Just Diagnosed.

[006]

I'm new to this forum and unfortunatley, I am new to Celiac Disease... Well, the new part is that I just found out. I understand this has probably been with me all my life. I am 45. I never had one symptom. Sure, I haven't been able to gain weight, but I'm hyperactive and burning calories just from my personality. Yeah, I get fatigued at times, but I also lift weights like a nut. Yes, my strength has slowly declined over the years, but I'm not 22 anymore. I never had any aches, acid, diareah, vomiting, weight-gain, bloating... nothing. Some of you may suggest that my aforementioned observations are symptoms.

It has been only a week and I am really struggling with this. I have a huge appetite and I love to eat. (I know; some of you will say my appetite is a symptom). I walked by an incredible selection of Chinese food at a new Wegman's and thought I was going to start sobbing. It didn't get any better when I passed the bakery, deli and other incredible looking areas.... all on the way to my gluten-free section. Sorry guys, but it feels like a sentence to hell; especially when I hear of pocket pamphlets for cooks at restaurants with very precise instructions on how to cook my order.

I realize that I must be strict and deal with this. But I must admit, the hidden gluten thing is killing me... figuratively and potentially, literally.

How the hell do I cope? I have already made a number of major changes and I'm eating the same two or three meals every day as I'm freaked out over cross-contamination, hidden gluten, etc.

I'd love to hear stories from those of you who didn't take this well in your early diagnosis days.

[MELINE]

Hello and welcome

I think that you are focusing on all the things you CAN'T eat and you are missing all the stuff that you CAN eat. Just to let you know that if you keep eating the same 2-3 meals every day you are not helping your villi to heal. not at all....you have to rotate meals and give your self all the needed vitamins. the repeating meals can lead to leaky gut and other stuff. it is not a myth. it is true.

you can visit the site and find some really tasty recipes. I am sure you have more choises than me. I guess you don't have any other food intolerances (at least you didn't mention anything) so I just can't see why you think that your choises are so limited. There are gluten-free breads, chocolates, flours. The fear of cc will finally go away. the more informed you are the less afraid you will be. try not to panic...

any way I understand this is all new to you, I just wanted to say that things are not so tragic as they seem at the begining. Maybe I see it in a different way cause I was suffering SO SO SO much that I never want to eat bread again. For me it was a relief. You didn't have all the symptoms and I guess it is harder for you. Did you have a biopsy? how did you find out??

Meline

[ShayFL]

I was EXACTLY like you in that I had an amazing appetite and ate like a horse and stayed thin. I was hungry a lot for the first 3-4 weeks and then it evened out.

I eat mostly whole foods now: meats, veggies, fruits, nuts and some alternative grains. I keep a variety of oils and spices to cook with. It is the way we are meant to eat anyway. A period of adjustment. You betcha!!

But doing fine with the food now.

[home-based-mom]

Meats, fruits, vegetables and starches EXCEPT wheat, barley, rye and possibly oats are all naturally gluten free. So there are 3 things, possibly 4, that are off limits to you, and the rest of the world of food is yours to explore and enjoy.

What you will need to give up is the unhealthy western diet of processed foods because many if not most of them are infused and infested with wheat or other gluten-containing items. And eating out is definitely a challenge because most people don't "get it."

Most people discover that when they shop around the edges of the grocery store where the fresh and frozen meats and produce are found, their grocery bill goes down, the variety and quality of what they eat goes up, and they feel better.

You indicated that you had no obvious symptoms and you did not tell us how you came to be diagnosed or why you were tested in the first place, but celiac is genetic so if you look at older family members, at least some of them are probably in crummy health or died miserable deaths. That is the "hell" you were destined for before diagnosis, and should be able to avoid as long as you go and stay gluten free.

[ShayFL]

Try to look at it this way. They caught you early. Your disease requires a change of diet. That's all. Be thankful that your disease does not require, surgery, chemotherapy, dialysis, transplant or such.

[Lockheed]

I hate the walk of shame to the gluten free aisle as well. Really. Even after six years I hate stopping in that aisle. I live in Texas so when I do stop in that aisle people make assumptions about you and your "alternative" diet and "alternative" lifestyle. Like this is something I chose?! So I don't shop in that aisle anymore. I shop at the Deli (and trust me I spend lots of time asking questions and reading labels). I shop in the fresh fruits and produce section. I shop at the butcher's. Sure it might cost more to buy better quality food, but I have all that extra money from NOT eating out and from NOT buying pricey pricey prepackaged gluten free stuffs from "that aisle". I've actually managed to cut down the food bill by about $50 a month now. And now it's funny because people will say "I can't imagine living without pizza" and my response is "your pizza could buy me two prime cut angus rib-eyes." I'd rather have a good steak than pizza any day of the week.

[purple]

Try to look at it this way. They caught you early. Your disease requires a change of diet. That's all. Be thankful that your disease does not require, surgery, chemotherapy, dialysis, transplant or such.

AMEN! We found out early too! My friend had endometriosis, only 1 child, multiple surgeries, hysterectomy, possible IBS or chrohns (wasn't that either), migraines, allergies, back/leg pain, fatigue, spacey, lack of concentration, poor memory, loss of hair, abdominal pain, loss of work, miserable, etc. etc. She still doesn't know if its gluten and its been 15 yrs. She wants to get checked. My 19 yr old had extreme PMS which is the major reason we took her to an osteopath. Bullseye!, he diagnosed her same day. Whew! Then I learned about "IT" not knowing what "IT" is. Just give up gluten and be glad you will feel better! I have discovered how to cook healthy without all those chemicals, additives and preservatives. Now to teach my daughter that hates to cook...ha ha...now she has to learn. Good thing she loves rice and can still eat dairy b/c ice cream is a favorite. One day she went to the store and said she couldn't buy anything. I tell her go for the fresh food in the store. It's alot healthier and you don't have to cook fruit. She makes layered refried bean dip...yum.

[TipTip]

Welcome 006...

I know it is overwhelming at first - for me it was pretty shocking, I too had few symptoms other than fatigue. I also had several crying jags in Whole Foods and other places when I couldn't eat what I wanted to (even if there were foods available) or when people (friends, family) would question my diagnosis. I also felt very overwhelmed with the hidden gluten, the cross contamination and worry. I also had to really adjust to telling people about my diet, changing my behavior and viewing myself in a new light.

And, though I agree with other posters that at least you found it early and at least you don't have something worse - it's okay for right now not to feel that way. When you're first in it, you can feel however you want - regardless of how lucky you are not to have something worse. Those kind of logic conversations might not be meaningful for awhile - and that's okay too. I know I tended to get very very angry when people would say this to me when I was first diagnosed - because essentially it meant "you have it pretty good" which though true, is not comforting when you are in the first weeks spinning around getting your feet planted in this new gluten-free world.

My suggestion (from a fellow grocery store cryer!) is to take it one day at a time, allow yourself to be sad or angry occasionally (though don't take it out on others ) and hopefully take some comfort from the knowledge that you will eventually feel better (even if you think you felt fine before - like me!) and it will get easier (I promise...).

Take care.

[redgf]

My advice is to get on the wegman's website or the glutenfreeregistry.com site and get the list of gluten free foods wegman's brand offers. My family lives near a wegman's, I don't, but every time I go up north to visit we get a updated list in advance and I do all my shopping there. And as far as food aisles go, I make tons of different kinds of food at home instead of buying premade. When I go past a great smelling chinese restaurant, I go home and make an awesome batch of teriyaki ginger chicken, or I just grab a packet of A Taste of Thai seasoned noodles. I make pizza at home, my whole family is gluten free and most of our guests don't even realize they are not getting gluten! I guess I am just saying keep your head up, and when you really miss something check around, I find most times I can find a gluten free version somehow! I write to companies like Frito Lay and grocery stores every six months and get an updated gluten free list, I started doing that because I couldn't survive on fruit and plain burgers... and I needed my cool ranch doritos and crunchy cheetos!

Good luck!!! And remember, you can always have little guilty pleasures that are gluten free, like cheetos or chocolate, just make sure you are eating gluten free! Always read every label!

[006]

Thanks to everyone for the feedback and support. I'm very sorry that I am responding late but I'd like to follow up and answer some questions via this update:

I have no other conditions or symptoms. So far, Just Celiac. I got my confirmation just yesterday with the scope (EDG) lab report. I'm a C3 (severe). The cool thing is that my PA also has Celiac. She was helpful. But she made a bad assumption. she said she thought I might have been "triggered" for only a year. My theory is that it's been at least 10 years. I used to be a bodybuilder and to most, I look like I'm in shape. However, I have slowly lost about 23 pounds and those that knew me over the past 10 years have reminded me how I am "shrinking." As previously noted, my strength and energy has gone down. I get tired easy during late afternoons if I worked out in the morning or if I was having a stressful day.

We're now going to follow up with a number of tests; bone density, vitamin absorbtion, cancer scans, etc. I admit, I am a little paranoid about the cancer aspect of this disease; i.e. having it for a long time before finding out and changing the diet.

I didn't wait for my confirmation and began to change my diet, but along the way, I am finding that I have been a victim of hidden gluten. Most recently, a damn Hershey's dark chocolate miniature. God, that irritates the (explorative) out of me. But the mellodrama and self pity is about over and I am focused on being strict. I am also excited to get some of my weight and strength back. It's easier to be more positive.

I'm still stressed out over the travel part. I've been on two domestic trips. It hasn't been easy. I already made a customized form for restaurants. This is the part (along with concerns over cancer) that I dread. I can deal with every other aspect.

I've been writing companies and it surprises me how many actually fail to respond. Kind of a drag. I'm dying to find out if my 8 O'clock brand Hazelnut whole bean coffe is gluten-free or not. Anyone know?

I will make a seperate post about a recent contact with Vitamin World. Very scary conversation.

Anyway, I welcome your contacts, email, replies. I have quite a bit to learn and perfect with the gluten-free life.

Thank you all once again.

6

[bakinghomesteader]

It can definately be a struggle. Just yesterday I made cinnamon rolls for the first time since diagnosis. I cried. I got all depressed after looking at them. They weren't my "original" newspaper published worthy ones. They tasted the same, but did not look or feel the same. I came to realize I am just going to have to know that not everything is going to be the same. Most things come close or even the same, but not everything.

I am just going to try a different recipe and move on. I usually only made them Christmas morning anyway.

It gets better, but we do go through a "mourning" period. Then you pull yourself up by your bootstraps and move on to new things. I have to say about the restaurant thing, I had to stop eating out. I was getting cc every time. There are places I know I can go, so when I have to I go to those places.

It will get better.