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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      33

      What should I do with these test results?

    2. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe

    3. - Itsabit replied to Itsabit's topic in Dermatitis Herpetiformis
      10

      SkinSafe


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,326
    • Most Online (within 30 mins)
      7,748

    Anichan
    Newest Member
    Anichan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
    • Itsabit
    • trents
      From the article you linked: "Currently, there are no recommended methods to test for non-celiac gluten sensitivity." "No recommended methods" is the key phrase here. Just on the anecdotal evidence of reading many posts on this forum, I think we sometimes see some elevated igg test scores with NCGS. They seem to be mildly elevated in these cases, not high high.
    • Itsabit
      Thank you for your reply. I’m beginning to think of iodine as another culprit in this, as much as I fear it. I will say my rash is extreme and diffuse - it’s everywhere! I first had it on both sides of my neck in the summer of 2023. My PCP and dermatologist at the time, thought it was a reaction to jewelry I was wearing, even though I had been wearing the same necklaces for literally years with no reaction. The dermatologist at the time repeated over and over again that “allergies are acquired.” Which I knew. But I was not reacting to any other jewelry I was wearing. So it didn’t make any sense to me that it would only be from my necklaces. Anyway, it abated on it’s own. Only to come back with a vengeance months later - and I had not worn any necklaces at all. And the rash involved more area. I was put on Prednisone (oral steroid) taper and it worked well, and the itch and eventually the rash went away. Another trip to a different dermatologist at that time, prior to starting the Prednisone, told me to change all of my hygiene products like soap and shampoo, and to slather on Vaseline. None of which worked, hence the Prednisone. Needless to say, the itch and subsequent rash returned - and now spread everywhere, not just the hollows on both sides of my neck. It’s there, on my upper chest and left breast, both upper arms front and back, and elbows, my entire back, down both of my hips and buttocks and the front of my right thigh. Now the back of that right thigh is starting to itch as well. Also my lower right forearm and middle knuckle on my left hand since going gluten free. I’m just itching everywhere all the time. It keeps me awake, or wakes me up when I do fall asleep. I’m trying my best not to scratch, but it’s nearly impossible! I’ve been using a dry washcloth to rub instead of scratching. And I have used cool wet washcloths which help, but only lasts for a few minutes before starting up again. I’m pretty much at my wit’s end. Just waiting for something to indicate what’s really going on so I can do SOMETHING to stop it! 
    • Itsabit
      Reply to Russ H, Thank you for your input. As a nurse for 46 years I was aware of much of this. However, as a new member to dermatitis herpetiformis, I have been reading and researching everything I can about it in order to educate and help myself. I was hoping that the oral Dapsone would help to alleviate the itching. I knew the rash would take longer to abate. Instead of relief from the Dapsone, I had adverse reactions so had to stop it. After 2 months on it, if hadn’t helped with the itching at all, and I understand it usually helps in the first few days if it’s going to. My itch and rash actually got worse on the Dapsone and with going gluten free - which lead me to question whether I was getting glutined from other products I am using. It’s like a huge puzzle trying to put all these pieces together to somehow make it fit and make sense. Right now, myself and my doctor are perplexed. 
×
×
  • Create New...