mela14

Hi Bob,

I went throught the same ordeal as you but it took much longer to get a diagnosis. The drs thought and had me believe it was all stress related. I did the Reglan,Prevacid, Propulsid. etc. but never really felt good. I always felt better when I didn't eat but of course you just can't do that.

I feel that I am finally getting to the root of my evils but it hasn't been easy. Although I think I am gluten free I must still be getting it from somewhere as I have been experiencing reactions. I have a lot of problems with medications and haven't gotten that down pat yet. the reality of a little pill causing me so much harm hasn't set in yet. lately, generic zantac has been doing me. I stopped it yesterday and already woke with less pain...hhhhmmmmm.

I guess you just have to keep doing detective work with everything that goes into your mouth. this board is a great place to learn.

good look with everything and know that we will all be right here.

i have learned a lot from this board.

mel

About a week ago I started using generic zantac 150 mg twice a day. last month I tried the Brand Zantac and had no problem so I assumed Zantac was ok.

the past few days the gut inflamation and bloating has been bad regardless of my diet. I have been watching what I eat.

The pain has been more intense way down low like in the pelvic area.About 2 months ago I had the same pain and went to the gyn thinking it was related to that. The gyn said the pain was coming from my bowel and to address it with my gluten-free diet. I have found that I have other intolerances as well and have been working with a dietician. I was a little better for a while but now feel blosted and sick again. the intestinal inflamation is back the pain is waking me during the night. Mornings are bad too as everything is just throbbing in the lower area. As soon as I move my bowels it feels better for a while.

this morning I tried ot figure out where it was coming from and then it hit me....the generic zantac must have something in it that is inflaming me. Of course I realized this after I took the zantac and a few hours later the bloating and pain started again! Does anyone else get these type of sypmtons....low abdominal throbbing pain? I can't imagine what esle it could be. this is the only thing that makes sense. I am going to attempt getting the ingredients from my pharmacy but that is a job in itself. They are not that efficient there. Time to change pharmacies but until I do I guess the ony way to really know would be to stop them and see what happens.

I am so digusted with all this. Today IS NOT a good day!

mel

I seem to be intolerant to all those things that you mentioned too!!!...with the excerption of corn.

keep us posted as to what the dr says.

mel

Thanks for the reponse Tiffany. Actually the bottle does say that it is made in a factory that makes peanut butter. So you are probably right ..there is some cross contamintation. I didn't think I would be that sensitive. Legumes do bother me and cause me intestinal upset but the peanuts actually make me feel ill and my gut stays irritated for a while. Soy does the same thing. It makes me really sick! Before I even knew I had food intolerances I kept thinking I was getting viruses. At least now i am on the right track and addressing it correctly. The first thing to go was the gluten and I feel better without it already. The rest has been a little difficult but at least I am having days when my gut actually feels OK and I can get out and have a NORMAL day! It's very simple ....no more almond butter....as for the raw almonds I am going to ease up on that too for a while and when things are calm I'll reintroduce them to see if I react. Today the gut is still irritated and bloated from yesterday so I will baby myself again. This board has been sooooo helpful to me. thanks for your unput.

Hi guys and happy new year. I haven't been on in about a week but trying to work things out. Just when I thought I was doing better .....almond butter got me really sick this morning. I had an appt with my dietician yesterday and she encouraged me to eat more protein at breakfast. we found out that I had a peanut intolerance after getting really sick after spreading it on rice cakes in the morning so I stopped it. She asked me to try almonds so I did. I can have a few raw almonds no problem but this morning I had a few spoonfuls of almond butter and was immediatley sick afterwards. The same sick sour sore tummy. I felt light headed and weak immediately afterwards and got a headache. Needless to say I've been feeling poorly all day and stayed in. Could it be that almonds are out too??? or is it possible that the almond butter picked up some peanut? either way I guess it's safe to say that I won't be eating it anymore. The harder I try to eat more and different foods, the more problems I run into. I'm hoping that this inflamed gut will subside by tomorrow. I am getting my York results soon enough and although my MD told me to take the results with a grain of salt....I feel it will help me to get my diet together. I actually feel better when I eat less. hhhhhhmmmmmmmmmm

happy to new year to all of you!

Thanks for all the well wishes.

I do keep a food diary and have not had any gluten, soy, dairy, eggs or medications...definately no msg.. I felt as thougth my entire body was going to collpapse; dizzy, weak, uncoordinated, knees buckling and the worst aching muscles! i couldn't even get out of bed. this happened to me a year ago and I went to my dr who threw his hand up and said I don't know what to tell you. that was it. Gluten issues were never discussed with me even with me telling him of ALL my GI symptoms with diahrea.

Anway, while I was in the hospital I thought of a friend of mine who has Crohn's disease and had an experiece with the same crippling problem. he went to the ER a few times and they did not help. Finally, he went to the ER and said he was not leaving until they found out why he felt as though he were ging to pass out. They admitted him and ram more extensive tests and sure enough he was not absoribng B-12. He now takes the B-12 regularly or when he starts to feel a little weak and catches it before it gets that bad.

So, I thought maybe that was happening to me and that these drs are just clueless or because of ins reasons don't run certain tests. They already told me yesterday that they would only run tests in the ER that would bring them results back right away. Anything that needed a longer turn around time could not be done. Of course they were not going to admit me.

I came home and dug into my fridge and found a bottle of liquid B-12 from a year ago and made my husband give it to me(injection) . Afterwards, we saw that it was recently expired....that's how long it's been in the fridge but figured it couldn't hurt anyway. By evening I thought I was little better but the heart palpatations were still there. I had to take an inderal and ativan to get some rest. I can honestly say that this morning I feel better. I have less muscle pain and feel stronger. I don't feel that I am going to collapse. I had my husband give me another injection this morning and then tomorrow will call my dr in NJ and let him know what happened.

I looked up what the spcific blood tests were that he had written on the precription for me to have done tomorrow and it seems that he put some sort of screening for b-12 deficiency. Maybe when I gave him the syptoms he was thinking along those lines.

if this is it then I can't tell you how relieved and upset I am at the same time. I've had so many other incidents like this and no one took an interest in finding out what the heck was going on. My explanations of what I was feeling were always the same.

The B-12 vial was given to me by an old dr about 2 years ago just for the sake of having it to help build me up. The indications for it's use were never clearly stated to me and then again the Gliadin issue was never discussed. By the way, this is the same dr that ran the test for Gliadin AB....got the results (strong positive) and then never gave them to me. hhhmmmmmm

This new dr that is helping me now is very expensive and does not take insurance. I flew from Florida to NJ about 6 weeks ago to see him and it was the best money I ever spent! I feel that I am on the right track now.

i will have to call him tomorrow and let him know that I did these injections and that the blood test I take tomorrow will be reflective of that.

The bottom line.....follow your heart. I knew something was wrong....and I even told the ER dr...maye I am not explaining myself well enough but...."I feel crippled".."I feel that I am going to collapse"..."My legs won't hold me up"..."I feel malnoursihsed"....etc. just a few of the very accurate ways I articulated to him what I was feeling....so much for ER drs! In the end we have to be our own drs!

Hopefully this second shot will continue to give me strength. Let's see what happends!

Thanks again,

OK,

I spent half a day in the ER today hooked up to an IV getting fluids. I haven't been feeling right lately and a lot of other food intolerances have been making me really sick. I have felt myself getting weaker and weaker the past few days with more and more muscle pain and less sleeping at night. I've been waking up in a sweat with a rapid heart rate and the feeling that my legs would not hold me up. Needless to say, the muscle pain and fatigue has been debilitating and my body has been feeling malnourished. I have been ravenous and actually been eating very well these past 2 days with no diarhea or food reactions. I have been watching what I eat very closely but just eating more of the foods that are ok. I will say that my meals these past 2 days have been well rounded.

I felt like something was really wrong and thought I would pass out. My husband took me to the ER and of course they are clueless to gluten issues. They ran simple blood tests that of course were normal and gave me an IV in case I was dehydrated.

I'm home now not really feeling any better and just craving more and more food. Dinner is in the oven as we speak.

The dr who diagnosed the gluten intolerance is from out of this state and I spoke with him about a week ago. He mailed me some precriptions for specific blood work to be done. I had complained to him that I was feeling weaker and achy about that time. I have planned to do that blood work on monday. For insurance reasons they could not draw those bloods today. The tests that he wants me to have done are to check for nutrional and vitamin deficiencies as well as thyroid function. I will have to call him monday and inform him of today's scenario.

this is a very scary feeling...light headed and extremely weak. the hospital dr said it is probably chronic fatigue. Oh well........I've been told I have that but this feels different. I feel so exhausted and malnourished! The gluten dr siad that it's possible that I am not absorbing enough. Has anyone else had this problem or felt this way? and what did you do?

I actually came home for the hospital and had my hubby give me a B-12 injection.

Not sure if it will help but don't think it will hurt.

I'm praying that tomorrow will be a better day.

Hi kelly,

I decided to go with York labs and spoke wi th someone there today. I actually paid for it and they are sending me the kit today. I decided on York because they test for a lot more allergens and I seem to be reacting to a lot of things. I'm sure Enterolab is good but but I don't know which way is better though...stool or blood. I figured I can always do the other one later on.

I really have to do something though because I am feeling awful: malnourished, dizzy, terrible muscle pain and migraines. I have been having such terrible reactions that I can't even sleep at night...between the stomach pains, nausea and sweating. I had some dairy last night that made me sooooooooooo sick. Today I am still feeling bad and have spent the day resting. I seem to get a lot of muscle pain with these intolerances. My dr ordered some blood tests to check nutritional values so I will do that ASAP. I guess he wants to see if I am absorbing OK.

One step at a time.

Mel

OK...guys, thanks for all your help,

I can finally say that dairy is now on the list of foods to avoid. I had butter on a baked potatoe last night and was sick through the entire night. I could not sleep, had terrible stomach pain, sour tummy, muscle pain, migraine and a nauseous sick feeling all night. I actually had to stay home today because I felt so ill. It gave me time to do some research and try to figure this out. I ordered the IGg Elisa Food Scan to see what else I am reacting to. I have to take the guess work out of this. So, if I was reacting to the ice cream before with the eggs...then reacting to the butter must confirm that dairy is doing me in to. a few days ago I had shared some of my husband's coffee, which I never have anymore (i still drink espresso though) and I was sick right after it...of course I added milk to it. so that's 3 different times in the past week that I had dairy and got sick. How could I have overlooked all this? My husband encouraged me to get this food testing done as he is constantly seeing me sick and can't help..........i finally gave in.

OK....so for now dairy is off limits too. Maybe the food test will tell me if it is casein or lactose. I'm thinking it's casein.

I have decided that I want to do further food intolerance testing because I am reacting to so many things. So far, I know that I react to gluten just by how I feel when I eat it. Also, my Gliadin AB (IgG) was strong positive. I have also been reacting to eggs, peanuts, soy and dairy...(although not certain if it is casein or lactose).

In reviewing the testing done by York and Enterolab I see that one is done with stool testing and the other with pin prick blood testing. York lab advertises that they test for 113 different allergens. Enterolab does stool testing for gluten, egg and dairy.

Has anyone had any results with either and if so could you share your experiences with me. I feel I need to get a better handle on what I would react to instead of getting sick after ingesting something. I have been gluten-free about a month now and am happy that I am in the right direction. Who would have thought that a lot of my problems were food intolerances! I was conviced that I had something feeding off my insides that was making me so sick.

Thanks for your input.

Thanks Brudee,

I seem to be sensitive to a lot of the same things as you. Little by little i will learn what my body likes and doesn't like. At least I finally got to a point where I can see that lot of my GI problems are intolerances. Whereas before I wan't sure what direction I was going in. I was soooooo sick I thought I had to have parasites, viruses, something really bad....and was ready to take anything to kill whatever was living in my system. Now I realize It's not what I take but.....what I don't eat that is going to ultimately help me.

thanks,

I've been having the Cape Cod potatoe chips and thing I am doing OK.

I've also been having Terra Sweet Potatoe chips as a treat...LOVE EM...but I had them late last night and woke this mornign with lots of muslce pain. Not usre if it's the chips though as I don' think they have bothered me before. Between, the fibromyalgia, chronic fatigue,immune deficiency I'm not sure what comes form what. So for now....the chips stay! The sweet ones are sooooooooooooo yummy!

The Cape Cod chips are really good too and so crunchy.

For me, I am also soy and peanut intolerant and have to make sure that they are not cooked in either of those oils. I don't know what the Lays are cooked in but you may want to check.

Thanks for the well wishes and the kind words. I guess I have no choice but to give it more time. It's only been about a month and I've had a few mishaps along the way. also, the other food intolerances just flared things up. I'm thinking of doing the York testing for other food intolerances.

I just want my gut to calm down!

Tomorrow is another day so we'll just start again.

Thanks guys

OK..this is an official venting session. I thought I was doing better by avoiding gluten but the truth of the matter is that everything else is bothering me! What is going on? Now it seems that the little bit of milk that was in my coffee(which, BTW I never have anymore but had some of hubby's today at the office!) is giving me the same stomach symptoms! So I guess I can add milk to soy, peanuts, eggs and gluten. I've been having a lot of migraines (almost daily), muscle pain, fatigue, joint pain. These ups and downs are really stressing me out and causing me to have anxiety attacks. My dr. ordered some blood tests that I have to go for to test for nutritional deficiencies. I will do that ASAP. Today I had a bone density test and will have to wait for those results but I already know that the first bone density that I had done 2 years ago showed osteopenia...more fun...so I'm assuming that 2 years later it will probably be worse, especially since the hysterectomy(july 2002). I was not on estrogen because of horrible side effects and not being able to take calcium supplements because of the reactions I had to it...who knows maybe there was gluten in the calcium.....just like the other vitamins that I was not able to tolerate. I am so sick of being sick and tired of trying with no real results! OK........that's it for the venting session. What choice is there? I just wish I felt stronger. I have daily low abdominal pain which I always thought was pelvic from gyn but after going to my new gyn last week....he said that the pain I was pointing to was bowel pain probably due to inflamation! With his exam he concluded that other organs, bladder and remaining gyn area were not responsible for the pain ...as he palpated those and he did not get a pain response! I am so confused and so frustrated! I am tired and weak and just want to feel better! This really stinks............sorry for long sob story.........I'm just exhausted.

Thanks Tom,

I checked out his website. Seemed impressive enough. Thanks!

Just curious........who is this dr fasano? where is he located?

Knowledge is power!! Now when I get a dr. that has an attitide or dismisses what i have to say I just tell him off in the office. I am tired of taking their nonsense and speak my peace right then and there. Then of course if I don't feel they are competent or sympathetic I just don't go back. Sometimes I get so upset with their behavior that I write a letter. It's a great way of releasing anger and you get your point across....espcecially if you have no intention of going back.

It's a shame it has come to this but the bottom line is that we need to get well at whatever cost......no matter who's ego or feelings get bruised.

There were many times that I thought I wouldn't make it....I actually wanted to die....that's how sick I was. I'm taking every stop possible to ensure I won't think that way again............in spite of the downs that come our way.

Good for you Bambam,

I take the Zelnorm right before I eat....sometimes i forget to take it so I actually take it while I am eating dinner. I just started taking it again before breakfast.

When I stay away from it and then start using it again...i can actually feel things moving along and OUT! It's a wild feeling. After being on it a few days thing seem to get back into sync and you are right....a lot more regular!

So between that and going gluten-free I'm sure things will get better.

That's good to hear BamBam,

do you take 6 mg twice a day? I cut them in half and take 3mg but have limited it to once a day. I think I will have to go back to twice. Everything is an uproar and I am reacting to everything that I eat or drink. I am having a cup of tea right now(marhmallow root trea tea) and am already bloated and cramping! I am afraid to eat at this point! I've been gluten-free almost a month but have noticed other intolerances so I am trying to deal with that. Have you been on the Zelnorm continuosly or did you take a break from it? I have taken breaks form it when things calmed down and then resumed when the IBS acted up.

Do you take Zantac or any acid reducers too?

Maybe you have other food intolerances. I am finding out that I have lots of food intolerances since I foud out about the gluten. I also have irritable bowel from non gluten foods. maybe you are reacting to other foods. Why not keep a food diary and right down everything you eat or drink and then how you react to it. that has really been helping me to figure things out. Now.....I just have to feel better!

When I first used it, it gave me diahrea. It's one of the side effeets that goes away after a few days. It helped get rid of a lot of GAS though! I had to stop because of intestinal adhesions..(i've had soooooooooo many surgeries) it was causing me more pain...tugging ang pulling on the adhesions. I had my last adhesion surgery in Germany this past July and did not take it while I was healing. Of course, not yet being diagnosed with gluten intolerance I continued to get sick and bloated. Eventually I used it again to help me thorugh a bad episode and stopped. I had to cut the pills in half as the original dosage was too strong for me and limited it to once a day instead of twice. A few days ago, I decided to try it again and it really helped get the gas out....you actually feel things moving around and out! I don't like to rely on it all the time but at times like this when I'm reacting to most anything it helps. I'm hoping that as I heal I'll be able to tolerate a lot more.

As for the Dom Peridone.....champagne med would be nice!

Hi Linda,

Ok...so I'm not an oddball!! whewwwwwwwww. I'm hoping what you're saying is true and that the other alleriges will get better as the intestines heal. My doctor said the same thing. Only time and a strict diet will tell. How was your diagnosis for gluten intolerance made? did you have blood tests done>which one? or did you have a biopsy done?

I had all the classic symptoms and one of the blood tests came back strong positive. The thing is I am having so many setbacks with these other food intolerances that I feel my intestines will never heal! I had a terrble reaction to soy too and was sick for 2 days. It gave me the same syptoms as the gluten! I started to notice the egg sensitivity even before I had any thought about gluten but always blamed it on something else.

Everytime my dietician has me try something new I react and all the same syptoms return that I feel whatever good I did was just cancelled out by the new reaction.

Maybe I should just not eat for the next few months to give my insides some rest!!!! Everything is in such an uproar.

the hagen das i had the other night had egg yolks I think.... but then again even with the yolks there has to be a chance of getting some of the white in there. Knowing me.....i'm probably allergic to the whole egg!

Thanks for clueing me in.

Thanks Deb,

I am going to have to try some different things for breakfast. Eggs have become a real killer for me. I feel so ill after eating them...nausea, bloating, headache, dizzy...the whole allergic thing. At first I didn't think it was eggs ..I always blamed it on whatever else I had at the meal. After being told I was gluten intolerant..I would have only eggs at a meal and bammmmmm I'ld get sick. I couldn't blame it anything else. Now I am noticing that if it's in something I get sick too. I guess keeping a journal of what goes in my mouth has been helpful in that respect.

So...the list is getting longer.....Eggs, Soy, Peanuts, Gluten...... no wonder I was so sick!!!

How did all this happen? I know it started years ago but got really bad in the recent past.

Before I found out I had a gluten intolerance most GI drs diagnosed me with IBS and prescribed different meds. The Levsin type drugs did nothing for me besides give me migraines and make me tired. Then they came out with motility drugs and they seem to help with the bloating and move things along. They took Propulsid off the market and put me on Dom Peridone(Motilium)...I got it from out of the country. Then came Zelnorm which has helped with the bloating tremendously. I use it when things get really out of control. Like when my intestines are angry at me and react to everything! I'm curious what the feelings are on this drug and if anyone has taken it for their IBS.

I haven't even checked if it gluten-free but it never bothered me in that way so I'm thinking that it is.

thanks for the info......but need something now and the only thing in the fridge is Mylanta gas (I threw out the gas-x)....I'm thinking it is not gluten-free......I will try looking on the drug list.

does anone else out there go through bouts where everything bothers them?

I can't seem to get this to calm down! Every day it's just one thing after the other. I just feel awful.