New Here -diet Question

[SusanRachel]

I might be about to be diagnosed with Celiac disease. My doctor ordered the tests because I had iron deficiency anemia. My Gliadin IgG and IgA are high, TTG IgG is normal. I have a few very minor GI symptoms - mild lactose intolerance and more frequent than average stools, but nothing that bothers me. Reading about the diet, I can't imagine being on that for the rest of my life. How many of y'all choose to just monitor your calcium/iron, etc and skip the diet? Yes, I know I'd have increased risk of lymphoma, but a 1% risk of lymphoma is better than a 100% risk of being miserable.

Thoughts?

SusanRachel

[frenchiemama]

I don't think that you'll find anyone here who doesn't follow the diet.

[debbiewil]

I don't find the diet difficult, except when eating out. And that's managable with care.

It's not just the possible increase in cancer - gluten intolerance and celiac have been linked to many other diseases and illnesses - increased chance of autoimmune diseases, such as asthma, rheumatoid arthritis, type 1 diabetes, thyroid disease, addison's disease - neurological diseases such as ataxia - vitamin deficiency diseases and problems such as anemia, osteopenia, osteaoarthritis - mental health disorders - it's been linked to schizophrenia, bi-polar, etc.

And this is just a partial list. The diet is much easier than dealing with all the pain and other assorted health issues of all the associated diseases.

Debbie

[floridanative]

I urge you to follow the diet if you get Celiac dx. I too had anemia and only my tTg level was high. But right before my biopsy (which comfirmed Celiac) I started having dizzy spells and I fell down my own stairs twice in a week. That alone scared me enough to do the diet, even though I, unlike most others you'll find here, don't have most of the common GI symptoms. Gluten can cause damage in more ways than one.

[VydorScope]

I might be about to be diagnosed with Celiac disease. My doctor ordered the tests because I had iron deficiency anemia. My Gliadin IgG and IgA are high, TTG IgG is normal. I have a few very minor GI symptoms - mild lactose intolerance and more frequent than average stools, but nothing that bothers me. Reading about the diet, I can't imagine being on that for the rest of my life. How many of y'all choose to just monitor your calcium/iron, etc and skip the diet? Yes, I know I'd have increased risk of lymphoma, but a 1% risk of lymphoma is better than a 100% risk of being miserable.

Thoughts?

SusanRachel

Susan,

PLEASE follow the diet. Its not that hard once you get used to it. THere is A LOT more at risk then just lymphoma. Read around this site, celiac disease is link to causing Autism, Diabetaes, and many many other issues.

What happens is your small intestines come under attack, and over time become UNABLE to process nutrients, reguardless of any suplementation. More then just Calcium and Iron, much more. Over time you will strave your body of vital nutrition and that only has a bad outcome.

PLEASE read up on this, celiac disease is VERY serious.

[jerseyangel]

If you get a diagnosis of Celiac, you really should be 100% gluten-free for the rest of your life. I wish I had the knowledge to do so years ago--I may not have all the damage and other Celiac-related issues that I do now.

[VegasCeliacBuckeye]

celiac disease Fact Sheet & atypical symptoms

Celiac Disease(celiac disease) Fact Sheet/Overview

Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and other foods containing wheat, barley or rye, and some oats. When a person with celiac disease eats foods containing gluten, an immune reaction occurs in the small intestine, resulting in damage/destruction to the surface of the small intestine (villi) and an inability to absorb certain nutrients from food into the bloodstream. Some speculate that celiac disease has been around since humankind switched from a foraging diet of meat and nuts to a cultivated diet including grains such as wheat. There is no typical celiac. Individuals range from having no symptoms to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and malabsorption.

The impaired absorption of nutrients is referred to as malabsorption which leads to nutrient deficiencies, referred to as malnutrition. Eventually, decreased absorption of nutrients (malabsorption) can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment, which can lead to other illnesses. Symptoms of malnutrition and vitamin or mineral deficiencies include:

Weight loss/fluid retention: Occurs from a malabsorption of carbohydrates, proteins and fat. May not always occur because patients with celiac disease often have enormous appetites that compensate for the reduced absorption of nutrients. Weight loss can be masked by fluid retention which occurs in advanced malnutrition due to reduced absorption of protein. When blood protein levels fall as in celiac disease, fluid leaks out of the vessels and into the bodys tissues (edema). Anemia: Lack of absorption of vitamin B12 and iron can lead to deadly anemia.

Osteoporosis: Lack of absorption of vitamin D and calcium can lead to osteoporosis and bone fractures.

Easy bruising: Lack of absorption of vitamin K can lead to diminished ability of blood to clot and hence to easy bruising or excessive bleeding.

Peripheral neuropathy (nerve damage): Vitamin deficiencies of B12 and thiamine may contribute to nerve damage with symptoms of poor balance, muscle weakness, and numbness/tingling in the arms and legs.

Infertility: Untreated celiac disease can lead to infertility in women, lack of menstruation, spontaneous abortions and low birth weight infants.

Muscle weakness: Lack of absorption and low levels of potassium and magnesium can lead to severe muscle weakness, muscle cramps, and numbness or tingling sensations in the arms and legs.

The following ingredients cannot be consumed by a celiac disease patient Barley, Triticale, Rye, Malt, malt flavoring, or malt vinegar (made from barley) Wheat (durum, graham, semolina, kamut, spelt)

Additional components frequently overlooked that often contain gluten:

Breading, Coating mixes, Panko Broth, Soup bases Brown rice syrup

Flour or cereal products Imitation bacon Imitation seafood

Marinades Pastas/Breads Candy (Licorice, some Chocolates)

Processed luncheon meats Sauces, Gravies Self-basting poultry

Soy sauce or soy sauce solids Stuffing, Dressing Thickeners (Roux)

Communion wafers Herbal supplements Play-DOH:

Croutons

Medications Nutritional Supplements/Vitamins

Diseases/Disorders Definitely Associated with celiac disease : Abdominal Distention -Abdominal Pain, -Steatorrhea Anemia-Folate Deficiency-Iron Deficiency -Pernicious Arthralgia/Arthropathy-Arthritis Rheumatoid-Oropharynx/Esophagus/Small Bowel Carcinoma-Collagenous Sprue-Dermatitis Herpetiformis-Diabetes Type 1-Diarrhea-Down Syndrome-Enteropathy-Associated T-cell Lymphoma-Failure to Thrive- Hypertransaminasemia-Irritable Bowel Syndrome-IgA Deficiency/Nephropathy-Kidney/ Liver Disease-Low Bone Mas- Microscopic/Collagenous Colitis-Nerve Disease-Osteomalacia/Osteoporosis-Recurrent Aphthous Stomatitis-Refractory Sprue-Sjogrens Syndrome-Thyroid Disease (Autoimmune)-Ulcerative Jejunoileitis

Diseases/Disorders Most Likely Associated with celiac disease: Addison's Disease-Alopecia-Anxiety/Depression-Ataxia-ADD/ADHD-Autism-Autoimmune Hepatitis-Chronic Active Hepatitis-Bird Fancieris-Lung/Brain White Matter Lesions-Cerebellar Atrophy- Chronic Fatigue Syndrome- Crohn's Disease-Congenital Heart Disease-Cystic Fibrosis-Dental Enamel Hypoplasia-Dyspepsia Epilepsy- Farmeris Lung-Fibromyalgia-Fibrosing Alveolitis-Follicular Keratosis-Gall Bladder Disease-Gastroparesis-Migraines Irritable/Inflammatory Bowel Disease-Impotency/Infertility-Lung Cavities-Multiple Sclerosis-Myasthenia Gravis-Pancreatic Disorders/Insufficiency-Peripheral Neuropathy-Polymyositis Polyneuropathy-Primary Biliary Cirrhosis-Pulmonary Hemosiderosis-Recurrent Pericarditis-Sarcoidosis-Schizophrenia/Mental Problems-Scleroderma-Short Stature, Delayed Puberty Small-Intestinal Adenocarcinomas Spontaneous Abortion and Fetal Growth Retardation Systemic Lupus Erythematosus Thrombocytosis (Hyposplenism) Thrombocytopenic Purpura (ITP) Thyrotoxicosis Vasculitis Vitamin K Deficiency

[IronedOut]

celiac disease Fact Sheet & atypical symptoms

Celiac Disease(celiac disease) Fact Sheet/Overview

Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and other foods containing wheat, barley or rye, and some oats. When a person with celiac disease eats foods containing gluten, an immune reaction occurs in the small intestine, resulting in damage/destruction to the surface of the small intestine (villi) and an inability to absorb certain nutrients from food into the bloodstream. Some speculate that celiac disease has been around since humankind switched from a foraging diet of meat and nuts to a cultivated diet including grains such as wheat. There is no typical celiac. Individuals range from having no symptoms to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and malabsorption.

Excellent fact sheet. And more than enough evidence to go with the good life.

Do you know if there is some documentation out there that states in plain english the fact that whether you are asymptomatic or not, any (and all) gluten is damaging? I need some help dispelling the notion that a little won't hurt.

[lonewolf]

I might be about to be diagnosed with Celiac disease. My doctor ordered the tests because I had iron deficiency anemia. My Gliadin IgG and IgA are high, TTG IgG is normal. I have a few very minor GI symptoms - mild lactose intolerance and more frequent than average stools, but nothing that bothers me. Reading about the diet, I can't imagine being on that for the rest of my life. How many of y'all choose to just monitor your calcium/iron, etc and skip the diet? Yes, I know I'd have increased risk of lymphoma, but a 1% risk of lymphoma is better than a 100% risk of being miserable.

Thoughts?

SusanRachel

You won't be "miserable" on the diet unless you choose to be. I'm glad you're not horribly sick or in terrible pain now. It's better to prevent some of the problems that many of us have endured by following the diet now, rather than trying to get better after you've had a complete breakdown of your health. If you don't have Celiac, then you might be fine, but if you do have it and don't eliminate gluten it's just a matter of time until you'll have more health problems than you would ever want to deal with.

[tarnalberry]

I might be about to be diagnosed with Celiac disease. My doctor ordered the tests because I had iron deficiency anemia. My Gliadin IgG and IgA are high, TTG IgG is normal. I have a few very minor GI symptoms - mild lactose intolerance and more frequent than average stools, but nothing that bothers me. Reading about the diet, I can't imagine being on that for the rest of my life. How many of y'all choose to just monitor your calcium/iron, etc and skip the diet? Yes, I know I'd have increased risk of lymphoma, but a 1% risk of lymphoma is better than a 100% risk of being miserable.

Thoughts?

SusanRachel

The consequences of malnutrition extend beyond calcium and iron, and you can't make up for it in vitamins because the damage to your intestines prevents you from absorbing the vitamins as well as the food. On top of that, putting your body in a chronic state of inflammation/immune response increases your chance of many types of cancer, not just lymphoma. It also increases your chance of developing other autoimmune diseases (like t1 diabetes - and that's stricter, diet wise, than celiac disease). It may also affect other portions of your body - including your nervous system and your brain.

To top it off, there is no 100% chance of being miserable on the diet. There are *OODLES* of gluten-free things to eat. I eat chili, stews, soups, stir-fries, salads, curries, eggs, fruit, sushi, and vegetables all the time, and make pancakes, cookies, and muffins on special occasions. (I'd have pasta often too if my husband ate it, but he doesn't.) And I'm dairy free as well, and don't buy much in the way of prepackaged food. All my friends who come eat my food tell me it's great, and I can still eat out if I'm careful. The diet makes you only as miserable as you let it.

[SusanRachel]

I appreciate everyone's input. Seems that I'm alone in my thinking. I just can't imagine a life without pasta, pizza, muffins, stuffed mushrooms, bagels, chocolate, bread, stuffing, spinach balls, blueberry pudding, cookies, and everything else I love and to and instead be relegated to eating bunny food and rice for the rest of my life. It's too overwhelming of a concept to cope with. Not to mention, how to you manage when you have to eat in a cafeteria environment every day? Before anyone asks, no, I can't bring my own food.

Why me?

[VydorScope]

I appreciate everyone's input. Seems that I'm alone in my thinking. I just can't imagine a life without pasta, pizza, muffins, stuffed mushrooms, bagels, chocolate, bread, stuffing, spinach balls, blueberry pudding, cookies, and everything else I love and to and instead be relegated to eating bunny food and rice for the rest of my life. It's too overwhelming of a concept to cope with. Not to mention, how to you manage when you have to eat in a cafeteria environment every day? Before anyone asks, no, I can't bring my own food.

Why me?

Bunny food? Rice?

Hmm now many bunnys eat deep freid and breaded hotdogs? Thats what I made last nigth, gluten free, and egg free. Or how many bunnies eat chololate brownies? What about cake? What about all p meats (with out addtives)? what about all fruits? what about cerals? cakes? Bread? All of that I have had Gluten Free.

I think the problem here is on your FOCUS. You focusing onthe stuff your missing, instead fo the very large varity of things you can eat.

In the end its up to you, its your body, but celiac disease Is very serios, and you need to be 100% gluten-free. Read Broncobux post, agian if need be so you can get an idea of how serious this realy is.

[jerseyangel]

I find that it's not difficult at all to make most any food that I ate before gluten-free. I just substitute any gluten ingredients with safe ones. There are many alternative flours, potato and corn starches to thicken, crumbled gluten-free bread for bread crumbs, brands to get familiar with that will list any gluten on the label, gluten-free baking mixes, the list goes on. I would dare to say that looking over your list of things you fear you would have to give up--there is a gluten-free sub. or recipe for all of them. It takes some creativity,and a slight change in shopping habits. The decision, of course, is yours. There are so many ideas here for recipes, tips on eating out, shopping. We are glad to help you with this--and it's not bad at all. I eat quite well, and the whole gluten-free lifestyle is second nature to me now. As far as your cafeteria--could you speak to the person in charge and explain your dietary needs? Maybe they can steer you to any foods that are safe for you.

[SusanRachel]

Bunny food? Rice?

Hmm now many bunnys eat deep freid and breaded hotdogs? Thats what I made last nigth, gluten free, and egg free. Or how many bunnies eat chololate brownies? What about cake? What about all p meats (with out addtives)? what about all fruits? what about cerals? cakes? Bread? All of that I have had Gluten Free.

I think the problem here is on your FOCUS. You focusing onthe stuff your missing, instead fo the very large varity of things you can eat.

In the end its up to you, its your body, but celiac disease Is very serios, and you need to be 100% gluten-free. Read Broncobux post, agian if need be so you can get an idea of how serious this realy is.

Nice that there are things like that that you can cook, but how do your brownies hold together without flour? And what can you possibly bread something with without bread? Sorry if I sound disbelieving, but this is just blowing my mind. Ultimately, I don't have time to cook every night, or even most nights, so I rely on stuff that's ready to go, so I'm thinking if I do the diet, I'll be living on baby carrots.

[VydorScope]

Nice that there are things like that that you can cook, but how do your brownies hold together without flour? And what can you possibly bread something with without bread? Sorry if I sound disbelieving, but this is just blowing my mind. Ultimately, I don't have time to cook every night, or even most nights, so I rely on stuff that's ready to go, so I'm thinking if I do the diet, I'll be living on baby carrots.

Wheat is not the only grain.

Xanthum Gum is used alot to get things to stick. Check out a Whole Foods, or Wild Oats, or even the health food section of your groicery, you will find pre-made cookies, bread, cakes, pizza, etc. They are not hte cheapest that way, but if you dont want to cook that will work. There are allso ready made mixes for the stuff. Online order is often cheaper, in BULK.

[happygirl]

There are many gluten-free flour mixes-both pre-packaged and ones you can make yourself. There are also brownie mixes, pastas, etc. I think you will find if you came to our house for dinner, we have very 'normal' dinners.

[WGibs]

Others are giving good advice, but since you mentioned chocolate, I just wanted to be sure to point out that chocolate is often (usually?) gluten-free. I eat chocolate everyday. The only things that are routinely non-gluten-free are things with wafers, cookie bits, or crispies in them. But you can have M&Ms (not the crispy kind), snickers, reese's cups, dove promises, and much more. So, don't worry about the chocolate.

By the way, I am not a big cooker either...on weeknights, I often eat brown rice pasta, baked potatoes, sushi )with wheat-free soy sauce), Thai Kitchen pad thai, salads, or canned soup (many gluten-free varieties out there, even mainstream).

And really, if you want it, someone has made a gluten-free version -- even donuts and oreos.

[SusanRachel]

And really, if you want it, someone has made a gluten-free version -- even donuts and oreos.

They may have made it, but how did it taste? I'm guessing if I do the diet thing that I'm going to lose a ton of weight because if I don't like the taste of something, I won't eat it even if I worked for hours to make it. Then I'll just get frustrated and not eat at all. I still don't have a good answer on how to handle the cafeteria. I can't talk with the manager about what I can eat because if word gets out, I may well lose my job. And don't ask why. I can't explain. ADA doesn't apply.

[VydorScope]

They may have made it, but how did it taste? I'm guessing if I do the diet thing that I'm going to lose a ton of weight because if I don't like the taste of something, I won't eat it even if I worked for hours to make it. Then I'll just get frustrated and not eat at all. I still don't have a good answer on how to handle the cafeteria. I can't talk with the manager about what I can eat because if word gets out, I may well lose my job. And don't ask why. I can't explain. ADA doesn't apply.

Whats advalibe to eat in your cafiteria?

If you continue to focus on the negative, no one is going to be able to help you. If you assume failure before you start, you are garrenteed to fail. This will take some experimentation, and you will not like some things and like others. YOu might try 10 dif gluten-free breads before you find the one you like, but if you give up before you even try, you will never find it.

Its only hard in the begining, it gets easier as you go....

[happygirl]

There are a variety of people on this board, diagnosed with Celiac, gluten intolerance, or have given up gluten for various reasons.

From babies and elementary age children, to teens and college students, to young professionals, to moms and dads, to older adults.

Many have other food intolerances/allergies or other health problems.

People on here have a range of food tastes, cooking abilities (or lack thereof), work situations, family situations, financial interests.

Various ethnicities, religious backgrounds.

Celiac can be a daunting disease to take on. However, there are a LOT of people, with diverse backgrounds, on here who have found a way to make it work for them. I guarantee that if you sought out this board, you can DEFINITELY find a way to make this diet work for you.

That is not to say that you won't try bad products, or get frustrated bc something didn't taste like you hoped. I don't know one person who hasn't thrown a batch of "something" out. But, we move on, find something else, and we all have our "standbys." Things that some people swear by, other people hate. You find what works for you.

I still crave things, I won't lie. But, I am still the same person, regardless of what I do or don't eat.

Keep giving us information-the more heads thinking on this, the better.

I am curious though-every single person eats lunch at the cafeteria? No one brings their lunch or runs out to pick something up? Or goes out for lunch?

[ehrin]

SusanRachel -

I think you are simply looking for an answer that you are not going to find here.

This is a board full of proactive people looking to prolong their health by maintaining a gluten-free lifestyle.

The diet is the only way to keep yourself healthy and to PROLONG your life. Like Vydorscope said, if you think you'll fail before you start then you will. Why don't you try the diet for a month and then make a decision? I truly believe that we are dealt the hand we are given because that is what we are able to handle. I wont lie to you and say it's a walk in the park - but the more you learn and the more research you do, the more familiar you'll become and eventually it'll be second nature.

I'm a T1 diabetic, have been since I was 3 - can you imagine if I decided not to take my insulin every day? It would be the same result as not following the diet.

As for handling foods in your cafeteria - are you able to discretly ask the chef what ingredients are in certain dishes? Are you able to special order dishes? I bet you'll find that once you start asking questions the chef will be familiar with gluten and may suggest dishes for you - there are many food alergies out there. I bet the odds are high that there is someone else in your work place with a food alergy, perhaps not gluten, but lactose and many others, that your cafeteria has to cater to.

I wish you the best.

Ehrin

[lonewolf]

They may have made it, but how did it taste?

I'll respond to this point, since you were asking about donuts and oreo's. The gluten-free oreo "imitations" are fantastic. Never tried the donuts.

If you want to feel better and avoid major health problems in the future, you need to be an advocate for yourself. No one else can give you good health, it's all in your hands at this point. Life is all about choices and you have to choose which is important to you - familiar food or good health. Everyone here has chosen the path to good health, although not everyone is there yet. You are the only one who can take care of you, and if you do have Celiac Disease or gluten intolerance no medication or state of denial will help you.

[SusanRachel]

That is not to say that you won't try bad products, or get frustrated bc something didn't taste like you hoped. I don't know one person who hasn't thrown a batch of "something" out. But, we move on, find something else, and we all have our "standbys." Things that some people swear by, other people hate. You find what works for you.

I still crave things, I won't lie. But, I am still the same person, regardless of what I do or don't eat.

I am curious though-every single person eats lunch at the cafeteria? No one brings their lunch or runs out to pick something up? Or goes out for lunch?

That sounds more honest. Ok, maybe there will be some trial and error involved and not everything is easy and perfect like the initial posts sounded. I guess I just don't have any grasp on how to begin. I know that 90% of what I eat has gluten in some form. Can I still have diet coke/diet pepsi? I wish I knew someone on the diet who could coach me some.

The cafeteria. Yes, everyone eats there 1-3 times per day every day. There is no where else to go to get food. I really can't explain it more without risking my job.

[happygirl]

Oh, girl, we have all eaten some CRAPPY foods! My husband still laughs over some of my creations. But, we have found some brands that we like:

Tinkyada gluten-free pastas. Many health food stores and some higher-end grocery stores carry them. Also, you can order online. I use it like regular pasta-make pasta salads, spaghetti, mac and cheese, etc. I serve it to others, also! (I didn't like most other pastas-didn't like the texture/taste)

Many people like the Kinninnick (sp?) brand breads and other products.

I use Bob's Red Mill gluten-free flour as a substitute in a lot of things (I use it to make homemade Thanksgiving gravy....tastes almost identical to my mom's!)

There is an organic brand, Amy's, that carries some gluten free frozen foods. Not all her products are, but the ones that are, are clearly listed. Those save me on a weekly basis.

Progresso Rich and Hearty New England Clam Chowder is gluten-free (although the "traditional' one is not, I believe)

There ARE going to be ups and downs....and eventually it kinda evens out. You could come to my house and seriously, not know that you are eating gluten free food.

Once you get the basics down (that is the hardest), and grasp the seriousness of this disease, then you can continue on learning little bits and tricks that help you to maintain your gluten-free diet and improve your food. The beginning is definitely the hardest-there is a lot to learn. You will be a pro before you know it.

Luckily, many of us have learned it and would be happy to share!

[floridanative]

Let me start by saying that I too was horrified to think about going on the gluten free diet. That was back in Sept. when my GI first mentioned it to me. When I finally got the formal diagnosis last week, I cried and then I started my new gluten free life that night at dinner. We eat healthy anyway (not tons of packaged stuff) so I may have it easier than some. But for instance even many several candy bars are safe - go figure! You can have Snickers, M&M's....lots of junk in other words if you so choose. Don't get me wrong, I'm far from being sure that I'm 100% gluten free in only a week, but I've already examined all household products, make-up and of course food. Honestly the biggest thing I had to get rid of was all the Campbell's canned soups and my pasta. But I got some Tinkyada rice pasta that you won't believe the taste of. Unless you eat it plain, you will not be able to tell a difference from the wheat pasta. So far we've had turkey spagetti and elbow pasta with gluten free marinara & mushroom sauce. But best of all for me so far was that Sunday we made Pamela's gluten-free pancakes. They were the best pancakes I'v had in a while. We have been making whole wheat pancakes for a long time. Well the Pamela's mix tastes sort of like a combination of white and wheat mixes. It is not quite as good as reg. pancakes but I prefer them to the whole wheat ones I've been eating. Oh and I also went to the movies and had a big bag of AMC theater popcorn and a coke - both are gluten free.

About your job, I'm not sure if I missed something but I assume you can take your own lunch and eat in the cafeteria right? There even gluten free energy bars and all natural fruits and veggies are gluten free. As are nuts, most cheeses...the list goes on and on. Living gluten free is not a death sentence. You can eat lots of great foods and enjoy them too and eventually your new way of eating will become second nature. At least that's what I'm hoping for you and me both. Good luck to you. If I can do this, anyone can.