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[Darby]

I have felt sickly now for a very long time. I've been going to a chiropracter/kinesiologist for many years and just recently (this week) I went to a gastrointestinal dr. The first test they ran was a blood test. Just got a call from them and said that the tests showed that I was sensitive to wheat. So, now I'm scheduled for an endoscopy for a biopsy of the intestine.

SCAREY!!!!! I'm terrified. They said that they will give me IV sedation along with the numbing spray in my throat. I'm terrified of getting sick -- as in throwing up!! I also suffer from emetophobia.

They said they want to rule out celiac disease. I have all the symptoms tho after reading about it.

So, now, yes - I'm feeling sorry for myself as I got off the phone with the Dr. and sat here bawling my eyes out.

My favorite foods and just about all I eat are foods that are prohibited.

Is this a death sentence? I'm 45 years old and I'm supposed to change my whole eating habits. I remember trying some gluten-free bread a long time ago and couldn't gag it down. I think it was made out of rice flour.

I'm sorry - I'm just very depressed right now and very scared and feel very alone.

Darby

[KaitiUSA]

Don't go off of the wheat and everything until after the biopsy because going off may change the results.

You are not alone in feeling this way. You may feel overwhelmed and out of control but it really gets alot easier with time and it will become a normal part of your life before you know it.

This site is filled with wonderful people and alot of them know more then most doctors when it comes to celiac. If you have any questions just ask Feel free to email me anytime too.

[ianm]

No it is not a death sentence at all. It is the beginning of a new and MUCH healthier lifestyle. I was sick for 36 years and when I finally found out what was wrong I eagerly embraced my new lifestyle. I have energy and mental clarity that I never thought possible. There are plenty of things out there to eat. I have discovered so many new things that I would have never even considered eating before. I don't miss the things I used to eat at all. There is a lot of good information and very informed people here to get you on the right path. It seems overwhelming at first but in a few months you will get the hang of it and wonder what the big deal was.

[stef-the-kicking-cuty]

Hello Darby,

don't be afraid of the biopsy. When they give you a sedation I think it's not that bad at all. But I can feel with you, because I was so afraid, that I didn't get a biopsy at all. But I think it would have been better, if I had gotten one. A lot of people on here say, it's not that bad with sedation though.

Kaiti is right, don't start a glutenfree diet, before you had your biopsy. The results of your tests can be wrong, if you do that.

The glutenfree diet itself isn't so bad. We can eat glutenfree pasta, pizza and bread. And if you know, what brand you have to use, it can be very yummy. You probably made the same mistake that most of us made in the beginning with this superdry ricebread. It's so hard after a couple of days you could kill a burglar with. My advice, if the test results show, that you've celiac. Get a breadmaker and Bette Hagmans book "the glutenfree Gourmet". There are very yummy bread recipes in there. And it works much better with a breadmaker also.

If you have any questions, you can always come to this message board and keep us posted about your results.

Stef

[Darby]

Don't go off of the wheat and everything until after the biopsy because going off may change the results.

You are not alone in feeling this way. You may feel overwhelmed and out of control but it really gets alot easier with time and it will become a normal part of your life before you know it.

This site is filled with wonderful people and alot of them know more then most doctors when it comes to celiac. If you have any questions just ask Feel free to email me anytime too.

Just been reading more posts on this site. I have terrible anxiety and I see that is one of the symptoms. Also weight loss... Does this mean I'll get fat if in fact my tests come back positive and I need to go gluten-free? Will the anxiety go away once on a gluten-free?

I wish my Dr. had not told me that I could have celiac because I'm a research fiend and of course I went on the net and did the research. So I start to think: I could feel better if I don't eat gluten.

But I know I have to keep eating it til the tests are over.

My hubby came home to find me blubbering in front of the computer and of course I freaked the poor guy out.

After I explained everything to him, he said, "don't worry, we will throw everything out of the kitchen and I'll join you. I don't need bread." He's great but I don't think he realizes it's not just bread.

what do you put on salads for salad dressing?

Darby

[KaitiUSA]

Just been reading more posts on this site.  I have terrible anxiety and I see that is one of the symptoms.  Also weight loss...  Does this mean I'll get fat if in fact my tests come back positive and I need to go gluten-free?  Will the anxiety go away once on a gluten-free?

I wish my Dr. had not told me that I could have celiac because I'm a research fiend and of course I went on the net and did the research.  So I start to think: I could feel better if I don't eat gluten.

But I know I have to keep eating it til the tests are over.

My hubby came home to find me blubbering in front of the computer and of course I freaked the poor guy out.

After I explained everything to him,  he said, "don't worry, we will throw everything out of the kitchen and I'll join you.  I don't need bread."  He's great but I don't think he realizes it's not just bread.

what do you put on salads for salad dressing?

Darby

No...not everyone experiences weight loss, some experience weight gain with celiac. Once you go gluten free it does not mean you will gain weight at all so don't even worry about that.

I had bad anxiety and mine got so much better on the gluten free diet....yours probably will but I can't guarantee that because everyone is different. Your body with celiac is deprived of vitamins and things it needs because of the malapsorption. I recommend you get on a liquid vitamin, enzymes, and probiotics.

It is very helpful to have someone who is so supportive of you.

There are brands that will not hide gluten and will say wheat,rye,barley,oats right on the label. Kraft salad dressings are good because Kraft is a brand that will clearly say wheat,rye,barley,oats on the label so all you have to do is check for that. There are quite a few brands that will do that. There is alot of great gluten free products, it's a matter of finding the good brands and this site is great for that.

If you want more info on those brands that won't hide anything there are a few threads on here with that or you can email me and I can help you out that way. Good luck

[stef-the-kicking-cuty]

Hello Darby,

if your anxiety will get better I can't tell you. But mine definitely went better. It's not completely gone, but it's better.

And what concerns the weight. I think, if you're a sports person you shouldn't worry to much. I'm the sportive type, too. And before my diagnosis I had so much pain and was so much blown up, that I couldn't really do sports anymore. Which caused more wait again. Then after the diagnosis I lost a lot, because I kind of freaked out in doing sports. I did a huge amount of sport first to compensate the long breaks I had before my diagnosis.

Congrats to your great hubby. Mine just mentioned that, too. But a little bit later than yours. I'm almost a year now into the diet and he just said this about three days ago. I think it's really nice, if you have somebody that cares that much about you. But just so that you think you're not alone. My husband first thought, it's only in bread, too. Until I explained it to him. And than he said, wait, you're right, and it's in this and that, too...

As salad dressing you could use:

- all Hellmann's salad dressings

- Wish-Bone's Ranch dressing (fat-free, lite and regular)

- Kraft: seven seas and regular

That's what I use pretty much.

By the way, the Kraft company lists all wheat clearly on the label. So you just have to read the labels carefully.

Stef

[stef-the-kicking-cuty]

Haha, Kaiti, we almost answered the same time I was already in the process of writing mine, when you posted yours...

[tarnalberry]

Welcome.

Good luck on the 'scope, but I did want, along with everyone else, to assure you that it's far from a death sentence. It may seem that way because you're used to eating wheat, but you can form new habits that don't involve eating wheat if that's the way the test results go. Spend some time, while you're waiting for your appointment, reading through the posts to see how people are adapting to this issue in their lives - from the new folks to the old hats - and you'll realize that it is an adjustment, but one that needn't take away your enjoyment of food.

[Darby]

Thank you all! You've already picked up my spirits. I guess it was the shock of it all when the Dr. first called and meantioned CELIAC and I freaked.

I just want to feel good again. I'm so glad to hear that there are salad dressings out there that are safe. I LOVE salads.

Kaiti: I have been on digestive enzymes and probiotics for quite some time now. Along with other herbs like slippery elm etc.

Those might be making me feel somewhat "healthy" and if I have to go wheat free, maybe I'll feel great.

My holistic dr. just put me on a product called total systemic D-Tox and my gas buildup has subsided. Maybe I would feel horrible if I wasn't taking some of these things. I don't know.

About a year ago maybe longer, my holistic Dr. (through his tests) said that I was wheat intolerant and made me go off wheat for a few months. I don't think I went completely gluten-free tho. I just watched wheat - like breads and pastas.

I don't remember how I felt. Then he said I was clear and I went right back to eating breads etc.

I know these are alot of what ifs... but, what if it comes back negative for celiac but I'm wheat sensitive?

I should probably go gluten-free to feel better right? Or how far would I need to take it?

Right now my symptoms are: nausea sometimes after eating. I get more nauseaus when I have thousand island dressing on salad. Sometimes while eating dinner, I can only eat small amounts before I start feeling nauseaus. Other times I feel just fine. I hate a bowl of oatmeal with goat milk and two slices of toast and I felt great. ?????

Stool -- in the past 6 months it has become loose. Not diarrhea, just loose. Sometimes I get ALOT of gas and sometimes none at all.

It's all very strange. And anxiety has gotten a bit worse over the past year or so. I had been getting headaches but my holistic Dr. got rid of them. I know I should stop worrying about it and just wait for the test and results. I go in on the 12th and we leave for Maui on the 17th. I HOPE I find out something before we leave! I want to feel good for our vacation. That's my biggest worry --- that I will feel sick on our vacation. I wish I could postpone our vacation but everything is set and non-changeable

Darby

[KaitiUSA]

Were you tested for the celiac panel or for a wheat allergy? There are certain tests used to detect celiac that are very specific and then the biopsy is just to see if there is any damage yet..the outcome of that does not necessarily determine whether you are a celiac or not. An allergy test will not detect celiac because celiac is not an allergy.

Your symptoms do resemble ones of celiac but even if it is just wheat sensitive alot of the same foods you will need to eliminate.

Even things like lipstick have wheat starch in them and it gets very in depth but once you go gluten free its easy and with a site like this it will help out alot.

It's good you are on enzymes and probiotics..those are very beneficial. Vitamins(prefer liquid because of the way it is absorbed) are also essential..have you also been taking those?

Looks like you are on the right track

[jknnej]

Darby,

I, too, have emetephobia and I had a colonoscopy in December. That is worse than endoscopy b/c you have to drink an entire bottle of laxatives and a lot of people throw up from it. As you can imagine, I was panicked about that. It wasn't pretty but I didn't get sick. At least with the upper endoscopy you will not have to prepare in that way-so don't worry!!! The sedation meds do not make you nauseated at all.

I lost 10 lbs after going gluten free-wheat makes you bloated. I think, though, some people gain weight because they have been feeling so ill for so long that when their tummy finally feels better they can eat more!

I have a lot of nausea, too, but I think people like us often have nausea that can also be psychosomatic because we are so afraid of feeling ill. This can cause the anxiety. I understand about the vacation;I just got back from a trip to NY. I was freaking out for months beforehand for the same reasons as you. don't worry yourself sick; it will turn out oK.

I got some xanax for anxiety. it works and it doesn't make me nauseaous. If you're like me and I'm pretty sure you are, you probably hate to take meds. I panic every time a doctor gives me medicine b/c of the emetephobia. But I can take it only as needed and it really helps. I don't recommend you do the same but you can always ask your doctor about the possibility of anti anxiety meds. I only took it a few times and I haven't needed it since. I have a natural doctor and a regular one. The natural one doesn't like xanax, but you know what? When I'm freaking out I need some help sometimes! She did say as long as I took the as needed kind it wasn't too bad. So there are options out there for you.

How long have you been emetophobic? what started it?

Oh there are so many wonderful gluten-free foods you can eat-just wait. Once you learn the ropes things will be great. It just takes some time.

Please don't worry about the test-you will be sedated and won't feel a thing. And you will not throw up! I have to get one done soon and I'm not even worried. And i'm terrible with my phobia.

I'm glad you're here; it's nice to have someone to talk about this with. it is very embarrassing for me to admit-how about you? my hubby knows about my emetephobia-if he has to be sick he even goes outside! i told him he didn't have to do that but I'm secretly glad. I can't handle that.

Write soon,

jennifer

[Darby]

Were you tested for the celiac panel or for a wheat allergy? There are certain tests used to detect celiac that are very specific and then the biopsy is just to see if there is any damage yet..the outcome of that does not necessarily determine whether you are a celiac or not. An allergy test will not detect celiac because celiac is not an allergy.

Your symptoms do resemble ones of celiac but even if it is just wheat sensitive alot of the same foods you will need to eliminate.

Even things like lipstick have wheat starch in them and it gets very in depth but once you go gluten free its easy and with a site like this it will help out alot.

It's good you are on enzymes and probiotics..those are very beneficial. Vitamins(prefer liquid because of the way it is absorbed) are also essential..have you also been taking those?

Looks like you are on the right track

hmmm... I'm not sure. They just said that my bloodwork came back showing antibodies sensitive to wheat. Or something to that effect.

And they want me in on Thurs. for the biopsy to rule out celiac. So as of right now, they don't know if it's celiac or not.

No, I'm not taking any vitamins yet. Every ones I've tried in the past upset my stomach.

Darby

[stef-the-kicking-cuty]

Hello jennifer,

what is emetephobia? And you guys don't have to be embarrased on this message board. We can talk about everything.

Stef

[KaitiUSA]

hmmm... I'm not sure. They just said that my bloodwork came back showing antibodies sensitive to wheat. Or something to that effect.

And they want me in on Thurs. for the biopsy to rule out celiac. So as of right now, they don't know if it's celiac or not.

No, I'm not taking any vitamins yet. Every ones I've tried in the past upset my stomach.

Darby

You need to find out if you were tested for celiac...there is a 5 panel test for that. I also recommend getting a gene test done.

As I said a biopsy will not guarantee you do not have celiac...it will just show if you have damage at this point or not..it can be a good tool to detect it but there are just certain blood tests that are specific.

These tests you should have done: (so check and see what you were tested for)

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

[jknnej]

hi Stef,

Emetephobia is the fear of throwing up. I have that plus the fear of hearing/seeing others throw up.

Mine stems from a traumatic childhood experience. My doctor says I have post traumatic stress disorder. It can be very bad. Some people don't even go out because of it.

I'm not like that but I do panic sometimes when I feel sick or when I'm in public-like on a plane where I can't go anywhere if someone is sick.

emetophobes HATE to take medicine or have medical procedures because, of course, there's always a chance the meds will make you sick or the procedure will make you sick.

It is SO embarrassing for me to admit. Thanks for making me feel comfortable with it. I haven't mentioned it here before, but since Darby did I thought I would let her know she is not alone. It does make you feel very alone. It keeps me from going to parties or clubs or bars or anything like that-it always has and it probably always will! It's nice to be married and out of that college scene because I always felt very alone. Everyone else would want to go to a bar and drink except for me-Darby are you like this?

[Darby]

Darby,

I, too, have emetephobia and I had a colonoscopy in December. That is worse than endoscopy b/c you have to drink an entire bottle of laxatives and a lot of people throw up from it. As you can imagine, I was panicked about that. It wasn't pretty but I didn't get sick. At least with the upper endoscopy you will not have to prepare in that way-so don't worry!!! The sedation meds do not make you nauseated at all.

This is good to know!!

I have a lot of nausea, too, but I think people like us often have nausea that can also be psychosomatic because we are so afraid of feeling ill. This can cause the anxiety. I understand about the vacation;I just got back from a trip to NY. I was freaking out for months beforehand for the same reasons as you. don't worry yourself sick; it will turn out oK.

LOL - It's a horrible cycle isn't it?

I got some xanax for anxiety. it works and it doesn't make me nauseaous. If you're like me and I'm pretty sure you are, you probably hate to take meds. I panic every time a doctor gives me medicine b/c of the emetephobia.

OH YES - I'm exactly like you. When I'm given something to take, I immediately come home and look it up on the net to see if the side effects are nausea!! Or post on the emet board to see if anyone has taken it. My gp gives me a prescription for Lorazapam and Compazine. Compazine has been my lifesaver. But like you, I only take as needed and only if I need them badly. I don't like taking meds. I too have a natural Dr. and a regular one and now a gastro one. GEEZ!!! My natural one doesn't like me taking any of the above but I'm the same as you -- it's better than freaking out completely.

How long have you been emetophobic? what started it?

I've been an emet as long as I can remember. I have no idea what started it either. I remember as a kid, we were driving to Disneyland and in the car was my cousin who was about to get car sick. My dad was driving and my uncle told my cousin, "it's ok, here just vomit into my hat."OMG!!!!! I freaked and tried jumping out of the car while we were going down the freeway. My dad almost wrecked the car because he had to pull off the side and let me out and the cousin who was sick.

As for myself - I will do whatever it takes to NOT get sick! I have stayed up all night long sweating and taking deep breaths and trying to watch old sitcoms (to keep my mind off it.). I thought I was crazy til I found an emet board and found a whole bunch of people with the same thing. I don't feel crazy any longer.

I'm glad you're here; it's nice to have someone to talk about this with. it is very embarrassing for me to admit-how about you? my hubby knows about my emetephobia-if he has to be sick he even goes outside! i told him he didn't have to do that but I'm secretly glad. I can't handle that.

My husband is very good about it too. And it used to be very hard to talk about (this phobia) but its getting a bit easier. Knowing there are alot of other people with it helps. Do you freak out when people at work say, "I don't feel well" or "I vomited all night last night"?

I run the other way and try and not touch anything they touch or wash my hands all the time while I'm there.

Darby

[jknnej]

OMIGOD Darby I am JUST like you! When someone comes into work that way I don't even breath around them!!! I keep hand sanitizer in my purse, car, and on my desk!! LOL it is SO amazing to meet someone else like this!!! I've been on emet boards but I don't go too often because it makes me feel worse about myself!!! Like i am some kind of freak, so I stay away. I don't want to get like some of those people, you know?

Wow! I look up all my meds too on the net and usually read the pamphlet 30 times before taking it and try to read stuff into the instructions!!!!

My phobia stems from a boat trip when I was 8. Big storm, 200 people getting sick everywhere.

I have fought nausea for over 14 hours b/c I refuse to throw up. It's terrible. I rarely throw up. I get nauseated all the time but rarely actually throw up. The last time was almost 4 years ago.

Thank god you're here-it is really doing me good to talk about it!!

What are those 2 meds you mentioned? My doctor won't give me anti nausea drugs. What do they do?

[Darby]

OMIGOD Darby I am JUST like you! When someone comes into work that way I don't even breath around them!!! I keep hand sanitizer in my purse, car, and on my desk!! LOL it is SO amazing to meet someone else like this!!! I've been on emet boards but I don't go too often because it makes me feel worse about myself!!! Like i am some kind of freak, so I stay away. I don't want to get like some of those people, you know?

Wow! I look up all my meds too on the net and usually read the pamphlet 30 times before taking it and try to read stuff into the instructions!!!!

My phobia stems from a boat trip when I was 8. Big storm, 200 people getting sick everywhere.

I have fought nausea for over 14 hours b/c I refuse to throw up. It's terrible. I rarely throw up. I get nauseated all the time but rarely actually throw up. The last time was almost 4 years ago.

Thank god you're here-it is really doing me good to talk about it!!

What are those 2 meds you mentioned? My doctor won't give me anti nausea drugs. What do they do?

In my last post I tried to quote certain parts but it didn't come out right - oh well.

Lets see.... about the anti nausea meds like Compazine. Great stuff. If you feel real nauseaus, you just take one compazine and it bascially makes the brain not recognize the nausea.(if that makes sense) Now if you've been food poisened or something like that and your body has to rid itself -- you're going to vomit anyway.

But, otherwise, the nausea goes away. It takes about a half hour to an hour for it to work.

It makes you a bit sleepy but a nice relaxed sleepy feeling.

The Lorazapam is just valium. It too takes away some of the nausea but not like the Compazine.

I told my gastro Dr. that I use it as a crutch -- at least I know I have it available if needed. I told her I was an emet and she understood and knew all about emets!!! I was quite shocked. She said that was fine for me to use it as a crutch - if it makes me more comfortable.

Darby

[jknnej]

Oh you are lucky! My doc won't give my anything-she said to take over the counter if I feel sick. It is frustrating.

My friend at work has Zofran but it is so expensive that she only gets a little at a time.

[Darby]

In a pinch you could always use Dramamine. I have used that too and it works well with nausea.

[KaitiUSA]

I had bad nausea pre gluten free and when I am glutened I get it bad too. I use this homeopathis spray for under the tongue and its seriously like an epi pen for me...I keep it with me wherever I go and it works in 5 minutes or less all the time.

For nausea I also use ginger and teas like peppermint

Altoids are also good to carry around too.

[Darby]

I had bad nausea pre gluten free and when I am glutened I get it bad too. I use this homeopathis spray for under the tongue and its seriously like an epi pen for me...I keep it with me wherever I go and it works in 5 minutes or less all the time.

For nausea I also use ginger and teas like peppermint

Altoids are also good to carry around too.

what is the spray called? I have a cupboard of peppermint tea. But when I'm seriously nauseaus, I can't take anything in. I take just enough water to take my tiny pill down.

Since you've been gluten free - are you nauseaus anymore at all? I'm sure you'll get nauseaus sometimes like from over eating.... or viruses etc. but the nausea for no reason type of nausea.

I'm so tired all the time too. Every once in a while I have a burst of energy but most of the time, I just want to lay around. Sometimes it's a chore just to move!

[KaitiUSA]

Nope no more nausea Only when I am accidentally glutened. The spray is called Stomach Distress and its made by Liddell. It says on the bottle it is for nausea, cramps, indigestion ...just to name a few...it works like a charm...I was skeptical of it at first but now I don't know what I would do without it...I have just about one for each purse

[jknnej]

Kati, where do you get this spray? I've got to get some. And of course it must be gluten-free if you use it!

Darby, I still get nausea for no reason at all. Of course, I've only been gluten-free for 4 months, but i still get it all the time.

The stomach cramps and bloating I used to have pre diagnosis, though, are now gone. Overall I feel much better.