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Just Diagnosed
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12 posts in this topic

Hello everyone!

For the past two years I've been dealing with the symptoms of chronic diarrhea, stomach pains, and occasional vomiting. I did not have a family doctor, because I did not have medical insurance. In the past year I've finally broken down and have been to the ER 5 times after experiencing pain to a point I could no longer tolerate. Each time I was sent home with the "flu". At the beginning of the summer I experienced pain unlike any other time and thought I was literally dying, only to be told once again that I had the flu. The next day I knew that there was something going on, it was serious, and I needed to do something about it. Not long after that I quit my job, because my symptoms had taken over my life. I had even made a bed in my bathroom, because I couldn't leave it for 5 minutes without having to run back in. I made a doctors appointment at my local clinic, but the closest opening was two months away. I thought I was going to die before then, but I survived. Just this week I was diagnosed with celiac. At first, I was relieved to finally know what was going on, but then after learning what celiac means and what I'm going to have to go through has me very confused, stressed, and scared.

I've always been the type of person to just shove food in my mouth and not even think twice. Now I know that I'm going to have to be aware of everything. I thought at first, "okay, I can't have flour, wheat, and rye anymore. I can do this." But after researching and seeing how there can be things in complex words that can contain gluten, I'm freaking out and not sure if I can handle how complicated this is. I also know this is a complete life (food make over) change, and I never realized till now how much food affects our lives. This whole process is making me very depressed and stressed. I'm already dealing with anxiety and depression after losing my aunt (who raised me and was my main supporter my whole life after she took me in after my mother passed away) and I also have hypothyroidism and arthritis. It doesn't help that I'm stressed how I'm going to afford to go gluten free. After having to leave my job, my fiance is the only income coming in and we've already fallen behind on many bills and barely getting any government help. In my area where I have looked, gluten free foods are not cheap and more expensive than what we normally buy. I don't know how I'm going to afford to eat the way I need to, to take care of my health. I am not getting much support from my family, for they think this is no big deal and have been told "you'll just have to take the bread off your sandwich" and "you could afford to lose the weight from a diet", but in a rude and humorous (to them) way. I can say that I have an amazing fiance, who has already taken a stand to also go gluten free to support me and I could never be thankful enough for having someone as amazing as him.

As you can tell, I'm struggling with this. I wanted to see if anyone could relate to me and give me advice on how they have coped. Any advice will be very appreciated. I never thought I would have to deal with all this at the age of 22, but I am and I know that I need to take care of myself to be able to have a long, healthy, and happy life. Thanks to anyone that reads this and can help me in any way.

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Shay heaven,

My suggestion is to make everything from scratch. I'm also corn intolerant and this has been the only way for my wife and I to control what is in what we eat. We make up enough to eat for the next day as well. You in the right place. Everyone on this forum knows what you are experiencing and they are more than willing to pass on what they have learned.

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Welcome to the forum! Yes, it is very scary when you first get diagnosed and dont know where to start. Please believe me when I say that you get the hang of it eventually - now I can go into the fridge without thinking and just know what I can pull out. I do have a couple suggestions that others have given to me and have been helpful...

- Remember the acronym BROW-M. Those are the things we cant have - Barley, Rye, Oats, Wheat, and Malt. On every food made in the USA it will tell you under the ingredients if it has those things in it. Also, many of us cant tolerate soy, corn, and diary (especially in the beginning). My suggestion is to cut dairy out for a little while until your gut heals more (unless you can tolerate it well).

- Since you've been so sick, I wouldn't go buying and eating a lot of gluten free replacement foods like pastas, breads, cakes, cookies, etc. They may be too hard on your gut right now. Someone said it really well when they said to me, "Stick to the outside perimeter of the food store," meaning fruits, veggies, meats, chicken, cheese, nuts, etc. It will be easier on your gut without all those processed foods. Plus, the processed gluten free foods are typically higher in calories, carbs, and can make you gain weight if you're eating a significant amount of them. Plus, they are pretty expensive.

- Read the Newbie thread at the top of the page, its incredibly helpful and will let you know what appliances and items in your house will likely be culprits for cross-contamination.

- Expect that you may feel a little worse before you feel better. This seems to be normal among us and we so lovingly refer to it as "gluten withdrawal." It can last a different amount of time for everyone but it will get better and you will start to feel fantastic if you keep eating gluten free.

The good thing is that they caught it now and you've been diagnosed. That seems to be the hardest part for most people. If you keep reading the threads you will see that many people on here have been sick their entire lives and hadn't been diagnosed until well into adulthood. Now you can get yourself back on track and it WILL get better. Its so nice to hear that your fiance has been so supportive and willing to help. My fiance has been wonderful too and although he hasn't gone gluten free (I didnt make him) he rarely eats gluten anyway so its not that big of an issue. Keep asking questions and always feel free to vent if you're having a hard time! Best wishes to you!!!!

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I'm glad you got a diagnosis and I hope you are feeling better soon. I found my GI issues are now mostly sorted out after 3 months gluten-free. I'm guessing you'll see a good improvement by Halloween. :)

Buying gluten-free baked goods is expensive and I have cut back severely on that. My family of 5 is now gluten-free, and I buy 1 loaf of Udi's bread and I bag of Udi's bagels a week and that's it. We use this microwave bun recipe quite often (but use coconut flour instead of almond due to allergies) since it's fast, cheap and homemade. Bun recipe We will make pancakes from gluten-free mixes, but I substitute almost half of the mix for golden flax (for nutrition) and add whey protein powder, none of which is inexpensive.

The main dietary change for me was that I had to be more prepared. I had to make sure I have Lara bars/protein bars or a bag of trail mix with me at all times in case we end up needing to eat while out of the house. I now cook more so I have leftovers for lunch, and when I do eggs, I do a big egg bake with veggies,cheese or some meats which I can freeze and have ready to grab for a meal on the go.

Rice, quinoa, potatoes and yams are still there for starchy side dishes. Rice noodles cost about the same as regular noodles. There is a lot you can have... it's just those name brand favourites that you might have to give up like KD (cheez whiz and rice noodles is just as fast), or canned Campbells mushroom soup. Once you get the gluteny staples out of the house and replaced (like soy, worchestershire sauce, teriyaki, and somemustards and barbque sauces) it gets simpler because you have a house full of foods you can eat. :)

I can honestly say that after a couple of months, it has become relatively easy to throw together meals and lunches. The first while I was sad, and felt quite deprived, but I splurged on things like gluten-free yogurt covered pretzels, M&M's, and ice cream, and I'm now at the point where I am mostly just glad that I feel better. Hang in there. I'm sure you'll get it, especially with a supportive fiance.

Best wishes. I hope you feel well soon.

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Welcome Shay! Sorry to hear you are so stressed out, but glad you have a diagnosis that will help you get your health back! It can be overwhelming at first but take a deep breath and know you can do it! I follow the KISS mentality (Keep it simple, silly!) :) I started with the easy (and cheap)sale stuff; a big bag of rice, meats, eggs, veggies, fruits (lots of bananas!). 2 things I rely on alot are a crock pot and a rice maker. (if you don't have them already and you can wait Walmart usually has at least the crockpot on sale really cheap on black friday). In the beginning I would make a big pot of rice to keep in the fridge ready for quick meals. I ate it sometimes for breakfast (with cinnamon and sugar), at lunch with leftover meat and veggies from dinner, with cheese melted on it, etc, etc. I have an "as I need to know" policy; it keeps me from being overwhelmed! I learned what was safe for me that I couldn't live without (for me it was brownies! ;), and as I go along I add to my gluten-free knowledge base. Just take it one step at a time. Hopefully you will be feeling better soon!

Oh, read thru the other posts here! There is a lot of good advice on these boards!

Good luck!

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I can't say anything that hasn't been said already...except right now you see gluten-free as "another thing" on top of thyroid and arthritis. Soon (each of us follows our own path) you will probably view gluten-free as a saving grace.

Generally, when you are suffering from multiple ai issues going gluten-free relieves a lot of symptoms related to all of the conditions.

Gluten is just food. Took me a good 6 months to mourn it, now I am comfortable with it. The benefits of gluten-free far outweigh the inconvenience. I have my life back. I have a brain. Essentially, gluten-free is freedom (in spite of the inconvenience).

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Hi Shay,

They hit all the high points already for you. I concur, eating whole foods is the way to go, and is also cheaper than processed foods. A simpler diet is good to start with, and the fewer the number of ingredients in a meal the easier it is to troubleshoot issues. Frozen foods with 3 or fewer ingredients are generally good, and Mission brand corn tortillas or rice tortillas from Rudi's are ok for wraps.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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So glad you have an answer. There are a lot if apps that can help you. One had a bar scanner until you feel comfortable reading labels. I used scanavert. It was $2 a month and I used it for 2 months. If you ate biopsy confirmed the university of Chicago Celiac Center will send you a free gift package. It's all the gluten-free processed foods but was about $70 in free stuff. Find them online.

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Sorry for typos. I am on my phone and apparently have monster thumbs.

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If you are taking thyroid medication, make sure it is gluten free, by checking with the manufacturer, you may have to contact the pharmacy to get the number to call. Your meds may need to be adjusted in the future, after awhile on the gluten free diet.

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Thanks so much everyone.. I'm feeling a lot more confident in this and learned a lot in just a short time. I appreciate all the tips, advice, and encouragement! I'm very happy I found this site! (which by the way, I had googled "are skittles gluten free and one if the results brought me to a post someone had made on here and I was exited to have found it. Oh and I was beyond exited to fine out I could still have skittles, they are my favorite!) Thanks again and I'll keep browsing through the forums. =)

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Hi,

You may find that after you have been on a whole foods diet for a while, your interest in Skittles and things like that diminishes. At least it did for me. Whole foods taste better than processed foods. You know Skittles are coated with shellac right? Read up on shellac and see if it is something you want to eat. I use shellac in my encaustic art and it works great for that. But I don't want to eat it. Bug slime isn't very appetising to me. But to each their own as they say. Enjoy! :)

The Grossest Things in Your Food

http://en.wikipedia.org/wiki/Lac

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