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fatcat11188

New, Scared And Sick

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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! :o

HELPPPPPP MEE PLEASE :(

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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! :o

HELPPPPPP MEE PLEASE :(

HELLO And Welcome:

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

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.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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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.

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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.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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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.


Phyllis

Gluten Free - 30 years

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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.


Gluten Free since 10/07

Mildly Lactose Intolerant, slight intestinal symptoms after eating milk products, but easily corrected with lactase enzyme

Endometriosis- DX'd 5/07

Gluten Antibodies- "negative"...don't know exact numbers, am highly suspicious...

DXed celiac 12-19-07 via genetics/elimination diet- DQ2 allele

Brother with Celiac, aspergers...his tests were all negative (he didn't have genetics done), including endoscopy, but he definitely is at the least gluten intolerant...highly suspect my mother has it as well- she has hyperthyroid, fibromyalgia, hemochromatosis, and now colon cancer, and she has been weak and exhausted and just generally sick. She's going to get tested.

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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


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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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!

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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. : (

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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


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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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.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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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 Gluten-free 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 tried to explain to the waiter that I could not have anything with flour so he took the flower off the table..."

Live your life each day

greet the tides my friend

we're all nomads; forever on our way

a journey to the end.

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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.

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So since my endoscopy on the 26th... i have not been able to keep up with what is gluten free or not. like twizzilers- who would have thought? Then fake crab (yes I ate sushi tonight) And yes I am feeling the consequences of it. I want to just curl up in a ball and CRY. SCREAM. THROW A FIT. Yes I know that is childish, but I mean come on! This is getting ridiculous to me. What happens if I just in general keep eating gluten? Will I die or just be sick for the rest of my life???

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So since my endoscopy on the 26th... i have not been able to keep up with what is gluten free or not. like twizzilers- who would have thought? Then fake crab (yes I ate sushi tonight) And yes I am feeling the consequences of it. I want to just curl up in a ball and CRY. SCREAM. THROW A FIT. Yes I know that is childish, but I mean come on! This is getting ridiculous to me. What happens if I just in general keep eating gluten? Will I die or just be sick for the rest of my life???

Well, let's just say if you keep eating gluten, these are your prospects:

You'll likely have severe osteoporosis by the time you are 40 (maybe earlier). You are going to die of cancer somewhere in the digestive system (bowel, stomach, liver) at least twenty years earlier than your actual life span would have been. You will probably develop other autoimmune diseases, like thyroid disease and/or diabetes. You are likely going to suffer from some kind of mental illness sooner or later, as gluten affects the brain and eventually causes brain lesions. You might end up with severe neuropathy of the feet, legs, hands, or rheumatoid arthritis, that might leave you in a wheelchair........... I could go on for several pages of what might happen if you keep eating gluten.

You think you are sick now......... it is nothing to how sick you will get probably within a year.

Really, now that you know what is making you sick, is it truly an option not to do the only thing that will actually make you well, which is be 100% gluten and dairy free?

I understand that you feel bad about not being able to eat whatever you want. But knowing how to get better just by avoiding gluten foods, no medicines, no surgery, you are not going to die (if you will stick to the gluten-free diet, that is), look at your diagnosis as a gift to finally get well!

But in order to get the protein and vitamin B12 you need, you have to eat at least eggs and/or fish.

And the reason twizzlers surprised you is, that you didn't read the ingredient list! You absolutely HAVE to read the ingredients before buying any food. And before you eat anything, if you aren't sure of the ingredients, you need to ask what is in the food (in restaurants they will likely bring you an ingredient list or ask the cook).

By the way, most soy sauce has wheat as the very first ingredient. But there ARE gluten-free soy sauces out there.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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But in order to get the protein and vitamin B12 you need, you have to eat at least eggs and/or fish.

I agree with every word Ursa says except the single line above. As I said above, there are many successful celiacs who are vegetarians.

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/

You should supplement with Vitamin B12 and you may need to do some research to make sure you are getting enough/the right kind of nutrients.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Hi :) I just wanted to let you know that this will all seem sooo much less tragic months and years down the road. Its a huge adjustment at first and there is a steep learning curve but in the end its just food and compared to your health its really not that big a deal. I was diagnosed when I was 24 and I had been eating a diet mainly of gluten and dairy until then so I understand how you are feeling. Two years later I don't even flinch when friends and loved ones eat glutenous goodies in my presence and alot of the time I feel like I eat better than most people! My husband loves some of the meals I've invented so much that he asks me to make enough for him too! I've found many great restaurants where I can eat safely (just last week I ate at a cambodian restaurant with a gluten free menu!) and I've even traveled safely like this. I bring my lunch to school (there is absolutely nothing in my cafeteria that I can eat) and all my friends tell me how good my meals look and how they wish they would get motivated to pack their own instead of eating all that overpriced junk. All of my friends and family have been great about making sure that a restaraunt is going to work for me or making sure theres something I can eat at a dinner etc. I've even done thanksgiving at a friends house where I brought my own side dishes and everyone liked my gluten free mac n cheese better than the "real" one.

I know it seems like a death sentence or something but it really ceases to be a big deal once you learn more about it and have experimented some to fit it into your specific tastes and lifestyle. There's tons of great advice here to help you make the adjustment go even smoother. Once you have found some new meals that you really like and have gotten used to reading labels etc it won't feel so overwhelming. And once your body starts to heal up you won't ever want to go back to this point let alone get even sicker which is what will happen if you continue to eat gluten. I've actually learned to be thankful that I know what's wrong with me and that there is such an easy fix to my problem . . . how many people out there have diseases with no cure or have to take hardcore meds with horrible side effects?? Giving up my tortellini addiction seems like small potatoes compared to some other options out there.


Pre-diagnosis misdiagnoses: endometriosis, migraines, psoriatic arthritis, psoriasis

Diagnosed April 2006 with multiple food sensitivities (gluten, yeast, eggs, cow dairy, legumes, some nuts and veggies) and a systemic candida infection -no pre-diagnosis symptoms since!

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:(

Well, let's just say if you keep eating gluten, these are your prospects:

You'll likely have severe osteoporosis by the time you are 40 (maybe earlier). You are going to die of cancer somewhere in the digestive system (bowel, stomach, liver) at least twenty years earlier than your actual life span would have been. You will probably develop other autoimmune diseases, like thyroid disease and/or diabetes. You are likely going to suffer from some kind of mental illness sooner or later, as gluten affects the brain and eventually causes brain lesions. You might end up with severe neuropathy of the feet, legs, hands, or rheumatoid arthritis, that might leave you in a wheelchair........... I could go on for several pages of what might happen if you keep eating gluten.

You think you are sick now......... it is nothing to how sick you will get probably within a year.

Really, now that you know what is making you sick, is it truly an option not to do the only thing that will actually make you well, which is be 100% gluten and dairy free?

I understand that you feel bad about not being able to eat whatever you want. But knowing how to get better just by avoiding gluten foods, no medicines, no surgery, you are not going to die (if you will stick to the gluten-free diet, that is), look at your diagnosis as a gift to finally get well!

But in order to get the protein and vitamin B12 you need, you have to eat at least eggs and/or fish.

And the reason twizzlers surprised you is, that you didn't read the ingredient list! You absolutely HAVE to read the ingredients before buying any food. And before you eat anything, if you aren't sure of the ingredients, you need to ask what is in the food (in restaurants they will likely bring you an ingredient list or ask the cook).

By the way, most soy sauce has wheat as the very first ingredient. But there ARE gluten-free soy sauces out there.

Are you being really harsh?? What are the probabilites of these things. I am just curious as some things on celiac is not known.

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I am almost 40 now and was not diagnosed until about three years ago. I have had symptoms almost all of my life and now have severe bone loss/osteoporosis, painful crippling rheumatoid arthritis, a plethora of GI complications, my immune system is shot, I just found out I may have ocular rosacea and the list goes on and on. This all comes from the years of eating gluten, I had so many more problems before going Gluten-free.

If there is a question, just do it! Nothing is worth the suffering that I go through every day. I had at least two grandparents die from celiac complications. That is not pretty.

BTW, here's a great forum where you can talk with other veggie celiacs.....

http://www.vegiac.com/forums/index.php

Good Luck! and hang in there!


"...I tried to explain to the waiter that I could not have anything with flour so he took the flower off the table..."

Live your life each day

greet the tides my friend

we're all nomads; forever on our way

a journey to the end.

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Im just getting so mad. I live with my b-f who doesnt fully understand, so i feel like im just cranky all the time with him. (I certainly feel bad later on about it) but my parents are no help (they try) but they dont know what has gluten and dairy in it (neither do i apprently) I thought sushi in general was safe. wrong. Yes i didnt check the ingredients in the twizzilers before buying them or even eating them. im new to this and my doctor hasnt been the best support. it all happened too fast and with no explaining. he just said no dairy/no gluten. i dont know anyone else with this and i feel like ive become a complete bother to my family and my boyfriend as well as a grump. i feel like i cant get ahead, i havent felt better( i understand it takes time) but until i feel better i dont think this is going to work (i understand that i need to be gluten-free and df- but it doesnt register)

Thank you for the advice- everyone, and i know that im being stubborn and attacking, (not trying to be- not my intention) i just dont know anymore.

I am taking 6 college classes and working over 40 hours aweek. not only will veggies and fruit go bad but well who has time to eat healthy with this schedule? (yes i know- I chose it) But reality is - i need to work that much in order to get an education (which is important to me)

im just mad and frustrated. :angry:

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Fatcat11188:

IF you believe you can do it, you CAN do it!!! Support from friends and family is nice but not necessary. It is an adjustment, but YOU WILL feel better if you stick to it!! I have been wheat, corn,soy, sugar, dairy free for about a month or so, and it is a big adjustment but I feel soo much better, and that alone makes it so worth it!

This forum has been a huge help for me. The more you read and learn, the easier it is. But it is a commitment. You need to commit to this as a way of life or you will suffer. Please try: your health depends on it!!

It does get easier, and I am finding food tastes soo much better now. Good Luck.

AMY

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Since you're in college there are lots of gluten free instant rice noodles. The Thai ones are good, just add hot water. I like to add some peanut butter to them to, to make them creamier. There, dorm food and its vegetarian. Taste of Thai, says gluten free on the box. :) Once you start looking there is lots of easy quick to prepare stuff, canned soups...I started with a short list of what I knew for sure I could eat, a couple of cases of Ensure (gluten and lactose free) and slowly worked up. Maybe some other protein drink might suit you better, there are lots of gluten free ones...?


I don't eat gluten and neither do my cats

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:(

Are you being really harsh?? What are the probabilites of these things. I am just curious as some things on celiac is not known.

Unfortunately she is not being harsh she is dead on right. Im a 35 year old who has glaucoma, menieres disease, raynauds, epilepsy and neural damage because of undiagnosed celiac and I lost my gallbladder because of it. I was very healthy 10 years ago with none of these issues. Im lucky I dont have cancer yet since I have had cousins younger than me have had it and died from it.

You can do this, its hard at first, you are going to be angry because it disrupts your life so much. All of us have been there before.

Quick gluten free foods-

Delimex Corn Taquitos, they are chicken or beef make sure you get the corn ones and read the ingredients- you mentioned you are a vegetarian but I noticed you eat fish so Im not sure if you eat chicken or not.

lara bars

fruitabus

lays stax chips

Tostitos chips ( read the label as some contain wheat but it will be clearly marked) and salsa

kraft cheese (if you eat dairy)

Gluten free breakfast bars

Tinkyada pasta and classico or ragu spaghetti sauce

Big bag of frozen fruit and you can thaw it as needed, frozen veggies and canned veggies too.

Personal items that are gluten free-

Suave Shampoo and Conditioner

Softsoap

Bounty Paper towels

Kiss my face olive oil lotion

Check your makeup too! Especially lipstick since you basically eat it when you eat food or drink.

Restaurants that have a gluten free menu off the top of my head are-

Outback

cheeseburger in paradise

carraba's

pf changs

Regarding B12 you do not need to eat eggs or fish- Im a vegan and take supplements.

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I can tell from your posts that you know in your heart that you need to change your diet, but you are looking for a loophole because you aren't sure you can do it. YOU CAN DO THIS, and your life will be better for it. That said, it is an enormous pain in the *** at first. I went gluten-free 5 months ago. I thought for sure that by now, I'd have it down pat. LOL. It has been a struggle, but I'm learning a lot, and I've had more good days than bad. Even though I've had a really bad week, I wouldn't dream of giving up. On my good days, I feel SOOO much better than I used to feel--I will never go back.

I miss convenience foods. This has been the hardest habit to break. With three active kids, I often felt like I didn't have time to cook. Here are some foods I have been relying on lately: Rice. Buy a cheap rice cooker. I use it all the time. I often eat warm brown rice with honey and milk for breakfast (you could use almond milk if you can tolerate nuts.) For quick dinners, stock up on frozen mixed vegetables. There are many sauces you can use to break the monotony. Taste of Thai has red and green curry paste, pad thai sauce, and I think a Thai peanut sauce (gluten free right on the label). I don't know if the last two contain soy sauce--check the label. I think there is a pesto available that is gluten-free also. You could search the product forum of this site to find one. If you can tolerate a little soy sauce, contact me, and I'll send you some quick Asian-style sauce recipes. Wolfgang Puck's ORGANIC broths are gluten free, and actually taste really good. You can add a little rice to a cup and call it soup. Hash is another quick option for dinner. Fry up some hashbrowns, onions, and whatever veggies you have on hand.

Resist the urge to grab a quick bite at a restaurant, at least for a while. The chance of being served something that will make you ill is always there, AND looking at a menu full of things you can't eat just makes me throw a pity party anyway.

There is so much support and good advice on this forum--it is a great resource when you get overwhelmed or when you can't figure out what made you sick. I can blame my last bad week on my beer-drinking husband who (as I just found out on this forum) really should be brushing his teeth and using mouthwash before kissing me.

One last thing, there is are gluten-free foodlists available to purchase in book form or downloads. They list foods commonly found at U.S. supermarkets that are gluten-free. Much of this information can be found online or by calling the manufacturer, but you may get to the point that you would pay someone just to have a list of safe foods. There is one book listed on the celiac.com website. Also, you can find one from the clanthompson website. I cannot recommend any of these, because I haven't purchased one yet. I am seriously considering it, though.

Hang in there!

-D

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I'm sure someone said this already, but they make gluten free pasta. I got some from Dominicks. Its actually pretty good. Especially if you add chicken breast and stuff like that. And I heard that Whole Foods sells gluten-free pizzas. Never tried it, but I bet its not as good as the regular stuff. I have the same problem too though. I'm barely 18, and I just ate junk food my whole entire life. And I was always really skinny and trying to gain weight. But now it's damn near impossible. And I hate salad too, even if it has dressing. No one can ever force me to eat it, even though I know I probably should.

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