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Totally Bummed Intro.


Squirrelflight

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Squirrelflight Rookie

I hate this diet. I hate turning down food I like. I hate reading stupid labels. I hate finding out an hour after dinner that my gluten free meal was not gluten free. I hate being gluten free. I'm not new to it. I just havent been doing it.

8 years ago I found that cutting out grains cured the horrid rash I had that was so blistery and painful that I could not wear pants. Getting more specific showed it to be a reaction to barley. So I cut out barley only. After about 2 years I could tolerate barley in small amounts again. Eventually I was eating whatever I wanted.

5 years ago I was dx with chronic fatigue syndrome, and was close to a fibromyalgia dx. Was on antidepressants, ... had migraines, eczema, anxiety, irritable, joint pain, etc, etc, and nothing was helping. A cute little hotshot intern suspected celiac based on a little note about the barley allergy and put me on a gluten free diet. All of my many nondiscript vague symtoms disappeared.

Cut back on gluten and just tried to not eat so much that I was crazy and miserable! LOL Coined a lovely phrase.. 'gluten worthy' for decadent treats like brownies or philly steak and cheese which I considered worth the itching, etc. Eventually I was eating whatever I wanted. Seeing a pattern??

3 months ago I started having stomach issues out of the blue. D all the time and a lot of gas. The eczema was in full swing again. I cut out barley which helped with the skin issues. Wheat causes less itching for me than barley. 2 weeks ago I developed a sudden onset of edema. Labs came back that I am very protein deficient and anemic. :(

Since my diet is high in protein malabsorption seems to be the issue. Gluten free and rediculous amounts of protein and the edema improved. I'm waiting for lab results looking for other possible deficiencies. I will not bother with a biopsy bc it is invasive and well I already know I have to be gluten free to not be sick so why go through a biopsy.

My husband and daughter are both type 1 diabetics. She is also a very picky vegetarian. I'm also a picky eater and now gluten free. I really have to stick it out this time. I have some questions and issues but will post that seperately. This is just my gloomy 'hey, I'm here.' post. I'm enjoy the forum so far. :D


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tmbarke Apprentice

I hate this diet. I hate turning down food I like. I hate reading stupid labels. I hate finding out an hour after dinner that my gluten free meal was not gluten free. I hate being gluten free. I'm not new to it. I just havent been doing it.

8 years ago I found that cutting out grains cured the horrid rash I had that was so blistery and painful that I could not wear pants. Getting more specific showed it to be a reaction to barley. So I cut out barley only. After about 2 years I could tolerate barley in small amounts again. Eventually I was eating whatever I wanted.

5 years ago I was dx with chronic fatigue syndrome, and was close to a fibromyalgia dx. Was on antidepressants, ... had migraines, eczema, anxiety, irritable, joint pain, etc, etc, and nothing was helping. A cute little hotshot intern suspected celiac based on a little note about the barley allergy and put me on a gluten free diet. All of my many nondiscript vague symtoms disappeared.

Cut back on gluten and just tried to not eat so much that I was crazy and miserable! LOL Coined a lovely phrase.. 'gluten worthy' for decadent treats like brownies or philly steak and cheese which I considered worth the itching, etc. Eventually I was eating whatever I wanted. Seeing a pattern??

3 months ago I started having stomach issues out of the blue. D all the time and a lot of gas. The eczema was in full swing again. I cut out barley which helped with the skin issues. Wheat causes less itching for me than barley. 2 weeks ago I developed a sudden onset of edema. Labs came back that I am very protein deficient and anemic. :(

Since my diet is high in protein malabsorption seems to be the issue. Gluten free and rediculous amounts of protein and the edema improved. I'm waiting for lab results looking for other possible deficiencies. I will not bother with a biopsy bc it is invasive and well I already know I have to be gluten free to not be sick so why go through a biopsy.

My husband and daughter are both type 1 diabetics. She is also a very picky vegetarian. I'm also a picky eater and now gluten free. I really have to stick it out this time. I have some questions and issues but will post that seperately. This is just my gloomy 'hey, I'm here.' post. I'm enjoy the forum so far. :D

Welcome to the support forum.

You are surely a false positive about this....it's not easy but when it comes to getting rid of pain and itching and irritable feelings (not to mention your health issues)......but you've got your answer......it's just putting all the pieces together to make it all fit.

I had my first hamburger this week with a gluten-free bun....and I was in heaven.

I eat pot roast, taco salad, spaghetti and meatballs, chili....just to name a few.

I'm sure you'll need to be on a healing part of the spectrum first....whole foods.

I love a grilled chicken caesar with yogurt dressing and that is a lot of whole foods right there.

It's taking what you love and making it gluten free so that it's not so hard to stick with it.

But the pain is enough to want to stay healthy alone....the altering of not gluten-free to gluten-free makes it easier.

There are brands that are discussed on the forum 'products and shopping' so check there to find some good alternatives.

Stay strong and you'll feel tons better in time again - enough to want to stick to it.

Welcome and don't be so hard on yourself - hugs

AmyT Newbie

Hang in there Squirrelflight! You can do it, you will feel so much better!

What I did that may help you is get every single thing that has gluten in it out of the house. Go the the grocery store in town and they might have a list of all their gluten-free foods. Then shop for everything you like! There is soooo much good food, and bad(!) like cookies, potato chips, etc! Even name brands that you already probably eat! Find a support group. I just found one and they are a wealth of info and they love to eat, it's all they talk about! Good food too! I have found, being new to gluten-free, is just a little change in perspective, all it takes and removing temptation by having things in the house or going out to eat doesn't help.

I have had to take a couple of days off work just to get my life reorganized to this new lifestyle. You need to focus on you and your family and nothing but that really matters you will be much healthier and your attitude will improve so much! (I find that when the gluten is talking it is often very negative!)

Good luck and stay in touch.

Squirrelflight Rookie

Thanks for the encouragement! There is no way I can take the house gluten free. So I'm looking for ways to minimize the cross contamination. I seem to be very sensitive and have very few days that I feel 'gluten free'.

It is easier since I've gotten paid and was able to get groceries instead of just rummaging through what we had.. LOL I'm taking a more whole foods approach. I plan to cook dinner every night and seperate the leftovers into 2 dishes for me and dh to have for lunch the next day. I am a good cook. :)

All in all though.. feeling much more encouraged. Found some good recipes on allrecipes.com and had a great dinner last night.

AmyT Newbie

Sound like you are doing well! It has been a challenge right now here too, after 4 weeks gluten-free I am feeling really great but at times I get a little bummed out as well. Like when I ran into a good friend at the supermarket and she had all the once delectable treats etc in her cart like Triscuits and Wheat Thins, sniff, sniff, and asked me how's the gluten free deal going, ugh! Anyway, I checked out at a lane next to hers, had just as much yummy stuff and my bill was less than hers!

We have been having a lot of soups, chili, beans etc. They go a long way, I definitely make enough to have for another meal. I just make my family have fruit or veggies instead of seconds of the main course. It helps them get a variety of foods. I call it food budgeting! That way we don't eat all the good stuff in one day. My kids are amazing and they are totally up for this gluten-free stuff! It's amazing! I know deep down inside they feel better too so it makes there decisions easier and I know they know that the foods were were eating before made them feel icky and that made them sooo picky before. Now they are not!

Keep up the good work and keep check in for support!

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    • sillyac58
      Thanks so much Scott. I would be incredibly grateful to the gluten gods if eliminating oats was the magic cure. In the meantime, it's nice to have moral support! 
    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      alright thank your help! 🤍
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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