Jump to content
  • 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

How Do You Keep Going When You're Not Getting Better?


FootballFanatic

Recommended Posts

FootballFanatic Contributor

First of all, I am not ready to try and eliminate soy yet because I already only have 4 meals that I switch between and a few snacks, so I would just shrivel away if I eliminated soy at this point, PLUS, I have so many friends who didn't have to eliminate anything except gluten and temporary dairy/fatty foods...they just took a LONG time to heal.

But I'm getting SO SICK AND TIRED of hurting or feeling nauseous or having such high anxiety.

If you've been through this what got you through? I'm getting really frustrated, it is such a HUGE sacrifice to go gluten free and get nothing from it.


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



Celiac.com Sponsor (A8-M):



MNBeth Explorer

Boy, I can relate. I'm so sorry you're having such a hard time. My son and I just got our Enterolab results back a couple of weeks ago, and I'm feeling some of the same already. It's so hard to keep pressing on when I still feel crummy so much of the time, and the pressure to feed my family - especially my newly gluten-free 15 yo son - gets overwhelming.

It helps me to read and reread the comments of those who took a long time to feel better. I haven't been going nearly as long as you have, though. Still, I need to keep being reminded that not feeling better doesn't mean this is the wrong thing for us.

I'm right where you are on the soy, too. We reluctantly went off casein a week or so after the gluten, but soy? We depend more on Asian food than ever - seems like we'd be down to meat and potatoes w/o gluten-free soy sauce.

I wish I had some better advice, but anyway, hang in there and know you're doing the right thing for your body by going gluten free.

JNBunnie1 Community Regular

It sounds to me like you need some more nutrients and fat in your diet, especially with the joint issues. How do you feel when you eat avocados? I make guacamole almost every day when I'm not feeling well, the fats in avocado really help my stomach feel better. You can use gluten-free chips or carrots and cucumbers or whatever other veggies you like for dipping. I put my chopped up avocado on scrambled eggs and add salsa, sounds wierd but it's yummy. And are you taking a vit B supplement? I started feeling much better when I started that. I usually eat eggs for dinner instead of breakfast, too, because my stomach only tolerates certain foods in the morning, very strange.

FootballFanatic Contributor

It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.

cyberprof Enthusiast

Sorry you're not feeling better.

Couple ideas:

If you're still on medication, are you sure it's gluten free?

Are you sure that your vitamins and toiletries are gluten free?

Are you taking Vitamin B12 (sub-lingual)? It might really help...

Have you had your thyroid checked, especially autoimmune thyroid?

Have you been checked for diabetes?

Have you tried a true elimination diet?

I know you don't want to go off soy, but you could try it for a few days to see if it is the problem. If it is, wouldn't it be better to find out than to suffer more and more?

Good luck and hope you're better soon.

~Laura

JNBunnie1 Community Regular
It's really funny that you recommend avocadoes because I'm deathly allergic....:(

Anyway I'm trying to load up on calories for the malnutrition.

Ok, just kidding. Maybe use olive oil to lightly saute all your greens. Get some decent coconut oil to use for baking, and sweet potato tastes really good sauteed in coconut oil. Mashed potatoes with ground hamburger, and use the hamburger drippings to moisten the potato, that will up your calorie count and it tastes yummy.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,582
    • Most Online (within 30 mins)
      7,748

    SusieP
    Newest Member
    SusieP
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Shingles is dormant and related to chicken pox when one has had in the past.Shingles comes out when stress is heightened.I had my 3rd Shingles in 2023.
    • knitty kitty
      Here's one more that shows Lysine also helps alleviate pain! Exploring the Analgesic Potential of L-Lysine: Molecular Mechanisms, Preclinical Evidence, and Implications for Pharmaceutical Pain Therapy https://pmc.ncbi.nlm.nih.gov/articles/PMC12114920/
    • Flash1970
      Thank you for the links to the articles.  Interesting reading. I'll be telling my brother in law because he has a lot of pain
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.