Help/guidance From Some Experienced Celiacs! Please!

[LandonL]

Hi all, I am 26 years old, and have just been diagnosed with celiac disease. My marsh score was 1 on a scale of 0-4, so my GI tells me that is good cause we have figured it out early on. I am new to all of this and trying to be a sponge and soak up every thing I can. Since not to many people that don't have this disease know much or anything about it, researching it myself seems to be the only way I learn anything. Problem is, when I surf the net it seems like the only things that I come to is all the SH**TTY stuff that can happen to you like cancer, anemia, osteoperosis, etc. I am and have always been terriffied of cancer anyway, and I feel like i'm going through that "depression" stage that everyone talks about. I have a beautiful wife, a two year old daughter, and a son on the way due in june. I love my family very much, and I'm terrified that this is going to lead to something bad where I won't be able to grow old with my wife, or watch my children grow up.

I have always been a healthy person, (or so I thought) as I have never had any health issues other than mono, and the occasional broken finger or something. No surgeries or major health deals until this. I have always enjoyed life, and when people would ask me what are you most afraid of, I would say Dying, because I love life so much. But ever since finding out about this I feel like I have given myself a death sentence. I have always been the strong one, helping everyone else out, and trying to hold things together during rough times, and now I am the weak one and can't find anything to help me other than my faith in god, although sadly sometimes that doesn't feel like enough. I keep trying to hold on to the fact that they say if you stay gluten free, you will get better but then I hear of so many talking about continuously getting glutened. Its very frustrating cause some sites say if you stay gluten free you can live as long of a life as someone without celiac, but then a couple site have said that it is not uncommon for someone who is diagnosed in their 20's or 30's to die in their 50's and I don't know what to believe.

I respect and admire so many on this site for their courage and the way they deal with this situation as I am aware that there are so many of you who were misdiagnosed for a long time, and are much more sensitive to the gluten than I, so in no way am I trying to feel sorry for myself, I am just kinda thinking out loud and trying to find something to hang my hat on to get me through the day. I often feel like I am making my family suffer because of me, as I am scared to eat out, vacations will be very difficult, and just be me having it, my children are at risk. My quality of life isn't so important to me as the qualtiy of life that I feel like i'm holding back from my family. This is the first time in my life I feel truly helpless. Any helpful advice would be greatly appreciated.

---Landon---

[foodiegurl]

Landon,

I am not one of the experienced, my apologies, but I could have written a lot of what you did!

I am pretty new here too. I live in Chicago, 36, married to a great guy and we have a wonderful 4-year old daughter. My biggest fear has always been illness and not seeing my daughter grow up. My only health issues was developing severe pre-eclampsia at the end of my pregnancy, and that really traumatized me and left me with the huge fear of dying and not growing up and seeing my daughter grow. So, when I found out I had Celiac, I was so shocked! I couldn't breathe. I have learned the internet and medical searching is not my friend.

Gosh, I have not seen it said anywhere about dying in your 50s...now you are making me more paranoid

I found out about a month a half ago, and I do feel bette mentally than I did in the beginning. Eating at home, is still pretty much how it was. My husband agreed to pretty much make the house fully gluten-free, except for a box of bunny crackers for our daughter.

Going out is the challenge. Luckily, in Chicago there are tons of choices. One thing I have done a couple of times is to call ahead to make sure I would be oK there.

I am not sure yet how sensitive I am if I come in contact with gluten, since I have only been gluten-free for 3 weeks. Lucky me also found out I have h.pylori and if anything bothers me I think that is it.

Thank you for starting this thread, I am looking forward to reading the responses.

Anne

[psawyer]

Gosh, I have not seen it said anywhere about dying in your 50s...now you are making me more paranoid

You are at risk of reduced life expectancy from untreated celiac disease. Properly treated, the disease does not appear to have an adverse effect.

Treatment for celiac disease is, of course, the life-long adherence to a strictly gluten-free diet.

The people I worry about are those that do not yet know what they have. My own diagnosis took five years, and even then it only came because I specifically asked the doctor to test for celiac.

The diet is a hassle, especially at first, but after a while it just becomes automatic. I think about all the things that I can eat. My wife no longer eats gluten, so the house is now completely gluten-free. There are just the two of us (unless you count the cats )

[Jestgar]

NOT GOING TO BE BAD!!

All the bad stuff is for people that don't follow the diet. You have made the choice to keep yourself healthy. You are going to be fine.

Most of the accidental glutenings happen during the first year or so. Once you've gotten your new routine established, you'll have far fewer problems. Just be prepared for a few setbacks initially.

Welcome to the group. I'm glad you've found an answer to your health problems.

[Mtndog]

Welcome Landon- you are going to be FINE!!!!!!!!!!!!!!!!!!!!!!!!!!!

You, I'm sure, are freaked out. It's a harsh realization that you have a disease that won't go away but the BEST part of this disease is that it requires no medication and the gluten-free diet has no side effects!

It's an adjustment but stick around here and you are going to do just fine! It takes awhile to get the diet down so be patient with yourself and others as you learn.

Welcome again!!!!!!!!!!!!!!

[raisin]

I can say, being diagnosed at only age 18, I had the same thought. "I had symptoms sense I was 4 years old.. I've been eating poison for 12 years!"

But the fact is.. It doesn't matter how long you ate it for, as long as your not already to the point of having cance or any of the other conditions. In fact, I was starting to become anemic and diabetic before my diagnosis, and heres the good news : as soon I modified my diet, my blood sugar and iron problems vanished. This is very common. I've read about people with full blown thyroid disease have it gone within a few years of gluten-free. It is, however, common for someone diagnosed in their 20s-30s to die of complications if they continue eating gluten, and believe it or not, many people are that neglectful of their own health.

As long as you not only stick to your new diet, but learn your "tolerance level" for gluten (how much cross-contamination it takes for your body to decide that you consumed gluten - some can eat anything not directly containing gluten, others can only eat products made on gluten-free equipment, and most are in between) you will only be healthier and live longer than average - with a lower chance of contracting heart disease.

You may have to have a gluten-free house. Some do this, and some don't, but all agree it removes the risk of household cross-contamination. At the very least, you should segregate your kitchen; i.e. label foods, use separate pans and toasters, dishes and sponges. Many people switch to gluten-free personal care items (especially hand-soap, toothpaste, and shampoo), and gluten-free vitamins, beverages, & meds are important, too. If your wife eats gluten, she should brush her teeth before kissing you (many of us learn this the hard way). - Also, because Celiac is an autoimmune allergen sort of thing, and messes with your digestion, it makes you more susceptible to having other food allergies and intolerance, that will typically diminish over time. Keeping a diary of the foods you eat and how you feel is very helpful in that. Commonly problematic foods to keep an eye on : Oats, Rice, Potatoes, Corn, Xanathan gum, Eggs, Dairy, Soy, Msg/sugar/preservatives, Raw vegetables.

If you have any specific item questions, feel free to ask me c: I'm the most sensitive type of celiac, so every product I use is 100% gluten-free and made on a gluten-free line.

as for holding back your family.. At first, that was a big fear of mine, especially being so young and living with my significant other already, but it turned out he loved the taste of a number of gluten-free brands. His favorite bread is the Kinnikinnick brand's tapioca. Enjoy Life and Glutino are commonly-praised brands, too. Eating out is not something I like to do, but we found that Outback food chain are extremely accommodating and knowledgeable, with their own gluten-free menu. There are a couple of other restaurants I'll venture in to, because the owners prepare meals special for me - and if they want to venture outside your comfort zone, what I do is eat before we leave the house, and bring some fruit/snacks in case I get hungry while out. That way I don't have to eat, but can still keep friends or family company. If it seems safe enough, you can always order a drink in a to-go cup (to avoid tableware CC), or salad in a to-go box. I also bring all of my own food on vacations- but fresh meats, fruits, vegetables, and nuts are always gluten-free - so anywhere with a grocery store you cannot starve.

[Lisa79]

Hi

I feel exactly the same way, I am 29 from Western Australia and diagnosed a month ago, I have two little kids 3 and 4yrs old, a huge fear is not been around for my kids. Its a huge fear of mine getting a serious illness, cancer and dying.

I took this all that bad, my GP has put me on anxiety meds to try calm me, I am feeling a little better but its a long process.

I have had a couple of bad bloats and lower back pain since going gluten-free and worried maybe its contamination from something, We are not going full gluten free household as its difficult with my hubby and kids to cut out all gluten. They still eat regular wholegrain breads and occasional biscuits.

I am sorry I don't have a

ny advise as I am in the same boat, but wanted you to know you are not alone.

I do recommend a food diary, I am planning on doing the same as I do have an intollerance to nightshade foods, (Potatoes, chili, capsicum, eggplant and tomatoes). I see a nutritionist next week, have you been referred to a nutritionist?

[Welda Johnson]

Hi Landon,

Welcome to the site! I am glad that you learned so young that you have Celiac. I am 64, and started having symptoms at age 8 (severe asthma, bronchial infections, pneumonia, whooping cough, etc.). When I was 19 I was diagnosed with food allergies and told that I must take the allergy shots for 3 years or I would most likely be bedridden by the age of 25. Like you, I already had 2 babies, so I was pretty sick and pretty scared. I took the shots, with no relief.

By the time I was 21 I had a third baby, and I was so ill that I was really having trouble functioning. Doctors, specialists, medications--they became a way of life, but no one could really say how to get well. I finally started eliminating foods in my 30s and learned that I could not tolerate any grains or milk & dairy. I cut them out, felt so much better, but then, alas, I would think I could go back to eating them when I felt better. Not so. It was an up and down existence, with lots of depression thrown in as I worked to complete college, began teaching school at age 27, went through a divorce, lived life as fully as I could, and tried to learn what would make me healthier. Also like you, I have a strong faith in God, and that is truly what carried me through.

Finally, a few years back I went for a colonoscopy (my father had died of colon cancer) and the nurse read my chart and said, "Oh you must have Celiac." I had vaguely heard that term before, and a light went on, as I said, "Oh, that's the name for it." I went home, got on the original glutenfreeforum.com website, which existed before this one, and, like you, began to research and learn as much as I could, since although I was gluten and milk & dairy free, I was still having problems with my health.

I learned to check all ingredients very carefully, and I discovered that the soy cheese I was eating contained casein and whey, milk derivatives. Hmmm. The chili beans I was eating didn't have wheat, but did have maltodextrin or modified food starch. For some reason those things bother my breathing. I realized that I got a severe headache when I ate most chinese food--msg bothers me. I learned that egg whites and yeast bothered me. I started feeling so much better, that I really found keeping a stringent diet to be to my advantage. The results were great!

As I began feeling better, I began using my breathing machine twice daily, took my asthma medication religiously, exercised nearly every day, began sleeping soundly, experienced no more ulcer symptoms, and my blood sugar levels and mood seemed to stabilize. I got away from processed foods in cans and packages, and started eating more fruits and vegetables, even going vegan for long periods of time if it made me feel healthier. Now I'm 5 feet tall and weigh about 100 pounds, which is remarkable, because stabilizing my weight used to be a real problem. I start each day with one fresh pineapple, wait 2 hours for other fruits or vegetables, and continue on with soy protein, tamales, refried beans, corn tortillas, corn spaghetti, green salads, all kinds of vegetables, or whatever sounds good. Sometimes I'll eat chicken or fish, but I seem to do well with lots of fruits, vegetables and legumes.

I have an aunt in Texas (my father's sister) who is 99. She is my role model. With 3 grown children and 10 grandchildren, I am always busy, and know that to enjoy my family I have to take care of myself. I am also a retired school teacher and a writer, and am studying for a Real Estate Broker's License, so you can see that life gets better as you get your health under control. My faith is stronger than ever, and I am richly blessed, as I know you are.

I hope that you will be able to spend some time just browsing through the aisles reading labels at whatever health food stores or even plain markets are in your area. It is easy to get lost in thought there, as you learn what is really in the foods we have eaten, and what is in the foods you are allowed. Soon you will have a long list of good-tasting foods that you can call your own. My grandson and sister also have Celiac, and they were tested through Enterolab.com. I wish you well on this journey. Welda

I

[mushroom]

My goodness, Welda, your post just made me realize how different we all are in this disease we share. I actually shuddered when I read what you eat, "and continue on with soy protein, tamales, refried beans, corn tortillas, corn spaghetti"... All the above would have me writhing on the floor (all day!). I don't know if you remember the thread I started recently about the communality of diet, and those that responded were all in agreement that the *only* thing that didn't bother any one was good 'ole water (provided it was pure!!).

By the way, Landon, welcome to the forum. I hope you can learn to live with this disease and have some fun along the way

[Welda Johnson]

Hi Mushroom,

I'm glad you responded to my post, and I am sitting here laughing, just thinking of eating all those foods I listed on one day. At five feet tall I weigh about 100 pounds, but I was just listing the variety of foods that I have as choices each day, not proclaiming that I actually eat all those foods each day. Please forgive me for the miscommunication, and thanks again for helping me learn to communicate more clearly! I'm glad you're here. Welda