Newly Diagnosed And Feeling Overwhelmed

[JustJust]

Hello,

I have just been diagnosed with celiac disease via Deuodenum Biopsy and Serologies. I am so overwhelmed with what it is I can and can not eat and have been an emotional mess because of it. I was wondering if there were any veterins on here that could tell me where to begin? Through on-line research I have relized that this is bigger than just avoiding Wheat, Barley, Oat and Rye due to hidden ingrediants in foods. I think I just may loose my mind trying to remember what I can and can not eat.................... I also looked up celiac disease and then learned about Refractory Sprue. I am so scared that my gluten free diet won't work and I will end up with intestional lymphoma. I can't believe that it wasn't until now the age of 27 that my doctors just found this out. I didn't really have any symptoms except for unexplanable gas when I ate carbs for about 10 years. They decided to do to an endoscopy when they found out I was severly anemic due to very low iron and got osteoporosis due to Vit. D deficiency! My pathology report mentioned Severe and diffuse villous blunting and I have major lymphocytosis. Is there anyone out there that can maybe share their story with me? Any encouraging words, tips or advice? I would really appreciated it I am scared this is going to be eventually fatal for me! THANKS SO MUCH, Justine

[AndreaB]

Welcome Justine.

There are many people on here who have been very sick before diagnosis and have recovered. Take it one day at a time.

It is best to eat as naturally as possible to begin with.....meats/eggs, veggies and fruit. You may need to cook your veggies very soft for awhile to help with digestion. Try nuts and seeds if you wish.

It is also highly advisable to go off all dairy products for about 6 months to give your intestines time to heal. Some celiacs find they have to stay off of it but most can go back on dairy after some time.

I don't know if you're on your own, or have roomies, spouse....but you'll want to go over your cooking utensils/pans. Nonstick stuff that is scratched needs to be replaces....same with plastics. You'll need to check your makeup and personal care products as well. Some people don't mind using shampoo/conditioner with gluten others do. That's a personal choice.

I don't have any specific advice as I'm one who was at the beginning of the celiac trail. Others are bound to jump in though.

[EBsMom]

Welcome, Justine. I'm sure we all remember that overwhelmed feeling. You're not alone in that! A veteran recommended to me, when my family was starting out with the gluten-free diet, that I buy Danna Korn's book "Living Gluten Free for Dummies." It's a great book, that covers all the basics of gluten-free shopping, cooking, and general life. I also purchased another good book recently - "The Gluten Free Bible", but I'd recommend that one for further down the line - I'd have found it a bit overwhelming in the beginning. We've only been gluten-free for 2 1/2 months now, and it's WAY less daunting than it was at first. It's a steep learning curve, for sure, but once you get some knowledge under your belt, it's there to stay!

My practical plan would be to figure out a few safe things that you can eat - fresh produce, meats, nuts, dairy products (if you tolerate them), rice cakes, corn tortillas, for suggestions - and then slowly branch out from there. Over the last couple of months, I've figured out which of the brands that I "used" to buy is safe, and have made substitutions when foods are not safe. If you're not sure about a particular food, you can go to the company website to explore, or you can call the company to inquire about a food's gluten-free status. There are lots of prepared gluten-free foods out there - breads, crackers, cookies, pretzels, even donuts - that are available at specialty and health food stores, Whole Foods, and some mainstream supermarkets. That stuff is all expensive, and some of it is good; also, some of it is BAD! A lot of people go crazy trying that stuff in the beginning....it can be hard on your bank account!! We try a new thing every week or so....and have figured out which items are good enough to buy again. Many people suggest that in the beginning, while your gut is healing, that you eat more fresh, whole foods, and not so much of the pre-packaged stuff. I agree. It's also not a great idea to try the "substitutions" right off the bat. The gluten-free stuff often comes out lacking in comparison, if you still have the vivid memory of the gluteny stuff in your mind. If it's been a while since you ate the gluteny stuff, though, the gluten-free stuff seems better. I hope this hodge-podge of advice helps. You can get through this!!! And if you work at adopting a true gluten-free diet, the longer you eat that way, the more your serious disease risk falls! That's great incentive to educate yourself, in my book!

Good luck to you!

Rho (in NY)

[Rick45]

Hi Justin, Welcome aboard. I was diagnosed 03/07 at age 38 with a lifetime of different symptoms. The List OF Forbidden Ingreedents from this web site, is what I have in my hands as I shop. When I start to get overwelmed, I try to remember, I'm one of the lucky ones diagnosed, so I now know whats up.

[Hardyo]

Hi Justin

Don't panic okay, you are not alone, everyone on this site knows how your feeling and what your going through, i was diagnosed last Nov and i'm still coming to terms with it but trust me the gfd does work, to start of with i stuck to fresh foods ie; fruit, veg, rice and meats, and just checked lables on sauces and packets most lables do tell you if they contain wheat or gluten, and if your not sure don't eat it. there are also gfproducts on the market, there not that nice but when you fancy something sweet its nice to have something in the cupboard.

After you've been on the gfd for a while you are going to feel so much healthier the benefits will so outway the foods you miss, and yes you will probably get complacent like the rest of us and mess up and the symptons can be quite extreme both physically and emotionally but the longer your on the gfd the quicker you recover so like i say try not to panic okay just stick with the basics to start with and trust me it will take time but it does get easier.

Good luck and just take each day as it comes.

[Teacher1958]

Hello,

I was diagnosed in April. I'm 49 and have had symptoms since the age of six or seven. I had an upper GI in first grade, and the diagnosis was "nervous stomach." Of course, once I got older, they had a new term- "irritable bowel syndrome." Those were just catch-all diagnoses for hypochondriac, which is exactly what they thought I was, lazy people that they were.

I started to feel better within the first week after eliminating gluten. It was very, very strange because I didn't just feel better physically, but my senses were much more heightened. Driving to work was almost overwhelming at first because the light was brighter somehow and I had better access to my peripheral vision. I have always been smart but very spacey- the kind of person who asks dumb questions and then thinks, "Oh no, why did I ask that? I already knew the answer."

I worry about getting cancer, too, although not as much as I did at first. As for adjusting to the diet, it does get better. The hardest thing now is having to be constantly vigilant. There are still times when I will go to reach for something and then realize that it's off limits. Hopefully, in October when I reintroduce dairy, I will have more food choices. I've also been a lacto-ovo vegetarian for thirty years so right now I am just eating veggies, fruit, grains (rice mainly), peanut butter, an occasional egg, beans, tofu, and things like that.

I'm sure you will do fine. You're only 27, so your body should heal nicely. I'm sure you're aware that each day you're gluten free decreases your chances of serious health problems, and once you reach that 5-year mark your chances of getting cancer are similar to the "normal" population.

[Luisa2552]

Welcome Justine,

I too am newly diagnosed and 2 weeks gluten-free. I am 41 and have had symptoms similar to yours and frankly, was too embarrased to go to the doctor! Then the pain started and that got the ball rolling. I have had 'accidental' glutenings not from eating hidden gluten but just forgetting that I can't eat certain things! Expect this to happen. The previous advise is perfect. Just start out eating whole foods. I've been pouring over the internet getting info on store brands and stuff that are gluten-free so that has helped broaden my diet. I am lucky to live in an area tha't's pretty progressive food wise and even the big markets have small dedicated sections of gluten-free stuff. I feel loads better already and honestly, there isn't any food that I miss at this point. Good luck and hang in there. These boards are a perfect place to vent and get great info.

Sara

[JustJust]

THANK YOU EVERYONE FOR THE GREAT WORDS OF ENCOURAGEMENT. MOM AND I WENT OUT TODAY TO BUY ME A TOASTER SO THAT MY "BREAD," DOESN'T TOUCH HER BREAD....lol EVERY SINGLE REPLY TO MY POST MEANS SO MUCH AND I CAN'T EXPRESS HOW MUCH I AM THANKFUL FOR THE POSTIVE OUTLOOK. Please feel free to keep the advise and tips comming .......... so far It's been three days since I have been gluten-free............. yeah yeah Justine

[Will-Deez]

Justine-

I'm also 27 and was diagnosed earlier today. My sister was diagnosed a few weeks ago and as soon as she was she called and said that I should get tested ASAP.

It's crazy to think that the life as I knew it will now be changing...not only the diet but the opportunity to be able to live the rest of my life (and there is a lot left) and feel healthy. Since the age of 18 I've always had this feeling of something being wrong, just off. Fortunately I haven't had to suffer thought the GI symptoms that accompany celiac disease like you, my sister and many people on this board.

I've contended with the mental and emotional anguish of this thing. My depression has been appalling at times and the "brain fog" that I've read people describe has been so consistent that it has become part of who I am on a day to day basis.

No matter how weird and scary this thing is right now the positives far out weigh the negatives...We are young we have so much time to adjust and live the rest of our live feeling healthy, some people here have lived with this thing for years upon years with out ever knowing. If I ever have kids they will be screened right of the bat and will be adjusted before they even know they have it.

The first Dr. I went to to get blood tested told me he wouldn't give me a blood test because I didn't have any GI problems...I couldn't believe it. After my sisters diagnosis and all that I had read online...I had it out with him right there in the exam room and walked out. (he wasn't my family Dr. I just moved here to Phoenix)

Luckily I found the Phoenix Celiac Assoc. website and it directed me to a knowledgeable Dr. who had treated many Celiacs (Dr. Deborah Villa). She was cool and understood...we talked and she made me feel great about it. I am confidant that the next generation of Medical professionals are going to tackle this disease and bring it to the mainstream.

We are going to be fine and it's inspiring to read all of the life changing recovery stories on this board. Try not to let it get you down...The best most healthy years of your life are ahead of you. -Take care

[piperminted]

Daughter at 24 was diagnosed thru blood test. Now Mom and 2 sisters tested gluten-sensitive thru Enterolab tests, but 2 of us had blood tests that did not come up positive. Trying to get a handle on making my kitchen gluten-free for all of us and have become aware of a new book: "Gluten-Free Grocery Shopping Guide." Though not every product available out there is listed, it is SURE handy to carry into a grocery store and not be so overwhelmed with trying to decide and/or remember what is safe. I was encouraged to continue to try to become gluten-free. (Not there yet...)

[NoGluGirl]

Hello,

I have just been diagnosed with celiac disease via Deuodenum Biopsy and Serologies. I am so overwhelmed with what it is I can and can not eat and have been an emotional mess because of it. I was wondering if there were any veterins on here that could tell me where to begin? Through on-line research I have relized that this is bigger than just avoiding Wheat, Barley, Oat and Rye due to hidden ingrediants in foods. I think I just may loose my mind trying to remember what I can and can not eat.................... I also looked up celiac disease and then learned about Refractory Sprue. I am so scared that my gluten free diet won't work and I will end up with intestional lymphoma. I can't believe that it wasn't until now the age of 27 that my doctors just found this out. I didn't really have any symptoms except for unexplanable gas when I ate carbs for about 10 years. They decided to do to an endoscopy when they found out I was severly anemic due to very low iron and got osteoporosis due to Vit. D deficiency! My pathology report mentioned Severe and diffuse villous blunting and I have major lymphocytosis. Is there anyone out there that can maybe share their story with me? Any encouraging words, tips or advice? I would really appreciated it I am scared this is going to be eventually fatal for me! THANKS SO MUCH, Justine

Dear Justine,

Welcome to the forum! I have a little present for you! I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[JustJust]

Dear Justine,

Welcome to the forum! I have a little present for you! I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[Emily Elizabeth]

Justine,

I am 26 and was just diagnosed in May. It has been very overwhelming for me as well. Sometimes (especially when I have ingested gluten) I feel like I don't even want to continue living if this is what it will be like. I have learned that Celiac Disease can cause depression and when I have been able to be gluten free for awhile I feel much better about the whole thing and even laugh at the fact that I was so down about it before. It is definitely not easy though and you just have to take it one step at a time. Just today I finally bought new pans and utensils for cooking. Before then I didn't believe it was necessary. It's hard to believe that we are that sensitive, but when you continually get glutened for no reason (seemingly) you finally start listening to those around you. I wish you the best. It's not easy, but it's doable.

Is there anyone out there that can maybe share their story with me? Any encouraging words, tips or advice? I would really appreciated it I am scared this is going to be eventually fatal for me! THANKS SO MUCH, Justine

[NoGluGirl]

Hi NoGluGirl,

Cute name by the way! Thanks so much for the list............ it's actually so funny because I saw that you posted the list for someone else and i immediately printed it! ( I SHOP AT WALMART ALL THE TIME and was so excited to see All the label that read Gluten-Free, the shopper there tought I was nuts because I would run to my mom in excitement when I found another gluten-free food that I could eat....LOL) YES, I spent the entire day with my mom in the kitchen today and yesterday just cooking! Once I got done making breakfast and cleaning like I had OCD then it was time to make lunch and dinner wasn't too far behind............... WOW, my mom and I are exhausted! Infact we didn't even get to eat dinner until 10 pm because we spent the day setting up a corner in the kitchen for me that was Gluten Free. Thank god that is over, i think that is what is making me feel so overwhelmed, the preparation to get, "my space," gluten-free. I have a question for you.......... how anal retentive do I have to be about contamination? I have gotten to the point that I dry my dishes with my own dish towel, use my own separate sponge, don't touch my dish to the counter top unless my gluten-free towel is underneith it?!?!?!?!?! It's kind of making me crazy and don't know if I have to be this cautious about it. All I keep thinking of is the pic. of my intestines that GI showed me with blunted villi and an army of lymphocytes attacking my own body and I get freaked if someone thinks of comming by me with a plate of Gluten food............. Any advice would greatly help and thanks again so much for the list....... there's a walmart less than 5 minutes from my house!!! YIPPY

Dear Justine,

Thank you for the compliments! I thought surely that my name would be taken! Surprisingly, no one had picked it! I am glad the list helps so much! I was all excited about the Great Value stuff being safe, too! It is a rush! We have a Wal-Mart only a few miles from us, too, despite living out in the county. I love Wal-Mart!

I know what you mean. It is exhausting doing all of the cooking and obsessive cleaning. I am going to have to start doing all of my cooking for the week in one day. I cannot keep this up! I need to have energy for some other things!

I am stuck sharing a kitchen with my parents. They think I am a hypochondriac. I have been OCD with the cross-contamination. I get violently ill from a microscopic crumb of the crap! You are doing it right! You may even want to keep your cookware and utensils in a plastic Rubbermaid tub to prevent crumbs from getting on them. I get as freaked as you do if someone even gets within like ten feet of me with a cracker.

Isn't it nice that Wal-Mart is near everything? That is one big problem with Whole Foods. The prices are high. They also are not in small towns. Wal-Mart is everywhere practically! No matter what town you are in, they will be there or near there!

Sincerely,

NoGluGirl