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

Needing A Little Support


Nan2N

Recommended Posts

Nan2N Explorer

Hi Everyone

I've been having a hard time lately and was hoping someone might be able to give me some advice. I've been gluten free for over 2 months now and seem to be getting sicker and sicker. I am being VERY careful about CC and eat very plain. My dietician wants me to eat tons of food every day to get my weight up, but I'm still nauseous all the time and the last thing I want to do is eat. It seems like every meal bothers me. I get a lot of stomach pain that goes through to my back and makes me miserable. My biopsy didn't show any damage, although it could have been missed but from what I'm told my intestines weren't that bad. The only thing I was low in was vitamin D which I have been supplementing. I've checked every med/supplement with the manufacturer and double check everything else by calling companies. But like I said, I eat mostly plain foods. I thought I'd feel okay by now, not worse, and have no idea what to do. My doctors are really no help. I never had any gut problems before being diagnosed and now it's relentless. I can't help but wonder if there's something else going on. I'm so sick of being sick and am really depressed about all the restrictions and food I can't eat. I just wish I could go to the store and buy what I want to bulk up. But even worse is the stomach pain, which I'm not even sure is a symptom of Celiac. I know soy and nightshades could be the culprit. But I don't have either of those on a daily basis. Any ideas?

Thanks tons!


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



Celiac.com Sponsor (A8-M):



curlyfries Contributor
I get a lot of stomach pain that goes through to my back and makes me miserable.

Don't know if this is your problem, but for me, the back pain was a symptom of gallstones.

MELINE Enthusiast
Hi Everyone

I've been having a hard time lately and was hoping someone might be able to give me some advice. I've been gluten free for over 2 months now and seem to be getting sicker and sicker. I am being VERY careful about CC and eat very plain. My dietician wants me to eat tons of food every day to get my weight up, but I'm still nauseous all the time and the last thing I want to do is eat. It seems like every meal bothers me. I get a lot of stomach pain that goes through to my back and makes me miserable. My biopsy didn't show any damage, although it could have been missed but from what I'm told my intestines weren't that bad. The only thing I was low in was vitamin D which I have been supplementing. I've checked every med/supplement with the manufacturer and double check everything else by calling companies. But like I said, I eat mostly plain foods. I thought I'd feel okay by now, not worse, and have no idea what to do. My doctors are really no help. I never had any gut problems before being diagnosed and now it's relentless. I can't help but wonder if there's something else going on. I'm so sick of being sick and am really depressed about all the restrictions and food I can't eat. I just wish I could go to the store and buy what I want to bulk up. But even worse is the stomach pain, which I'm not even sure is a symptom of Celiac. I know soy and nightshades could be the culprit. But I don't have either of those on a daily basis. Any ideas?

Thanks tons!

Hello

I am sorry you feel like this. I hope you will soon start feeling better.

Well just some ideas. For me nausea was because of IBS, candida overgrowth and other food intolerances.

IBS is something your doc can diagnose from your biopsy. Candida needs blood and/or stool tests. Other food intolerances need a specific test (sometimes a blood test / it depends on the doctor)

Something that helped me a lot was to stop eating raw vegetables and fruits. I realised that raw food was giving me abdominal pain and most of the times nausea. For nausea you can drink hot camomile just to feel better. it was very helpful for me.

But that was for me. .....Just check it out.

JNBunnie1 Community Regular

You said you were eating a very plain diet, but does this include dairy? A lot of people are lactose intolerant for a time after starting the gluten free diet, and some get over it and some remain intolerant. If you're not really able to skip th edairy for now for whatever reason, try getting some lactase pills and take one every time you eat dairy, see if that helps. I actually become lactose intolerant again for a time every time I get glutened, its feels very like what you're describing. The raw food suggestion is a good one as well, try sticking to steamed veggies and stewed fruits.

BRUMI1968 Collaborator

Folks have been giving good advice. I just wanted to say that my digestive systems prefers raw food. I am much less likely to have stomach problems (or intestinal problems) when I eat raw. That said, I don't mean lots of nuts or cabbagy foods.

Often these comfort foods like rice are not easy to digest. I don't eat any grains and since then, my stomach has felt better. Not so much nausea, which for me is an intermittent problem I have not quite solved.

For me nausea can be from:

eggs

too much fat

nervous/stress

I have not yet mastered why I sometimes have bouts of nausea - they do seem to show up around my period - not so much so that it's an easy connection - but I often wonder if I'm hormonally odd when I get the nausea.

Small Bowel Bacterial Overgrowth is a possibility. I have found when I eat too much sugar and not enough probiotics, or get out of balance sugar wise, I often get nausea. Another thing to check out.

I once had nausea so bad and for so long, I went on Xanax. That really fixed it, but only because it dulls your nervous system. I did it because I was losing too much weight. In my case, at least part of it was caused by stress (relationship dissolving.)

Peppermint tea helps. Peppermint also comes in pills.

Ursa Major Collaborator

I have the opposite problem from Bully4You. I cannot handle too many raw foods without problems. In fact, I was unable to eat ANYTHING raw for the first six months of being on the gluten-free diet, or I would get terrible stomach aches and diarrhea. I had to cook all vegetables and fruits to a mushy consistency or it would be a problem.

I still can't eat a lot of raw foods. A small salad or at the most five carrot sticks is all I can handle. One pear or apple for fruit at a time.

Plus, dairy or soy (or both) could also be a huge problem at this point.

Raw foods are hard to digest, and may not be a good idea at the beginning, when your intestines are still inflamed. The same goes for the officially gluten-free foods.

confusedks Enthusiast

I can't offer too much advise as far as nausea, but I do have something that might help. I deal with severe nausea a lot of the time and the only thing that helps take the edge off (so I can stop sweating, and swallowing to prevent vomiting) is Zofran ODT. It dissolves on your tongue and it has been a great help for me. It is a prescription medication so your Dr will have to write a script.

I have tried EVERY tea you can imagine, every supplement, every acupressure point/bands...and they all made me worse or just didn't do anything. I have also tried most anti-nausea meds, even just regular Zofran and none have worked the way Zofran ODT does.

Also, you might want to look at other causes of nausea. Were you officially diagnosed with Celiac or did you self diagnose? Did you have en endoscopy/colonoscopy to rule other things out?


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



Celiac.com Sponsor (A8-M):



Crystalkd Contributor

I've been gluten-free for about a year now. I agree with others. I would have your doc check for other allergies. I'm also corn and soy sensitive and if I eat too much it makes me almost as sick as gluten.

Fiddle-Faddle Community Regular

The stomach pain going through to the back is exactly how I described my severe acid reflux. In my case, it did have a lot to do with the gluten, but there were other issues involved as well (a hiatal hernia, acidic diet, etc).

I think what everyone else is suggesting is probably more likely to be one of your issues, but just in case, I thought I'd post my experience.

I do hate to suggest drugs, as they mask symptoms rather than dealing with the root cause, but I wonder if an acid blocker would help? And if it does, then I wonder if you might be dealing with an h-pylori infection, which is a very common cause of such issues? Or perhaps an ulcer (on top of everything else)?

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. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    3. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      IBS-D vs Celiac

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

  • 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.