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

Need A Little Guidance

CecilyF

By CecilyF
in Coping with Celiac Disease

Recommended Posts

CecilyF Rookie
CecilyF
Posted

I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

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

Celiac.com Sponsor (A8-M):


StacyA Enthusiast
StacyA
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Hi Cecily. Over a hundred people have viewed your post, but no one has replied. I think it may be because you're asking such a global question, and because you're in the 'products' section. I'm new to gluten-free, so I don't know all that much, but I wanted you to have someone reply. 6 days is very early into gluten-free, and if you've been sick a whole year it's going to take time to heal - therefore I bet you won't exactly be able to tell yet if it's just part of the ups and downs of healing or if you've been exposed to gluten. The 'coping with' and 'post diagnosis' forums have a lot of threads that echo some of your frustrations and might help you figure out what's going on or at least not feel crazy or alone. From what I can gather, everyone is different in how quickly they respond to gluten, and it will take time for you to figure out how your body responds. Check out those sections. - Stacy

Wolicki Enthusiast
Wolicki
Posted
I've been sick for a year. Just diagnosed with celiac disease last week. I've been gluten-free for 6 days now and have felt fantastic! :D This afternoon, my stomach started cramping. Does that mean I've eaten something with gluten in it or what? I ate for lunch what I fixed for supper last night. It didn't bother me last night.

Could use a little guidance on knowing when I've gotten something bad.

Thanks a bunch!

Did you have dairy with that meal? It's tough to do dairy for most of us until we are healed.

jrc121 Newbie
jrc121
Posted

Hmmm. It's quite possible. Since you're new to the game you need to prepare yourself to expect being glutened a few times, unless you get really lucky and avoid all cross contamination possibilities and hidden glutens. I would probably avoid what you ate at least for a while just to be safe, unless you're 100% sure of no gluten (say if you ate fruit or something). Search the brand name of what you ate online and/or call the company about gluten content. Could also be that you can't handle soy or corn.

New-To-This Rookie
New-To-This
Posted

From one newbee to another. My husband got so sick he ended up in the hospital. Have you gotten a new, toaster for your gluten free breads? A new cutting board? A new frying pan? Etc... You can get glutened at home by not replacing the MANY items that you use to prepare your meals. Anything wooden or scratched needs to be replaced. Yes it can and will make you sick if you don't. You could be contaiminating yourself unknowingly. It took my dear husband ending up in the hospital for us to realize, yes, even our cooking untensils can make him sick if they where used with wheat products in the past! I just had the scariest week of my life. My husband had such sever intestinal cramps Saturday the 12th I had to take him to thw hospital and he was in so much pain, I thought I was going to lose him. It took 3 shots of morphine to get the pain to where he could tolerate it. I don't mean to scare you, I just want to make sure you realize how serious this can be.

Also here are a few web sites you might find handy:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

There are tons more. I have used and saved a few of these in my favorites for my own personal use. I have even foud lists ingredients to watch for on your food labels, and before printing these lists I would have bought products that would have made my husband sick all over again. An example MSG has at least 20 differnet names and if you didn't know that you could eat something and get sick and have no idea why. And Gluten bi products and products have names you would not realize have gluten in them. Research is you best friend and your guide to preventing getting glutened again.

The people on this web site are absolutely wonderful, without them I don't know what I would have done. I just hope this information is as helpful to you as theirs has been to me! :D

New-To-This Rookie
New-To-This
Posted

Oh and I forgot, if you see a name of a book listed anywhere see if you can check it out of your local library. I have checked out at least a dozen books so far and gotten tons of information. Do realize that some of this information is old but still worth the read. I have found a few I want to buy for my personal library at home after reading several I didn't find very interesting. I found a wonderful cookbook too.

I wish you the best of luck!

CecilyF Rookie
CecilyF
Posted
  • Author

Thank you all so much! Stomach cramps subsided after that one bad day. I feel like a new woman after being gluten free!!

I appreciate all the info. What a life-changing experience this has been.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      SkinSafe

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

      SkinSafe

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

      What should I do with these test results?

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

      SkinSafe

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

      SkinSafe

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


  • Member Statistics

    • Total Members
      128,333
    • Most Online (within 30 mins)
      7,748
    Susan5940
    Newest Member
    Susan5940
    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
      SkinSafe

      By Itsabit · Posted

    • Itsabit
      SkinSafe

      By Itsabit · Posted

    • trents
      What should I do with these test results?

      By trents · Posted

      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
      SkinSafe

      By Itsabit · Posted

      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
      SkinSafe

      By Itsabit · Posted

      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...