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metsfan11

I Have Just Been Diagnosed With Celiac

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Hello everyone! My name is Jesse and I have just been diagnosed with Celiac Disease. My mother just told me, and to be honest, I have mixed emotions. I am not sure how to deal with it. We just bought all of the gluten free food. I am scared that I have to deal with this for my entire life. I wonder if I can survive being thrown into this new world of no bread. I can't imagine not being able to ever eat a bagel again. It is really shocking to me, and I am truly scared. How did everyone feel when they had just found out? I really appreciate all of the support, and I am really glad that I found this site. Thanks! :)

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Welcome! If you'll read my signature below, you'll see that I've had trouble for quite awhile and so it's not such a shock to me. I've been "wheat free" mostly for the past 30 yrs. So I'm rather used to it.

Going completely gluten free is a bit different........but I'm feeling so much better that I'm willing to stick with it.

Were you having really bad symptoms?


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

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Hi, Jesse,

Welcome to our community.

My first thoughts on learning about celiac disease were similar to yours. But it isn't like that.

There are a number of gluten-free bakeries making all kinds of products. You can still have bread, muffins, pancakes, waffles, pizza, bagels and other baked goods, all made from gluten-free flours. You can bake your own as well. I buy many baked products from Glutino (click here). There are a number of other sources of baked goods.

Gluten-free beer exists as well. In Canada look for la messagere; others are available regionally in the US.

It will take some time to learn about the diet, but over time it will become easier. I have been doing it for over six years. It seemed difficult at first, but once I had been on the diet for a while the change in my health was dramatic. I will NEVER go back to eating gluten.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I appreciate the support. I have been reading through the forum and around the web, and it seems that whoever is on this gluten free diet seems to be much healthier and happier, and I hope that is the case for me

Were you having really bad symptoms?

My symptoms, since I was little, was that I couldn't tolerate dairy. During the day, I could eat lots of cheese and milk, but at night, it was a different story. I would have a terrible burning sensation, and usually vomit. I assumed it was acid reflux disease, but once we got tests done we realized it was celiac disease.

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welcome, Jesse!

I know how overwhelming it feels when you first get diagnosed. It took me a while to grieve, and sometimes I still tear up a little at pizza commercials. As for "fagels" (that's what I call my "fake bagels") the glutino ones are quite good, as are the kinnikinick (not sure I spelled that right). As for breads, make sure that whatever kind you choose, you toast it a little to make it edible....makes a huge difference.

It is a sharp learning curve, but you'll get there. And you're going to feel soooo much better, which makes it all worth it.

We're here for you. You'll get lots of info and support here. Never hesitate to ask questions :)


dx by blood test and biopsy April 2006.

gluten free since, and avoiding dairy.

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Welcome to the forum. You are going to have a real learning curve, but you can always come here to ask any questions. There are many very experienced people on this board. They will help with the diet, emotions and how to deal with friends and family who may not understand.

They will also make you laugh, and that is very good medicine for Celiac disease :P


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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Guys, I really can't express how happy I am to already have found others who have the same disease as me. When I first found out, it seemed like such a rare disease, and I figured that no one had it but myself. Thanks for proving me wrong! I look forward to my healthy future!

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Welcome! It is all very overwhelming at first. I am pretty new into this still but it does get better. I try to think day by day. I LOVE candy and I can't even imagine that I can't ever have any again. So I don't think about it. I'll deal with it later and maybe I'll find other types that I can have instead.

This is a great place to get help, vent, what ever. This place if full of people that know what you feel.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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Welcome! Change is never easy and having to adapt to something new can be overwhelming, especially when it ties into something as intrinsic to our way of life as food. It helps to, one, give yourself permission to grieve a bit, and , two, always focus on the fact that this is your way of managing your health and avoiding some other nasty health issues down the line.

It does take time, but it gets easier. Think of all the things that you can have, and how much better you'll feel. Don't hesitate to vent or ask any questions - no question is "too silly"!


Gluten-free since 10/05 - Positive dietary response with Doctor's validation! - Debilitating migraines, constant dizziness and lightheadedness gone; anxiety & panic attacks, depression, agoraphobia and extreme exhaustion considerably lessoned

Dairy/Casein Intolerant

Soy, Cabbage, Sugar, Peanut, Shellfish, Caffeine, Egg, Potato and Tomato allergies / intolerances

Sporadic reactions to: Poultry

Avoiding all preservatives and additives

Also Multiple Chemical/Environmental Sensitivities

Mitral Valve Prolapse

Pulmonary Embolism - 1999

Dance, when you're broken open.

Dance, if you've torn the bandage off.

Dance in the middle of fighting.

Dance in your blood.

Dance, when you are perfectly free.

RUMI

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Welcome! (to the disease and the board). It definitely feels overwhelming at first, but the change in health is huge. It's scary now, but after a while, it totally becomes second nature. Lakefront's New Grist beer is quite good (even my non gluten-free friends like it). If you're around a Whole Foods, their "Gluten-Free Bakehouse" line is my favorite for bread. I like to use a lot of rice and potatoes more than gluten-fakes... it's much cheaper.

Hope everything goes well with your transition. Good luck!


Enterolab results: 14 October 2006

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

(Yay!)

gluten-free since May 2005

Currently soy and dairy free !

"You have filled my heart with greater joy than when their grain and new wine abound"

--Psalm 4:7

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Welcome to the site Jesse,

Prior to my finding out about this I had researched it back as far as 1975 because I had suspected that I had this disease. I researched it and never acted on it because I did not come across anything that said it was severly damaging to ones health. Of course great strides have been made in food since then. So, when I went gluten-free and was diagnosed it didn't seem that hard to me. The hardest part is being at work and eating in public. Other than that it is a gluten-free cake walk as opposed to a race to the bathroom.

There are some semi decent breads out there but mainly I avoid them. Bread is not that important to me.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

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It's not as tough as you think...there are many resources here that will help. Myself included.


Dx and Gluten Free since 1996

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Hi and welcome!

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Welcome! It is all very overwhelming at first. I am pretty new into this still but it does get better. I try to think day by day. I LOVE candy and I can't even imagine that I can't ever have any again. So I don't think about it. I'll deal with it later and maybe I'll find other types that I can have instead.

This is a great place to get help, vent, what ever. This place if full of people that know what you feel.

Oh yes ... there is lots of gluten free candy out there! Cadbury, & Hershey put out quite a few gluten free bars and chocolates. Read the labels and watch for Malt flavouring amoung the obvious cookie stuff. Malt is a no no.

M&M's are gluten free ... the chocolate and peanut ones. :P

I think there should be a candy thread on here some where, I can remember reading it. A lot of the non-chocolate candy is gluten free as well. Most licorice is NOT gluten free unless you find the ones that are made special for us. I know there is some yummy gummy licorice bears out there, but quite expensive :(


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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Thanks, everyone for the nice words.

I have a question, are Skittles ok to eat? They are my absolute FAVORITE candy, and since M and M's are gluten free and they are made by the same company, that is a good sign.

Thanks! :)

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Thanks, everyone for the nice words.

I have a question, are Skittles ok to eat? They are my absolute FAVORITE candy, and since M and M's are gluten free and they are made by the same company, that is a good sign.

Thanks! :)

Yep--Skittles are fine :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I'm right there with ya, Jesse! The first thing I checked after my diagnosis was M&M's and skittles :)

Proof that God loves us and wants us to be happy!!


dx by blood test and biopsy April 2006.

gluten free since, and avoiding dairy.

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Welcome to the forum! My advice to you is to read this forum. There is lots of support here. Also, keep it simple to start out with. Veggies, fruit, proteins, etc. Your gut will need to heal. Don't be in a hurry to rush out and find all of the gluten free stuff you can find. I did this and ended up not being ready for these things until recently. You will go through several stages of physical and emotional healing: Anger is a biggie and at some point you'll test out your old food habits "just to see". You'll regret it. You'll feel sorry for yourself, you will cry, etc, etc. Trust me, you will get to the point where you will be okay with this and have some fun too. Good luck.


Positive biopsy, positive blood test in 2/2006

Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)

Interstitial cystitis diagnosis 2004

Hysterectomy 2003

3 for c-sections, 2 laparoscopies to remove abdominal adhesions

Abnormal heart beat when tired or glutened

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Welcome to the board!

It seems overwhelming at first, but it really is not too bad once you get past the learning curve. Remember that the reason that you think it's hard to imagine never having bagles again is because that is what you're used to. If you had never seen a bagel in your life, you wouldn't think that way. That means that it's not some absolute that everyone has to eat bagels! And that there are other things to get into the habit of eating instead! It's a little harder, because other people will still eat them, but you have lots of other choices, and this board can help you find them! Until you find them (and how long it takes depends on how hard you look, what resources are available in your area, and how selective your tastes are), it may be tough, but there is light at the end of the tunnel!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Hello everyone! My name is Jesse and I have just been diagnosed with Celiac Disease. My mother just told me, and to be honest, I have mixed emotions. I am not sure how to deal with it. We just bought all of the gluten free food. I am scared that I have to deal with this for my entire life. I wonder if I can survive being thrown into this new world of no bread. I can't imagine not being able to ever eat a bagel again. It is really shocking to me, and I am truly scared. How did everyone feel when they had just found out? I really appreciate all of the support, and I am really glad that I found this site. Thanks! :)

...well not NYC style bagels anyway. There are reasonable substitutes but I do not know what they are. Kinnickinnick (a mail order bread company) has a good selection; so they might have a reasonable kind of bagel. Maybe others on board can tell of their "gluten-free bagel" experiences.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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metsfan:

welcome to our celiac corner of the world. Amazingly, that corner is spreading!

You said that you felt like no one else had this. I think we all felt like that too! The latest research is that 1 in 133 Americans have Celiac Disease....and about 97% of those who have it, DON'T KNOW IT!

The National Institute of Health has actually just launched an initiative to help educate doctors about it, because they just don't realize how prevalent it is.

Being diagnosed is like a roller coaster....plenty of ups and downs. Sad to be diagnosed, but happy to have a name for it. Mad that you have it, but thankful its "treatable." Etc. Etc.

We'll help you get through it!

And yes, I like the above-mentioned bagels. I can get them at local health food stores. If they don't carry them, you can ask them and they probably will.

Also, many people on the board agree that Tinkyada pasta (its a brand that makes rice based pasta, instead of wheat based) is the best. They come in all shapes and sizes. We use them all the time and LOVE it. We even serve it to non-Celiacs (my husband eats it all the time).

Stick around :)

Laura

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Thanks again everyone. I just had my first gluten-free meal. I had chicken and some gluten-free pasta (I forgot the brand). The pasta tasted pretty good, it was a little tough but I got used to it. Overall, I am satisfied.

I also found these really good pretzels. They taste exactly the same!!!! :)

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I was diagnosed a year ago and as a freshman in college. It hit me hard. I couldn't imagine life without bread or pizza and all that good tasting stuff. Two months into a gluten free diet it hit me: I no longer felt like I was a hundred years old every single day. It didn't hurt to move. My stomach was sooo much better. I honestly hadn't known any different since I had delt with it my whole life. I think at one point or another all celiacs want to grab a slice of pizza or something filled with gluten, but after being on the gluten free diet you realize you just don't want it anymore. The beginning of the diet stinks, nobody can lie about that. After you adjust to it and find other methods of cooking foods you like (which are also usually alot healthier ) you just get to a point where you don't miss the gluten anymore! Good luck with the transition!

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