Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Totally Bummed Intro.


Squirrelflight

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,707
    • Most Online (within 30 mins)
      7,748

    EDavidC
    Newest Member
    EDavidC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • badastronaut
      So after  a long time in which I got my zinc and folic acid levels back on track I will now start with taking Thiamine to see if that does anything. According to my blood levels I'm not low on Thiamine but, if I understand correctly, blood works are not the best way to find out if there is a Thiamine shortage. How much Thiamine should I take to start with? 100 mg? 
    • Scott Adams
      I'm in the "never reveal your plans to the enemy" camp on this one--it's none of their business if you're looking for another job, so I would leave that out of any conversation. Also, retaliation can be common with some employers, especially if you bring up the ADA and claim a disability because of celiac disease. I was a corporate paralegal for 5 years and handled employment claims against some major USA companies, and I've seen it all--even by huge companies that contract with the government and should know better. I say keep your cards close to your vest, wear an N95 mask if you handle wheat flour, and quietly look for another job if you feel you can't continue there.  Oh, and when I say "enemy," I mean that unscrupulous managers may quickly become your enemy, even if the law is on your side, and they could find trivial reasons to give you the 3 quick warnings that may be necessary to fire you. Very few lawyers would take such a case on a contingency basis, so unless you have a stockpile of money, you'd have no recourse. 
    • trents
      @ohmichael doesn't have an official diagnosis of celiac disease yet. That would need to happen if he were to pursue a disability claim.
    • Scott Adams
      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. According to this article your two positive DGP-IgA tests mean:  
    • nanny marley
      This is so very interesting I love all this information, knowledge is so very important for us to help ourselves heal, I have been so wrapped up with my dogs nutrition after vets told me she needed a operation, which turns out I can help with this for her  myself also , I may have been missing the tap on the shoulder to say integration into your own health is needed here too , although I have been aware I must admit myself has been on the back burner at times , I also have a granddaughter with nut allergy I researched for that , this is now screaming at me to turn inward to myself also , and deal with my invisible struggles I also am carrying, thankyou for all the information keep it coming , my ears and eyes are fully open 🙏
×
×
  • Create New...