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

Yes, Things Do Get Better!

FruitEnthusiast

Recommended Posts

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

I've been agonizing over the time it's taking to heal, as I've mentioned in previous posts. Then I made an encouraging realization. Recovering isn't taking as long as I thought. I keep thinking I've been gluten free for nearly five months, which is technically true, but I've been developing sensitivities to other foods for the last three months, and was "glutened" a few times each of those months, not by actual gluten, but by other the other foods I've developed the exact same symptoms to: rice, eggs, and nightshades. Each time I was getting better before trying another new food. So, there is a direct link to my current symptoms, and still feeling bad makes sense. I've only been "reaction free" since eliminating the last problem food. That was only three weeks ago! In reality I've only been "gluten" free for three weeks! No wonder I've been so sick. There aren't any foods left to "test", so that's great. I still have to eat the extremely limited diet I'm eating now, for a long time, but I won't be eating anything else new, so I really can start to recover, finally. I already am.

Thank goodness I kept track of each dietary change on my calendar, otherwise I wouldn't be able to put these pieces together. I think the brain fog, depression, and anxiety (all part of the entire group of symptoms I experience) has kept me from seeing this pattern sooner. I can tell my mind is clearing because I'm starting to think about things I haven't thought about in a long time, like my future, instead of just trying to get through each day. I'm feeling a lot more positive, listening to music, working on my artwork, and exercising again.

Things do get better. Even when I have any other setbacks, because, of course, this road will never be entirely free of "bumps", I can look back at this post and others like it, and remind myself to be patient, and that the recovery will come.

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

Celiac.com Sponsor (A8-M):


bartfull Rising Star
bartfull
Posted

Sara, that is great to hear. We have all been or are going through something that will, in the long run, make us stronger people. We have learned to cherish the good days, and we have learned patience to get us through the bad ones.

But most of all, I think this disease teaches us about hope. And hope is one of the most beautiful words in the English language.

Keep up the good work, and here's hoping your setbacks are mild and infrequent! :)

cahill Collaborator
cahill
Posted

I have been gluten free since 2009 and soy free since 2010 and I still keep a food journal.

I can not stress how helpful it has been.I would suggest that anyone having food issues keeps a food journal.

Glad things are looking up :)

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

It's such a rollercoaster right now. A good day then a bad one and so on... I still don't know what each day will be like. Didn't feel well again today, but seem to be bouncing back tonight. Tomorrow who knows? It feels good to be feeling more like myself again though. It means so much to me to be able to check in on this site, and see what's happening with all the rest of you who are having similar experiences. I felt so alone with this stuff before, and since finding this forum, I feel like I'm part of a community. It's really nice. I hope others who are suffering will find it too.

cahill Collaborator
cahill
Posted

It's such a rollercoaster right now. A good day then a bad one and so on... I still don't know what each day will be like. Didn't feel well again today, but seem to be bouncing back tonight. Tomorrow who knows? It feels good to be feeling more like myself again though. It means so much to me to be able to check in on this site, and see what's happening with all the rest of you who are having similar experiences. I felt so alone with this stuff before, and since finding this forum, I feel like I'm part of a community. It's really nice. I hope others who are suffering will find it too.

It is a rollercoaster right now but just hang in the there. At some point you will realize that you are having more good days than bad. Then you will realize it has been awhile since you had a bad day.

It DOES get better :)

1desperateladysaved Proficient
1desperateladysaved
Posted

"But most of all, I think this disease teaches us about hope. And hope is one of the most beautiful words in the English language."

Five years back when I was terribly ill I saw a Home for sale sigh. I thought it said "Hope for Sale." Oh, I could use some hope I thought. I had no hope in this world, but God was my hope. He is bringing me through it.

Thanks for this thread it is hard not to lose sight of the light ahead sometimes.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted
  • Author

It is a rollercoaster right now but just hang in the there. At some point you will realize that you are having more good days than bad. Then you will realize it has been awhile since you had a bad day.

It DOES get better :)

I really like the way you put that. Thanks. Pretty sick again today. I believe in what you have said here though. I look forward to getting better and better. I know it will happen. :)

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Good for you Sara. Simple food and a simple diet can make a big difference in healing speed IMHO. But it sitll takes time for things to settle down in your gut, and come to a new "normal". The usual things like avoiding sugar, taking probiotics, and digestive enzymes are helpful too.

I am trying to get started back up on doing my art right now. I got over a coconutting, a stomach ulcer, and a slight CC incident and feel ok again. All that only took a couple weeks to go by. Things do get better, it may take awhile, but they do get better given time and attention to diet. I hope you continue to improve! :)

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. 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...
    4. 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...
    5. Scott Adams
      - Scott Adams 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

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

      By trents · Posted

      Contact them.
×
×
  • 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.