Help Me!

[whitball]

I am a new celiac. This has been a very difficult thing for me. The last two days have been aweful. I am not sure what I am reacting to. Can anyone tell me the kind of pain that is typical when reacting to gluten? I am having significant abdominal burning and nausea. My esophogus is burning and I feel like something is stuck in my throat and chest. Help!

[Guhlia]

Celiac symptoms vary so greatly from person to person. The symptoms that you described could be in reaction to gluten. Lots of people get severe heartburn (some even diagnosed with GERD and required surgery). Nausea is also a common symptom. Are you sure that you have removed all sources of gluten from your diet including products labeled malt, natural or artificial flavorings, oats, etc...

I don't know how long you've been gluten free, but it often takes weeks to start feeling better, sometimes even months. If you don't maintain a STRICT gluten free diet, you won't start to heal which means you won't start to feel better. I'm not a doctor or a specialist, but my guess is that either you haven't eliminated all the hidden sources of gluten, you're getting cross contaminated, OR you haven't been gluten free long enough to get relief from the diet.

Hang in there! I hope you feel better soon.

[whitball]

Celiac symptoms vary so greatly from person to person. The symptoms that you described could be in reaction to gluten. Lots of people get severe heartburn (some even diagnosed with GERD and required surgery). Nausea is also a common symptom. Are you sure that you have removed all sources of gluten from your diet including products labeled malt, natural or artificial flavorings, oats, etc...

I don't know how long you've been gluten free, but it often takes weeks to start feeling better, sometimes even months. If you don't maintain a STRICT gluten free diet, you won't start to heal which means you won't start to feel better. I'm not a doctor or a specialist, but my guess is that either you haven't eliminated all the hidden sources of gluten, you're getting cross contaminated, OR you haven't been gluten free long enough to get relief from the diet.

Hang in there! I hope you feel better soon.

Thanks for your response. I purchased the Celiac Sprue Association handbook on foods that I can eat. But I am wondering now if all is accurate. When you started out did you start out slow with basic menu items or did you try lots of different things? I have tried all kinds of things, but maybe I need to start out with basics first? I made "gluten free" lasagne on Friday. Maybe this is the cause. I also had wine, but thought that wine was gluten free also.

[Guhlia]

When I started out I had no clue what I was doing, so I screwed up A LOT!!! However, I'm not one of the celiacs that quickly present with symptoms, so I noticed massive positive changes as soon as I eliminated most of the gluten from my diet. I am now completely gluten free and doing well with the diet. I actually find that I eat much better now that I'm gluten free AND the food tastes better than ever.

Not all wine is gluten free. I know that several wine companies use a sealing compound for their barrels that contain gluten. I don't know whether or not this would affect the wine, I'm assuming it would. Again though, I'm no expert. Martini & Rossi Asti champaigne is gluten free as well as Bartles and James NON-MALT wine coolers. I don't know for sure about any other wines. Port (from Portugal) should be safe too. You could call the manufacturer to determine whether or not the wine is gluten free. The number should be on the bottle. Alcohol may just be aggravating your already irritated system though. I couldn't handle alcohol at all for months after my diagnosis. You may want to just stear clear until you're feeling better.

If I were you, if you just started the diet, I would stick to fresh meats, veggies, and fruits for a few weeks until you start to notice significant improvement. Better safe than sorry. It would be a shame for you to stay sick longer than you have to.

Good luck!

[Guest nini]

many celiacs initially have problems with dairy and you may need to be dairy free as well as gluten free for a while until your system can handle it. Also, tomato products and citrus products bothered me tremendously when I was first dx'ed. I recommend you stick to a diet that is naturally gluten-free, that is low in citruc acid and dairy free... oven baked lean meats, mild cooked vegetables, mild fruits, and plain starches like rice and potatoes... stick to this for a while and then gradually add things back into your diet one at a time and monitor any reactions.

[Guest cassidy]

Reflux is one of my symptoms when I'm glutened. I also notice that I have other trigger foods that don't contain gluten but that do cause reflux. Some of the common triggers for reflux are tomatoes (all forms, sauces, salsas, etc.), potatoes (I was surprised at this one), alcohol, peppermint, chocolate, citrus fruits to name a few.

If you are just starting on the diet, I would recommend staying away from foods that are known reflux triggers as well. It took me a month of being gluten-free for my reflux to go away (I used to have it all the time), now it only comes when I eat my trigger foods.

Another good thing is to keep track of what you eat, and maybe limit what you are eating. If you can pinpoint what is making you feel bad, you can avoid it. But, if you keep eating all sorts of foods you may have a harder time figuring out what is bothering you. I would start with foods that are naturally gluten-free and wait a while before trying processed foods.

[whitball]

When I started out I had no clue what I was doing, so I screwed up A LOT!!! However, I'm not one of the celiacs that quickly present with symptoms, so I noticed massive positive changes as soon as I eliminated most of the gluten from my diet. I am now completely gluten free and doing well with the diet. I actually find that I eat much better now that I'm gluten free AND the food tastes better than ever.

Not all wine is gluten free. I know that several wine companies use a sealing compound for their barrels that contain gluten. I don't know whether or not this would affect the wine, I'm assuming it would. Again though, I'm no expert. Martini & Rossi Asti champaigne is gluten free as well as Bartles and James NON-MALT wine coolers. I don't know for sure about any other wines. Port (from Portugal) should be safe too. You could call the manufacturer to determine whether or not the wine is gluten free. The number should be on the bottle. Alcohol may just be aggravating your already irritated system though. I couldn't handle alcohol at all for months after my diagnosis. You may want to just stear clear until you're feeling better.

If I were you, if you just started the diet, I would stick to fresh meats, veggies, and fruits for a few weeks until you start to notice significant improvement. Better safe than sorry. It would be a shame for you to stay sick longer than you have to.

Good luck!

Thanks again for your advice. Today is a bit better than the last few days. I have eaten nothing but meat, veggies and fruit. Hopefully, I can begin other foods in a few months. It certainly is not worth trying anything else at this point. I don't want to feel that sick again!

Reflux is one of my symptoms when I'm glutened. I also notice that I have other trigger foods that don't contain gluten but that do cause reflux. Some of the common triggers for reflux are tomatoes (all forms, sauces, salsas, etc.), potatoes (I was surprised at this one), alcohol, peppermint, chocolate, citrus fruits to name a few.

If you are just starting on the diet, I would recommend staying away from foods that are known reflux triggers as well. It took me a month of being gluten-free for my reflux to go away (I used to have it all the time), now it only comes when I eat my trigger foods.

Another good thing is to keep track of what you eat, and maybe limit what you are eating. If you can pinpoint what is making you feel bad, you can avoid it. But, if you keep eating all sorts of foods you may have a harder time figuring out what is bothering you. I would start with foods that are naturally gluten-free and wait a while before trying processed foods.

Keeping a food diary is a great idea. Hadn't thought of it. Before I was diagnosed in Feb, 2006, I had alot of problems with sauces, salsas, and some citrus. At that time it hurt my bladder, really bad. I was told at one point that I had intersistial cystitis. The last several days the pain was from my throat, clear through to my bladder. Felt like h---. Thanks for your advice. Much appreciated.

[Bonnie]

Whitball, you will probably find that you have other intolerances that will "appear" now you are eating gluten free. I got to the stage where I was reacting to every single thing I put in my mouth. It makes it very difficult to find the culprits. I believe that its due to our guts being so inflamed.

You need to continue as you are with the simple naturally gluten free foods - fruit, veg and meat for now. It will get the healing process well on the way.

As for the wine, I used to drink tons of the stuff until I went gluten free - then I became really intolerant of all alcohol. And I still am - a year down the line. I still give it a try every now and then though I haven't actually come across a wine that does contain gluten. They do, however, contain sulphites, which I was sensitive to at the beginning.

Unfortunately this disease takes a lot of patience but it will get so much better!

Hang in there.

Yvonne

[happygirl]

Guhlia- you said that "you know that several wine companies use a sealing compound for their barrels that contain gluten"---can you please specify?

[whitball]

Whitball, you will probably find that you have other intolerances that will "appear" now you are eating gluten free. I got to the stage where I was reacting to every single thing I put in my mouth. It makes it very difficult to find the culprits. I believe that its due to our guts being so inflamed.

You need to continue as you are with the simple naturally gluten free foods - fruit, veg and meat for now. It will get the healing process well on the way.

As for the wine, I used to drink tons of the stuff until I went gluten free - then I became really intolerant of all alcohol. And I still am - a year down the line. I still give it a try every now and then though I haven't actually come across a wine that does contain gluten. They do, however, contain sulphites, which I was sensitive to at the beginning.

Unfortunately this disease takes a lot of patience but it will get so much better!

Hang in there.

Yvonne

Thanks for responding. I have found these last few days that I am probably sensitive to other foods. Oranges, apples, maybe, sauces. This has been so difficult and I feel like a whiner with family and friends. It's so hard to watch others eat what they want. The executive director of the company I work for offered us all Labatts beer yesterday. I nearly cried because I love beer and I couldn't go with them because I was still so sick. and really I have no choice but to follow the diet or I'll stay sick forever. Thanks for your support. Much appreciated. Tara

[Bonnie]

Thanks for responding. I have found these last few days that I am probably sensitive to other foods. Oranges, apples, maybe, sauces. This has been so difficult and I feel like a whiner with family and friends. It's so hard to watch others eat what they want. The executive director of the company I work for offered us all Labatts beer yesterday. I nearly cried because I love beer and I couldn't go with them because I was still so sick. and really I have no choice but to follow the diet or I'll stay sick forever. Thanks for your support. Much appreciated. Tara

Tara, you can whine all you like here, we've all done it! I know what you mean about the beer and feeling like crying. The first few months are the worst, I promise you.

Once you realise how much better you can feel, it will get easier. I've had to go hide in the toilet a couple of times when everyone here at the office were eating burgers and pizza in front of me. The smell nearly made me mad.

I still have bad days but they are few and far between now. I used to be addicted to bread and I can honestly say I don't crave it at all anymore, and I stand and make 2 dozen sandwiches every night for my kids!

Its probably hard for you to believe right now that it will get easier, but it will eventually become second nature to you.

Yvonne

[whitball]

Tara, you can whine all you like here, we've all done it! I know what you mean about the beer and feeling like crying. The first few months are the worst, I promise you.

Once you realise how much better you can feel, it will get easier. I've had to go hide in the toilet a couple of times when everyone here at the office were eating burgers and pizza in front of me. The smell nearly made me mad.

I still have bad days but they are few and far between now. I used to be addicted to bread and I can honestly say I don't crave it at all anymore, and I stand and make 2 dozen sandwiches every night for my kids!

Its probably hard for you to believe right now that it will get easier, but it will eventually become second nature to you.

Yvonne

Thanks for letting me whine. Almost ready to call an Whambulance! At least thats what I tell the girls in the office when I ready to complain and cry. I do feel a bit better today. Have you had problems with strawberries and corn? I had some gluten-free corn cereal yesterday. I shouldnt have because I was feelilng so crappy. I didn't have and umpf to fix anything. Learned a valuable lesson about being lazy. The cereal almost killed me. I also had a weird experience with apples. I had one make my mouth sore. Almost seemed to have burned it. Does this happen to you?

[penguin]

Tara, you can whine all you like here, we've all done it! I know what you mean about the beer and feeling like crying. The first few months are the worst, I promise you.

Once you realise how much better you can feel, it will get easier. I've had to go hide in the toilet a couple of times when everyone here at the office were eating burgers and pizza in front of me. The smell nearly made me mad.

I still have bad days but they are few and far between now. I used to be addicted to bread and I can honestly say I don't crave it at all anymore, and I stand and make 2 dozen sandwiches every night for my kids!

Its probably hard for you to believe right now that it will get easier, but it will eventually become second nature to you.

Yvonne

Sorry if you mentioned this somewhere else, and it's totally off topic, Yvonne, but 2 dozen sandwiches? So do you have twenty-four children or 4 very hungry football players?

[whitball]

Sorry if you mentioned this somewhere else, and it's totally off topic, Yvonne, but 2 dozen sandwiches? So do you have twenty-four children or 4 very hungry football players?

Hee hee

[Bonnie]

ChelsE,

Ha ha, I meant 1 x dozen and only realised what I typed after I'd already posted. I wondered if someone would comment! No I just have two hungry teenage boys who eat me out of house and home!!

Tara, I haven't had that experience with the "burning" mouth. I know corn can cause all sorts of problems for some people. You really must try and stick to basics right now until you start feeling better. I find bananas are the only fruit I can eat when not well, however, others have problems with them.

I am sorry you are having such a hard time, hope you feel better soon.

Yvonne

[Ursa Major]

Tara, what happens with the apples is called 'oral allergy syndrome'. It means that you are at least mildly allergic to apples (at least at this point) and you need to stop eating them, or you'll make that allergy worse. I have that problem with quite a few foods (including bananas and cantaloupe).

When reading your list of foods you are reacting to, I cannot help thinking you might be reacting to certain food groups. You might want to follow the links in my signature and see for yourself if you can identify yourself in some of that.

[whitball]

Tara, what happens with the apples is called 'oral allergy syndrome'. It means that you are at least mildly allergic to apples (at least at this point) and you need to stop eating them, or you'll make that allergy worse. I have that problem with quite a few foods (including bananas and cantaloupe).

When reading your list of foods you are reacting to, I cannot help thinking you might be reacting to certain food groups. You might want to follow the links in my signature and see for yourself if you can identify yourself in some of that.

I have never heard of such a thing. But, it makes sense. It has taken several days for the swelling in my mouth to go down. Did you ask your doctor to test for this?

[jerseyangel]

With oral allergy syndrome, sometimes it is possible to still eat the food--only cooked. It's not really an allergy--it's closer to contact dermatitis, affecting usually only the lips, mouth and tongue. I have some information on it from my allergist--I can post more if you want to see it. I have it with raw almonds.

[whitball]

With oral allergy syndrome, sometimes it is possible to still eat the food--only cooked. It's not really an allergy--it's closer to contact dermatitis, affecting usually only the lips, mouth and tongue. I have some information on it from my allergist--I can post more if you want to see it. I have it with raw almonds.

It would be great to get additional information. Thanks.

[athena]

My esophogus is burning and I feel like something is stuck in my throat and chest.

i am not a doctor. but i am curious ~~have had your thyroid checked ?

[whitball]

i am not a doctor. but i am curious ~~have had your thyroid checked ?

I've had my thyroid checked out several times and the results were normal.