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.

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

    • Total Members
      133,338
    • Most Online (within 30 mins)
      7,748

    Erica Johnson
    Newest Member
    Erica Johnson
    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

    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • 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! 
×
×
  • 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.