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

I'm Feeling Worse Since Going gluten-free


rose-thorn98

Recommended Posts

rose-thorn98 Rookie

I just started gluten-free diet 4 days ago and I'm now feeling worse than I did before I gave up Gluten. My main complaint was neuropathy before, but now I'm having horrible reflux since going gluten-free. Is it normal to feel worse in the beginning? Or could this be from the biopsy endoscopy I had done 5 days ago?


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Endoscopy and biopsy does not normally cause reflux, although I suppose it is theoretically possible. It is more likely your system adjusting to your new diet, depending on what you are eating. It is best to eat only whole foods that you cook yourself at first, to be sure that they are gluten free and also avoid possible problems with other gluten free grains. Also, you have to be sure to rid yourself of gluten contamination - in wooden cooking utensils and cutting boards, scratched nonstick pans, buy a new toaster and colander, check your scrips and OTC medications, personal care products like lipstick and shampoo, etc.

Sometimes when we first go gluten free we react more strongly to traces of gluten so you really need to be totally strict about ridding yourself of it. Have you tried taking some pepto bismol to calm things down a bit? Sorry you are feeling bad and I hope it settles down soon.

Emilushka Contributor

I just started gluten-free diet 4 days ago and I'm now feeling worse than I did before I gave up Gluten. My main complaint was neuropathy before, but now I'm having horrible reflux since going gluten-free. Is it normal to feel worse in the beginning? Or could this be from the biopsy endoscopy I had done 5 days ago?

This shouldn't be from the biopsies or endoscopy, especially this long afterward. What are you eating these days? Some foods are more likely to cause reflux than others.

T.H. Community Regular

There is such a thing called 'gluten withdrawal,' but I can't recall the symptoms right now.

However, I felt worse within days of going gluten free, and it turned out to be a few food allergies I never knew about plus a HUGE jump in sensitivity to gluten. I had to drop all grains (they were all too contaminated with gluten to tolerate, even now, a year later), although most just buy specifically gluten-free grains. A good beginning diet can be fruits, veggies, and meats that aren't chopped in the meat dept, but come chopped from the supplier (too easy to contaminate at the meat counter) might help. Dairy is probably good to avoid for now, too.

Soy is often cross contaminated, so it's not bad to avoid, either, for a little bit, anyway. And sea salt may be a bit better, and have less additives, than iodized salt, for a bit.

If you can, keeping a food diary might help you figure out what is bothering you, if it is a particular food.

Oh, and one last thing: did they ever test you for H. pylori? That can cause acid reflux and it's pretty common in celiacs.

shelbymartin93 Newbie

I just started gluten-free diet 4 days ago and I'm now feeling worse than I did before I gave up Gluten. My main complaint was neuropathy before, but now I'm having horrible reflux since going gluten-free. Is it normal to feel worse in the beginning? Or could this be from the biopsy endoscopy I had done 5 days ago?

I'm sort of expierencing the same thing. I've been on the diet for about two weeks now, three on friday, and I'm still having many symptoms. Does anything seem to help you?

GFinDC Veteran

Getting started problems are a pretty common topic around here. Also withdrawal symptoms. This thread has some ideas. If you search on withdrawal that may find some more threads with info. Unfortunately the board doesn't have any stickies for common questions that people need answers too. But you can search through the forums or just read through the various threads over a few weeks time. This one is only a week old.

Just Diagnosed: How To Keep Eating Enough?

CarolinaKip Community Regular

I'm going into my sixth month gluten-free. Keep a food diary to see what foods may be bothering you. I noticed brown rice at first. I also thought my lipgloss was safe, but found out it had wheatgerm oil in it this month. Don't trust a salespersons word for it, research it yourself. Look for CC in your own home if you have gluten eaters. Make sure you have your own toater, cutting broad, knives etc. Put your food on the top shelf and top shelf in fridge. I even have my own can opener. Look at your shampoo. lotions, meds as well. It seems overwhelming at first, hang in there!


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.

  • 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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • 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/
×
×
  • 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.