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butterflygirl

Newly Diagnosed And My Whole Life Ahead Of Me

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This has got to be one of the saddest days for me. Although I think the doctors have finally figured out what's wrong with me, I'm now faced with a life-changing illness that has gotten hold of me at age 28- and I still have my whole life ahead of me. Now, for the rest of my life, all the foods I've enjoyed eating or cooking are making me miserable and I can no longer just be part of the many people who enjoy whatever they want whenever they want.

 

For so long, I've been battling with gluten sensitivity but never truly knowing what was the problem. For years I've felt it coming on but always chalked it up to feeling too full or eating too much sugar or greasy foods. Within the last 6 months, my body has severely rebelled and the moment I ingest any gluten into my system, I blow up like I'm 9 months pregnant and it takes several hours to begin to deflate. I always compared the feeling of the extreme bloated reaction to having a balloon inside me that just wouldn't pop. No matter what I did, I could gain no relief. I'd begin drinking tons of lemon water and working out but sometimes, working out would just make things worse. I would actually feel pain when I did a sit up- probably from all the inflammation occurring inside my body. 

 

I think the biggest problem I'm dealing with now is, I'm only 28. I feel like my life is just beginning. I'm engaged to be married, I want to have a family soon, and now for the rest of my life, I can't live a "normal" life anymore. Now I'm one of the people I always laughed at and thought "how awful to have to be a label checker"- now I am one. I'm going to have to be the person who turns around every box to check the ingredients. I'm someone who cannot just go into the kitchen and start baking unless I'm baking for someone else, but how fun is that? I'm living the life of someone I never wanted to have to deal with. I always became so annoyed by my mom and aunt constantly talking about nutrition and talking Paleo and all the other diet fads. Little did I know, I would become one. I'm absolutely beside myself with now feeling like this is all I have left. I know life doesn't revolve around food, and I know there is so much wholesome and delicious food out there to be had and I realize all of the benefits like weight loss that will probably come as a result from this, but I didn't think at this point in my life, I'd have to be dealing with this. 

 

What about those who don't take care of their body, eat 10 times worse than me, snack on cookies and chips all day and drink soda with every meal?? I was never even that bad at my absolute worst! My biggest vice was pizza and bakery goods. So what? That's probably 75% of all americans. I love water and drink it daily- probably 2 gallons a day without even thinking about it. I never felt the need to snack, but I would make my meals mostly about gluten. I'm sure about 75% of my meals revolved around gluten. Ordering pizza and breadsticks as my meal. Going to a restaurant and ordering beers, fries, and wings wasn't the best option but who doesn't do that once in a while? I just feel targeted. Why me? Pity party for 1 right here. :( 

 

If anyone out there has a similar story, a success story, any helpful tips on how to cope, or just any general uplifting comments to add, I could really use it. I'm beginning a new journey, one that I tried so hard to rebel against, but now I'm out of options. I don't want to take years off my life. I want to live long and happy the way I always envisioned my life. I need inspiration. 

 

I would love to upload a picture of what the gluten looks like in my belly- but  I can't figure out how to do that either. I'd appreciate help with this as well :) 

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Congratulations on finding out what is wrong. Congratulations on your engagement too.

 

The first place you should start is the Newbie 101 thread in the coping section. Read it and take notes so you will remember it. Be sure to click on all the links provided too.

 

Yes, it is going to change your life - for the better! You will no longer be sick. And remember, it could have been something much worse. Just think, you don't need surgery. You don't need medication. All you have to do is stick to your diet.

 

And while I won't say it is easy at first, it DOES become easy as time goes on. It is something most of us don't even think about anymore. Once you have learned to read labels it's a piece of cake (gluten-free cake of course.) :lol:

 

And this is such a great time to become gluten-free. There is a new law in the US that stipulates that anything labeled gluten-free must actually BE gluten-free. And there are lots of products that don't carry the gluten-free label that still are gluten-free.

 

Wheat, in the US MUST be declared on labels. Rye is pretty much only in rye bread and some crackers. Barley is the only gluten grain that MIGHT be hidden in things like malt, but usually companies will say "malt from barley" because barley is expensive and they like to crow about expensive ingredients.

 

The other thing you need to watch out for is oats. While they aren't gluten grains, they usually are contaminated (because of shared equipment) so unless they say "certified gluten-free", it's best to avoid them.

 

Cross-contamination is something you need to watch out for. There is no law stating that companies have to tell us if a product is made in the same facility or on the same equipment as wheat products, but there are some companies who always will. Kraft, Unilever, Con-Agra, and Nestles are some. You can read the labels on any of their products and if you don't see wheat, rye, barley, oats, or made on shared equipment on any of them, you can eat the with confidence. And believe me, Kraft and Con-Agra in particular are parent companies encompasing so many brands your choices will be almost limitless. (For example, Kraft makes Planter's nuts. Con-Agra makes Marie Calendar's. And SO SO SO many more.)

 

Now, getting down to it - please don't bake gluten foods for others. Flour dust gets into the air where you will breathe it in. It will get into the back of your throat and you will swallow it. Not only that but it stays in the air for hours and will settle on everything. You can bake gluten-free things and you and others will find them delicious. There are loads of gluten-free baking mixes out there and there is a great cookbook by America's Test Kitchen called "How can it be gluten-free". Lot's of folks here have it and rave about the recipes. You can also check the recipe section here as well as the what's for breakfast/lunch/dinner threads for more ideas.

 

OK, now a word about gluten withdrawal. It's not just psychological, it's physical. Expect headaches, mood swings, and ravenous hunger for the first two or three weeks. But when you come through the other side you will start REALLY feeling great.

 

You will probably have a meltdown or two at the grocery store at first. I think just about all of us have had that experience. But keep in mind that whole foods - fresh meats, veggies, and fruit, are naturally gluten-free. No labels to read. Just plain wholesome food. Not only will you become more healthy by getting gluten out of your diet, but you will be eating better in general and it does make a difference.

 

OK, you may also want to cut the dairy out of your diet for a few months. Not everyone with celiac has trouble with it but many do. You can substitute with almond milk and there are dairy free margerines and cheeses available too.

 

It's a good idea to avoid restaurants at first. Even if they have a gluten-free menu, they can mess things up. I have a couple that I trust, but for the most part I only eat what I cook for myself. I still socialize with friends though. Of we are meeting at a restaurant, I eat first and just get a beverage. We still have fun.

 

Now- a warning about bread. Do NOT try Ener-G bread! It is vile and nasty! Instead, when you're ready for gluten-free bread, get some Udi's Whole Grain (similar in taste and texture to french bread) or Canyon Bakehouse 7-grain (similar to those multi-grain breads in the grocery store that have all those nutty bits in them). If you can't find them, Schar multi-grain isn't too bad either. If you can't find them in stores, you can get them online.

 

Wow. I've just typed a book here and I know it's a lot to take in, but just try to keep in mind that if so many of us here can do it, you can too. Now go read that newbie thread, take notes, then come back and ask questions. When you need to rant and cry, we will be here for you. When you need encouragement, we will be here for you. And I PROMISE, even though it looks like the end of the world right now, you will someday (soon) find it easy as gluten-free pie! :lol:


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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So sorry! I've only been gluten-free for 6 months, so I know how you feel. I still have moments when I feel like that, but much less than in the beginning. It is a lifestyle change, but it's doable. Instead of feeling deprived, just hang on to the hope of how much better you'll feel! I'm 35, and I wish I had found out sooner that gluten was what was wrong with me. So many symptoms that I didn't even associate with gluten have gone away- GI issues, migraines, aches and pains, sleep issues; although, I am still recovering in alot of these areas, too. You're doing something that will be so beneficial for you in the long run- that's what you have to remember!

There is a big adjustment at first and a huge learning curve. Read as much as you can about the disease, gluten-free eating and recipes, products, hidden gluten, other intolerances, etc. The first weeks weeks are the worst because you don't know what to eat and are scared to eat anything (I lived on rice chex, lunch meat and cheese for about a week), but it gets better! You'll find new foods that you love and become a pro at reading labels before you know it. After you de-gluten your kitchen, you'll have a safe place to prep your foods (I used to be terrible at meal planning, btw, but planning is very important when you're gluten-free). You'll find a few restaurants with gluten-free menus that you can trust. You'll learn to recognize glutening symptoms and what foods to avoid in the future. I do joke with my family that I've become an Earth Fare- frequenting foodie lol. But it's kind of fun to look for new things to try. But, you do have to always be vigilant. Sometimes I still forget to look at labels until I get home. You also have to be assertive with friends and family and at restaurants. I usually don't speak up when I go out to eat, but I've learned I have to grill people and make sure they know my food has to be gluten-free (one episode with fried oysters on my plate, just next to the food I ate taught me that).

I hope your friends and family will be supportive; they also need to be educated about this. Having a support system is so important so that they understand your needs. 

Don't feel like this is going to ruin your life. Yes, there are adjustments. Yes, there are times when it's hard. But, you can still have a completely normal life. It just involves a little education, effort, and planning. You can still go out with friends and enjoy a social life. And just think, now you'll feel better while doing it!

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What I've noticed is that as time goes by, I forget what things taste like, and I no longer want it.  My husband was adamant that we have a gluten free kitchen because he was so worried that he might make me sick.  When we go to coffee shops, he still gets his cinnamon roll, and it doesn't bother me at all.  

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you could look at it like this..... at a friends home you don't have to help clean up after dinner !  Seriously, yes, life does revolve around food.  It just does.  And it sucks!   Friends say lets go out for dessert, or coffee, or....whatever.  And now you are odd man out.  Yup.  Not fun at all.  After a while it does get better and easier.  You really do leanr that grabbing a cup of coffee is just that....a cup of coffee and no rolls.  It's more about the social part and not about the food.   There are many pity parties to be had.,....and that's ok.  This is a grieving process of sorts as you do have to grieve for what you can't have.  One day you will wake up and feel ok about this.  You will.  In the meantime no one on this board will fault you for crying, stomping your feet or doing what you need to do!   Honestly, how thankful you will be that this was discovered at your age and not 30 years down the line.  Grab some gluten free wedding cake and celebrate life. 

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What you have described is exactly how I felt (and no doubt many others) when first diagnosed.  

 

I do think that there is a  profound sense of loss, knowing that you will never be able to lead the life that you once had, and so it is a natural and normal response.  But you have to remember at this stage you have no idea that in a few months time  you will look and feel fabulous, so much better!!! and you should also feel less disheartened too, it really is a process, your on a learning curve, and I can promise you its really not that difficult after a while, the biggest issue  I have found for me is accidents (when i have inadvertently eaten something with Gluten in), but other than that I can honestly say that there are worst things.


Diagnosed Ulcerative Colitis Feb 2014 (in remission)

Diagnosed Lichen Schlerosus May 2014

Diagnosed GERD Aug 2014  

Gluten free from Sept 2014

Dairy free from Dec 2014

Sulfite free from Sept 2015

 

 

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Congratulations on finding out what was wrong early! I'm a young person as well. I'm 32 and have been gluten free since I was 27--so 5 years now. What is awesome is because I discovered early on that gluten was a problem for me, I'm enjoying good health with a strict gluten free diet.

 

Many people who have a delayed diagnosis develop some permanent health conditions or even additional auto immune disorders.

 

I know that it's hard to process at first--just work one step at a time easing into things and getting support. This forum is great place for support and has been a big help to me!


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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Not sad at all. You're learning one way how the industrial agriculture system hurts people, and now you are ready to learn the rest of the story. Priceless. Your revenge will be to have good health the rest of your life.

 

We are here to be supportive of our members, especially the newest ones who are struggling after a diagnosis.  Please don't fear monger when this lovely lady already has enough to deal with.


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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Butterflygirl, welcome to the forum!

 

When first diagnosed, the adjustment period can be really hard.  But soon enough, with all the great advice some of our members have given you above, you will have the tools to re-adjust and get to a new normal.  You do still have your whole life ahead of you -one that will now be intact and in good health because this disease was caught sooner than later.  I ate like you pre-diagnosis, like a box of mac n cheese would not be an odd lunch for me.  I was all about gluten, lol.  Sadly, with Celiac being a genetic disease, there is nothing you can do to prevent it, but as patients with the diagnosis, we are extremely lucky to have the knowledge of a gluten-free diet that keeps the disease at bay.  Since I was diagnosed I have paid more attention to nutrition overall, what I am shoving down my gullet, etc. I have become a wonderful cook- over time, when I want something, I just make it myself gluten-free.  So much so that I have ruined myself for restaurants because I cook better at home.  It takes some time to adjust, but you will surely reap the benefits sooner than you know it.  

 

In addition to all of the above, something that helped me tremendously with grocery shopping when I was first diagnosed was one of the grocery shopping guides out there.  This is the one I use and still buy for when I travel.  I also have their dining cards which help when dining out at a new place.  The guides are that- a guide only- since product information can change over time.  But if you have no idea what brand of beans to look at first, it can be a great starting help.  Lastly, remember the adage to still read "Every label, every time."  Things change, labels are similar colors (dropping a hint to annies mac n cheese people here, lol), and you do have to take responsibility for everything that goes into your mouth.  But it becomes more natural with time.  Also, now is a great time to be diagnosed, lots of good products out there and the FDA just put out new labeling standards to help keep those manufacturers in line a little better.

 

We are here to help you learn the ropes, and answer any questions you may have.  Feel free to use the search function on the forum for specific items, just keep in mind this place has been around for 10 years and info on specific products can change so look at the posting date.


I am my husband's "Silly Yak Girl" :)

I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

Celiac.com - Celiac Disease Board Moderator

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I was diagnosed at about the same age, and I had 20 years of great health! (I am now dealing with some issues that may or may not be celiac-related). After years of being sickly, I felt it was a whole new lease on life. Moreover, while all my friends were bemoaning getting older, I felt like I was just feeling better all the time. My 30's and 40's were much healthier and happier than my teens and 20's. And I learned earlier than most of my friends how to be healthy (eating well pretty much goes along with being gluten-free). So there are definitely good times ahead! Still, I do understand that it can be challenging, so good luck and take good care of yourself. 

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I can't thank you all enough for your outpouring of support on this matter. I have carefully read each and every one of your replies and I have no doubt that I will be able to make it through this lifestyle change and come out on the other side a different person. While it's going to have its challenges (as I'm already experiencing) it will ultimately better me inside and out. For too long I've felt the pain from eating anything I wanted but didn't know what to pin the problem on. Of all the things I love the most about eating, cooking, going out to restaurants, anything containing gluten was always #1. Without realizing that I was always drawn to it, it has harmed me in the worst way and now I have to figure out- like you all said, how to live without it. 

I do have a lot of support, my aunt is gluten sensitive and my mom and dad became Paleo to get his blood pressure and cholesterol under control. I guess it is genetic and I was the next in line to be affected with this awful disease. Since changing their eating style to a gluten free diet, and (my mom and dad now only eat grass fed, free range, and all the other extreme choices), they have collectively lost over 75lbs together without that being their original goal and have become the person they always wanted to be. I know that this will be me in a few short months and with the rate I'm exercising, I'll have no choice but to shed the pounds. That's something I always wondered. Living with celiac, is it easy to gain weight? Could that be why I'm overweight? Does my body have trouble losing weight without me killing myself at the gym? I'm a good 40 lbs over what I'd love to be- do you all think this lifestyle change will help me reach that goal quicker?

Again, I am just now adjusting to this mentality and I know I have a long road ahead of me. I'm looking forward to talking with you all more!

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All I can say is, it gets so much easier and you feel so much better that it just becomes second nature.  Just two years ago, I could have written a similar post (though admittedly, I am *ahem* a bit older than 28), but I can't imagine ever going back to gluten now.  It's just not worth it.

 

And I won't sugar coat it - about once every three months, I have a pity party when I can't have something I want, or regret not being able to spontaneously eat something that someone brings in to work, or have to explain to yet another waiter who rolls his eyes that "I'm not doing this for lifestyle, it's medically necessary", etc.   But then I move on.

 

Good luck, read a lot, and come here for support!  

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When I first came on this board someone told me that one day it would all seem like second nature to me.  I read that little piece of advice, thought 'yea right lady" and had another pity party.  One day I woke up and realized that it really was all second nature.  I can throw together a fast take-on-the road lunch with no stress.  We took a week long road trip and I didn't stress or bat an eye as to how to manage food.  It all came naturally.  I am almost 5 years into this and it's like it's always been that way.   

 

Get your paleo mom to share with you.,  That is an awesome (and easy) way to go!

 

And to who ever it was that shared that little piece of advice.......Sorry I stuck my tongue out at you message and called you a rude name.,   You were right! :D

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I really don't think too hard on it anymore either. It just "is" now.  I do feel a bit sad when I see people so upset about it though. I remember being so upset.  Over time, I really have learned that anything a person can make with gluten, can be made without. It is not the end, it is just a change. I do a form of paleo called primal. Only because my body forcefully ejects grains, including corn (and anything made from it's syrup.  I CAN digest dairy. I am very thankful for that as most human beings actually cannot.  I think joining a paleo community may be a great help to you.  Going through it with a group of people, both here and there will hopefully relieve a bit of the stress. It is hard now but this too shall pass. *hugs*

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Living with celiac, is it easy to gain weight? Could that be why I'm overweight? Does my body have trouble losing weight without me killing myself at the gym? I'm a good 40 lbs over what I'd love to be- do you all think this lifestyle change will help me reach that goal quicker?

Again, I am just now adjusting to this mentality and I know I have a long road ahead of me. I'm looking forward to talking with you all more!

The inflammation of active autoimmune diseases (like untreated celiac disease or thyroiditis) can cause weight gain. I lost about 10-15 pounds when I first went gluten-free and I was not eating well - lots of gluten-free treats to make myself feel like I wasn't missing out. Lol. Some celiacs are underweight, it seems especially those with diarrhea, but some like me, never ever had that problem nor issues with malabsorption .

Hang in there. The first few weeks are hard, and it takes a few months to create new habits and find the brands you trust and like. You'll get there. I bet that by time summer rolls around, you'll have settled right in to this diet.

BTW, is you fiancé willing to eat gluten-free at home? Life is much easier and safer for celiacs living in a gluten-free house.

Best wishes.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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We are here to be supportive of our members, especially the newest ones who are struggling after a diagnosis.  Please don't fear monger when this lovely lady already has enough to deal with.

Come on, Laura......that post was one of the better ones here and there were some great posts! Keeping in mind that the OP is newly diagnosed still didn't keep me from being ever so slightly annoyed about the attitude that we don't live a normal life and we can't eat the foods we love. So very untrue and as time goes on, I am positive that they will realize we do live normal lives, only healthier than the vast majority of people who can free feed on garbage that is ruining their health. They will also come to realize that being diagnosed early is a blessing because many of us went way longer in life and now I am the recipient of 4 autoimmune diseases that affect my daily comfort. I wish I had been diagnosed at 28 and maybe I wouldn't have all the collateral damage. These are the things people come to realize once they have recovered and thinking correctly again.

To the OP, give it time. Throw yourself into the diet head first and when you have cravings, let us know and we can help you make the best gluten-free versions of them ever! As each year passes it becomes easier and easier and soon you will not remember your gluten filled, sick life. It will also make you healthy enough to have kids. You are not going to believe how good you can feel down the road!!!!! You'll be happy again, I promise you.

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That's good to know that I should start seeing a weight change. I exercise regularly now and have taken my gluten intake from every meal 3 meals a day and snacks with gluten being the main event, to maybe a taste of gluten throughout the entire day. I'm talking like, 1 saltine cracker. I went to the gym recently and came home feeling nauseous and feeling like I was going to be sick - severely nauseated. I found out this could be because I didn't eat enough before I ran 4 miles or because this was a new lifestyle change and my gluten intake is basically non existent now. 

I heard that it's normal to feel really sick at times. I simply don't have much of an appetite anymore and when I do eat I get full fast. I can't understand my body right now. I'm so confused about everything. Hopefully it all works out overtime. 

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 and have taken my gluten intake from every meal 3 meals a day and snacks with gluten being the main event, to maybe a taste of gluten throughout the entire day. I'm talking like, 1 saltine cracker.

I'm sure everyone else will weigh in here - but you cannot do this.  It has to be cold turkey or you will never get better and you will continue doing serious damage to your system that can have long term (and huge) implications.  You need to be 100% off - it's like being pregnant:  You are or you aren't.

 

And I can tell you that I last night I found some paperwork at home that reminded me that I've just hit the two year anniversary of my diagnosis - It feels like so much longer, that's how used to this I am and how much better I feel.  I came here, mourned a bit, got support and found my foods, my 'talk' for restaurants and a new way of living.  You will, too.

 

Remember - 100% gluten free.  No saltines.

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 have taken my gluten intake from every meal 3 meals a day and snacks with gluten being the main event, to maybe a taste of gluten throughout the entire day. I'm talking like, 1 saltine cracker.

 

 

If you were diagnosed with Celiac disease - you should not have ANY gluten!  You will never get better consuming a little gluten. 

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

 

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment


 

 

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Hi, It is true that once you have been diagnosed, or know that you are Gluten intolerant, that you should not take anything with Gluten...I do understand how difficult it is at first, and of course it will take you a while to get in your stride.
 
Here is what happened to me quite recently...
 
Last year I discovered that I had problems with dairy products, and so I went dairy free, which in my mind meant not eating ice-cream, cheese and milk, and so that's exactly what I did. At the time I didn't really take into account the dairy products in so many other things, such as sauces, confectionery etc, and also because I was so focused on being careful with regard to avoiding Gluten, I think I convinced myself that I would be fine with a tiny bit of dairy product every now and again, and didn't think it would hurt. :unsure:
 
December arrived, and I started taking some new Meds, and very quickly I knew that there was something wrong with the tablets I was taking! I started to feel dreadful, these pills were produced at a local pharmacy for me, which was closed for the Christmas holidays, and so I had to continue taking these pills until January 5th when they returned to work, and when I contacted them to tell them I was having a bad reaction to the pills they had produced, I discovered that they contained lactose!! this floored me, I couldn't believe it! I had been taking 4 pills a day and they were making me feel quite ill, so you see even a tiny amount of what you should not be taking, can make you ill. :)

Diagnosed Ulcerative Colitis Feb 2014 (in remission)

Diagnosed Lichen Schlerosus May 2014

Diagnosed GERD Aug 2014  

Gluten free from Sept 2014

Dairy free from Dec 2014

Sulfite free from Sept 2015

 

 

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Everyone here has most of it covered! Just wanted to say hi!

 

I found out when I was 25, so I get finding out while you are young, but consider your self lucky that you don't have to spend YEARS of your life sick, and miserable! Trust me, It's worth it.

 

There are ton's of gluten-free options out there (more so than ever!)


~Brittany

Mom to Harper (born June 2014), Wife, Marathoner, and Sober since 6/3/2012.

 

Dx'ed 1/23/2012

Dx'ed with Hypothyroid & Hashimoto's 2/3/15

Suspect Reynaud's/Sjogrens

Completed a Whole100 May-August 2015. Felt great, and lost 7 lbs!

 

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I was just came across this thread and was hoping butterflygirl would tell us how she is doing now. 

 

I hope that you are coming along nicely. I too love to bake and was wondering if you have learned to bake gluten-free yet. How was the wedding?

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I was diagnosed April 30, 2015 so I understand how you are feeling.  I am not as young as you are but I am approaching a milestone birthday this year so I was saddened that about this diagnosis because I have 3 trips planned for my BIG 50!  Enough of that..... to know you are not alone, I did have a meltdown in a grocery store but not too long after that day I put on my big girl britches and started studying and researching and it has helped me.  Also, I met with the nutritionist which helped a whole lot as well.  Best of Luck to you.

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