This Is Hard.....

[megifluflu]

I have been suffering from digestion problems for four years. I hate to be so dramatic, but I have never been so sure about something in my whole life. I heard about celiac disease from that chick on the View and checked it out. My mother has thyroid disease and ulcertive colitis(sp?). I dont really know if thats connected or not but it sounded like it could be.

This whole this is just kinda overwhelming. I have been dealing with this for a while now, and I'm only 23. Im scared that this isn't going to be what is wrong with me. But its the closest I have ever been to believing that I just might have found something. I have tried everything else.... A GI doctor at Vanderbilt told me that I just had IBS and that I'd be fine. I believed him until the meds for IBS made me even sicker than I already was. That was when I still had medical insurance. Now, I couldn't afford the tests it takes to prove that I have this disease.

So, with much thought and disgussion, I decided to go ahead and try not eating gluten for awhile. If anyone has any advice please let me know. I just found out about this two days ago. I believe it to be a godsend. I had feared that I would forever be in pain and now I feel like there's hope.

~Megan

[tarnalberry]

If you can't get tested via blood chemistry, testing via the dietary challenge is a good route! Make sure to stay 100% gluten free, avoid contamination, and *be patient*! You'll probably want to stay gluten free for at least a month to see if it makes any difference.

[ravenwoodglass]

I have been suffering from digestion problems for four years. I hate to be so dramatic, but I have never been so sure about something in my whole life. I heard about celiac disease from that chick on the View and checked it out. My mother has thyroid disease and ulcertive colitis(sp?). I dont really know if thats connected or not but it sounded like it could be.

This whole this is just kinda overwhelming. I have been dealing with this for a while now, and I'm only 23. Im scared that this isn't going to be what is wrong with me. But its the closest I have ever been to believing that I just might have found something. I have tried everything else.... A GI doctor at Vanderbilt told me that I just had IBS and that I'd be fine. I believed him until the meds for IBS made me even sicker than I already was. That was when I still had medical insurance. Now, I couldn't afford the tests it takes to prove that I have this disease.

So, with much thought and disgussion, I decided to go ahead and try not eating gluten for awhile. If anyone has any advice please let me know. I just found out about this two days ago. I believe it to be a godsend. I had feared that I would forever be in pain and now I feel like there's hope.

~Megan

Hi Megan, Welcome to the boards. The best advice that any of us can give you is to spend time checking out posts here and also be sure to throughly check out info on the boards home page. The celiac sprue association also has a good site to check out and I am sure there are others.

When you are first starting the diet it is a good idea to cut out dairy also for a month or two and try to eat as fresh and whole foods as you can. Don't go nuts at first trying all the specialty products, keep it simple. Go for fresh or frozen veggies and fruits, rice and potatos, beans and meats and cheeses that are as unprocessed as possible. Avoid grain vinagers, alcohol and sodas at first, once you have been feeling good for a bit then you can add things in that are new, processed or that you might react to.

Dietary response is a valid way of diagnosis and you don't need anyones permission to do it. Be sure to check your personal care products, hair products and craft supplies for gluten also.

Best Wishes and I hope you get some relief soon.

[GlutenWrangler]

Megan,

Doctors are horrible at diagnosing celiac disease. They would rather diagnose something that requires medicine, like IBS. If you believe that you have celiac disease, and the diet makes you feel better, that's all you need. Only you can make yourself feel better. I know that it's hard, especially at this age. I'm 22, and couldn't think of a worse time to get this disease. But if you're patient and diligent, everything should work out ok in time. Good luck.

-Brian

[NoGluGirl]

Dear Megan,

I am 24, and know exactly how you feel! I was taken up to IU Med in Indianapolis when I was 18. I went through horrific testing, only for them to tell me they thought I was crazy pretty much.

There was a whole bunch of doctors in a team working on me up there, and I found out they missed the gallbladder of all things! I had negative blood work for Celiac before, but it turns out those are not always accurate. The one doctor I had up at IU Med was head of Gastroenterology and Hepatology! He should not have missed the gallbladder!

Anyway, after pestering my primary care physician, who refused to send me to a surgeon because my gallbladder HIDA scan and ultrasounds came back with nothing, he eventually gave in. The surgeon said I was a candidate for surgery. So, on July 28, 2003, my little gallbladder was removed, and just in time. Ten days later, at my post-op check-up, I was told by the surgeon my gallbladder was very inflamed and irritated and nearly ruptured!

The lesson here is, always listen to your instincts! It does not matter what everyone else around you is saying! Well, after my gallbladder was removed, I was still feeling really bad. The reflux got so bad, I practically had to sleep sitting straight up, and still suffered with it despite taking two Prilosecs daily. Unbearable nausea swept over me to the point I could hardly ever leave the house. When I did, I would have to take Promethazine first.

After hearing about Candida (a systemic overgrowth of yeast) I began asking around about a naturopathic physician that was familiar with treating it. A woman at my favorite healthfood store recommended a local holistic physician. All my doctor at the time did was give me more pills that would either do nothing, or mess me up worse. So, I switched. Not having insurance is a major issue, but getting addicted to more pills would only increase my financial burden.

I told my new doctor about the problems I have been having, and she mentioned food allergies, Candida, and numerous other issues that could be causing the problems. When I saw the list, I told her how I tested negative in a biopsy and blood work for Celiac. She said she has had some patients who are Celiac and responded well to the diet despite what testing said.

I did an experiment, and went gluten free. Within three days, I was feeling better. That was something! The reflux decreased to where I can skip that second Prilosec some now. I was sick this morning again, but I might have just overdone the fat. After your gallbladder is out, you need to watch it. You do not digest fat anymore.

I also could have been glutened through cross contaimination, as my parents are not gluten free. I also may need to give up dairy. Casein does not set well with many of us, either. It is a protein in dairy. There are many things that we can have that you would be surprised about, though. Here is a beginner's list for you:

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip

Philadelphia Cream Cheese

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)

Snack Foods:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

I hope this helps a bit!

Sincerely,

NoGluGirl

[happygirl]

Megan,

welcome to the board!

Unfortunately, your story is all too common among others with Celiac. I think all of us have been told that we have IBS at some point in time!

Definitely try the diet. It is a steep learning curve, but if gluten is your problem, this will be such a blessing. I was sick for about 10 months and was dx'ed at 23, so I understand.

www.celiacdiseasecenter.columbia.edu is a great information website.

the parent site to this forum, www.celiac.com is full of great information.

Try finding Tinkyada pasta..it is by far the best gluten free pasta. You can find it at some grocery stores, health food stores, and online. for info, go to www.tinkyada.com

For a soy sauce replacement, try San-J wheat free soy sauce, or La Choy soy sauce. (Most regular soy sauces have wheat in them)

The 2006 Food Labeling Law requires that all food products will clearly list any wheat. (Wheat is considered an 8 main allergen). Further, there is a list of companies that will clearly list any source of gluten (wheat, rye, barley, malt, and oats)...you can find it here: Open Original Shared Link Posts 1, 2 and 9 are particularly helpful. So, between those two things, you can feel more comfortable reading labels.

Best of luck---and keep us updated. Let us know how it goes!

Laura

[JNBunnie1]

Hi Meg, I'm 22 and I know exactly how you feel. I got tossed around to a world of different doctors and had a negative endoscopy and everything, but I stayed sick until I went gluten free. It was obvious that was the problem, I was able to stop calling out of work within weeks, but it's very hard to learn what you can have and what you can't. The easiest way to stay wheat-free is to just not eat anything you're not sure about. If it has an ingredient you can't pronounce and you don't know where it comes from, don't eat it. It's probably also best that you avoid eating out in general, unless you're just eating a salad bar in a real restaurant, not a McD's. Restaurant cross-contamination has made me very ill before. Your biggest problem will be repairing your insides, they are very hurt right now. It's a good idea for some people to cut dairy products, but if you've never had problems with it before this current illness then it's unlikely that's a problem for you. Celiac disese is a disease that can be triggered in your body, dairy intolerance is typically not. Plain organic yogurts can be a very healing thing for you right now, and filling as well. I've been studying nutrition since my own illness, and I'll be entering school to become a Registered Dietician hopefully by the fall. The best website to look at for foods that will truly nourish you and repair your body is at the Weston A Price foundation. Please let me know if you'd like me to share any more info with you. (that goes for everyone!)

[megifluflu]

So its been a week and everything is going better then I thought it would go. I was scared that this wouldn't be the answer but it seems to be it. I feel better already. And yes I would love some more info from anyone who has been doing this longer than me!!!

[sfm]

I have been suffering from digestion problems for four years. I hate to be so dramatic, but I have never been so sure about something in my whole life. I heard about celiac disease from that chick on the View and checked it out. My mother has thyroid disease and ulcertive colitis(sp?). I dont really know if thats connected or not but it sounded like it could be.

This whole this is just kinda overwhelming. I have been dealing with this for a while now, and I'm only 23. Im scared that this isn't going to be what is wrong with me. But its the closest I have ever been to believing that I just might have found something. I have tried everything else.... A GI doctor at Vanderbilt told me that I just had IBS and that I'd be fine. I believed him until the meds for IBS made me even sicker than I already was. That was when I still had medical insurance. Now, I couldn't afford the tests it takes to prove that I have this disease.

So, with much thought and disgussion, I decided to go ahead and try not eating gluten for awhile. If anyone has any advice please let me know. I just found out about this two days ago. I believe it to be a godsend. I had feared that I would forever be in pain and now I feel like there's hope.

~Megan

Megan - I found out about my own gluten intolerance by going gluten free. Within a week I felt better than I had in ages - not that I didn't have ups and downs, and it took me some time to understand about cross contamination, and how to read ingredient labels thoroughly.

Eventually I got together the money to have several tests run, including genetic testing. But to me, what they call the "dietary response" was more of an indication that this was the problem than the tests. Eating gluten makes me sick - it's even more noticable now, if I accidentally eat some, because the rest of the time I feel less sick than I have in years.

There are some people on this site who never tested positive for celiac, or for gluten intolerance. But that is secondary to feeling better and healthier, so if you think it might be the answer, then go for it!