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

By Bravie
in Coping with Celiac Disease

Recommended Posts

Bravie Apprentice
Bravie
Posted

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
Eriella
Posted

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
JNBunnie1
Posted

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
Acersma
Posted

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
SchnauzerMom
Posted

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
24years free
Posted

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
sfm
Posted
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
Electra375
Posted

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.

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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    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

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.