So Frustrated!

[Mandy F.]

I went out to eat with my family over the weekend and again tonight with my sister. I’ve been trying to follow the diet really well and ask a bunch of questions whenever I go out. My sister was teasing me about it and said that it was silly for me to even bother because it’s not that big of a deal anyway. I was generally annoyed that she was teasing me in the first place, but she makes a lot of sense!

I am one of the lucky people who does not suffer with the “classic” celiac symptoms. Hell! I would never know if my food was cross-contaminated at a restaurant! I could probably eat a loaf of wheat bread and never notice anything. If I had canceled my doctor’s appointment and just chalked my one week of D up to a stomach virus, I would have never even known that I had Celiac Disease. So, why should I deal with all of this? I make an effort, but not a fantastic one. I’ve been buying gluten-free foods and more fruits and veggies but most of the time, they rot in my fridge before I ever have a chance/time to cook it! I waste so much money on groceries simply because I’m never home to eat them. I buy gluten-free products to eat at work, but Thai noodle bowls don’t agree with my stomach and I am so tired of these organic soups that all taste the same to me and include Leeks in them. I don’t like Leeks!

When I was diagnosed, I thought “Great, maybe this explains why I’ve always been sick with something every other month.” But I lived 23 years being sick with something every other month and I’ve gotten used to it. I deal with it and move on. I’m so annoyed by this diet that I think I would be happier being sick with allergies and random sinus infections and colds than to have to deal with gluten everyday! Ugh!!!

[Suzanne M.]

Hi Mandy,

I know exactly how you feel! I was diagnosed as a baby and followed a gluten-free diet - mostly enforced by my parents until I left home at 17/18 and thought to hell with this. I too didn´t suffer enormously if I cheated and thought that even non celiacs felt like that at times so what was the big deal?

I have eaten exactly what I wanted for the past 20 odd years - to the extent that I blocked out the fact that I was celiac at all and accepted diagnosis of viral infections, IBS etc for repeated illnesses, anemia and aches and pains.( I have moved around quite a bit and my doctors file didn´t follow me- basically I was expecting GPs to help me and only giving them half of the info they neede to do so).

Anyway after happening upon this forum & the experiences I´ve read about the complications suffered by people who were diagnosed later in life - I´m scared. I put all my symptoms down to 24 hour bugs, stress, environmental factors - anything other than celiac. I´ve been making myself ill for years and I only hope I haven´t triggered any of the diseases that can result from untreated celiac disease.

I know it´s a major pain in the a** especially since gluten products seem to be addictive to lots of us. I live in Mallorca now and there are so many different types of bread that you could eat a different one every day for about a fortnight - heaven. BUT, I´ve been gluten-free for a week now so we won´t go there. Oh yeah - my symptoms have improved even in that short time, it´s fab.

Anyway, hope the story of my stupidity helps you a little.

Take care.

Mandy,

I have also had years of sinus infections and being sick all the time. I am doing much better off gluten. I also found an item at the health food store that boosts your own immune system and it worked last time I was sick. It is called soverign silver. It made white spots on my tonsils disappear! It works like an antibiotic. I have only used it once, but I was really impressed since our immune systems are compromised because of celiac.

[Guest nini]

I understand how you feel, the diet did seem really silly and annoying to me the first time I tried it... (didn't have an official dx at that point) and so I kinda half a**ed it and didn't really take it seriously... then I let my OB/GYN talk me out of it by him telling me it was all in my head and the diet wasn't good for my unborn baby anyway... (he was full of it but I believed him cos I wanted to, and that's another story)... fast forward to when my daughter was 3 and I was getting so sick that on a weekly basis I was ending up either in my Dr.s office, Urgent Care, or the ER because of related complications... Projectile Vomiting, Constant D, chest pains where I thought I ws having a heart attack, severe anemia, hypoglycemia, hypothyroid, high cholesterol and high blood pressure... also severe anxiety and depression issues...

my point is that when I was only mildly ill, it was annoying and an inconvenience at best... but once I started developing life threatening complications, it was time to take this seriously. I hope that my story can help just one person take their condition seriously BEFORE it gets to that point. You are lucky you were dx'ed after only being ill for a short time. Many of us took many many years and lots of abuse from our Dr.s before we got a dx.

I know a lot of the diet stuff seems silly and annoying, but you HAVE to find a way to make it work for you. Have you seen my newbie kit yet? Click on the link in my signature and at the bottom of my web page there is a link to download the Newbie Survival Kit... it can seriously help you with finding some alternative food choices.

[Suzanne M.]

I understand how you feel, the diet did seem really silly and annoying to me the first time I tried it... (didn't have an official dx at that point) and so I kinda half a**ed it and didn't really take it seriously... then I let my OB/GYN talk me out of it by him telling me it was all in my head and the diet wasn't good for my unborn baby anyway... (he was full of it but I believed him cos I wanted to, and that's another story)... fast forward to when my daughter was 3 and I was getting so sick that on a weekly basis I was ending up either in my Dr.s office, Urgent Care, or the ER because of related complications... Projectile Vomiting, Constant D, chest pains where I thought I ws having a heart attack, severe anemia, hypoglycemia, hypothyroid, high cholesterol and high blood pressure... also severe anxiety and depression issues...

my point is that when I was only mildly ill, it was annoying and an inconvenience at best... but once I started developing life threatening complications, it was time to take this seriously. I hope that my story can help just one person take their condition seriously BEFORE it gets to that point. You are lucky you were dx'ed after only being ill for a short time. Many of us took many many years and lots of abuse from our Dr.s before we got a dx.

I know a lot of the diet stuff seems silly and annoying, but you HAVE to find a way to make it work for you. Have you seen my newbie kit yet? Click on the link in my signature and at the bottom of my web page there is a link to download the Newbie Survival Kit... it can seriously help you with finding some alternative food choices.

In my family heart palpitaions affected alot of us...also thyroid problems, high blood pressure and high cholesterol...etc. There are so many things that go along with celiac disease before going gluten free. I just got dx a few weeks ago. My blood pressure is now perfect, and my Dr. is now looking at labs in amazment at the differece. I don't think she has encountered too many celiacs before me. I feel like a different person. This runs in families and is inherited. So, think back to you parents, were they walking around with symptoms???? Either one of them??? My Mother was, and we almost killed her with gluten. Her stomach stopped working for a period of time while in ICU with surgery beacause of Osteoperosis( also celiac related because of not being able to absord calcium!) My whole family has become educated about the disease. I was initially tested for food allergies and came back wheat,corn,soy and peanut sensitive, but not allergic to it! I had test for celiac and was negative. Then KIMBALL GENETICS did the gene test with just a cheek swab. I was positive. You can find them on the web. I am 50, my sister is 62 and her two daughters 19 & 35 have all been diagnosed with it finally!I have two kids being tested for it now.

[GFBetsy]

Another reason to stay with the diet is because of the long term (but unnoticed) effects of eating gluten when you've got celiac. Do you really want osteoporosis? How about cancer? Unexplained anemia that causes you to want to chew ice, suck on rocks, or breathe laundry detergent fumes all day? Or just have the irritability that causes you to bite everyone's heads off if they look at you wrong?

Not everyone experiences all of these symptoms, but a lot of people experience the anxiety/anger without even realizing that it IS a symptom of eating gluten. And the cancer/osteo/anemia may not show up for a long time . . . but when they do show up, it means that you've been starving your body for a long time . . . and do you really want to hurt your body like that?

If you are tired of eating gluten-free "Quick food" (like thai noodle bowls) Check out the "Saving Dinner" cookbook by Leanne Ely. It's not a gluten-free cookbook, but most of the recipes are gluten-free, and they are really delicious. The recipes are set up for 6 people, so if you are only cooking for 1 person, you'll want to adjust the portions, but as long as you always make enough for lunch the next day, you'll never have to eat Thai noodles again!

[rinne]

Typically, we do not realize that good health is a boon, a blessing, a great gift, until it eludes us.

I have not suffered physically so much, it has only been this winter that I got really ill and I am 51, but mentally I see now how much depression and rage was linked to my diet. I have known that for at least 10 years and have been able to make mental accomodations for the consequences when I did indulge in wheat but until I also stopped dairy I wasn't able to differentiate between the two negative effects they have had on me. Wheat - depression, dairy - rage.

I took it for granted that I would be able to get away with it, although last year I did wonder if I would always be able to, because much of my diet was and is organic and healthy and on my own I avoided gluten most of the time. I was WRONG. One day I woke up and I had crossed a line and on this side of the line the tiniest smidgeon of gluten causes me immediate and intense pain. On this side of the line dairy makes me bloated and nauseous. And on this side of the line I realize that the pain in my back is arthritic, related to Celiac through the gut, and is part of the genetic cascade of illness that befalls someone with a lifetime of undiagnosed Celiac.

One of my sisters is a Celiac and has continued to consume gluten for the past five years, not knowing the seriousness of doing so, the doctor who diagnosed her told her that she has an allergy to wheat and should avoid it. He told her that her real problem was IBS and prescribed drugs for that. Another sister has all the symptoms I had but insists that it is the yeast that is the problem and as long as she avoids yeast she'll be O.K.! She also has the Ankylosing Spondylitis, arthritis, and is not prepared to deal with that either. I have told her "don't cross the line, stop now and save yourself from this" but I think, like me, she thinks she'll get away with it.

Do you think you will?

I hope I don't sound too obnoxious or bossy, I don't mean to be, I know it is really hard to eat differently when there is so little to eat out there that is gluten free. I also remember that at 23 I had more on my mind than doing what was good for me healthwise. That was the year I worked at a bakery in San Francisco and it was the most fantastic opportunity for me, a Canadian prairie girl, and I absolutely loved living there so I never complained about how at the end of every shift I would fall asleep and wake feeling like I had been drugged, foggy and without energy.

[Ursa Major]

Mandy, are you planning on getting married and having children? If you have celiac disease, you don't want to be pregnant on gluten (if you CAN get pregnant, that is, since celiac disease causes infertility in many women, and even in men). I had the most horrible pregnancies, being sick 24/7 for nine months with each of my five children. But what was even worse was, that I had eight miscarriages. Because, you see, miscarriages are also a common symptom of celiac disease.

I wouldn't want a nice girl like you to have to go through that, and I am sure it would break your mother's heart, too (not to mention your own) to go through what I did!

Please do yourself a favour and go gluten-free completely, for all the excellent reasons everybody has given you.

[par18]

I went out to eat with my family over the weekend and again tonight with my sister. I’ve been trying to follow the diet really well and ask a bunch of questions whenever I go out. My sister was teasing me about it and said that it was silly for me to even bother because it’s not that big of a deal anyway. I was generally annoyed that she was teasing me in the first place, but she makes a lot of sense!

I am one of the lucky people who does not suffer with the “classic” celiac symptoms. Hell! I would never know if my food was cross-contaminated at a restaurant! I could probably eat a loaf of wheat bread and never notice anything. If I had canceled my doctor’s appointment and just chalked my one week of D up to a stomach virus, I would have never even known that I had Celiac Disease. So, why should I deal with all of this? I make an effort, but not a fantastic one. I’ve been buying gluten-free foods and more fruits and veggies but most of the time, they rot in my fridge before I ever have a chance/time to cook it! I waste so much money on groceries simply because I’m never home to eat them. I buy gluten-free products to eat at work, but Thai noodle bowls don’t agree with my stomach and I am so tired of these organic soups that all taste the same to me and include Leeks in them. I don’t like Leeks!

When I was diagnosed, I thought “Great, maybe this explains why I’ve always been sick with something every other month.” But I lived 23 years being sick with something every other month and I’ve gotten used to it. I deal with it and move on. I’m so annoyed by this diet that I think I would be happier being sick with allergies and random sinus infections and colds than to have to deal with gluten everyday! Ugh!!!

Mandy,

Sounds like you have not been sick long enough or bad enough. I guarantee if you ever really get sick and stay sick you will be more than willing to stay on the gluten-free diet. Good luck.

Tom

[AndreaB]

Please Mandy. Stay gluten free and make the choice to do your best to eat gluten free when you go out. My family of 5 has 3 that are gluten intolerant/sensitive, 1 that is not and 1 that is too young to be tested by enterolab. We will get him tested when we get the money to. The whole family is on a gluten free diet and none of us had any symptoms that anything was wrong. We had the enterolab tests because of my allergy tests. My daughter ate a gluten cookie a few weeks ago from Grandma and was sick for a few days. Please do your body a favor and even if you don't have much in the way of symptoms, stay gluten free and healthy. If you are still having problems consider eliminating soy and dairy for a trial and see if you improve. Eliminate one for a few weeks to a month and then the other so you can pinpoint whether one or both of them cause you problems. This board is full of ideas on things to eat. Keep your chin up, it will get better.

[cricket]

Mandy,

I am so sorry. I understand your frustration. Living a gluten-free life is a major challenge at first.

Please, please follow it. You have no idea of the damage you are doing to your body. I used to be so healthy, then I found out I had a HOLE in my small intestines from eating gluten. It took me YEARS to recover. You can get awful related diseases like diabetes, thyroid issues, skin problems not to mention all of the miscarriages that usually go with females a celiac disease. I had extremely difficult pregnancies. Heck, I got the SHINGLES twice with my two successful pregnancies.

You have to make this decision on your own. But please take some advice from the rest of us, it is so worth the hassle. Just order grilled meats and veggies, carry a celiac card, and talk to the manger. Subscribe to a magazine called Living Without -- it will give you so many wonderful companies that make great gluten free items. I promise you will LOOK so much prettier and feel so much better in the long run if you follow a gluten-free diet. you can do it!

cricket

[Mandy F.]

Thank you everyone for all of your advice. I think I really just needed to vent... I know that I need to follow the diet and generally do try, although, I know I need to do better. I think that I am overwhelmed right now with transfering schools, moving, and things that are going on at work. I really appreciate all of your suggestions and warnings. I thought it would be easy to follow the diet at first but quickly found differently. Tom is right, I have not been sick enough or long enough for it to have made a major impact and long term (or short term for that matter) planning is not a strong suite of mine. I know that I need to do better. My grandmother was recently put on methodone to help ease the pain from multiple surgeries related to osteoporosis and my mother has ulcerative colitis, diabetes, and high blood pressure. In fact, both of my sisters have had the classic symptoms of celiac for years (one the C and the other the D along with a dx'd wheat allergy) and refuse to be tested. I've just assumed that everyone on that side of the family has it whether they want to admit it or not. I suppose that admitting you have a problem is the first step to solving it... Again thank you all for your encouragement!

Mandy

[emcmaster]

Hi Mandy,

In some ways, I very much envy you. I suffer from horrible pain spasms and severe, severe stomach bloating when I get glutened. In my eyes, it would be wonderful to accidentally get glutened occasionally and not suffer any symptoms.

But you also have it harder than some of us do. Like overweight people that are told by their doctors they are continuing to do long-term damage to their bodies unless they lose some weight, it must be very hard to find the motivation to stay on such a restrictive diet. My motivation is easy - stay gluten & dairy free and feel normal; eat gluten and dairy and look 9 months pregnant and feel too bad to get out of bed. It is much easier for me to resist tempting food because I know that the next day, I'll regret it - not years later.

You might try looking at it like I look at eating a certain number and variety of vegetables a day - I may not necessarily like doing it, but it can't hurt me and will definitely help me.

Not to mention, staying gluten-free seems to be a fantastic way to keep from becoming overweight.

--Elizabeth