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

Just Not Getting Much Better...


Bravie

Recommended Posts

Bravie Apprentice

Hi everyone. I am new to this forum. I am 20 years old and currently living with Celiac disease.

I have been going gluten free at the doctor's orders since around may. About 3 months ago. I started to feel better and was pretty much symptom free the entire month of June. Then one day, I accidently ate something with gluten in it, around July 1st, and I haven't been the same since. My stomach has been feeling very bubbly, it's been hurting after I eat, gas, occasional diarrhea, I'm gaining alot of weight in the stomach area, and I feel very foggy headed. All from one slip up. I mean, my symptoms aren't as bad as they were before going gluten-free, but it is still very bothersome...My mom suggested that I lay off dairy for a bit, or eat less of it for a while. I absolutely LOVE dairy. You just can't tell me that I can't eat dairy ever again! :( I am willing to improvise and eat less of it, but I can't just stop eatting it all together ><

Also since then, I got this white spot in my mouth and my lips peel like every 3 days. I've always had problems with my lips but not to this severity. I've been eatting gluten free since I was contaminated, no slip ups, and i'm still not getting any better. And i'm scared to death that maybe I might have some other problems going on in my body too. I can't afford to go to a doctor right now. My insurance ran up.

This is very difficult. All I hear from people is that things will get better. They were getting better until I slipped up that one time...But why is it taking so long to recover?


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



Celiac.com Sponsor (A8-M):



Eriella Explorer

Gluten affects me for a long time-- up to 3 weeks!

Make sure that there is no hidden gluten in your diet-- shampoo, lipstick, utensils..., then I would suggest going off of dairy as well. I have dairy issues that didn't show up until I was gluten-free for about 2 1/2 months. Because lactase (the enzyme that digests milk) is produced by the villi in the small intestine, the same villi that celiacs destroys, going milk free is normally best :angry: . Or at least very low dairy.

If it doesn't get better in a week, I'd suggest getting more blood work and seeing if there is another problem.

JNBunnie1 Community Regular

Hi Bravie, relax, I don't think there's anything 'else' wrong with you. All those exact same things happened to me. In fact, I recently got glutened, and after I had recovered, I started getting the worst diarrhea ever. Turns out I'm now either temporarily or permanently lactose intolerant. But! (big but) taking Lactaid makes me able to eat dairy anytime. It's really working for me. Part of why I persist in eating dairy is because I need to nutrition, I drink raw milk and I eat lots of organic grass-fed yogurt, because I need the calories and nutrition. You might want to try taking a lactase enzyme supplement for a few days, take one as soon as you buy it, then one with every meal that has dairy. There's directions on the box. Hope this helps!

oh, I had the peely lip thing too. It goes away eventually, I used a topical steroid for pain relief for a while.

Acersma Rookie

I am starting to discover problems w/ dairy as well. Was not a problem a month ago. Last week I ate yogart (gluten free) and was bloated. I thought I got glutened elsewhere. Had cheese in my omelett the other day and was gurgly stomach, pains, and bloating. Had milk same night and all over again. I am going to stay away from dairy for a while again. Could be a new thing w/ me. My insides of my lips and cheeks are "torn" up as well. Peeling. I too love dairy and cheese is my fave snack but hey if it makes me miserable I am happy to find a new one. Just try going dairy free for a while.

Jody

SchnauzerMom Rookie

It wouldn't hurt to go dairy free for a while just to see if it's a problem. It might be a temporary problem. Once your body heals you may be able to eat it again. Lactose pills work great for me. You might give them a try too.

24years free Newbie

You most likely have some hidden gluten in your diet. Some people are super sensitive and your peeling llips and mouth spots probably are lip gloss or lipstick related. Please read all labels carefully for anything that might be gluten-by-any-other-name. Hidden gluten is a serious issue, and the new labeling laws help, but don't assume anything. Sorry to scare you, but a slip up on my part 16 years in resulted in a Emergency room visit, and I will not repeat THAT again!

sfm Apprentice
Hi everyone. I am new to this forum. I am 20 years old and currently living with Celiac disease.

I have been going gluten free at the doctor's orders since around may. About 3 months ago. I started to feel better and was pretty much symptom free the entire month of June. Then one day, I accidently ate something with gluten in it, around July 1st, and I haven't been the same since. My stomach has been feeling very bubbly, it's been hurting after I eat, gas, occasional diarrhea, I'm gaining alot of weight in the stomach area, and I feel very foggy headed. All from one slip up. I mean, my symptoms aren't as bad as they were before going gluten-free, but it is still very bothersome...My mom suggested that I lay off dairy for a bit, or eat less of it for a while. I absolutely LOVE dairy. You just can't tell me that I can't eat dairy ever again! :( I am willing to improvise and eat less of it, but I can't just stop eatting it all together ><

Also since then, I got this white spot in my mouth and my lips peel like every 3 days. I've always had problems with my lips but not to this severity. I've been eatting gluten free since I was contaminated, no slip ups, and i'm still not getting any better. And i'm scared to death that maybe I might have some other problems going on in my body too. I can't afford to go to a doctor right now. My insurance ran up.

This is very difficult. All I hear from people is that things will get better. They were getting better until I slipped up that one time...But why is it taking so long to recover?

I've been cross-contaminated a few times since I went gluten free - and it always takes me several weeks before I feel myself starting to get better again. I think some people are just more sensitive.

The dairy is something I was very reluctant to give up, until I found that I am casein intolerant. I find that so unfair. It's not as painful as the gluten - I just feel very gassy and get diarrhea. But until I gave it up I was still feeling ill sometimes. To be perfectly honest, I do have dairy occasionally (ice cream, mostly, or cheese). But that is on very rare occasions. You might only be temporarilly lactose intolerant - some people are because the villi that get damaged are where the lactase enzyme is produced, and until they heal, they can't handle it. Could you give it up temporarily?


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



Celiac.com Sponsor (A8-M):



Electra375 Newbie

The gaining weight in the stomach would lead me to believe something else was going on like Cushings or possibly a thyroid dysfunction. But give it some time before freaking out. It can take a while to get gluten out of your system.

Also those w celiac disease usually find they need to go Dairy free while their gut heals and then reintroduce it later usually without incident.

I would give up all dairy for 2 weeks to see how you feel. You can do anything for 2 weeks.

Archived

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

  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    4. - trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,216
    • Most Online (within 30 mins)
      7,748

    Athenablue
    Newest Member
    Athenablue
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.