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Littllemel

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Littllemel Apprentice

Sorry this post is such a downer but I have to get this stuff off my chest...

I am on day 5 of my new gluten free life and I won't lie, I hate it. This all started a few years ago with heartburn in which Nexium took care of up until 3 months ago when it just stopped working. The Doctors just kept piling on more meds like Zantac, Prilosec and Sucralfate which would all make it worse. I finally had an Endoscopy last week thinking my fate would be surgery but it turned out to be my small intestine showing lots of wear and tear which the doctor described to me as an indication of something like Celiac and that he would send my biopsies to the lab for confirmation. I am still waiting for the results but after reading this forum for the past week, I am almost positive this is what I have. I seem to have all the signs and symptoms like gas, bloating, fatigue, dry mouth, constipation, allergies/asthma, depression etc. I still have major reflux so I am currently on a low acid, gluten/dairy free liquid diet. It does seem to help a little but I still have major reflux. I am trying to be positive but I can't tell you how miserable this makes me.

Before this I wasn't much of a cook or a good eater, I was the lazy type that bought lots of processed pre-packaged foods and ate out at restaurants all the time. Those were the good ole days for me. I guess I am still in my anger/denial phase and I just need to get over it but it's a battle for me. I am practically starving on this liquid diet because if I get too full I have to stop or I'll get bad reflux, coughing and swallowing issues. And I can't eat after 4pm or I am up all night with reflux. I already sleep sitting up so that makes getting rest difficult too.

I am having a hard time finding liquids to eat. I mostly drink veggie smoothies cut with juice and some soy/almond/peanut mixtures and some fruit smoothies with soy. I've lost my appetite too, I guess that doesn't help. I've lost a ton of weight which isn't a good thing since I was pretty skinny already. I was going to run a 1/2 marathon in 2 weeks but because the reflux has affected my lungs and because of the weight loss I think I'm going to have to back out.

So after all of my complaining, I guess I am searching for inspiration. I would like to hear some positive stories that this will all be ok and everything will be fine again someday. That I might be able to go to restaurants again someday without worrying about how my food was prepared or having to order salads with nothing on them. Just cheer me up please.


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love2travel Mentor

Sorry this post is such a downer but I have to get this stuff off my chest...

I am on day 5 of my new gluten free life and I won't lie, I hate it. This all started a few years ago with heartburn in which Nexium took care of up until 3 months ago when it just stopped working. The Doctors just kept piling on more meds like Zantac, Prilosec and Sucralfate which would all make it worse. I finally had an Endoscopy last week thinking my fate would be surgery but it turned out to be my small intestine showing lots of wear and tear which the doctor described to me as an indication of something like Celiac and that he would send my biopsies to the lab for confirmation. I am still waiting for the results but after reading this forum for the past week, I am almost positive this is what I have. I seem to have all the signs and symptoms like gas, bloating, fatigue, dry mouth, constipation, allergies/asthma, depression etc. I still have major reflux so I am currently on a low acid, gluten/dairy free liquid diet. It does seem to help a little but I still have major reflux. I am trying to be positive but I can't tell you how miserable this makes me.

Before this I wasn't much of a cook or a good eater, I was the lazy type that bought lots of processed pre-packaged foods and ate out at restaurants all the time. Those were the good ole days for me. I guess I am still in my anger/denial phase and I just need to get over it but it's a battle for me. I am practically starving on this liquid diet because if I get too full I have to stop or I'll get bad reflux, coughing and swallowing issues. And I can't eat after 4pm or I am up all night with reflux. I already sleep sitting up so that makes getting rest difficult too.

I am having a hard time finding liquids to eat. I mostly drink veggie smoothies cut with juice and some soy/almond/peanut mixtures and some fruit smoothies with soy. I've lost my appetite too, I guess that doesn't help. I've lost a ton of weight which isn't a good thing since I was pretty skinny already. I was going to run a 1/2 marathon in 2 weeks but because the reflux has affected my lungs and because of the weight loss I think I'm going to have to back out.

So after all of my complaining, I guess I am searching for inspiration. I would like to hear some positive stories that this will all be ok and everything will be fine again someday. That I might be able to go to restaurants again someday without worrying about how my food was prepared or having to order salads with nothing on them. Just cheer me up please.

Guess what? Chances are good that the reflux will discontinue once you have been off gluten for awhile. All sorts of wondrous things can happen once you are gluten free. For some it takes a few weeks to notice, some a few months, and a few longer than that.

The first while is very difficult. I remember!! Once I had it under control and it did not control me things improved vastly. Of course everything I did revolved around celiac at first. It had to until I became comfortable with it.

I've never liked fast food restaurants and now I do not really have much faith in them. When I eat out it is at refined restaurants that have much of their menu gluten free, anyway. What I do before eating out is call the restaurant and speak with the chef. No chef? I don't eat there. I ask how things are prepared and about the ingredients. Many chefs are very clear on gluten-free eating, thankfully. You CAN and you WILL be able to go out. I read on here often that people go to fast food places without any issues at all - you may be one of them.

So you do not like to cook. Well, my life revolves around cooking so maybe I can help a little bit. Most people would recommend you not eating commercial gluten-free snacks as they are loaded with fats and sugars to make them more palatable. Not only that but whole foods are vastly better for you, especially while you heal.

Can you try eating solids? If so, why not go to the grocery store and try something new each week? It does not have to be fancy or expensive. Why not reach for that cheap sweet potato that is chock full of good things? It can become oven fries or a puree or soup. Or how about those lovely leeks? They are delicious in soups, roasted with cheese, in stews, etc. You can very simply flavour rice by adding in some lemon juice to the water or a few bay leaves. Stir frys are so easy and you can get gluten-free soy sauce, etc.

I thought celiac was a death sentence to me. Sound extreme? Yes, it was, but my life is food. So I forced myself to stop focusing on those things I could no longer have but grew more and more excited about all the cool flours and stuff. Quinoa, lentils and beans are fantastic. For recipe ideas head to that section on this forum. People also give ideas of what they have for breakfast and lunch. Heck - we often have dinner for breakfast! Why not?

If you like eggs, try a yummy omelette or frittata or even poach them. Deviled eggs are delicious.

So, cheer up. Once you get those results back let us know and come back with any questions or just to vent. Remember that we all have been there and we understand more than anyone. :D You WILL get your life back but it will be better than ever!

Marilyn R Community Regular

Welcome Littlemel! Sending you cyber hugs (((( ))))

I don't know if it helps or not, but what you're going through is normal. You said it dead on, it's a battle at first. (And don't worry about complaining, this is the place to do it.) You'll get better advice here than in most Dr's office, in mho.

It get's better. :) You'll be able to sleep in a real bed for 7-8 hours a night. I went from total insomnia to getting a good night's rest.

There are really simple, very good things to eat without having to read ingredients on labels that don't take much effort to cook or shop for. If you tell us what you like to eat, you'll get some good, recommendations. Do you avoid meat?

There are some delicious foods that are easier to prepare and clean up after than smoothies and don't take all that much effort that will be tasty and stimulate your appetitie.

I don't want to horrrify you, but some of us find soy intolerable. (Sorry.)

But I promise if you come up with a list of foods you like, you'll be led out of the jungle.

butterfl8 Rookie

I was miserable by the time I was diagnosed. Like you, I had long-term issues that were under control and didn't bother me, then it all went to heck. Starting out on the diet is horrid, and I'm thankful I don't have to go through that again. What kept me going was knowing that in order to feel better, all I had to do was eat better! No worries about something that would never get better, no matter what, no prolonged (potentially unpleasant) treatments, just had to start cooking. So everytime I felt miserable, depressed, and upset about life, I remembered that healing is a process, and all I had to do was eat! So keep in mind that eating (properly) is your path towards sleeping laying down, no more gas, no more fatigue, and one day probably even not worrying about low acid! You can and will feel better! And lots of people here to help you with cooking questions.

In a while, you will look back and be astonished at how bad you felt, and how much better you are.

Littllemel Apprentice

I already feel better today reading your posts. Yesterday was one of those days it was really hard for me. It is definitely helpful to keep in touch with other people that have already gone through this and to know that there is hope. I expect I will be asking lots of questions about my new lifestyle in the months and days ahead. I am still on a liquid diet because solid foods seem to back up in my stomach and not digest which gives me even more heartburn.

BrianV Newbie

I already feel better today reading your posts. Yesterday was one of those days it was really hard for me. It is definitely helpful to keep in touch with other people that have already gone through this and to know that there is hope. I expect I will be asking lots of questions about my new lifestyle in the months and days ahead. I am still on a liquid diet because solid foods seem to back up in my stomach and not digest which gives me even more heartburn.

I'm newly diagnosed as well, I've been gluten free for two weeks now and I'm starting to feel a little better. It's a big change, but it gets better. I've been reading the forums here a bit, and decided to finally register today. This site has been a great resource!

xjrosie Apprentice

I'm in the same boat. I can't be officially diagnosed because of lack of insurance and funds, but two of my three children were positively diagnosed. After being educated on the symptoms, I realized that's been my problem most of my life.

I do indeed hate the diet too, but to support my children, our house is 100% gluten free. It's hard, but doable. But for the first time in years, I have been able to eat full meals without stopping multiple times from stomach pains. And, I can eat pasta! I haven't been able to eat pasta since I had gastric bypass in 2004, and now I can!

My sleep patterns are becoming normal, and I'm not drained of energy. My anemia is going away. I hate the diet, but it's changing my life in so many ways that I WANT to stick with it.

I don't have any better advice than the others who are here, because that's who I got my information from. But if you have any questions, check this place out first. And know that when you come here, you have something in common with all of us and no matter how down you feel, someone can sympathize. It's a PITA to have this disease, but this place has the most supportive people I've ever talked to (or read comments from).


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sharilee Rookie

I am newly diagnosed myself, I am nearing the end of my second week being gluten free. I am starting to feel better and noticing changes. It is very hard a first but it is starting to get easier with each passing day.

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