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

Diagnosed A Week Ago

DakotaRN

By DakotaRN
in Coping with Celiac Disease

Recommended Posts

DakotaRN Newbie
DakotaRN
Posted

I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.

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

Celiac.com Sponsor (A8-M):


MELINE Enthusiast
MELINE
Posted

Hello! Welcome to the forum.

Believe it or not, things are extremely easier as time goes by. Feel free to ask anything you want.

Meline

weeza Newbie
weeza
Posted

I feel your pain. I too am new to this. About a month now. Some of my symptoms are gone but some remain. I am also trying to turn this into a positive by changing my attitude. We can go on this journey kicking and screaming or choose to accept and find it an adventure to better health. Good luck to you.

wschmucks Contributor
wschmucks
Posted

Welcome, this board REALLY helps. I would feel so lost without it. The next few months are going to be hard. Just read as much as you can, dont eat out at resturants and try to eat as much whole food as possible so you dont get glutened. I got glutened probably every week for the first 6 weeks...then it stopped....and i got better at it. Try to be patient with yourself, do your best, and remind yourself that this is going to get better. One day you'll wake up and realize you just do it all automatically (im not there yet--only 3 months in...but thats what i tell myself).

If you have any questions ask away, and dont be afraid to call the #s on teh back of boxes.

ravenwoodglass Mentor
ravenwoodglass
Posted

It will take some getting used to but you have found a great place for info and support. Welcome to the family. Almost everyone has some ups and downs and some of us who experience the neurotoxic effects can even go through a withdrawl. Hang in there and you may find you feel better than you ever remember soon.

Make sure to encourage everyone in your family to at least get the blood test done, even if they don't think they have symptoms.

cat3883 Explorer
cat3883
Posted

I have been gluten free for 3 1/2 months now. Wow I feel so much better. But the first few weeks were a little rocky for me. I had insomnia and headaches. After that I felt so much better and still do. I am thankful that I can control my disease by what I put in my mouth. Other people arent as lucky with their diseases. Good luck to you. You will find soooo much information on this forum

Klauren Apprentice
Klauren
Posted

Hey, I was diagnosed about a week ago too. I hope we both figure this out and heal quickly! I have been asking a lot of questions here and fingers crossed some of the veterans will give me feedback. I have also spent a lot of time researching on the internet and talking to others in my social network that have Celiac. I have been mentioning it to everyone I talk to because I am on a mission to raise awareness and if I help even one person, I will be thrilled. Through talking to people I have learned a lot and I find everyone with knowledge is very willing to share. So my suggestion is tell people in your life and you are likely to find your way to others who have been living gluten free and can give you some pointers. Some of the people I have met this way - through friends - are offering to take me shopping and show me how to buy foods that are gluten free. There is a network of tasters and experts on this forum and probably near you.

Good luck! Keep me posted on your progress. Best, Kim

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

Celiac.com Sponsor (A8-M):


Mel is well Newbie
Mel is well
Posted

Hi,

I was diagnosed about 3 weeks ago. It really stinks. I feel your pain. I have had no digestive symptoms, but was having numbness in my face and arms, and muscle cramping all over.

I'm so tired of people saying, "Well, you'll probably lose a lot of weight!" (I'm not overweight). As if they think I'm now on some sort of great Atkins diet! I'm learning how to eat, but I think I end up eating gluten about every other day. Today I went to Taco Bell for lunch. I ordered 3 hard corn tacos, thinking I was being smart. Well, I found out they were full of gluten, after I gobbled them down. Oh well, ya live ya learn. Anyway, I've found a few things that help:

1. Check your local library for the book: Celiac Disease, The Hidden Epidemic. This is a great book for info on all areas of this illness.

2. Ener-G Pizza Crusts - You can order them off of (Company Name Removed - They Spammed This Forum and are Banned) and get them a lot cheaper than the health food stores, plus no shipping or tax. They are soooo good. The thought of having no more pizza was one of the most depressing things for me.

Good Luck!!!!

EazyE Newbie
EazyE
Posted
I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.

Hi, I was diagnosed almost a month ago now and in some ways it's getting easier and others much more difficult. I'm fine at home, I'm prepared and know what is safe. And I am feeling much better. So I'm hoping my intestines are starting to heal. But. . . going out, work and to restaurants, UGHHHH! I feel like I am some gluten addict :) People are eating homemade cupcakes, doughnuts, pizza, and beer! I want it so bad ! I keep trying to say positive thoughts and remind myself that I am in control of this disease. And people with cancer would love to just be able to not eat certain things and be well. But it's still hard, I still want that cupcake. . .

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
      133,327
    • 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! 
    • 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.