mela14

Try Freeda vitamins. they are in NY and are free of gluten and most allergens.

I was referrd to them by the celiac center at columbia presbyterian. they compound everything themselves and the prices are so reasonable.

they also have a website.......but if you call them they are very helpful.

good luck,

Thanks for all the Utz info! I can't wait to snack on them later.

I am going to keep away from the pistachios....not only from a gluten standpoint but also because of bladder problems.

As for the sick feeling I was getting it seems that I am also relapsing with a virus that I had 2 weeks ago! Fever blisters are back on the lip today and I feel very achy and fluish. 2 weeks ago I had it with fever.......

when there is so much going on it is hard to tell what is coming from what.

this bug seems to be going around.

take care,

I had it 2 weeks ago and thought it was gluten but then wound up getting a fever of 101. Needless to say i spent 3 days in bed feeling awful. Now i feel like I am getting a relapse. At first I thought it was gluten but now have fever blisters coming out on my upper lip. I'm thinking it's probably viral. either way.........gotta rest and wait it out.

take good care of yourself..........hope you feel better soon!

Thanks for the help. i'm keeping away from both. I am still feeling sick but hopefully tomorrow will be better.....I am going for my monthly Immunoglobulin infusion and need all the strength I can muster up.

I had a reaction to something and am still feeling it today..fatigue, dizzy, muscle pain, headache.

I am back tracking everything. Last night I tried some new Utz, natural preservative free potatoe chips (salt free). today I am feeling like I've been glutened or had soy. I don't think it has either one. It is cooked with cottenseed oil.

I've been pretty good on the diet.....just dealing with other health problems and trying to work out the diet.

the only other thing I had at the same time was salted pastachio nuts.

One of the two made me really sick.

thanks,

mel

Thank God I haven't been glutened in a while. I think I am getting better at scrutinizing things and I am also refraining from things that I am not sure about. I had 2 communion parties last month and took my own food to both. At least I didn't get sick!

I am still having a rough time with what to eat though. It seems that I am still not able to tolerate a lot of other foods. Rice and starches do me in. I can have a little piece of potatoe but if I have anything more I get bloated and feel ill....(but not gluten sick!) I have to rotate raw nuts.......if I eat anything roasted the oils get me sick. I tried potatoe chips but the oil make me sick too........again...not gluten sick just sour bloated gut that lasts a while.

I still can't have any type of beans or lentils...........I had the smallest amount of fresh lentils that I made and was blown up for 2 days.......NOT FUN!

I have been talking with the nutrionist at Columbia Presbyterian and she has been guiding me a lot. the thing is that I am getting discouraged. I am trying so hard to eat more and vary my diet but it is not working. The only thing that makes me feel better is avoidance of all the things that I am intolerant to. Trying to add back a little at a time is not working. I think I might have to accept the fact that I have to keep a very simple and limited diet.

To make things more difficult my Interstitial Cystitis is really acting up and I can't tolerate any fruits and some vegetables (especially those high in potassium or acidity) they are a killer on the bladder. I have been addressing the bladder problems with my urololgist so I'll spare you the horrible details.......but it hasn't been fun. Of course this now means I am not getting enough fiber which brings on a whole bunch of other problems. I just can't seem to get it balanced yet. When I feel that I want a snack I usually wind up having something and then paying for it later...........with IBS or bladder pain. As for gluten though..........I am doing pretty good keeping away from it. I have read that if you stop the gluten then a lot fo the other intolerances might get better. so far that has not been the case with me and doesn't look like it will be. I am tired of having gut problems

Hi kaiti,

i was actually in Miami for a week right before Memoral day and got back that thurs. Who knows....maybe I caught something on the plane!

the weather was nice and the beach was magnificent! We went to the new Hard rock Casino and of course south beach and then my niece's high school graduation. I took my brother and his wife for a few days too and it was a blast...in spite of the dietary challenges. My IBS has been acting up big time but I tried not to let it get me down...I wore loose things and didn't eat too much...but when the spasms hit boy were they bad.

all in all..........a good time!

hope your holiday was good too!

thanks for the well wishes...........My gut is still sore and sensitive.....My IBS has acted up from all of this. I guess I have to baby it for a few days. I tried eating lentils!!!!...big mistake..oh my gosh........I was so bloated for 2 days and then yesterday had some chips that blew me up too......(no gluten but I think the oil got me). Temporarily back on zelnorm and zantac...(just for a few days to help it along)

kaiti, I noticed you have a new picture up.........boy you look great! who is the other person in the picture?

OK....gonna try to get out of the house today. so much for memorial day weekend!

Take care guys,

Just wanted to say a quick hello. I was out of town for a week with no PC and then Saturday got hit with a stomach/head/body virus. Needless to say it has wiped me out and I have not been able to even sit at the computer. I am still recovering from it and feel awful but at least I didn't have anything with gluten. Imagine how much worse off I would have been. I remember times when I would get sick but never get better.........that's because I was encouraged to eat cereal/bagels for breakfast even when I wasn't hungry......just to keep up my strength! who knew? The gut problem I am dealing with now is the irritation from Advil Liquid Gels ( i checked them out and they are gluten-free) which I know will get better in a few days. I am sure that this bug is starting to leave my body!! yeah!

Hope you are all hanging in there!

Happy Memorial Day!

I hope you are better today............hang in there. this too shall pass.

Sorry to hear you are not well! I'm not, either

did you accidentally get glutenized? what are you feeling?

I am still not feeling well from the cookies. I am CERTAIN it was the soy. I have been making mysef crazy trying to figure it out. Thinking back to the times I intentionally had soy and how badly I reacted and to the times there was probably soy in the mix without me knowing. I think I have more of a reaction to soy than to gluten and it lasts longer! By day 2 or 3 it usually irritaties the heck out of my bladder..........well today is day 3 and I am still having muslce pain, racing heart, fatigue, vertigo.............and BLADDER PAIN! I hope that I can pull myself together to go to my nephews communion. I am bringing my own food tonight to the catering hall!

I hope you are feeling better soon. Watch what you eat!

Your life is far from being over...it has just changed. eventually, things will fall into place and you will get the diet worked out...just as I am trying to but you will e feeling better.

just hang in there and give it time. we are all here to help one another.

you can do it!

thankssssssssss...i'm sorry that you are having a hard time too.

Let's pray that tomorrow is a better day!

I'm staying away from the rice...I had to learn the hard way. even the one peice of rice bread toasted in the morning was making me sick and bloated.

the real killer for me though...is SOY!!! I am soooo sick today from gluten-free cookies that I had yesrterday........they ar e"made in a facility that uses soy, eggs, dairy, peanuts and tree nuts"! all the things that do me in...but soy really kills me. ......between the muslce pain, vertigo, racing heart, fatigue.....I feel like I've been poisoned!

sorry to vent today...........but I feel awful and am tired of going on like this.

ok.......suffering here too......I am learning that soy is worse for me than gluten!

last night I had a gluten-free cookie that clearly stated on the package that it is produced in a facility that also uses dairy, eggs, soy, peanuts and tree nuts! Unfortunately I didn't bother to read that part but hubby read it this morning only AFTER I was so sick. I must be THAT sensitive! I am trying to stay positive but feeling so poorly just gets me down. I can't seem to get it right. there are so many things to watch out for! soy is a killer for me!

I recently decided to give Pamela's gluten-free cookies a try. As you know I am just learning to be gluten-free but have been having other intolerances that have been getting in the way. Rice is ver y hard for to to digest but after working with my nutritionist she said to try a tiny bit at a time. If i have a full portion of it I get really bloated and feel sick.....even one slice of toast will do it. anway, the cookie that I decided to try is Pamela's shortbread cookie....boy is it yummy! the first time I had it i ate 2 because they were so good and got so bloated and sick. I thought it was the butter in there so I didn't have them for a week. Last night I had one cookie because I thought my tummy was better but an hour after I had it my gut blew up and I felt sick again. I was sick through the night with gut problems and that toxic feeling. All my muscles started hurting, I had the shakes and then got a migraine. Wo...what could it be. It felt like a glutne poisoning or even soy. Soy probably makes me feel worse then gluten!

so this morning I had my hubby read the ingredients.....no soyor gluten but then at the bottom...it said made in a soy peanut, dairy, egg facility. He's convinced that is what did me in! Could I be THAT sensitive? I know that eating soy in and of itself absolutley detroys me and it takes days to recover...but this is crazy! I have been trying so hard to eat a little more and put on some weight...also I feel that i need more nutrition as I have been suffering with neuropathy and probably need more variety. The things that I react to are : eggs, dairy, nuts, peanuts, soy and gluten.....and I am now avoiding all grains....and going easy on potatoes. The toxic feeling I got last night is another setback and is so upsetting. I have my nephews communion tomorrow and want to be able to feel better to go! Has anyone else reacted in this way? I just don't know what ot do anymore?

I don't do well with a lot of the other grains. I have been experimenting with different ones and react to so may of them. Buckwheat, rice, quinoa all do their share. I am having a hard time with potaotes too so I avoid potatoe starch. I just bought garbanzo flour (chick pea) and am going to try to make some bread with it and see how it goes. Did you check to see what the pizza dough was made of? You may need to start investigating that too before you find a pizza dough that is ok for you.

I can't even think about having anything with soy flour...it gives me the same sort of TOXIC effect that gluten does.

Good luck in finding out what did you in. oh.......and you know about dairy too....

awwwwww.........thanks guys....you are the best!

Beverly...you look gorgeous in your wedding dress with your handsome hubby!

Michelle, you are so sweet..........and supportive..thanks:rolleyes:

I hope you are all doing better and living life in spite of this horrible, confusing disease. there is more to life than just celiac!

I went to a new PCP yesterday because of burning that I have been having in my legs. It has been getting really bad lately and in addition it has been happening more and more in other parts of my body. At first I thought it was just muscle reactions to accidentally eating gluten.

As most of you now I have been having a lot of challenges getting my diet sorted out with all the other food intolerances and have not been able to put on any more weight. I put on about 3 lbs but that's it!

I've been working really hard with the nutritionist at Columbia Presbyterian but have not been taking any vitamins because so many of them casue me problems with the additives, etc.

I explained all this and more to this new dr. At least he was on board with the celiac problem and feels that although my biopsy was neg he is pretty sure that i have it. when I told him the reason for me being there was the burning, sizzling, tingling that I have been getting in my legs .....which has now gotten really bad in my arms too. I also have a sizzling going down my right neck that becomes unbearable at times. He said that what i have is a neuropathy....so let's add that to the list too! He said the neuropathy cold be coming for vitamin deficiencies so he sent me for blood tests this morning. has anyone else had this and what's helped? He said that if I look ok nutritionally then we have to look at taking some type of antidepressant to calm down the "fired up nerves!"...which I really don't want to do. I don't do well with drugs! He suggested elavil but i remember not doing well with it a few years ago. I also tried nortryptaline....but that just made me loose my hair and I had to go off of it.(something I won't sacrifice for the meds!)

I had my hubby give me a shot of b-12 tonight just for a boost but am not sure it will even help at this point. The burning is really bad..........and it is scaring me! I have to wait for the results...and am afraid that they results won't show any deficiencies. I had vit levels run about 5 months ago and they were all fine.

I was referred by columbia Presbyterian to a compounding pharmacist who I spoke with today on the phone. He is sending me Calcium (powder to mix with water)...for the osteoporosis that i have, a multi, and a b complex. all are gluten-free and also free of other allergens. I am excited to be getting them and hope that I will be able to tolerate them. I know I NEED to take vitamins as my diet is pretty limited and I am sure that I am not getting enough nutrition....even though previous blood work looked ok!

Even if the test results come back ok......I have to say that I just don't feel right..........between the sizzling, fatigue, muscle burning and pain...something is wrong. has anyone had this happen to them? and what did you do? I know that vit def are common among celiacs.........I'm just upset that if this is what it is....that it got to this point! I'm stressed over being my own dr....It just takes me too long to figure things out with the limited amount of medical knowledge that I have.

Any thoughts?

sorry about that....i hit the wrong button!

with the SUPPOSED fresh herbs!

Naked means naked...and if it's not...it's going back. I've also learned that I can't do FRESH garlic.

I had a good appt with the nutrionist today and we touched on a few things that I didn't figure out on my own. The banana chips are ok...so I'll try them again in a smaller dose. We are wroking on food rotation.

I'm also starting on vitamins.....she referred me to a compounding pharmacist who maeks them free of all those allergens...especially gluten.

My dr sent me for blood work this morning for the burning that I hae been having in my legs. We can now officially add neuropathy to the list.....but he thinks it might be from a vit deficiency as he doesn't think I am absrobing well enough.He also thinks my diet is very limited so I am not getting enough variety. Hopefully some of the B vit will help with the neuropathy...if not...then we contemplate a prescription.....hhhhhmmmmmmmmmm...hate to do that.

Oh well....that's the update.........let's just take it one day at a time. Learning a little each day!

Thanks again,

Thanks for the replies........next time...the food will go back if it doesn't come plain!!! funny thing is that I sent the salad back that day because it had dressing (even though they assured me it was olive oil and balsamic). I don't do well with ANY vinegars! I thought I would be safe with the SUPPOSED

it could be that eating gluten finally took it's toll. stick to the diet and give it time. you need to do some healing inside. going gluten-free can only help you. are you taking vitamins? often times with this disease you don't absorb nutrients well enough which can lead to a bunch of things...fatigue being one of them.

keep us posted,

OK..no matter how hard i try I am still having a hard time making things stickl We took my mom out for mothers day yesterday....... I was already have gi problems in the morning. My hubby and i went to Barns and Noble and decided to have something in starbucks. I had a decaf espresso which irritated my gut and started a bad day off.

anyway, i was so paranoid about eating and went over everything with the waiter. i insisted that my food be plain and he even argued with me that my entre` came grilled with fresh herbs.....(not prepared ones)..he insisted there were "grains"

on the seasonings. I told him that I preferred plain....nothing on it. when it came back it looked life there was fresh parsley, fresh garlic (which i scraped off because it irritates me), salt and too much fresh pepper. I ate very little of it as my gut started twisting from the salad. I was so bloated and in such pain but sat there politely and smiled.

we were all given maginficent mother's day deserts whichwere so pretty to look at......and I passed along to my niece. By the time we left i had to stop and get some mylanta at CVS to help calm things down.

My gut hurt so bad but i didn't feel sick yet so I thought i was safe. I snacked on some sweetened banana chips i got from the health food store. Now i am not sure if they were safe.......I was up during the night several times sick to my stomach...sour tummy, congested, muscle pain, headache. I feel so wiped and out of it. I am so depressed over this. I just can't get it right! so much for having the drs at columbia tell me ..."the good news is that you are not celiac".

OK...here we go with another wasted day. I had some appts today that I am going to have to cancel.

I read the label on the banana chips: coconut oil, bananas, sugar.

I had the same chips form another manufacturer and the label read: coconut oi, banana, sugar, banana flavor. I'm thnking the the banana flavor may have gluten...even thought htey didn't list that as in ingredient.

also, with all the mother's day chaos...it's possible that my fresh herb seasonings on my veal also had some bottled spice with gluten. I just don't know and can't figure it out today. I'll write in my food diary and have my nutrionist help me to figure it out.

gotta go rest....

donna,

what does the card or note say??? I think I would like to make one up for my wallet to...byt not sure how to word it.

thanks,

The bottom line is that once they see you are starting to feel better they can't argue it! So, for now make a plan and stick to it. You can always come here for support.

When I first started to go gluten-free i noticed that I didn't wake with horrible headaches and my gut was actually calming down. then the diarhea stopped ...yeah! Once I had my endocopy, my GI said that everything looked good and that i didn't have celiac. I had the biopsy done at 4 months gluten-free.

A few days later, she had me second guessing myself and I wasn't as careful scrutinizing everything I ate...(although I wasn't intentionally eating gluten). The morning after my birthday party I was sick as a dog.........I was homebound for 3 days because I felt so poorly. Well, that just confirmed to my family even more that I couldn't have gluten.

Another time my mom slept over and witness first hand how sick I got after eating a contaminated rotisserie chicken from the grocery store. Within a half hour I was sick and crying and bloated........My entire persona changed. she saw how much I was suffering and again it lasted for days. Now at leat they know that I can't have it. The biopsy was useless to me. You have to see for yourself how you feel afterwards but you need to give it time. I am still working on my diet...but then again I have a lot of other food allergies. So hang in there...........

Oh....and when they finally do get it....they won't scrutinze like you do.

here's an example: my mom made dinner one night and discussed the menu with me several times. she was making shrimp and I told her to make it plain as she does with all my food. Well, once I saw the shrimp it was baked in the oven with breadcrumbs smothered over it! I told her about it and she said ...just wash it off then. that's when i freaked out. my dad quickly went to the fresh fish market and bought something that I was able to grill real fast. they sure don't make that mistake anymore!

It takes time....and is a learning experience.

good luck,