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

Sore, Sad, And Sick Of Getting Sick!

8Curvey8

By 8Curvey8
in Coping with Celiac Disease

Recommended Posts

8Curvey8 Rookie
8Curvey8
Posted

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.

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

Celiac.com Sponsor (A8-M):


YoloGx Rookie
YoloGx
Posted

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.

Hi Curvey,

I can really feel the pain of this. Have had my own difficulties this Fall after working too hard and getting exhausted. I am totally with you on not eating out. I take my food with me everywhere. It is just food after all; just tell whomever you are too sensitive for it to be worth the chance of getting ill.

The thing is to look at why you have gotten so sensitive. I suggest going back to square one and baby your digestive system. Thus go back to no grains at all for a while, no sugars and eat a basic cave man like diet. It is very healing of the gut.

I also think taking some healing herbs from time to time might help -- though of course they aren't right for everyone. But many are helped by marshmallow root for instance. You also might look into taking basic plant digestive enzymes. I have found enterically coated acidophilus to be a great help. As is making my own 24 hour fermented yogurt (I am not allergic to casein, but do have a problem with lactose--the long fermentation of the yogurt gets rid of the lactose).

Again, try eating lots of vegetables--they really help. If your gut is too sensitive for raw veggies, steam them. Also consider blending them now and then so you get the benefits of the uncooked enzymes.

I have also found that taking olive leaf tea and/or extract capsules regularly (make sure of course they are gluten free!!, i.e., no alcohol extraction) is really helping me to restore myself. Daily use Olive leaf counteracts bad bacteria, viruses and fungi that many other things miss. Initially you might get a Herxheimer effect where you feel worse after the first 2 or 3 days, but that is a sign its working. Continue and I am betting soon you will feel way better than you have in months. And of course, drink lots of water!

Bea

rueyn Apprentice
rueyn
Posted

I have been gluten free for 3 years now and have had the best quality of life ever, until this past year... I got 2 stomach flus in the Spring that seemed to damage my intestinal track - has this happened to anyone before?

Slowly recovering I got glutened (sushi cc) and was again sick for another good 3 months of recovery. I was finally on track this fall, but got gluten'd at New YEars (sushi cc again).

My sweet husband got me some gluten free treats from a bakery that had CC and am back sick again on day 3 of recovery. I've officially decided to not eat anything I have not made myself anymore.

I have my parents watching my child all the time it seems, and I'm struggling through each day trying to run my business and take care of my family and home. It hurts that I need so much help taking care of my own child.

The fear of getting sick is also taking over my life as I have been sick, more than well, this past year. I don't even feel like eating anymore and no inspiration or energy to cook something.

Please tell me this is normal and will get better.

Just wanted to offer a possibility for you to look into...

Small intestine bacterial infections (SIBO). My husband has had this before (once was from a stomach flu and once was from taking a round of antibiotics for a sinus infection). If you're not familiar with SIBO, Open Original Shared Link.

It can cause symptoms similar to Celiac (bloating, diarrhea, nausea, et cetera) and makes your stomach super-sensitive. They test for SIBO through a simple breath test, and you have to go on a course of special antibiotics to fix it.

8Curvey8 Rookie
8Curvey8
Posted
  • Author

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

Just wanted to offer a possibility for you to look into...

Small intestine bacterial infections (SIBO). My husband has had this before (once was from a stomach flu and once was from taking a round of antibiotics for a sinus infection). If you're not familiar with SIBO, Open Original Shared Link.

It can cause symptoms similar to Celiac (bloating, diarrhea, nausea, et cetera) and makes your stomach super-sensitive. They test for SIBO through a simple breath test, and you have to go on a course of special antibiotics to fix it.

Karena Newbie
Karena
Posted

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

I was diagnosed with SIBO and have had the course of antibiotics for treatment. I still have issues from time to time. It's a process of keeping the gut bacteria balanced and balancing soluble and unsoluble fiber in my diet. I also started taking VSL #3, a probiotic, that is sent refrigerated and been tested to deal with SIBO. I have seen a marked difference. Take one day at a time and de-stress in whatever way is best for you. Karena

YoloGx Rookie
YoloGx
Posted

Wow, thank you both so much! I have made a dr.'s appointment with my Natureopath this week, but maybe I should see my GP too for the SIBO - that could be it too! It is so hard to diagnose and differentiate between symptoms from Celiac or something else.

Just make sure if you go to the MD to make sure they do a culture. I would not be too quick to take antibiotics--they can mess you up, esp. if they are too strong (like what happened to me this fall--the antibiotic was worse than the ear infection and messed up my gut flora awfully).

No matter what I agree its good to get checked out esp. if something keeps hanging on and other remedies don't work.

Bea

8Curvey8 Rookie
8Curvey8
Posted
  • Author

I agree - I am on probiotics already and will try that Marshmallow root for sure ;) I heard slippery elm was good too, but I think it also makes you go to the bathroom? Maybe not good right now? I don't ever take antibiotics and I see a Natureopath, I think they won't prescribe that either, possibly some kind of alternative ~ I'm seeing her Thursday. Getting tested is the best start and this may be the bases of my problems that is weakening me and makes complete sense.

I can see why killing all your bacteria with antibiotics then replenishing only good bacteria may be the best answer though, which I am open too. I love all your feedback and time and care ~ much appreciated!!! Finding this forum has been making me feel like I'm not the only celiac out there...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I agree - I am on probiotics already and will try that Marshmallow root for sure ;) I heard slippery elm was good too, but I think it also makes you go to the bathroom? Maybe not good right now? I don't ever take antibiotics and I see a Natureopath, I think they won't prescribe that either, possibly some kind of alternative ~ I'm seeing her Thursday. Getting tested is the best start and this may be the bases of my problems that is weakening me and makes complete sense.

I can see why killing all your bacteria with antibiotics then replenishing only good bacteria may be the best answer though, which I am open too. I love all your feedback and time and care ~ much appreciated!!! Finding this forum has been making me feel like I'm not the only celiac out there...

You should also see your regular doctor and get stool tests done. You may have had more than just a stomach flu. If you had or have something like salmonella you may need an antibiotic to clear it up. I had salmonella once for over a month of misery and although my doctor insisted it was just my IBS getting worse after she finally did the stool tests I got a big apology and a script for antibiotics that cleared it up very quickly. If you make sure you consume some yogurt or other probiotics while you are taking the antibiotic it will prevent the die off of the good bacteria.

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

      celiac.com support

      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!
    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.

      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...
    5. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
  • 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

    • 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! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      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
      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?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      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. 
×
×
  • 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.