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

Can It Really Make You Feel This Badly?

GFreeMO

By GFreeMO
in Coping with Celiac Disease

Recommended Posts

GFreeMO Proficient
GFreeMO
Posted

I just started my gluten free diet 2 weeks ago. I noticed am improvement after a couple of days but now I am back to square one. I am pretty positive that I had gluten on Sunday either from a restaurant or from a pre-packaged tamale. Ever since then. I feel like I have the flu but I don't. My face is all red and splotchy and it burns. My lips are cracked and bleeding. I have horrible lower gut pain. Had D for 2 days straight now I have floating or grey stool full of undigested food or just a mucus discharge mixed with undigested food.

Last night I had a red itchy rash on my back and I woke up 3 times with night sweats soaking wet. Today I just feel very worn out. Flu-ish and have terrible lower gut pain with the mucus stuff.

I have so much to do. I have to pack for Christmas. We are leaving to go out of town. I don't know how I am going to do this b/c all I want to do it sit here and cry. I'm so weak and in pain and sick of being sick. My hands are shaking b/c my muscles are so weak right now and I had to sit in the shower. My face feels like it's on fire.

I went to the dr and had blood work and it all came back ok except I have elevated liver enzymes.

Thanks for listening. I just feel like I am at the end of my rope with all of this.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Quit eating prepakaged stuff and eat whole foods. You are still raw and its best to avoid such foods.

GFreeMO Proficient
GFreeMO
Posted
  • Author

Quit eating prepakaged stuff and eat whole foods. You are still raw and its best to avoid such foods.

Right now I am using Apple Cinnamon Chex, Kirkland - Costco's rice milk and Bisquick and Betty Crocker. Nothing else packaged but like hormel lunch meat and bacon oh and coffeemate in my coffee. Those things I assume are perfectly safe.

jerseyangel Proficient
jerseyangel
Posted

I just started my gluten free diet 2 weeks ago. I noticed am improvement after a couple of days but now I am back to square one. I am pretty positive that I had gluten on Sunday either from a restaurant or from a pre-packaged tamale. Ever since then. I feel like I have the flu but I don't. My face is all red and splotchy and it burns. My lips are cracked and bleeding. I have horrible lower gut pain. Had D for 2 days straight now I have floating or grey stool full of undigested food or just a mucus discharge mixed with undigested food.

Last night I had a red itchy rash on my back and I woke up 3 times with night sweats soaking wet. Today I just feel very worn out. Flu-ish and have terrible lower gut pain with the mucus stuff.

I have so much to do. I have to pack for Christmas. We are leaving to go out of town. I don't know how I am going to do this b/c all I want to do it sit here and cry. I'm so weak and in pain and sick of being sick. My hands are shaking b/c my muscles are so weak right now and I had to sit in the shower. My face feels like it's on fire.

I went to the dr and had blood work and it all came back ok except I have elevated liver enzymes.

Thanks for listening. I just feel like I am at the end of my rope with all of this.

You poor thing :( Try to take a deep breath and relax a bit because it it going to be ok :)

Unfortunately, what you are experiencing isn't uncommon. The healing is often like a roller coaster--and it can be so hard to tell what set you off. The foods you mentioned in your post are all fine, but this early in the process it would make sense to go back to basics--whole foods like meats, veggies, non acid fruits, rice, potatoes, etc. If and when you can do dairy, Greek yogurt like Fage that doesn't have thickeners.

Also, could you possibly have caught a virus? I know here in Jersey there has been a stomach bug going around and those can make you dehydrated.

Food wise though, I strongly suggest putting aside the prepared things until you are feeling better. (some of us discover additional intolerances shortly after going gluten-free) If your personal care products are not gluten-free, try switching--and even if they are sometimes the fragrances and things can set off our healing systems. Unscented laundry products.....etc.

Adalaide Mentor
Adalaide
Posted

Whole foods means truly no pre-packaged foods. (I'm not meaning your rice milk that is saving you from milk, but honestly most things that have ingredients and aren't simply a fruit, veggie or meat.) A lot of recommendations are to also give up milk because of the fact that it is so difficult to digest with the type of damage that celiacs have before we begin to heal. On one hand this can truly be best, on the other this expectation can be completely unrealistic for some people. I never gave up cereals completely. I tried and failed completely at giving up milk. Giving up pre-packaged convenience foods will pretty much be a must if you want to truly heal without contaminating yourself. (Things like burritos, soups, pretty much anything you can microwave and eat.) On the other hand, I personally (although someone may disagree) don't see an issue with things like lunch meats as long as you aren't sharing the package of meat with a gluten eater.

One step at a time. Set backs this early in the diet are normal, don't beat yourself up over it. Do a little, take a break, repeat. And remember, you are more than this stupid disease, don't let some dumb protein ruin your holiday!

bartfull Rising Star
bartfull
Posted

Coffeemate is not dairy-free. Maybe you could start drinking your coffe either with the rice milk or black. Black coffee is better for you anyway. Regular milk or cream makes coffee more acidic. Don't know about rice milk, but I bet if you tried it black you would learn to like it quickly.

tarnalberry Community Regular
tarnalberry
Posted

Yes, it can. But you could also have the flu, or one of many other things going around. Or even both. There's almost no sure-fire way to know.

And, as everyone else said, if you're not certain about things glutening you, going whole foods (nothing with an ingredient list, which chex, rice milk, premade mixes, packaged lunch meat, and coffee creamer all have) is how you *know* that you're avoiding gluten. (Assuming you've removed sources of contamination from your home.)

You don't necessarily HAVE to do that, if you can be VERY CONFIDENT of those ingredient lists. But restaurants... I'd just stay out of restaurants until you are feeling better, and comfortable with figuring out if you've likely been glutened or not.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

In addition to the great advice you have already gotten if you are not feeling better by tomorrow then do call your doctor and go back in. You may want to ask for stool samples to be tested as your symptoms could also be food poisoning.

GFreeMO Proficient
GFreeMO
Posted
  • Author

Thanks everyone. It is gluten related and not a virus b/c I have mucus and floating stools. I just feel so so sick with this. Celiac disease is really hard to live with and hard for me to manage.

I was using a dish soap that was "all natural" with plant based cleaners and plant oil fragrances. I emailed today to see if it was gluten free and they said that they did not know and that were not making any gluten free claims due to the fact that it was all plant based.

So I guess with celiac, sometimes we have no idea what made us sick.

We also moved into a new townhouse. The kitchen was a total pig sty when we moved in here. It was suppose to be cleaned before hand but never was. I cleaned the appliances that best that I could but I still can't get all of the gunk off of it all.

I guess I just have to keep trying to do the best that I can with this and maybe one day I will feel better. Hopefully.

Also, does anyone else get the night sweats?

jerseyangel Proficient
jerseyangel
Posted

Also, does anyone else get the night sweats?

I did when I was sick--it fades away over time.

Be sure to wear gloves when cleaning that kitchen--and it is a good idea to be wary of "natural" cleaning products until you check them out, as you did :)

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. Celiac.com Sponsored Post
      0

      An Inclusive Valentine's Day: Easy Tips for a Celebration Everyone Can Enjoy

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

      IBS-D vs Celiac

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

      IBS-D vs Celiac

      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...
    4. knitty kitty
      - 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.

      @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...
    5. Jane02
      - Jane02 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.

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

  • Member Statistics

    • Total Members
      133,337
    • Most Online (within 30 mins)
      7,748
    Susan1001
    Newest Member
    Susan1001
    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

    • trents
      IBS-D vs Celiac

      By trents · Posted

      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
      IBS-D vs Celiac

      By SilkieFairy · Posted

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

      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! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      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?
×
×
  • 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.