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. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • MichaelDG
      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.