not that hip to all the more intricate issues of a gluten-free diet. I guess we both learned as i was being challenged much more than if she was more familiar with gluten. So, I actually learned a lot by her mistakes.

With so may intolerances it has been difficult to get a good diet in place. I am now working with a nutritionist that is very familiat with gluten. I actually did not make it to the appointment yesterday because I was so sick form whatever I ate the night before. the good news is that she was able to do the appt as a phone appointment. she brought a lot of things to light adn we are now doing an allergy elimination diet. so....right now the rice is out too as it has been to upsetting to my GI tract. I guess the starch is too hard to digest and the pain just lingers! I actually looked like I swallowed a basketball! It is just now starting to settle down. We've also eliminated any type of oil....except a drizzle of olive oil.

As for further testing, if I decide to do any other test it would be Enterolab as they test for more of the celiac genes and markers. My nutritionist thinks it is not necessary as we already know how sick I have been getting with gluten, soy, eggs, etc. I guess this has gone undiagnosed for so long that i became sensitive to so many other foods. When I get sick form gluten or soy it's like I swallowed poison and I am sick and disoriented for days. most of the times I can't even leave the house.

I am hoping that with time a lot of my fibromylagia symptoms might subside. wouldn't that be great?!?

I hope that things turn around for you too. Hang in there and let us know what the test results show. I guess we need to give it time and really stick to the diet. I'm sure that it has to get better with time.

Dairy could definately be a problem as it is with most celiacs. It's been about 5 months for me and I am still trying to fine tune my diet.

Give it time and make sure you scrutinize everything. gluten-free can ony help you to feel better.

Hang in there!