Just Found Out...

[newinNashville]

I have been having some terrible problems (GI ) systems since Christmas. I have had extreme nausea, difficulty breathing, pain in my back. My primary care doc first suspected gall bladder or H plyori but I passed the ultrasound and the bloodwork came back fine. I have had all kinds of tests...blood work, ultrasounds, stomach emptying tests etc...My doc put me on Nexium and sent me to a GI doctor. I had an endoscope done last week and the nurse just called and said that I have celiac disease.

I have never ever heard of this before. After doing some searches on-line I found this site. Do my symptoms sound familar?? I also have some neurological tremors that started a couple of years ago that the neurologist could not explain. I have had several miscarriages but until now at 33 I have been extremely healthy!!

I can't believe the GLUTEN could have this much havic on my life. I see my doctor for him to go into more detail about my test results later this week, but if you have any advice I would greatly appreciate it. THANKS!! ANY THOUGHTS?

[Jestgar]

A lot of people have the same story. I'm glad you found this site and hopefully you'll get a lot of useful info from the people here.

Amazing, isn't it, that one little protein can cause that much havoc.

[chocolatelover]

Welcome to the most informative place on earth for celiac disease! I've only been a member for a couple of weeks, but the information I have learned here has been incredible (far more from these people than from my doctor's office!).

First off, yes, gluten can, and obviously has, wreaked complete havoc on your life. You are actually pretty lucky that you were diagnosed relatively quickly. It can often take years and years of symptoms before being diagnosed. It is important to know that the only treatment for celiac disease is to live completely gluten-free. Your body will eventually heal itself, but it can't unless you stop putting what's poisoning it into your body. Once you remove that factor, many, if not all, of your symptoms will subside. Your symptoms may subside right away, as is the case with some lucky people, but it may also take months for them to completely go away. Every body is different, you just don't know how yours is going to react.

Second, now that you know you have celiac, you need to get as much information as you can about the disease and how to live with it. The first step is to start eating completely gluten-free.

Gluten, unfortunately, can be found everywhere and in many places you wouldn't imagine (most processed foods, soy sauce, lotions, soaps, toothpaste, cosmetics, etc.). You need to stay away from anything that has wheat, bulger, barley, rye, some people think oats (any thoughts here, folks?), spelt...if you poke around the celiac.com website (the index will take you where you want to go), you'll find a list of safe and forbidden ingredients and some good recipes for gluten free foods. Focus on what you can have, not on what you can't. You also need to start reading, reading, reading labels--like I said, gluten can be hidden in the most obscure places, and you have to be able to recognize the synonyms for gluten. This site has many different spots where you can get lots of information. Don't be afraid to ask questions--people here are great about sharing information, and there's no reason for you to re-invent the wheel here.

Third, you need to encourage your immediate family members to get tested (parents, siblings, children). Celiac is a genetic disease, and it's important to know if anyone else has it so they can begin healing their bodies as well.

Some people with gluten problems also often have trouble with dairy, so you may want to experiment with cutting out dairy as well for a time and see if that helps your symptoms.

Don't be too surprised if your doctor doesn't know a lot about celiac--a great many don't. If you are lucky he'll send you to a nutritionist who specializes in celiac. The learning curve is pretty steep, but once you know what you're doing, it's pretty easy to get along. There are lots of websites and information out there, all you have to do is find it. Look for a celiac support group in your area--they'll be able to give you lots of information as well.

Good luck and don't hesitate to ask questions here, that's what it's for! Let us know how you are making out. I hope you feel better!

CL

[blueeyedmanda]

Welcome to the Board,

I know this is a very hard time, you have been sick but the good news is you just found out what was going wrong and the even better news is you don't need Meds to control celiac you just have to follow the diet. Your body will repair itself in time and you will be your old self again!

It is amazing where gluten can sneak in but don't worry you will be a pro in no time. We will help!

The diet is going to take some time to get adjusted too but soon you will be used to it.

You will find all the answers you need and the support that will help you feel more comfortable with celiac.

[Lisa]

Welcome to the most informative place on earth for celiac disease! I've only been a member for a couple of weeks, but the information I have learned here has been incredible (far more from these people than from my doctor's office!).

First off, yes, gluten can, and obviously has, wreaked complete havoc on your life. You are actually pretty lucky that you were diagnosed relatively quickly. It can often take years and years of symptoms before being diagnosed. It is important to know that the only treatment for celiac disease is to live completely gluten-free. Your body will eventually heal itself, but it can't unless you stop putting what's poisoning it into your body. Once you remove that factor, many, if not all, of your symptoms will subside. Your symptoms may subside right away, as is the case with some lucky people, but it may also take months for them to completely go away. Every body is different, you just don't know how yours is going to react.

Second, now that you know you have celiac, you need to get as much information as you can about the disease and how to live with it. The first step is to start eating completely gluten-free.

Gluten, unfortunately, can be found everywhere and in many places you wouldn't imagine (most processed foods, soy sauce, lotions, soaps, toothpaste, cosmetics, etc.). You need to stay away from anything that has wheat, bulger, barley, rye, some people think oats (any thoughts here, folks?), spelt...if you poke around the celiac.com website (the index will take you where you want to go), you'll find a list of safe and forbidden ingredients and some good recipes for gluten free foods. Focus on what you can have, not on what you can't. You also need to start reading, reading, reading labels--like I said, gluten can be hidden in the most obscure places, and you have to be able to recognize the synonyms for gluten. This site has many different spots where you can get lots of information. Don't be afraid to ask questions--people here are great about sharing information, and there's no reason for you to re-invent the wheel here.

Third, you need to encourage your immediate family members to get tested (parents, siblings, children). Celiac is a genetic disease, and it's important to know if anyone else has it so they can begin healing their bodies as well.

Some people with gluten problems also often have trouble with dairy, so you may want to experiment with cutting out dairy as well for a time and see if that helps your symptoms.

Don't be too surprised if your doctor doesn't know a lot about celiac--a great many don't. If you are lucky he'll send you to a nutritionist who specializes in celiac. The learning curve is pretty steep, but once you know what you're doing, it's pretty easy to get along. There are lots of websites and information out there, all you have to do is find it. Look for a celiac support group in your area--they'll be able to give you lots of information as well.

Good luck and don't hesitate to ask questions here, that's what it's for! Let us know how you are making out. I hope you feel better!

CL

CL;

What a wonderful job in welcoming, informing and supporting....the torch has been passed!

[chocolatelover]

Thanks, MamaGoose--you made my day! I just wanted to share all the information I have learned in the past month or so. I also want people to know that this is a safe place for them to get support, ask questions, talk about their poop, share experiences and frustrations and great stories....after all, no one even laughed at me when I didn't know what "CC" was (cross-contamination, in case you're newer than I am--something to be aware of!).

NewinNashville, hope this helps some...it can be scary and overwhelming at first, but you'll do just fine, especially now that you've found us!

CL

[newinNashville]

thanks guys for the info.

It is kind of bizarre because my endoscope 'hinted towards CELIAC disease' as my doc put it. But my blood work/celiac panel all came back negative. Anyway, my GI doctor made me promise that I would try the diet and give it a couple of months. I go to see the nutritionist is a couple of weeks. I just got the impression that my GI doc didn't know what to do with me so helabeled me with celiac disease. I could be wrong. He said my response to the diet will confirm or deny his diagnosis. DO YOU AGREE?

Also, he urged me to get my kids tested. But if I didn't test positive with the blood test why would they? ?--??? Sorry but I am truly ignorant to all of this. I don't want to put them through an endoscope at their ages..

Thanks for your replies.

Also does Yogurt have gluten in it??

Sorry for all the questions.

You all are so wonderful ..thank you!!!!

[The One]

Welcome! Where to start, I think chocolatelover gave you a lot of info you need to know.

I started the same way you did, for about a year I

[CarlaB]

Most yogurt does not have gluten in it. Kifir is good, too. Both will help you restore balance in your intestines.

Learn to read labels ... with the new allergen labeling, it's certainly easier as you can find whether or not it has wheat at just a glance. I think it's also encouraged companies to use more rice flour to avoid having to say there's an allergen -- there's a greater awareness that it affects a lot of people.

The other things to worry about are barley (malt), oats (most are contaminated and some celiacs are sensitive to the oats themselves), and rye. Usually these will be clearly marked.

Don't get overwhelmed by it all, it becomes second nature after a while. It seems in the beginning like you'll never get rid of all the gluten in your life, but you will.

Remember, meat, eggs, fish, fruit, veggies, rice, and potatoes are all naturally gluten-free! That gives you a start. Tinkyada is great pasta.

I would avoid eating out until you have the hang of it. If you must eat out, go to a place with a gluten-free menu -- PF Changs, Outback, Carrabas, Maggianos (no gluten-free menu, but the chef comes to your table), Cheeseburger in Paradise.

If you're out and in a bind there's a little fast food that you can have -- Chick-fil-a grilled chicken salad. You can also have their waffle fries if they use a dedicated fryer (they usually do, but ask). Also, Wendy's chili and frosties.

I would avoid getting burgers with no buns or other things that are easily contaminated.

Welcome to the board!

[rez]

Wow. You're lucky to have such a liberal doctor. It's great that he is having you try the diet. I'm glad he's not just taking a black and white approach to treating you. I think the diet will tell you a lot. Good luck.