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

Feeling So Discouraged


livelifelarge24

Recommended Posts

livelifelarge24 Enthusiast

To make a very long story short, like a lot of you, going gluten free ended a lifetime of misery for me- almost immediately. I had a small bout of withdrawals in the beginning but really I felt absolutely incredible from about day three or four. Twice I've mistakenly ingested a small amount of gluten (I think) and had traces of the old pain I used to feel but got through it no problem.

Now, 11 weeks into the diet I feel completely discouraged. I have had three gut-wrenching stomach aches this week, one was the exact kind I used to get from the gluten. I swear I am not doing anything differently. I have eaten every meal & snack at home, have not changed anything in my diet. I feel like I could just cry! Here I spent two and a half months with a confidence I've never been able to have before. I was going places I wouldn't usually and socializing. But now I'm back to canceling and putting people off and making excuses. I'm totally bummed out and confused. And I'm kinda scared that maybe celiac was never it at all? Any words of wisdom would be helpful right now because I am really upset :(


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



Celiac.com Sponsor (A8-M):



domesticactivist Collaborator

I'm sorry you are having such a hard time! Three possibilities come to mind.

1 you may be becoming more aware of cross contamination. At first cutting out the main sources of gluten showed a great response. With your system under less stress you may be noticing smaller amounts. I have a post about going gluten free on the blog linked from my profile that may help.

2 if your home and food are safe, maybe the new places you are going are not? Our son got glutened at a pianO recital from eating blueberries without washing up after playing the same piano as gluten eaters! There is a post on here about bowling balls, too. Even if you eat your own food make sure to wash up well when you are out.

3 could you have other food sensitivities that are now becoming unmasked?

I do believe with some persistence you will figure this out and feel great again!

livelifelarge24 Enthusiast

Thank you for the response. I always thought maybe I was OVERLY vigilant because I am constantly washing my hands & won't even kiss my fianc

Bubba's Mom Enthusiast

It gets dicouraging doesn't it? The Dr.s say "don't eat gluten" and leave you to deal with it. I'm about 7 weeks gluten-free myself. I've gotten reactions several times recently and it makes you retrace everything you've done and eaten.

I know once gluten is out of your system small amounts can send your immune system into full attack mode. Your problems could be from foods labelad as gluten-free, but aren't completly free, or you may be touching something that a gluten eater has touched (phone, keyboard, door knobs, etc.)and then transferred it to yourself?

Also, if you have, or are around gluten eating pets they can "get you".

If you've thought of all of those things, it could be some other food or additive that's causing you symptoms. Dairy if you have unhealed damage in your intestines is a biggy, and some people have problems with various other foods while in the process of healing. I know we think that we should be "cured" immediately when we stop gluten, but there's a lot going on inside of us.

Keep a food log and write down what you eat, including brand names. Make a note of any symptoms you have. It gets tricky because some reactions are delayed hours or days! Try to stick with unprocessed foods like fruits and veggies and unprocessed meats. it makes narrowing down suspicious items easier.

Good luck..chin up! You'll get it worked out.

Bubba's Mom Enthusiast

I forgot to add..taking digestive enzymes can help digest things that are a bit difficult on your system right now. You might want to give those a try?

livelifelarge24 Enthusiast

I have been meaning to try a probiotic & just haven't gotten around to it. That's a great idea. I definitely stuck with mote whole foods in the beginning and have gradually added more packaged foods, maybe my body just doesn't like that. Or, could be the intense stress of deciding to sell my business maybe.

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. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,811
    • Most Online (within 30 mins)
      7,748

    Taraceliacmama
    Newest Member
    Taraceliacmama
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.