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Hi! okay so im new to this forum and well celiac. I have been sick since november and decided i had to tell my family around christmas because well i couldnt eat anything. I finally went to the doctors who took samples of my stool, that turned out negitive then my pee sample turned out negitive. Then came the blood tests. (im needle phobic really bad.) Long story short my levels are really high for celiac. I have an endoscopy on the 26th and am scared beyond belief. I ended up in the ER last weekend because i became dehydrated. (randomly started throwing up- but had no virus) so that was a trip. I am suppose to see a nutricience. But I am a vegatarian and do not like beans, or soy (soy doesnt react well with my body) I am getting so sick, and sicker by the day. I have to eat gluten until the endoscopy. The doctor also said I may be lactose intolerant. So what does that leave me with? lettace without salad dressing? I was so good at hiding me being sick during nov, and mostly december, but i started getting worried. Any advice? coping? Im 20, so ive been eating pasta and pizza my ENTIRE life, and in all honesty i dont think I will be able to live without cheating and eating gluten! [size="2"][font="Comic Sans MS"]
HELPPPPPP MEE PLEASE[color="#0000FF"]

HELLO And Welcome:

OK, so you've been outed - no more hiding

Until you have your endoscopy on the 26, learn as much as you can from this forum.

You will need to eat a balance diet which will include some meats, seafood, rice, potatoes, fresh veggies and fresh fruit. In the beginning you will need to eat simply. Yes, it is often recommended to go dairy light in the beginning and you can reintroduce it later after some healing has happended.

When you shop, you will be looking for wheat, barley, malt, and some oats. Here is a list of companies who will clearly list all forms of gluten:

http://www.glutenfreeindy.com/foodlists/in...donothidegluten

If you want to feel better, the gluten free diet is the only way to get there. You're young and you have lots of living to do. Take this time to learn as much as you can. Check our the Products section of this site.

We have all been where you are and it will get easier as the days go by and we are all here to help.

Once you go gluten free, you can still eat pasta.....just a different kind. Check out Tinkyada (rice-based) pasta. It comes in all the normal shapes and sizes and tastes great. You can find it in many grocery stores, specialty/health food stores, and online.

Good luck. I hope you feel better once you start the diet.

Unfortunately you only have 2 choices. Eat gluten and be sick or not eat gluten and be well.

What you have to realise is that if you are Celiac, not eating gluten is the only option. There is no other cure. If you carry on eating gluten your body will become less and less able to function and you will get sicker and sicker.

The vomiting may indicate that malabsorption of nutrients is already a problem and the longer you continue to eat gluten the more damage will be done - further down the line you will become diabetic, or get multiple sclerosis or some other degenerative disease.

I am not trying to frighten you - just make you understand that avoiding gluten is the only way. It is unfortunate that a biopsy is the only option - at the moment there is not yet any other less invasive way of determining Celiac, but even a negative biopsy does not mean you don't have it.

THIS IS NOT A LIFE SENTENCE! What it does do is make you realise how fragile your body is and how you need to respect it if you want to be healthy. You cannot continue to keep throwing garbage at it and expect it to cope. It is like a car. If you don't look after it, change the oil, keep it maintained, eventually it will break down.

You have to be eating good, nourishing food - there is plenty out there still to eat, just not the easy, 'open a packet and stuff it in' stuff. You can still have pasta and pizza - rice pasta is good (don't overcook it and you wouldn't realise you weren't eating the real thing) and there are gluten-free pizzas available, albeit a bit more expensive, but what price is good health?

There are thousands of people out there who have gone through or are going through what you are right now - you have come to the right place - we are all in this together. There is lots of help and advice you can get and you will, I am sure, eventually be one who will be giving help and advice to others in the future.

Learn to help yourself and your body. Focus on what you CAN eat, not what you CAN'T. You CAN have meat, fish or poultry as long as it is 100% and not processed or adulterated with chemicals and gluten (wheat, barley or rye products, rusk, modified starch etc.), fresh wholesome vegetables and fruit (preferably organic as the last thing you need is more chemicals), starches and grains in the form of potatoes, rice, buckwheat, millet, quinoa and corn if you can tolerate it. You can have gluten-free baked goods - some of which are very nice - it's a bit hit and miss at first until you find products you like. If you fancy experimenting there are plenty of different flours and baking aids out there and lots of good tried and tested recipes.

Try and cut down on the amount of sugar and carbohydrates you consume as they are also bad for you and will only exacerbate your problems, encouraging bacterial overgrowth in the gut and making thing worse. Have them as an occasional treat rather than an everyday food. I have cut out gluten, dairy, most carbs and sugars and am feeling a lot better for it.

Why not ask around amongst friends, relatives and acquaintances to see if there is anyone else out there who is Celiac or gluten intolerant who you could talk to? You might be surprised - every day, people like you and I are discovering they are either Celiac or gluten intolerant. Most are keen to find others who are in the same situation so they might be out there looking for you! It is great when you find friends who share your situation.

You will eventually manage to cope with it all. I know it is daunting at first, but that is the same in any new situation - it does get better - honest! I hope you manage to cope with the Endoscopy ok. I am pretty sure you can ask to be put under if you would prefer and when you wake up it will all be over and you will hopefully then know where you stand. Hopefully, they will put you in touch with a Nutritionist who can help you to get to grips with it all, if not then ask for that help - you should not be left to flounder. Finally, just remember you are not alone, and this forum is always here for help and support.

All the best, Ali.

I was diagnosed at 20. I agree with AliB you have two choices. Eat gluten and be sick or eat gluten free and be well. For me the choice was easy - eat gluten free and be well.

There is plently of good gluten free food to eat. Your social life does not need to change but you will have to do some preparation and planning. Strategies are eat before you go, bring your own food or check to make sure a gluten free option is available to eat. These stategies can be combined.

Also, there will be times when plans will change or not made in advance. I usually keep some non-perishable gluten free food and homemade oil and vineger dressing with me.

It's a big change at first but in time being gluten free will be second nature.

The results of going gluten-free will be worth it, I promise. You will feel infinitely better. Many people on this board were diagnosed at 50+ and have been sick all their lives, 20 is actually pretty young for a diagnosis. I am 16 and was just diagnosed this fall, we are lucky to be able to heal completely and go on to live long, healthy lives.

Also check out the forum vegiac.com for info about gluten-free vegetarianism. Your soy intolerance is likely celiac related, many of us can't tolerate it. I can't eat whole soy products at the moment, like soymilk or soy yogurt or tofu, but a little bit of soy in processed foods is ok for me (but may not be for everyone). But that is NOT the case with gluten- a teeny bit for a celiac is just as bad as a ton! I would reccomend getting a referral to a nutritionist- your situation makes it tricky, though not impossible, to get protein. Try Quinoa, a yummy rice-like gluten-free grain. It has something like 7g per serving, which is around what many soy products have.

Hi FatCat, you have gotten some good advice.

I'm not vegetarian, but there are several people who post here regularly who are (there are even some gluten-free vegans, so it can be done and done in a healthy way). So you don't have to start eating meat/fish etc., although it might give you some more variety.

You might try sending a message to some of the following members who are vegetarian/vegan:

MySuicidalTurtle, Bully4You, hathor, ItchyMeredith

Also, here's a great blog with recipes but also other great hints. Karina the Gluten Free Goddess is also sometimes vegan/vegetarian but she's also fun to read. http://glutenfreegoddess.blogspot.com/

Good luck and I wish you good health!

~Laura

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Hi, I just wanted to let you know that I was finally diagnosed with Celiac last week. I also can not eat Dairy or Soy. I am 30 and like you have been feasting on pizza my entire life. I ended up going to see a nutritionist and she has help me SO much. She has helped me figure out what I can eat. Little bits at a time, then slowly adding other foods. The upset stomache hit me on New Years Day and continued for about 40 days.. needless to say I was dehydrated too. I met her in the middle of this. She cleared up the diahhrea and has started me on supplements, vegetables and applesause. In the week that I have been on this way of eating I have to admit I really feel good. No neasau, fatigue, no achey joints.. Its unreal.. I am really bummed that I can not eat what I used to- Its a HUGE wake up call. But it feels great to know that I will get better and eventually will be pain free.
I wish you all the luck with the endoscopy..honestly I ended up skipping it and going straight to the nutritionist. I knew I could not handle that test-

Good luck with everything-you will be fine! Keep your head up!

Okay- so the endoscopy says i have celiac for sure- AND- Im lactose intolorant- AND- I have a hernia. They said I am actually very sick, and to not eat gluten or dairy ever again pretty much. I want to cry. So i cant even have gluten free pizza! I just want to scream out loud. I think my boyfriend is scared of having food around me as i am not coping so well. Okay its one thing to take italian (true italian- normal italian) food away from a italian girl, but then to take away icecream and dairy?? Ben and Jerry's calls my name all night long at work! : (
Yesterday came too fast, and well had too much information. I can find out my biopsy results when i call in two weeks. Does anyone know exactly what they are testing for in the biopsy??? As the procedure was not explained to me very well.

thanks for everyones advice and help. Yes i am moping. : (



i still do not know how to go about this. no soy, no tofu, no gluten, no dairy. : (

Hi FatCat, I am Italian too and yes it is hard! I used to say that I could eat pizza, pasta or lasagna every day of the week and never get tired of it. Oh, well.

Rice pasta tastes almost as good as regular wheat and if you use good homemade sauce you can't tell - or barely. Also, there is quinoa pasta too that is good with heavier sauces. They also make rice pasta lasagna noodles. And polenta is used in a lot of Italian dishes -- you could try that. If you want ravioli you'll have to make it yourself, but it can be done.

As far as milk, it may be temporary. Happygirl posted this on another thread: "Also, once you heal, you may be able to tolerate dairy products. Its not necessarily a long-term problem.

Lactose intolerance may be a transitional problem until the villi heal." http://www.celiacdiseasecenter.columbia.ed...5-Nutrition.htm

I couldn't have milk or lots of cheese for about 8-9 months and now do ok with a little cheddar, mozzarella, ricotta and so on as long as I take a Lactaid pill. I don't usually drink milk but do cook with it. Ice cream killed me for a while but I can have small amounts with a lactaid pill.

Tonight I had cheeseburgers with home-made hamburger bun (I used a mix and made a small loaf of bread and used the extra to make buns).

I have replaced ice cream with frozen sorbet - Haagen Dazs mango or rasperry!

You will find ways to adapt. The good thing about learning and waiting is that if you try gluten-free pizza or breads now you will remember too well how the real stuff tastes and you won't like it. By the time you re-learn how to cook (or find gluten-free restaurants) you will not compare the new stuff to the old stuff so harshly. (Also, some people react badly to gluten-free breads etc. while they are healing and it might make the healing slower.) So eat a lot of "real" whole foods - plain meat, chicken, fish, veggies, a little rice, potatoes - to start out with.

Regarding the endoscopy/biopsy: If the doc said the endoscopy was "Positive" s/he must have seen flattened villi during the scope exam. They usually take biopsy samples too. The samples will actually show the flattened villi along with other things: Celiac diagnosis is made when "small intestine biopsies (SIBs) revealed celiac-related pathology, ie, intraepithelial infiltration with lymphocytes, crypthyperplasia, and partial, subtotal, or total villous atrophy."

They rate the biopsy Marsh 0, Marsh 1, Marsh 2 and Marsh 3 with Marsh 0 being no atrophy to total atrophy at Marsh 3. I only had the intraepithelial infiltration with lymphocytes. http://www.medscape.com/viewarticle/440971_2

Hang in there! Posting here is the best way to learn how to cope.

~Laura

Being gluten and dairy free is a bit of a bummer - I know, because I am in that place too. I know I have always been lactose intolerant but I kept ignoring it - until my digestion finally collapsed - so in that respect I only have myself to blame!

The reason we can't eat dairy is because the area where the lactose is processed is apparently on the tips of the villi in the gut. Gluten damages the gut so much that the villi eventually become flattened and deformed and cannot process the lactose which also then contributes itself to the damage. This is what they are looking for in the endoscopy.

It looks as though your damage has been bad enough for them to pick it up, which in some ways is actually a good thing as it means that you have been able to get a proper diagnosis of Celiac and can hopefully get the right help and support from the medical/nutrition professions (unlike those that are just gluten intolerant and generally just left to fend for themselves!! Shhh. I didn't say that!)

I keep finding things that I am also intolerant of because my digestion just cannot cope, but hopefully now I am limiting most of my foods to basic, my gut will start to heal and I will eventually be able to cope with more and different things.

I am sure that my body is also full of Candida so I am radically cutting the amount of sugar and carbs to try and starve it out!

Apart from the ongoing problems I had for years (fatigue, weight gain, poor sleep, hypoglycemia, latterly diabetes and IBS) I had a bad, bad stomach for months that was getting worse rather than better (the Diabetic doc transferred me from insulin to Byetta which I think triggered off the extreme GI/Celiac). I am confident I too had a hernia (I now know it seems quite common with GI) - my body was obviously trying to tell me something!

Within a few hours of stopping gluten and dairy the pain went away, within a week the gas and bloating went away and I have had little or no problem since! I am having to change my mind-set and think outside of the box. It is a challenge, but I'm up for it! Anything is better than that terrible pain for hours every time I ate.

We are so programed to eat the 'rubbish' that the thought of not having it fills us with horror! The best thing to be is POSITIVE about the situation. Try to concentrate on what you CAN eat rather than what you can't. There is so much delicious food out there.

Being vegetarian, especially if you don't like beans (soy is not worth bothering with anyway) kind of cuts down your choices somewhat though unfortunately. Not quite sure how you get enough protein - the body needs plenty of protein in order to repair itself and beans are a large part of a true vegetarian choice. Do you eat eggs or fish?

It is surprising what you can do with beans. They are actually very versatile and can be mashed, made into burgers, flours for gluten-free baking - last night I cooked chicken with garbanzos and spinach which sounds revolting but was actually very nice and took me all of 20 minutes. In this day and age of 'convenience' foods, we have forgotten the art of preparing and cooking good wholesome meals with basic ingredients and 'real' protein, vegetables and fruits. This is a rapidly moving world and we just don't always have the time to look after ourselves properly. Junk food is just that - junk. It is not giving the body what it needs and eventually that will catch up with us.

To prepare a good tomato sauce for pasta can take less time than defrosting a pizza, or heating a jar of sauce. Chop and 'sweat' and onion and some garlic in olive oil, open a can of tomatoes, cook for a few minutes, add some chopped basil and season to taste. Lovely, and far less likely to have any rubbish in it than a bought sauce!

I have just discovered the delight of a waffle-maker (still experimenting as I seem to get a reaction from soda and/or tartar in gluten-free baking powder, but made some potato waffles this morning with just soda and they were delicious - and quick). I have yet to experiment with DF ice cream as it is still winter here but that one is on the list. There is quite a selection of commercial ice-creams available now and the list of that and other things is growing the more people realise they have a problem.

It has taken me 51 years to hit the bottom, for you it has happened a lot sooner. If you can manage to get your head around this you will not have to suffer any more and you will be amazed at the fantastic foods you can make and enjoy.

Another Italian here who panicked when I thought pasta was a goner.

Tinkyada pasta is the shiznit! Their lasagna noodles rock. Their noodles are the only ones I've found that can stand up to baking (like stuffed shells, lasagna or baked ziti) or soups (like minestrone or pasta fagioli) without falling apart, just don't overcook them and rinse all the starch off before saucing.

Most g-f bread out there sucks, I just went without for the first few years until I learned to make my own. I use the crusty sorghum bread from Shauna James-Ahern's book Gluten-free Girl. The leftovers make the best breadcrumbs to add to your meatballs or top eggplant cacciatore. The recipe is also on her blog of the same name. She also has the best garlic & lemon roast chicken recipe ever.

As for pizza, whole foods sells their own brand of pre-made crusts in a three pack that could rival any regular pizza crust any day. I use it to make garlic bread, panini sandwiches, and Pappa al Pomodoro (Tomato Bread Soup) or Ribolita (Italian vegetable bread soup) as well as a hundred different awesome versions of pizza (like artichoke and spinach, pesto tomato, alfredo mushroom, zucchini marinara or roasted garlic with eggplant).

Good luck experimenting!

I can once again have dairy but when I was lactose intolerant I made gluten-free pizza with homemade pizza sauce, roasted garlic, carmelized onions (I make a huge batch in the crock pot and freeze in muffin tin, pop out and store in freezer in a zip loc bag) and sheep feta cheese. I didn't miss the dairy cheese at all. I often used goat chevre when I needed a cheese fix.