mela14

I was diagnosed with the IBS first........many years ago. Then it got really bad and the GI drs didn't bother to listen..Here it is many years later...and lots of illnesses later that this is finally coming to light. I don't think I'll evr get rid of the IBS as I am very sensitive to various ingredients and foods but at least I know that the gluten was making me ILL!!!! Feeling sick from eating foods , and losing weight is different than just getting bloated or having cramps....the drs. just didn't get it and some still don't!!

HI NJ...ites....Anyone have any experience or know of a Dr Lawrence Pickover? He is in New Brunswick, NJ and was listed on a lot of the celiac sites for GI dr in NJ.

I made an appt with him for Feb 4th...I will be in town that day and want to get started with a GI dr even before I move back up there. Hi associates name is Dr. Jack Rubin..they are affiliated with St Peter's Hospital.

Thanks,

ok......I had lunch 3 hours ago and I feel sick to my stomach. I am swollen, raw and in pain. Right after I ate I started to feel sick....my heart started beating rapidly and nausea set in. I just feel awful...like after eating something with gluten. I had white rice and steamed chicken with some water chestnuts from the chinese restaraunt. I don't eat chinese food but didn't bring lunch today and thought that it would be safe to order white rice and something steamed...Could it be cross contamination??? or is it just that I am sooooooooooo irritated that anything will bother me?

This is driving me crazy!!!

When will this calm down............I don't even want to have dinner tonight!

Help!!!!!

Thanks for the suggestion. I'll try that. I also remembered and posted somewhre else that I had tried a new vitamin with lunch yesterday and although it was gluten-free.....there was lots of supplements in there. I'm sure it was too much for me to handle. Needless to say I am staying away from vitamins for a while.

Thanks for your help

well........thanks for the support and reality check. You are sooo right! WE are ultrasensitive and have to work really hard at staying healthy. I am finally piecing together the different peices of this health puzzle for myself. Boy is it complicated!

What do you eat for breakfast?

I have so many other intolerances...like soy, milk, eggs, peanuts, yeast.....

not sure what to eat anymore.

Thanks,

Thanks Jessica,

I am NOT taking them anymore. In the past they have been more harmful than actually doing any good. Today my gut is sooooooooooo sore and it has gotten me so upset. I just want to go home and crawl up inot a ball! It seems that the more I try to do in so far as supplements...the worst off I am.

Have a great day!

Besides feeling ill quite often I find myself upset and angry over the whole situation. Angry at the doctors for missing this(for years) and still not able to feel better. I feel that it has gone on so long that I now have other intolerances and it is so hard to eat anything without feeling sick. Once I am in a flare up it lasts for days and then of course the depression and anxiety sets in. This is a good place to come ...sharing experience with others and learning. I'm sure it will take a lot more time but this is the road that we are on now.

Learning to read labels is a challenge..but it is a must.

good luck....to all of us!

OK.....I checked the ingredients and here they are: Microcrystalline cellulose, stearic acid, silica, magnesium stearate, croscomellose sodium, silica, sodium copper cholorphylin, and modified cllulose coating.

On one of the other products that this manufacturer makes it had : sodium starch glycolate...........

so i thought it was in here too and I wrote the manufacturer. he said that it did not contain gluten. Now I am not so sure. If its not that then something int eh vitamin part made me ill. My gut today is still sore and irritated. I will have to stay away for vitamins for a while....or at least those that have a thousand supplements in them.

thanks,

OK........I am officially sick to my stomach. I had a baked sweet potatoe and homemade baked chicken for lunch and feel ill.

The only thing that I can think of is that I started a new gluten-free, dairy free, soy free, egg, free, wheat free mulitple vitamin today. My chiro recommended it and we checked to make sure it was ok to take. After having it in my possession for a week I finally gave in and took it with lunch. Now I feel so sick....gut, head, muscles! I am sooooo bloated and am wiped. I feel like I need to lie down! I feel better when I don't eat anything and don't take anything. All this trying to get better is killing me! I've had it!!!!!!!!!!!!!!!!

Venting over!

I just found a dr. Lawrence Pickover in East Brunswick, NJ..anyone know of him?

He was listed on this website.

thanks,

I've noticed that I get nauseous after eating even when it's gluten-free! Does anyone else get this and what should I do for it? My gut feels sour and sore and things just don't sit right. Will this get better as my intestines heal? I also get some stomach irritation no matter what I eat. Lunch was baked chicken and baked sweet potatoe and I feel ill. I did have a bad flare-up these past few days and had to actually stay home yesterday because my gut was so raw and distended. Some gluten may have snuck in there a few days ago in addition to a little bit of milk. I just can't seem to get things to calm down.

any thoughts?

I'm hoping that this post gets on the board. I have not been able to post from home so I am trying now from the office.

Does anyone have any experience with Columbia Presbyterian in NY?

I made an appointment with Dr. Peter Green for the end of March but he does not take my insurace so I am thinking about going with another doctor there that does take my insurance. Her name is Dr. Suzi Lee. I am moving up to NJ in about a month and am looking for someone competent in that area. I wil be moving to Manalapan, NJ and as of now I will make the ride into NY for this appointment.

Thanks,

Just curious how long it took for the fibro pain to subside? Before I even knew about gluten I was diagnosed with fibro and have been treated for that for about 6-7 years. About a year ago they found that I have an IGG deficiency and have been treating me for that too with monthly immunoglubulin replacement therapy. I continued to complain about GI problems, diahrea, sick feeling, muscle pain, fatigue etc. I was told to see an infectious disease specialist because they couldn't understand why I was getting so many viruses! anyway, I'm starting to think that the gluten problem that went undiagnosed for years probably caused my immune system to weaken and eventually showed up in my IGG levels......just my thoughts. The thing is that I continue to have food challenges and occasionally have something that really gets me. As soon as I have a set back with the gut....the fibro flares up and causes a lot of pain. That's when the blues hit. I try to work through it and hope that in a few days it will be better. it's a viscious cycle.

i just wanted to know if your fibro is better and how long it took before you felt a change.

Thanks,

Just listened to it too. I wish I could get my mother tested. She has so many GI problems but of course always blames it on something else.

OK....you sound like I did a few years ago........Hang in there!! You will feel better but only if you take a better attitude. Depression will mess up your mind and not help your body to fight the best that it can. You have a lot of challenges to deal with. The fibro...(like me)...the food intolerances..(like me)...the depression ...(like me)....but take one at a time as it comes up. the first thing you have to do is accept the fact that you are different but still ....loveable! When we are in soooooooooo much pain we tend to think that we are not worthy but...you have to concentrate on all of the good things that you have to offer your fiance`! You are more than what ails you. When you are having a bad day....ride it out. Tomorrow will be a better day! Stay positive.

Last night I awoke at 4:00 am with horrible stomach pain and lower intestinal pain. There was a lot of twisting and lots of cramps and gas pain. I heard a lot of noises too. It was so bad that it woke me up. I also had a terrible sinus headache to go with it so it's either I'm getting sick or I ate something that got me. Probably the latter as I snuck in one of my hubby's potatoe (gnocchi) pasta. later I read the ingredients and it had Wheat flour. I didn't think that one would cause such a reaction but I didn't have anything else that could have done me in like that.

Anyway, I decided to try some toast for breakfast and toasted the new bread I bought yesterday. It was the same gluten-free bread I had been using but this one was a new flavor .... Rasin Pecan. I was a little skeptical because there were more ingredients like fruit juices in there.

So, here it is a few hours later and my guts is sour and sore and swollen!!! I feel like I need to go home and lie down. I can't seem to get it right! Even if I didn't hve that reaction last night to that potatoe pasta i still would have head the raisin Pecan Bread and this probably would have happened anyway. I get so afraid to try new things because of situations like this. It took forever to get me to try the new bread and now I know I won't be having it! has anyone else had this bread? I ca't remember the Manufacturer but I bought it in Whole Foods in the refrigerated bread section. I guess I may have to stick to the regular plain white rice bread.

So much for being adventurous!

I finally got my food intolerance results. It's one thing to know that you feel sick after eating something but to have it in black and white through a blood test is something else.

It seems that my worst intolerance is to eggs...both the protein and the yolk. ............hhhhhmmmmmmmmmno. At least now I feel better knowing why I was so ill for days after having eggs. the next was milk, then wheat and gluten and a bunch of other things. Soy was listed as a low reaction but it really does a number on me and I have avoided having it. Some nuts but walnuts were ok. There was a lot of information there and I am going to try to the best of my ability to work out my diet. I am already feeling better and have not had diahrea just by avoiding gluten. I also put on 2 lbs! yeah....up to 94!

I went to the GI dr on Monday because of the IBS also acting up. He as pretty knowledgeable in gluten and wants to to a biopsy. At this point I don't want to have it done. He says that he needs it to make a real diagnosis especially since the trans glutaminase test was normal. the Gliadin AB IGg were high....but he said that's not enougn.

At this point I don't need the Celiac diagnosis.....feeling better without the gluten is good enough for me. I am not going to have the endoscopy. I may consider it when I move up North.... but then only at Columbia Presbyterian.

I am so happy I did this test. For me it was sooooooooooo worth the money. Although, I've been told not to rely on it 100%, I feel that it is helping me to get on the right track with my diet and therefore sooooooooo worth it.

Will keep you posted,

I had an appt with a new GI dr yesterday and he seemd pretty on the ball. I told him of the gluten issues which have come to light. he wasn't dismissive but suggested the endoscopy for a final diagnosis. I told hime that I had been avoiding gluten for about 2 months now. His response was you are still reacting and you could beggeting it form somewhere. I told him that I fell better when I am off the gluten but find that I am reacting to soy, eggs, peanuts and milk. Yesterday was a bad day as i was sooooooooooo bloated and felt soooooo twisted. It wasn't a sick feeling like eating gluten just like an spastic attack. I had it right after having espresso in the morning. I was trying to avoid milk so I thought I would be safe with that. Bad idea i was in pain all day. he couldn't even do an exam...everywhere he tried to touch or push was bloated and caused pain!. He said that I could have a gluten problem and IBS aws well that flares up realy bad from time to time. We also discussed past history and I mention about a diagnosis of Giardia forma few years ago and treatment with Flagyl (even though later we found out the stool results were negative). He wants me to do a stool test now just in case it is. He said they have better ways of detecting it now. so i guess that's pretty painless and I will try it. He also wants to do a small bowel follow though which I DO NOT want to have . I had it 5 years ago and it showed nothing. He said that he want s to make sure I don't have strictures. I told him that I had surgery 6 months ago for adhesions and went to Germany to have it done because of their excellent treatment there and the fact that they can use a barrier gel(Spraygel) to help the adhesions from not forming again. So far...so good. (It took 7 surgeries to get to this point and I no longer have horrific pulling pain that lasts forever after a bowel movement)

He wanted to put me on the normal librax, levsin, donnatol to help the spasms ...but I told him they realy didn't work. I told heim that Zelnorm helped a lot more and he put me on that. I only take it in spurts when I have bad flare-ups. so this is where I at right now. I'm not sure I want to do the endoscopy or the small bowel follow thorugh ( i hate drinking that stuff) but I will do the stool test.

I am moving up north in 2 months and if I can hang on I would like to go to someone who is a genius in celiac or at least has more of a specialty in it. Maybe Columbia Presb...I've heard good thing about them and checked out their site.

On another note...when I left the GI dr I got a call from the GYN...on my cell while at the Target pharmacy. He calledc to tell me that I had osteoporisis. The bone densit showed a 10% more bone loss in the hips and spine. I was so freaked out I cried in the store(after I hung up)! My gyn was sooooo sympathetic. He is a new dr for me too. I've had such a run around in the past years with what has been going on with me. He feels that other drs missed the diagnosis of the food intolerances and blamed it on GYN....resulting in a total hysterectomy 2 years ago from such sever adhesions (they severd an artery during one procedure starting an avalanche of more ahdesions!) and and no HRT for 2 years (they didn't want to feed the endomterioisi..hmmmm) so now here I am....all this other stuff going on and the original problem still not yet resolved. I guess you could say that I am angry. Last night I was a basket case. This morning I am addressing it differently.

OK>>>>>>>.enough rambling..

another day of trying to make it right. Now if I could only get my gut to simmer down!

I am looking for a good celiac dr. in Miami/Ft Lauderdale area.

I have been working with a dietician but she is really not that experienced in celiac.

At this point a GI dr is needed to help me with the IBS and other problems that come along with celiac.

soy make me sooooooooo sick! immediately too! I get bloated, feel ill, get a migraine....and the sore, sore stomach persists for days. My gut gets totally irritated and distended. I get thobbing pain low in the abdomen that only feels a littel better after a bowel movement.

Now I check to make sure that soy isn't one of added ingredients too!

You are not alone. I have been having a rough time with all this too. I amy be better for a few days and then suddenly something sets me off and I'm sick for a week. The nausea, stomach pain and gas are always there at different levels. I've finally gotten better with the diahrea.

I have been working with a dietician but it hasn't really helped as she is NOT a food allergy speicalist or knowlegeable enough in gluten. I think I might cancel my appointment with her this week. It gets expensive and I'ld rather be working with someone who has more experience in this field.

One thing that did help...was keeping a food diary. I was able to pinpoint things a lot better. Some things that might have been over looked were very clear to me in black and white. I've uncovered other food intolerances. Maybe that's the case with you too.

Hang in there better days have to be coming....especially when you are doing all that you can.

If you fear contamination try having a little something before you go out to have drinks at the bar. Drinking on an empty stomach is not a good idea. For me 2-3 drinks is a lot and I would probably be in a coma!!! oh to be young again...

You need somthing to absorb some of the alcohol. It seems that you are having gluten-free drinks so that's half the battle. good luck with the rest!

I haven't had millet in a while and don't remember if I was ok with it or not. So many things were going on at the same time. I was also using quinoa but remember that something started to make me sick so I stopped both. a few months I started using quinoa again but started to feel sick afterwards so that's I took that off the list.

I remember getting sick at mass....before I knew about the gluten problem. I just came back from mass and didn't take the communion wafer. I haven't had it in about 2 months since I've been attmpting gluten-free. How long will it take to detox? not sure but I've been at it for about 2 months and have my ups and downs. sometimes the gluten sneaks in there unknowingly and sets flare ups back in motion. All we can do is try.

Hang in there...things will get better.

I'm starting to think that my dairy intolerance could be casein.

I don't have anything dairy except for a little milk in my coffee. lately I haven't been having coffee because my gut has been in an uproar! I've been having camomille instead which has been ok but obviously not as satisfying as that first cup of morning java. This morning I thought it was safe to have coffee so I had a cup with milk. I took lactaid with it but about an hour after I had it I started to get bloated and feel sick. My gut feels inflamed and sore. shouldn't the lactaid have helped? maybe I am sensitive to the casein? I am waiting for the results from my York food allergy testing to see what shows up. if it's dairy does anyone know what I can use in my coffee to replace the milk? The rice dream bothers me as it has barley enzymes. maybe I could put a little of the rice dream frozen desert. it is gluten-free unlike the rice dream beverage. hmmmmmmmmmm

thanks,