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

What's Normal?

January Flower

Recommended Posts

January Flower Rookie
January Flower
Posted

Hey! i've just been diagnosed with Celiac one month ago. The doctor told me to go buy a book about it. I'm feeling very alone and confused. To be honest a month ago i didnt even know what gluten was. I've been trying hard to be gluten free, and for the most part i feel alot better. But every few days i'll have a bad day, and its so frustrating. I'm not sure how long it takes to get rid of the GI problems. It's so embarassing when i'm at work or out with friends, i feel like i always have to know where all the bathrooms are at all times. I think about it constantly, and i'm sure that only makes my tummy more upset. Just wanted to see what everyone else's experiences were.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Jan Flower:

Boy, you sure sound like me and I have witnesses to vouch for that! I never went anywhere without checking out the bathroom first.

I too, never heard the word. I had to google it just to know what I was dx'd with. My doctor was not help what so ever.

It does get better. As it is often said here "the learning curve is steep". That is why we are hear to help each other.

Please feel comfortable to post what every concerns or questions you have. Lots of people helped me through this and that's why a lot stick around...kinda pay it forward, thing.

Welcome to celiacland.

Lisa

dionnek Enthusiast
dionnek
Posted

something that most dr's won't tell you and probably don't know is that you need to check your medications (call the manufacturer if need be), lipstick/chapstick, and maybe even shampoos/hair products and soaps/lotions (some people don't do this, but basically anything that can ever find it's way into your mouth - I eat/prepare foods with my hands a lot so lotions are important). I read the book "Wheat Free Worry Free" by Donna Korn (got it off Amazon) and it was really good, plus it has some recipes. Keep reading this board - it has the best information I've found!

January Flower Rookie
January Flower
Posted
  • Author

Hey thanks!! I feel like no one understands. Not my friends, my co-workers or my boyfriend. I guess it just takes some getting used to. I do think about it alot, everyday i wake up and think how bad will it be today?? Will i have the big D at work aggain?? Its hard. You really take for granted being able to eat whatever you want.

It is normal that its been a month since i've been cutting gluten out of my life and i still have gas/BIg D sometimes?? Its been better then it was before, but it wasn't like some miracle cure or anything. How long will i go around wondering where the nearest bathroom is??

Lisa Mentor
Lisa
Posted

It may be time to pull up " I might Celiac if..." It is soooo wonderful and adds a level of humor.

Yup, time once again.

Viola 1 Rookie
Viola 1
Posted

It's going to take awhile for you to heal ...

Also it's going to take awhile for you to realize where all that gluten is hiding. For the first few months you will likely have contamination issues. Things like putting gluten free bread in a gluten contaminated toaster. Or getting all that gluten scrubbed out of baking pans (I went out and bought new ones).

For the first while there is a lot to think about, and oodles of labels to read. You'll soon get the hang of it though.

My doctor used to say that it took a long time to do that much damage to my intestines and body, you can't expect it all to go away over night.

However, you are on the right road, and little by little you'll notice it getting better.

Welcome to the board!

PeggyV Apprentice
PeggyV
Posted

I think it takes awhile, I think it is different for someone. It is harder then you think to totally remove all gluten. In the beginning I would be doing great for days and all of the sudden....bathroom attack...

5 months later, most the time I do fine, but I am not as sensitive as a lot of people on the site. Try to think of this as a healthier way to eat, and better for you. If I really crave something, I find an alternative reciepe and I make it.

This weekend my daugher, her fiancee and a friend are coming for dinner. I am making a cheesecake (been craving one all week) Beef Strogganoff and salad, all gluten free. I will provide bread for the others, but my daugher and I cant have it. I guess what I am saying is you can live a normal life. We are lucky, it could be so much worse.

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

Celiac.com Sponsor (A8-M):


January Flower Rookie
January Flower
Posted
  • Author
I think it takes awhile, I think it is different for someone. It is harder then you think to totally remove all gluten. In the beginning I would be doing great for days and all of the sudden....bathroom attack...

5 months later, most the time I do fine, but I am not as sensitive as a lot of people on the site. Try to think of this as a healthier way to eat, and better for you. If I really crave something, I find an alternative reciepe and I make it.

This weekend my daugher, her fiancee and a friend are coming for dinner. I am making a cheesecake (been craving one all week) Beef Strogganoff and salad, all gluten free. I will provide bread for the others, but my daugher and I cant have it. I guess what I am saying is you can live a normal life. We are lucky, it could be so much worse.

mamabear Explorer
mamabear
Posted
Hey! i've just been diagnosed with Celiac one month ago. The doctor told me to go buy a book about it. I'm feeling very alone and confused. To be honest a month ago i didnt even know what gluten was. I've been trying hard to be gluten free, and for the most part i feel alot better. But every few days i'll have a bad day, and its so frustrating. I'm not sure how long it takes to get rid of the GI problems. It's so embarassing when i'm at work or out with friends, i feel like i always have to know where all the bathrooms are at all times. I think about it constantly, and i'm sure that only makes my tummy more upset. Just wanted to see what everyone else's experiences were.

Hi January Flower,

I wanted to wish you a welcome to the board. It is a fantastic source of information and if you have a question,there are tons of folks ready and willing to help. I found Bette Hagman's books(cookbooks for the most part but with great prefaces) were a fast and quick resource when I got started in celiacland(I like that !)...I also was pointed to paper and print for my education. I didn't really find this site until I had been dealing with celiac for nearly 4 years. So try not to be overwhelmed....take it one day at a time and learn to ask questions, don't be shy in restaurants, ask for a dietician or nutritionist referral, and mostly enjoy a renewed sense of wellbeing which is on the way. As to how long...well it's variable, but usually it starts to improve within 2-4 weeks......some a little longer,few very quickly. Don't forget to add gluten free multivitamins daily to help replace deficiencies . But above all, ask away. There are many very active members here to help.

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.