mela14

Hi guys,

Just looking for someone in the NJ area that could help me with my diet. I have so many intolerances that I just don't know what to eat anymore and lots of foods are making me so sick.

My biopsy just came back neg and the DNA was neg for celiac as well.

My dr just called to give me the "GOOD" news....I am not celiac (but....I am still feeling so poorly and having such a hard time with different foods). oh well.........

I know how I feel when I eat gluten or any of the other allergens so I won't go back to eating them but.......this is so hard and I get so hungry and don't know what to eat. Instead of giving my money to a weekly therapist I would rather give it to a nutrionist to help me learn how to eat right for my body.

I live in the Freehold area..............any names?

thanks,

OK...dr Lee just called from Columbia and gave me my results. the small intestine looks good with no damage. The gene testing was neg for celiac so she said there was no way that I could ever be celiac. I said that's great!...but I am still feeling poorly and getting sick after certain foods. she said that i probably DO have food intolerances and to try working with a nutrionist to see what I can eat. She also said that being that I have fibromyalgia I could be getting a lot of symptoms from that and that it's hard to figure out what is coming from that......... hhmmmmmm........ anyway, she said that i have to get my IGG levels checked as I have an immune deficiency and that could be causing me to over react to certain foods. I went to the hematologist this past friday and had bloods drawn to check my levels. Let's see how they are....if they are low again I might have to go back on monthly immunoglobulin infusions.

Either way,

I am going to stick with the diet and probably try to fine tune it a little more. I've been sick since friday with some sort of reaction from soy (it was on the popcorn) and in addition i think that ALL tree nuts are doing me in. At first it was only peanuts, almonds and walnuts....I think i can add cashews to the list too. It seems that the more I try to eat ....the more problems I run into. My gut is raw and sour....Here we go again...back to simplifying!

I just don't know what to eat anymore when I am hungry between meals or am out of the house. I was eating nuts to steer awasy from junk food but that doesn't seem to be working.

does anyone know of a good nutrionist in NJ to help me work on my food intolerances?

thanks,

i also had a hsyterectomy...but i think the problem was gluten long before. if i knew then what I know now!

I'm glad that you are feeling better. I am waiting for my biopsy results. An and still not feeling better.......but don't think they will show anything. i had the biopsy done 4 months after going gluten-free. I am also waiting for the DNA results. either way I am not going to eat gluten again....I still have to work on my diet as i have so many other typical food allergies. probably because it took so long to figure out about the gluten.

Hi kaiti,

I've been questioning my corn allegy. It always comes back a little high but I have been able to eat corn and don't remember a problem...but then again????

I have not been able to have soy in any way shape or form! It makes me soooo sick. Of course this had soy in it. I'm thinking that may have been the culprit. This is all so hard and i get so sick from various foods. but soy for sure makes me sick for days!!!!!!!! It's also really bad on my bladder.

OK...........gotta rest now and hopefully will be able to get out tonight to a dinner engagement that I have and really want to cancel. Its just so unfair to my hubby.

how have you been feeling?

i haven't gotten any of my test results back yet from the endoscopy form last week. I'm really not expecting much and regardless of the results I will have to continue to watch my diet.....but more diligently.

take care and be well,

Does anyone know if Orville Redenbacher Old Fashioned Butter Popcorn is gluten-free?

I had some last night while baby sitting my nephews and immediately got sick during the night. All the same sypmtons came back.....headache, muscle pain, fatigue, racing heart. If it wasn't gluten then I think it was the SOY! Soy makes me feel so ill. and of course dairy is no better. I looked on my Poducts #9 listing and didn't see it there so I'm thinking it might have gluten too.

I looked on their website and they state that they don't screen for gluten but do list if their products have wheat or soy or dairy, etc. this doen't say wheat but it does say soy and milk. I also looked for other key words that might indicate gluten and don't think this particular popcorn has it but am not sure. then again if it is made in an envrioment that has wheat it may be contaminated.

Any others have experience with this?

thanks,

Thanks for all the help. so if it is not on the lists then am I to assume it has gluten? If so.....does anyone else know what I can take for Intestinal Spams? Not sure if Levsin or Levbid are gluten-free gut I remember them giving me migraines and I had to stop.

Sometimes the spasms are so bad that it feels like a charlie horse in my gut...usually low on the right side and after a BM it hurts more for a while!

I think I will try a hot water bottle tonight!

My bladder is in such a flare too from all the gluten-free irritating teas (I should have known better!) and I thought it would help my bladder as well.

No one said this was going to be easy.............

just trying to find some balance.

Thanks guys....

Hi Kaiti....how are you doing with the Nystatin?

I stopped and think I am OK without it. The yeast seems to be under control...I guess it was more of an irritation problem from having too much acid in my system.

My dr gave me an rx for Librax about 3 weeks ago which I did not fill.

Lately I have been in such a flare and my IBS is acting up. It actually feels like my intestines are clamping shut on me in the lower left corner! Boy is it painful!

Anway, it is throbbing all day and I can actually see a lump on my body where it is in spasm. Maybe I should have filled the Rx. In the past I was given levsin but it gave me migraines. I remember also trying Librax but that was years ago and don't remember if it helped. Something has to give! My Interstitial Cystitis is also in a flare. I guess trying to eat more on the gluten-free diet ....I must have had things that aggravated the bladder. So I am trying to soothe that as well.

Before I go out and fill the Rx for the librax just curious if anyone has had any good results with it. although it is not on the gluten-free drug list....I checked it out on line and I think it is gluten-free. It contains corn starch.

Any info would be helpful.

Thanks,

Kimberly,

Waht else doyou put in the mix. I see that you are also dairy free. Are you ok with eggs? Where can you get that mix..........I'm really in the mood for a piece of chocolate cake.

thanks

Just reporting back that my experience at Columbia Presbyterian was exceptional. The nurses were kind and considerate. Dr Susie Lee was just sooooooo pleasant. I forgot what it was like to have drs on your side and show some concern to their patients. I was actually treated like a person by all at the hospital starting with the receptionist.

After the biopsy Dr Lee said that my intestines looked OK. She said that I had a hiatal hernia........which I've know about and take zantac or like drugs occassionally. So....I guess I have to wait for biopsy results. Either way my gut still does not feel right and feels so irritated! why couldn't she see that. this is really messed up. You feel one way but you show up another way.

She said that she would call me in about a week to discuss the results. I told her that I would prefer to make the ride in. I feel that I ouwld get a better appt in person. I also told her that if all the results are negative I still need to be pointed in the right direction with how I am feeling. I also want to continue working with Anne Lee. Before the scope I spoke with dr Lee a little and told her of some other syptoms that I have that I forgot to mention at the consult. She said that I probaby DO have fibromyalgia as well, separate from whatever is going on GI wise. I was hoping that one could be made better by the other..........stick to the diet....muscle pain and fatigue should get better. I reminded her again of the racing pulse especially upon waking and after eating certain foods and she didn't say anything. I guess this will be something to take up with Anne Lee ....it seems to ber her department. She DID ask about my thyroid but it seems to be ok. The next step would be to have all my hormone levels checked with an endocrinologist...especially since I had a total hysterectomy 2+ years ago and only started on estrogen patch about 3 months ago.

There is soooo much going on here and it is so hard to figure out but I guess we all have to be our own drs. Next week I will contact my hematologist and schedule bloods to be drawn to check all my IGG levels as I have an immune defeciency(which he believes is secondary to celiac). I haven't had an infusion in 3 months and we are anxious to see if the levels have come up on their own just by avoiding gluten. Wouldn't that be great! Having Immunoglobulin infusions and being hooked up to an IV for 5 hours every month is no fun.

that's it for now. Other than a raw throat....they scratched it with the scope......everything went well. Yesterday I rested and had lots tea. It still feels like a sore throat and it is hard to swallow. AS for GI symtpoms I was a little irritated yesterday and probably had too much salad with dinner as it felt more irritated after eating. This morning I have a lot of lower abdominal/pelvic irritation. Gotta watch my diet today.

thanks for all your support,

OH, Beverly in Arkansas ....who is Dr. Fine? Does he have a website?

Hi guys and thanks for all the responses and well wishes. I am ready to hit the sack as get up early to go to Columbia tomorrow morning. I had a good eating day today. I was famished and felt like I was eating all day. I made Turkey soup and it actually came out good. After spending much of the day crying because of not feeling well (fatigue, muscle pain and racing heart) my hubby came home and surprised me with my nephews (ages 6 and 8)! he called my sis and asked if he could borrow her boys because I was having a bad day and he knew they would chear me up. Well ...it did the trick. They were all over me with hugs and kisses. I actually went back to her house for dinner (brought my own food ...they were having chinese) and then played board games with them. So all in all.....it was a fun night. Kids have a way of making you feel special even when you feel horrible. They don't even kow you are suffering.

So tomorrow I'm having the biopsy and we'll see what happens. Either way I'll continue gluten-free but try to scrutinze even more. The other thing I need to investigate some more is hormones. I have been on a low dose estrogen patch for about 3 months now and think it is helping but maybe it is not the right amount. When trying to increase the amount about a week ago I felt more nauseous so I went back to the lower dose. After having my total hysterectomy 2+ years ago, I did not go on hormone replacment because of suspected endometriosis. All the pathology reports were negative for endo.

Well, I felt worse with headaches and menapausal symptoms without hormones. Since being on HRT I have been sleeping better and not having the night sweats or hot flashes. Maybe other hormones need to be checked to make sure they are ok. who knows they could be contributing to this racing heart problem and feeling debilitated.

The fibormylagia pain is off the charts..........I pray that it will get better with time on a gluten-free diet. Something just feels so wrong. I feel so malnourished and eating doesn't make me feel better. I hope that Columbia Presbyterian can live up to the reputation that precedes it. I need help....have been all over for it....spent tons of money (really) ....lost so much because of misdiagnoses.......and really need someone to help me finally get it right. I realize that I cannot do it alone.

I know I am on the right track but need help with fine tuning my needs. Sometimes it is so hard to make sense out of it. And there are times when things are right under your nose and you can't even see it.

I made the best of a rotten day today....I guess there was a reason why I moved back to NJ........having my family close helps(sometimes)....especially when those boys are around.

I'll report back tomorrow after the procedure.

Thanks again,

I finally made it to Columbia Presbyterian yesterday. I had a really good meeting with Anne Lee the nutrionist and learned some more. I then saw dr Susie Lee for my consult. I told her what had been going on and she suggested a gluten challenge and the doing a biopsy a few weeks later. I told her that I would not have the gluten as it makes me feel worse.. She looked at the blood results that I brought and although I had a strong positive gliadin AB the other tests were negative. I told her that I had been receiving Immunoglobulin infusions monthly for an IGG deficiency and that my IgA is also extremely low however I have not had an infusion in 3 months. She took everything I said into consideration. I told her that I have been attempting gluten-free for about 4 months and that my gliadin AB have dropped from 66 to 35. I'm doing better but the number is still a little high. She wasn't so concerned with the number and talked a lot about the other tests that came back negative. Of course she wants an accurate diagnosis and made certain to tell me that gluten-free is a life long commitment and she wants to make sure that I have celiac before putting me it. I had blood tests drawn to check the DNA, From what I understand, if that is neg chances are I don't have celiac. She said that some people have an intolerance to it and improve on the diet even if they are not celiac. She also said that a lot of other disorders get better without guten....like Crohn's. So........while we are waiting for the blood results she thought it would be a good idea to do the biopsy. She said if the damage was bad enough being gluten-free for 4 months would not have totally healed me.

Is this just a sales pitch for the endoscopy???? Either way I gave in to doing it this friday as anytime after next week is not good for me. My husband and I have been waiting for our new office to be ready and it looks like things will be happening monday so it made better sense to do it this week before we get involved with our business.

I also told her that I've had endoscopies(last one 5 years ago)that revealed a gastritis. I also had colonoscopies which revealed a little inflamation and IBS.

So...what I am concerned about here is that I am doing this test and it won't show anything and then I won't know what is going on with me. I've been feeling so poorly for sooo long and in such pain that I have been running from dr to dr. Something is not right. One thing she did say to me was that sometimes it takes up to 3 year on the gluten-free diet to feel better especially with someone like me who has been sick for so long and has had so many other health problems.

I am just so angry at drs for not getting this right years ago. So, I'm afraid they won't find anything but then again I am afraid that they will. Either way, the treatment is the same....I am not going back on gluten. I just pray that with time a lot of these other intolerances and problems will get better. Then of course I was told that it sometimes goes on for so long that some patients don't get well enough... A lot of my symptoms are classic celiac..........and they also told me that the sizzling in my arms, legs and back of my neck could be a neuropathy from the celiac.

I am so stressed by all of this. Today was a bad gut day.

Thanks for reading,

I saw Dr Zalman Schrader about 4-5 years ago. I was loosing a lot of weight and had diarhea all the time. I felt so sick and someone referred me to him.

I really liked him and his bedside manner. I was referred to him by my allergy drs nurse. She thought I had Giardia because she had it and he diagnosed it.

When I went to see him....I was 89 lbs and feeling awful. He never mentioned celiac or gluten. He thought I had giardia and put me on Flagyl and took a stool test. The stool test was negative and I never felt better after taking the Flagyl. The problem has been ongoing for years. I moved out of NJ right after that so I never returned to him. I never had an endoscpoy by him either. Maybe if we did one then I would have a diagnosis now.

So, here I am back in NJ and I would probably go to him becasue I liked him but I decided to go to the Celiac experts and make the ride into NYC yesterday. I met with one of Dr Green's associates and she seemed pretty informed. Her name is Dr. Susie Lee. I am having an endoscopy on Fri but not sure how helpful it will be as I have been attempting gluten-free for the past 4 months. She suggested a Gluten challenge but there was no way I would eat gluten for 2 weeks........

Let's wait and see what friday brings. Either way, I am not going back to gluten but have to try to get better. I'll have to plan my next step after friday.

Good luck,

Thanks for all your responses. I wish I could say that I felt better..........but I just don't. Between the fatigue, muscle pain, racing heart and of course the gut pain I don't know what to do to feel better.

I went to Columbia Presbyterian yesterday and saw Ann Lee and Dr Susie Lee. Both very knowledgable. I felt I was in good hands. A lot was discussed and we are going to do an endoscopy this friday morning at the hospital.

At first Dr Lee wanted me to do a Gluten challenge but I told her that I don't want to eat gluten for 2 weeks knowing how sick I could get. We decided to take a look inside even though I have been attempting gluten-free for about 4 months. I know this problem has been going on for a long time so maybe she will be abel to see something. At first I didn't want to do it because I fear them finding nothing and then appearing like a lunatic. Then I rationalized with myself. I feel better when I don't eat gluten. So regardless of what the biopsy shows I will not be going back to it. The dr also said that if I was not celiac it could be that being gluten-free just helped as it does so many other things like Crohn's....

So far being gluten-free has not been the cure all I dreamed of. So many other things bother me and it has been so hard to figure out. I've discovered that potatoes do me in ...sweet potatoes too! I used to always blamed it on something else that I had with the meal but then tried just eating a sweet potatoe and nothing else. Well 20 minutes later I was sooooooo sick. It happened a few times in one week and I was convinced! I no longer eat potatoes and have actually been avoiding all grains.

Ann Lee is the nutrionist and was more convinced than dr Lee that I had celiac. she immediately gave me info and tried to help with my diet. Today was an awful day....I took a Garlic supplement that I checked out and thought was safe. I took it on mon and seemed fine. Well today it did me in. my gut has been raw and burning all day....and not to be graphinc but something must have inflamed my nerve endings because after a BM the burning intensified and got worse all day. I feel like someone poured battery acid on me!

Needless to say...my appetite is always good and i had a nice dinner. Now I am so bloated and still suffering.

let's see what happens fri.

thanks,

HI Leslie,

I broke out with hives just as you described on my torso and up my neck the other day. It came out the same day after I woke during the night sick to my stomach from being on the Nystatin. I was probably killing off too much yeast too.

I spoke with my new homeopath yesterday, which was very nice of her to talk with me on the phone for half hour on a sunday. She told me to take the pure Nystatin powder once I get it from the pharmacy but to start with a lower dosage. She also said to take Diflucan once or twice a week to aid in killing the yeast and advised me to take probiotics..something I haven't been doing. O focurse she said to go to the store and find a probiotic that is free of allergens (soy, corn, yeast, etc)...all the things that trouble me. We discussed diet..........absolutely no sugars...natural or otherwise and no starches. That means stopping the gluten free rice bread...stopping the quinoa hot cereal for breakfast. She said that although it is gluten free the starch is feeding the yeast! She actually said to avoid ALL grains. So, what do I eat for breakfast???????.........bacon is ok provided it is sugar free. I tried some this morning ...let's see what happens. I was getting reactions form the gluten-free toast and quinoa cereal.......so I knew I couldn't eat it anymore. I also had plantains the other day and immediatley it caused intestinal (and vag) burning!

I am still fatigued and feeling achy. I haven't been out in days........but have to stay the course with getting the yeast under control

Tomorrow is my consult at Columbia but in light of all this Candida stuff I don't know how helpful it will be. I am seeing my homepath at the end of the week. She is nice enough but quite clearly told me I am the most difficult to treat patient that she has had. Although she gives advise there is no clear cut plan to get rid of the yeast. We have to try different things. She said she is going to give me a homepthatic remedy for the yeast. I'll try anything at this point.

Thanks for your input......you are right, Denton TX is a bit of a ride for me.

Just curious did your dr have you on a regimented plan for the Candida or did you wing it? Also, are you now as strict with your diet as you were when you were doing the treatment? This has to get better...the pain is horrible and the fatigue is delibitating.

We all need reassurance. That's one of the good things about this board. We've all gone through our own hell and we can all relate.

Hang in there. Things will get better. We just have to learn exactly what our bodies can tolerate. If people don't get it...it's their problem. I just got off the phone with my brother and he said "your number one priority is to yourself". He said to "do whatever you need to get better and don't worry about explaining to others". I guess that's it in a nutshell. It seems so simple when others put it into words...... and yet we get all bent out of shape if we have to explain ourselves to anyone!

Take care of yourself,

Hi Leslie,

where is your dr located? I recently moved to NJ. It's weird that you mentioned hives. I am on the Nystatin about a week now....very small dose ....

After I took my pill last night I woke during the night really sick to my stomach and weak. I had horrible muscle pain. I couldn't sleep my head was pounding so much. I couldn't even go out today.

This evening while I was taking a hot shower I felt itching like crazy! I called out to my hubby to check my back.... he freaked when he saw the rash! I think the heat from the shower made it spread more because my entire back had it and it went around my torso and up my neck.. My legs seemed ok although my ankles were itching and red. I thought it had to be my sweater. I don't know what is going on.

Then I thought I must be allergic to something inthe Nystatin so I called the manufacturer and he faxed me the ingredients. NO gluten but it does have corn starch. Now I'm thinking I'm allergic to corn. I tested positive for it with my blood tests but never thought much of it. I also tested positive for so many other foods.

I don't know what to think anymore. So many things have the same sypmtoms.

Last week I saw a homepath. she put me on a remedy and told me to take certian vitamins. Of course I got sick fromt he vitamins..they were gluten-free but they irritated my gut! I am so sensitive now. I think the vit were also free of so many other allergens like soy, corn, yeast, etc.....

The only thing that I could think of is that I also took an ativan...and about 2 weeks ago it did the same freaky thing to me. Weak, dizzy, racing heart, muscle pain, extreme fatigue............. so maybe it's something in the pill. Not usre anymore. One thing I know for sure........ I feel horrible and can't keep up anymore. I feel exactly the way you described it. Like I am going to collapse.

I am going to call the homepath and I also have an appt with Columbia Presbyterian on tues. Maybe they can shed some light for me.

thanks,

Hi Deb,

Thanks for your help. A lot of what I read on those 2 website makes sense but I have to tell you I had a mild anxiety attack reading it....especially on a day like today when I feel soooooo poorly. About 2 weeks ago I took ativan.......it was the day I was flying in from FL to NY. When I got to mom's and tried to get to bed I couldn't sleep because of all the stress of the day. So at 1:00 am I took another ativan. I was soooooooooo sick the entire next day. The same feeling as today! I had fatigue, muscle pain and sick sour stomach. I haven't been able to leave the house today and I have a dinner party with my sis and her 2 boys (ages 6 and 8). It's a mother son dance and the boys are soooooo looking forward to me going. I don't think I'll be able to as I feel horrible. Of course I've been crying all day today and this is getting the best of me. What the heck is going on with me.

I don't even know what to eat anymore............and the thing is I am so hungry but am getting sick with everything I eat.

last night I had mixed veg for dinner.....corn, peas, beans. last week I had corn tortillas and thought I got sick because of cross contamination. I just don't know anymore. Potatoes are also making me sick and I tested positive for them as well.

don't mean to be a whiner but this is just all too much. I've been sick for years and never thought it could be food allergies. I wish I knew this years ago at least I would have had a head start.

Hi Leslie,

I'm dealing with both Candida and celiac too! I can't seem to get a handle on it. how did you address the Candida? What herbs did you take?

I am at the end of my rope and reacting to everything. I started questioning the Nystatin that I was taking but it IS gluten-free. Maybe it is the corn starch in there as I tested positive for corn allergy or MAYBE it is just plain old Candida. I have been having some extra sugar lately....in the form of fruit. I'm sure that just flared me up! Today I can't get out of bed and feel totally debilitated. Did the Candida do that to you? I feel weak, achy muscles and totally fatigued. Of course this is all depressing me so much and anxiety sets in. Can you give me any information on how you felt and how you dealt with things? I dont' know what to do first.

thanks,

I've been trying to figure out what is making me so sick in my meds. I am examining everything.

I then noticed that a lot of my meds have corn starch in them. A few times I noticed right after taking certain meds I would get sick. Even those that are gluten-free and I would be sick for days. Today is one of those days! I was up all night sick to my stomach after taking Nystatin. The same sick feeling that I had after taking ativan. Neither have Gluten so I dismissed the as being the cause but deep down in my heart I know that I got sick right after taking the meds. I checked iwth the manufacturer of Nystatin and previously had checked the atican. Both gluten-free but I still get sick after taking them. I started to scrutinize everything and saw that all have corn starch. I tested positive for corn intolerance. Could that be doing it? I never thought I was allergic to corn...but then again I don't eat it every day and when I do ....I only eat a little. Latley, I've been taking Nystatin a few times a day and the ativan 1 to 2 times a day as prescribed by my dr for anxiety and to help with muscle pain. Now it seems that after taking both of these meds for a week the muscle pain and fatigue is worse!

Besides getting this reaction from gluten can corn do it to and has anyone else had a reaction with corn starches in their meds?

I'm losing my mind here!

Any help is always appreiciated.

Thanks,

Well, Teva Pharm just contacted me and told me that Nystatin is gluten-free! It is made with corn starch.

I've been starting to question my allergy to corn. I never thought I had one but all of the blood tests and the York test came back postive for corn allergy. Could this be making me sick.

Has anyone else had a corn allergy and reacted to corn starch in the meds?

I don't know what to think anymore.

I've been taking generic ativan and not sure if it is gluten-free. I can't seem to find the manufacturer but have been feeling sick. I am also taking Nystatin by Teva Pharm....I can't get any information from them either.

I check both meds on the gluten-free drug list and neither are on there. they DO list lorazepam which is generic ativan as being gluten-free but they only list the one company that makes it. I'm assuming that other forms of lorazepam have gluten.

If it's not on the list does that mean that it has gluten?

I've also started on Nystatin for Candida and seem to be feeling really sick form it. It wakes me during the night and am sooo nauseous and sick. maybe it is just the drug itself.

this is soooo confusing and it's driving me crazy...especially when you get sick and you try to figure out where it came from.

any help would be appreciated.

thanks,

mel

Hi Kate,

Boy you sound a lot like me with all the intolerances. How do you do it? I am still having a hard time and often find myself eating something I think is safe and then reacting to it. Vitamins are a little problematic for me as they irritate the heck out of my gut. I just started cutting my vitamins in quarters. Let's see how that works for me. All my blood tests were good....not showing any vit deficiencies.

I am going to columbia presbyterian tomorrow for a consult ....just in case someone is missing something. I know I will NOT go back on gluten for an endoscopy so let's see what they have to say about that. I thought I was doing a good job watching the gluten but test results yesterday showed a number of 35.....still high but at least nowhere near 66 from 4 months ago.

My dr also ran other tests and of course soooooo many more intolerances...ones that I have been reacting to. What do you eat? I am having a hard time with variety and often find myself craving something sweet. I have given into raisins, and some fruits and apple sauce but now...the Candida is in flare! back on a round of Nystatin to help me along. With my immune deficiencies it is hard to keep things in check.

OH WELL................more chicken tonght for dinner!

Soy is a big time killer for me! I get so sick from it within 20 minutes and its gets worse as the days goes on. I it usually takes a few days to calm down. Eggs do the saem thing to me! Thos are already on the NO list. Rice is a hard one. it seems that I cna't do Whole grain brown rice...although I don't get the sick feeling that I get form soy, eggs and milk....it does get me bloated and my guts gets irritated and sour. I've tried white rice in moderation and i seem to handle it fairly well. For breakfast I have been having Beechnut Baby Rice Cereal as a hot cereal and have not been having a problem. Gerber maeks it with soy! so that's out of the question. Beechnut says it right on the box....SOY FREE. sometimes I add a litte beechnut banana ro one of their other cereals and it's ok. Then I stzrted to get daring and ate some walnuts and almonds for protein with breakfast....bad choice! boy did they make me sick....ALL DAY!. so they are off the list too!

The OK list seems to be getting smaller and smaller. ;(

With time I hoe the list can get more varied again. Let's see what the pros at Columbia have to say tomorrow. I want to address my other health issues as well and see if they feel there is any connection. My 2 cents isthat there is a common thread.

Feel better and let us know how you are doing.

OK..guys...I have an appt this Friday with Dr Susie Lee at Columbia Presbyterian. I also put a call into Ann Lee the Nutritionist but she doens't have time to see me this friday. She actually called back and left a message on my machine!

I'm going to try to make an appt with her for next week.

has anyone seen her there and what was your experience like?

i really need some diet guidance as I have soooooo many intolerances and have been suffering terribly with my diet.

any info on what to expect there is appreciated. Of course I will bring whatever blood tests I have so they have something to look at.

I don't know what I am hoping for.....i know that the only real thing that will help is Not eating gluten! I have been trying so hard but have not made enough of an improvement. I just think it has gone on too long udiagnosed that it will take longer to get better.

wish me luck!

i find my diet to be the biggest challenge of all. Eliminating the gluten that I know of is easy...it's all the other stuff that's hard....like hidden gluten. I just got some blood tests back that my dr ran and I came back postive for soo many other food intolerances. so....what do i eat. so far chicken is ok so i'll just have to keep eating that.

i also have gotten sick from restaruant foods and it sets me back for days! It also gets me super depressed and puts me in panic mode.

I have been eating out less because of it. I have a dinner party to go to friday with my sis and her boys (ages 6 and 8). It's mother son dance...so I'm taking one of her sons. The boys are so excited!...I am dreading it. I asked my sister to call ahead regarding the menu but my experience has been that most people don't get it and you might not get an accruate answer. so,I may just eat before I got and then nibble on a plain salad.

With time....as your gut heals I've been told that it gets better. I really pray that it does. Right now I can't do potatoes either so i'm really not getting enough starches and can't seem to put on weight. My face looks drawn and aged and it is upsetting. I also agree with whoever said...the longer you have this disease , undiagnosed and untreated......the harder it is and the longer it takes to get better.

My blood test results for gliadin AB were still high in spite of me THINKING that I am pretty gluten free. They are half of what they were 4 months ago but still high and not where they should be. I am seeing someone at Columbia Presb this friday. I'm sure that nothing can really be done but I feel that I need to see the pros....a GI who knows what they are dealing with.

I think the food diary is a great idea. It helped me to figure out, with the aid of a dietician, what I was intolerant to. things that I might have overlooked she picked up on and I've been avoiding those foods. The thing is there are sooooo many other intolerances that I am sure it will take time to get my diet fine tuned and figured out. I feel sick from food all the time and tyring something new is scary because I never know how I will feel.

hang in there as you learn what your body can tolerate and post when you have questions. I've learned a lot here.

Good luck!