Hi everyone. I have been suffering for three and a half years with a multitude of symptoms. I have had seven "attacks" in the last few years with severe abdominal pain, nausea, vomiting and end up in the hospital because of it. I believe those attacks are due to ingesting gluten. I have been gluten free for about a year and a half now and it has helped tremendously. I no longer live with the 24 hour nausea and abdominal pain.

I feel better but don't feel great yet. I still suffer most days with nausea after eating I eat including bouts of diarrhea and stomach pains, joints ache. I am beyond the point of frustration and just want to feel good. I don't know if I am suffering from food allergies or what but it seems to be always be something.

I have been eating a very bland diet, cut the sugar out and still after I eat I feel sick. I am going to see my doc next week but they have come to the point of not knowing what to do with me. It is awfully depressing to feel this way. I was mentioned by someone about eosiniphilic gastroenteropathy. I don't know if any of you are familiar with it but I do seem fit a lot of the symptoms especially with the slow gastric emptying, multiple food allergies, no good bacteria in my stomach, candida, nausea.

It just seems that when I think I have things figured out like with the gluten insufficiency that now something else keeps popping up. Any advice would be appreciated....

Tami

hi Tami..so if i figured it out you are a celiac???..hmmm you gotta really watch what you eat and, drink if your gonna go gluten free evrything that goes inot your mouth has to be checked..i mean everything.. you can still eat lots of stuff including fresh meat..no deli's..veggies, eggs, fruits, cheese, milk..some ice creams, some juices, some caned foods(veggies & fruits) as for your cereal grains everything must be gluten free..Make me a list of what your eating..you must be still consuming a little gluten somewhere, thats why you keep falling sick and, you'r back to square one..

let me know :)

I believe I am a celiac although the blood tests of course are negative and I refuse to do the biopsy.

You know I'm basically eating the bare minimum right now. I eat plain white rice with chopped steam veggies, hamburger meat, plain chicken breasts, lettuce salads with annies garlic dressing, potatoes baked. I rarely use butter but if I do it is i cant believe it is not butter. I sometimes have plain potato chips and do the quaker plain rice cakes which I did this morning with a little apple butter and natural PB on my GF list and got nauseous after eating them. I honestly am very careful and keep in touch with my GF board. I can eat plain rice with hamburger and broccoli and no seasoning other than salt and be sick afterwards with diarrhea and nausea. I try to stay away from a lot of preservatives also as I dont think they help whatsoever and have cut my sugar intake down to barely any in the last couple of weeks.

I do a lot of research into eating GF and I honestly think I am doing very well at it. I am very sensitive and a few weeks ago ended up in the hopsital overnight as I had a severe gluten attack. (Ate something I shouldn't of but didnt know the base.) They were thinking a celiac crisis where i was pretty much in shock.

I dont know if it is a multitude of allergies otherwise or not. It just seems what I eat I get sick. If I eat peanut butter M&Ms one time I am sick and the next time not. I know it could be the dairy so I am careful of that also. I know I definitely have a corn allergy also and am very careful in not eating that.

I have been eating very bland. I know with the GF diet most of my symptoms have improved. I never used to be able to lay on my left side I assume from the damage but now am able to tolerate it somewhat. I dont have the energy level yet that I used to and just feel I am still really struggling. I keep thinking before you know I wont be able to eat anything at this rate without a headache, stomach pain or nausea or something no matter how bland I eat...

Enough rambling.... just so frustrated... lol

Tami

no you'r not rambling Tami, i understand..
have you checked the rice do you call companies..?? also whats in the hamburger patty..?? are they home made?? iv been on this diet for like 10 months now and, gained 55lbs..i was a dieing skeleton..this diet is really working well with me.. just check your stuff..also you lip-stick, whatever goes in your mouth or on your lips has to be checked..also ask for any cross-contamination...i also eat lotes of rice..i just mix it with home made suace, beef cubes, peas, mushrooms, or somtimes i put beans instead of the meat..you can do it, your a strong woman.. there are alot worse out there, just imagine blind people that can't see what they are doing, or people with no legs..be grateful..and, save the others form this monster Gluten..

ill be back later..

xox

I was mentioned by someone about eosiniphilic gastroenteropathy. I don't know if any of you are familiar with it but I do seem fit a lot of the symptoms especially with the slow gastric emptying, multiple food allergies, no good bacteria in my stomach, candida, nausea.

It just seems that when I think I have things figured out like with the gluten insufficiency that now something else keeps popping up. Any advice would be appreciated....

Tami[/QUOTE]

Hi Tami,
I have Eosinophilic Gastroenteritis... Yes, it is possible that you have it...
I saw that you were resisiting a biopsy for diagnosing Celiac, but a diagnosis of EG requires biopsies as well... No diagnosis of EG is sure without that...

Have you had any allergy testing? For those with EG it is not always accurate because the foods that are causing the problems are not always IgE reactive.. but it is a good place to start..

Right after my EG diagnosis I had allergy testing.. One of the highest positives at that time was Beef... Now nothing shows up on allergy tests, but my total IgE is really high, indicating allergic reactions going on... Maybe so many that the scratch tests get mixed up somehow...

There are cases of people having Celiac Disease and EG...And others are just allergic to wheat...

My severe EG reactions that landed me in the hospital were apparently caused by a spice... Both times were after eating in the same restaurant, and the same meal... Foods that I had eaten before and since just fine, but that particular restaurant used something that caused a severe GI reaction, bad enough to land me in the hospital for 10 days each time... Don't go there anymore...

[ removed ] read up on EGID.... It is sure something to consider...
I have been posting here about eosinophilic disease in hopes of educating people to the possibility.. especially people who have not been able to get a diagnosis.. It is a possibility that shouldn't be overlooked when you are suffering with no answers... Many people have GERD that does not respond to the common treatments... A lot of them have EGID...

Hang in there, don't give up... You will find the answers... I wish there was a magic way to help you find those answers... But the only thing I can suggest is the scopes...
They are not bad, really... You get put to sleep, and the only thing may be a sore throat after... It can be very worthwhile if you get answers.. :)

yes but, she hasn't been tested for celiacs and, she's on the diet now, so it might be to late, because to get tested she must consume gluten in large amounts..in other words all the junk food possible..im sure she won't do that..bacuz she will get sooooooooo sick its not even funny...just double check everything that you are eating..also soap, tooth paste, gum anything that goes into your mouth..or on your lips..check, check, check..remember if a little gluten goes inside you, damage is being done...

let me know..i will help as best i can

xox

I was hoping to hear from someone with EGID. May I ask what kind of symptoms you have from it? It is true that I won't do the biopsy as they want me to be eating gluten daily for at least four to six weeks. I have been gluten free now for almost a year and a half and I will never go back to eating it again. It just isn't worth it and I know for me that my body is just unable to tolerate it. Do you think if I am still having symptoms and being gluten free that a biopsy for EGID would still show up??? That I would do if I didn't have to eat gluten.

It is funny you mention that about meat. Sometimes I can eat hamburger and feel fine and other times not. I always make everything on my own and the hamburger meat has nothing in it other than my salt and pepper.

I'm a little confused with EGID but doing an IgE will give me a good indication although I would need the biopsy for definite right???

You know I think I am pretty careful. I don't wear lipstick hardly ever and I know my toothpaste is safe and trident gum which i hardly ever do. My kids are also on the gluten free diet and I have seen wonderful improvements with them and their behaviors.

I have been watching but I know it can easily happen... I honestly think it is other food allergies or something else like the EGID... I don't know?!?!?

Tami

Tami :(..hi

what penut butter are you using..alos learn not to trust all the sources and, companies..i don't eat the quaker rice cakes, i use the Inari ones they are gluten free and, biologic..is there any type of gluten in the house, do you have pets what are they eating...if you do, check the food labels of what they are eating..might sound funny, but a freind of mine(celiac)..has a cat, and, everytime she gave the cat food, she felt funny and, it went on for a month or so..because apparently when you put the food in the bole it makes dust and, in that dust might be gluten...she did check the labels and, found out that the first word on the engredients was Enriched white flour..lol. I just want you to check everything..you should check your lipstick if you are wearing it..its important..check everything that you drink, including coffee, tea,,..yes everything.. also what pepper are you using?? i sure hope its ground pepper..[crosses fingers]

let me know

xo x

No you wouldn't have to eat Gluten for Eosinophils to show up in the biopsy...
I understand from others who have been in the same place you are that the thought of intentionally eating gluten again is incomprehensible...

Symptoms vary from individual to individual... It is dependant on many things.. Including what part of the GI tract is involved, and what layer...
You can have excess eos anywhere from the mouth to the anus.. and just in one place and not another... or all along the whole GI tract. Multiple biopsies need to be taken because the eosinophil infiltration can be patchy as well...
Symptoms... nausea, vomitting, diarhea, constipation, bloating, feeling full after only eating a few bites, Gi pain either in a specific place or general, choking, difficulty swallowing, Food getting stuck, reflux, etc... You might have eos disease and have a few, none, or all... It really varies...

A total IgE will not tell you if you may have EG, only if you have allergies...
Sometimes when they do a CBC with diff the eosinophils in the blood will be elevated.. That can happen for a variety of reasons, but when coupled with GI symptoms it will clue the GI to possibly suspect EGID... However, it needs to be noted that not all GI's are aware of this disorder... Awareness is growing, but more in the Pediatric population than in the Adult population...
I could refer you to several centers in the country where there are GI's doing research and treating EGID, but no Adult GI's who specialize in it... At least none I am aware of, and I have been involved with Eo support and awareness since 1997...

For some people eliminating foods to a very basic diet of just a few foods has worked to keep them symptom free.. Others take steroids on a regular basis.
The other thing is it can be any food protein, or all food protein that is causing the problems...
For children, a common treatment is to take away all food and put them on an amino acid formula.. In this case the proteins have essentially been predigested so there is no intact protein to react.. After all the eos are clear on biopsy then foods are added back one at a time to see what is tolerated..There is no reason that adults can't go this route either, but few do.. It was suggested to me by my allergist that I would have to go to a lamb and rice diet and then add foods to find out my allergens...

A word about salt... Iodized salt has corn in it... It is in one of those funny named ingredients that they use to keep it from caking.. I use Kosher salt which also has something added for caking but it is artificial...

Many with EGID can tolerate artificial ingredients, but those natural flavors can be a problem...
Natural flavors can contain things like dairy, wheat, etc...
Since sometimes the meat bothers you and other times it doesn't, you might want to keep a record of where you bought it... There might be some chance of cross contamination that you are not aware of.. And too some places add stuff to our meat. Even tuna can be contaminated with dairy.. It should be on the label, but they sometimes use a dairy based product on the tuna when it is first caught as a preservative...
Frozen veggies may also be dusted with wheat...

There is a lot to the allergy/celiac/eosinophilic diet that can be called into question and make it so hard to eat safely and well and still feel good...

I will try to answer anything I can for you...Hope this has helped...
:confused:

where did you hear that frozen veggies are dusted with wheat.??.i eat those and, im fine with them..

All the info is very helpful!!!!!

You know I have had some piece of food stuck in my throat for about a week now. It is annoying and not particularly bothersome but nonetheless I know it is there. Strange with saying with the food catching in throat sensations.

You know I use iodized salt and never thought twice about it. That may be a source of the problem?!?!?! The pepper I use is McCormicks brand and I know that is gluten free. I know that frozen vegetables may be dusted with wheat to prevent them from sticking, I dont know what brands but I do tend to stay with the fresh veggies to be on the safe side.

I know I have a problem with natural flavors and I tend to avoid them at all costs. Today I had some cashews with salt and then after I ate them got sick and now since reading this I bet it was the corn in the salt...

I also do have a pet but the food stays downstairs and I refuse to go near it because of the fact of the gluten which I know is in it and I don't think that is a problem for me.

I am going to take all this info to my doc on Wednesday and see what she has to say. THe only problem is that I live in NOrth Dakota and there just aren't a lot of resources available here but I am going to be insistent in doing some checking. I would appreciate info on the center in the US just to see if there are any close to me.

Tonight steamed veggies only with plain ground hamburger and we'll see how that goes!!!!

Thank u both for all your help!!!!
Tami

where did you hear that frozen veggies are dusted with wheat.??.i eat those and, im fine with them..

I have a friend whose husband has EG, but is deathly allergic to wheat... He can't eat any frozen veggies because of the wheat... I am sure it is not used by all companies and maybe not even on all veggies.. But as I think you mentioned before you have to call the companies..

It is unfortunate that it is such a small amount that it does not have to be listed on the label, but for those that are very sensitive it is a problem...

When someone has EG and reacts to foods, sometimes it only takes a tiny bit to cause a reaction. Isn't it the same way with a lot of Celiacs? Just a trace can be the undoing... Others I know seem to be able to mess up a little sometimes without a lot of adverse reaction...

Judy in Wa

im not that sensitive i guess..but, i use arctic-garden or, green giant..i know fresh is best but, somtimes i don't got much time in this fast life.. why the feck are they putting this poison everywhere..??? its making lots of people ill..im glad im saved tho.. anyways let me know bikerblue, hey do you got a bike.?.lol cuz i do..got an Intruder..

let me know

xox

Mario,
I know what you mean about needing things to be fast.. I think that the reason we are seeing more allergic reactions, GI allergy disease, etc is due in part to all the chemicals we are now eating...

I am sure that a lot to is just due to the fact that medical science has come a long way and things people used to have to live with are now things that can be treated...

My Grandfather was a diabetic and my Grandmother canned all his fruit.. She made just about everything from scratch.. People just don't have time to do that now and it is a shame.. We rely on manufacturers and they are more interested in the almight buck than keeping us healthy.. I am sure they don't take into consideration all those who can't eat their products, just worry about those that can and do..

Recently I became aware of a product change that took a convenience food away from many dairy allergic people.. Chicken nuggets that had no dairy, now have dairy... They made the change to accomodate people who didn't want trans fats but in the process made them poison to many people...

I hope the new labeling laws will make things more clear cut, but you can never stop reading those labels... Companies change products and you are at their mercy if you don't read the label every tims...

I am glad you have found health with your diet changes, and hopefully the veggies you use are not some of the ones that are dusted... Corn is something else that is everywhere... It sounds like you have a handle on it.. I am glad for you...

Judy in Wa

hi Judy, thanks
yup im fine with everything cept for gluten..why are they putting this stuff everywhere i mean its even found in lip-stick..im a single man and, i have to hold back on kissing a woman..christ. Now that sucks.. :(..i will definetly check here with the companies and, these frozen veggies..lol

bye now

I just learned that there is egg in some lipstick.. Couldn't believe it...
Judy

no what..
Judy be smart..eat all natural and, be natural..don't wear that crap..im sure you'r beautiful..im gonna be lookin for a natural woman..it will kinda go with my lifestlye..yup i go fishing and, hunting..i wouldn't want to go home to a doll filled with paint..lol ;)

smile now :)

You know I totally agree with you guys... there are so many chemicals and preservatives in all of this food we are eating... what else is it supposed to do to us but make us sick!!!!???? I have to say since going gluten free I really miss the fast and convenient foods... especially with my whole family being on it... it really doesn't make life any easier in that regard even though I know it is for the best.

Mario I ride a trek road bike... I am an avid road cyclist which is my passion and has gotten me through a lot of this pain I have been dealing witih in trying to figure out what is going on with my body. I have conquered thousands of miles and wouldn't trade it for anything!!!!!!!!!!!!!!!!

Tami

gogo Tami.. say to yourself "im beautiful".. :).. the healthier i eat the pickier i get..oyi..no but, i guess this diet leads to total isolation..because we know we are eating right..and, we won't stick around with just anybody..thats the way i feel about it..
what you think..

kool beans about that bike..gogogogo

xox

You know I have to agree with you. I have a hard time with the whole gluten situation as sooooooo many people don't understand and think I am totally crazy and so yes I totally isolate myself away from them. You know you really get to find out who your friends are in times like these. It is socially unacceptable to not be eating all the sugar and crap out there. We should be as natural as can be like you said. It is hard no doubt but why are we filling our body with all these unnecessaries??? I know I do it too so I can't say just too much... we all fall in that rut i'm afraid although I am getting much, much better!!!! lol

Do you have trouble with people sticking beside you through all of this??? I hope you have good support... life is hard enough without it.

I live for my biking... do you with your motorcycle? There is nothing better than getting out there and letting the wind hit me in the fast and feeling like I am going to vomit going up a mountain... lol No I absolutely love it and heck people don't get that about me either!!!!! lol

Tami

vomit..noooooooooo please..lol ok what kind of nuts did you eat?? and, the pepper you use, is it powdered pepper..???

answer me.. :)

Hi Tami,
We got wayyyyyy off the EG issue. I hope you get some answers...
I know being in ND you are less likely to have specialists at your door...
You may want to print out some info from the APFED site, and also check out the website for Cincinnati Childrens Hospital in Cincinnati... They have an awesome section on eosinophilic disease.. A FAQ page as well...
At least you will know what you are talking about to the doctor, and hopefully you are lucky and some of the awareness those of us with EG have been working on may have reached your doctor.. You just never know...

See if you can get some allergy testing done too.. Celiac does not exclude you from allergies.. Just limits you even more... And as I think I said before there are cases of people having both EG and CD...

I am off for a while, but maybe I can check back sometime next week..
In the mean time, feel better...
Judy with EG :bouncing:

The pepper is a pure ground black pepper from McCormicks but you know I rarely use pepper, more the salt. Last night I ate some steamed broccoli and cauliflower with a little plain hamburger on the side with some sea salt and perhaps it is the salt making me sick. I also snuck some of my children's gluten free pizza that I made them and that really did me in.... I knew better. Today I woke up very nauseated with some pain as my norm in my side. I eat raw cashews and raw almonds. THe salted ones definitely make me feel sick also.

It is like the simpler I eat the better I feel. I had a diet pop yesterday also that was caffeine free and I bet the corn in there also made me sick. I wonder if there is a list anywhere on line that I can find that is corn free and gluten free. Man my diet is reallly take a turn once again but yet I still do want to check into the EGID. I think I just need to get it all checked out for sure...

Tami