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

Freaking Out

meggg

Recommended Posts

meggg Newbie
meggg
Posted

I went for my first doctor appointment in 7 years five days ago. I talked to my doctor about depression/anxiety, irritability, weight loss (60 lbs in 6 months) I had quit drinking soda bc i believed it was bloating me and making me gassy but it didn't really help. Also talked about me believing I was anemic due to my addiction to ice. He told me he wanted to run some blood tests for the anemia and possibly thyroid. Well he also tested me for celiac and I got the call yesterday that I had tested positively for celiac and I was anemic and had a vitamin D deficiancy. They are setting me up an appointment with a GI doctor. After reading up on the symptoms it all makes sense, but I am still scared about how big of a change this will be. I am 25 and a mother of three. My husband doesn't think it is a big deal but this is serious right? I should be freaking out a little right? Also, should my children get tested? Just need some comfort I guess.

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

No reason to freak out. This condition is a lot easier to manage than others.

Yes, it is serious. But don't start the diet until after all of your testing is done.

Yes, your children need to be tested as this condition is genetic.

guest134 Apprentice
guest134
Posted

I was scared of the possibility too at first, after all the research I did I realized it is such an easy disease to manage. To begin with you don't have to rely on doctors and medication, you cure yourself, naturally. I say cure because all symptoms and associated risks of celiac are diminished once clearing the body of gluten and your intestines heal. Also, gluten is a lot easier to avoid than you think, you can still drink all liquor, most wines and some beer, 5 of the 6 food groups are naturally gluten free and many restaurants and food chains are starting to adapt to gluten free with employees trained on cross contamination. If we were in the 80's I would be a bit more frightened but the world is now opening its eyes to celiac and the gluten free world.

Really, if you had to have any disease on this planet I would say celiac or hypothyroidism would be the top two for easiest to manage and smallest risks of other issues. Celiac is serious as in it's a disease however as for as diseases go it is not serious at all (once treated).

frieze Community Regular
frieze
Posted

your doc is a keeper!

confused123 Rookie
confused123
Posted

your doc is a keeper!

Yes! And you had answers right away!
june27 Apprentice
june27
Posted

I was diagnosed in February and it was quite a surprise to me as well. For me it felt both daunting and overwhelming in the beginning, but it does get better.

The newbie section of this forum has a lot of good information to get you started. It is probably worth having your husband read some of the information as well - the path will be a bit easier to navigate if he is there to support you. (My boyfriend was a bit skeptical at first as well, but it didn't take long before he was on board and now is always looking out for me).

It is a learning process, but will get easier with time...hang in there!!

meggg Newbie
meggg
Posted
  • Author

Thanks everyone!! I know that it is manageable but I work in a grocery store that isn't gluten friendly and I was randomly checking items and just about everything I checked contained some sort of gluten. It is just a big life change I guess. I have already decided that I will be fighting for more gluten free options in my store.

And also my doctor is great!! It is actually funny but my original doctor had left suddenly so the office distributed me to him. It was like God sent me to him!!

I go Thursday to the GI doctor so wish me luck!!

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

... It was like God sent me to him!!

...

Well maybe he did! :)

Do stay with eating gluten until your testing completed. Here's some tips for when you do start the gluten-free diet.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non-celiac wheat sensitivity article

https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

Super Easy Meal Ideas Anyone?

Cara in Boston Enthusiast
Cara in Boston
Posted

As you change the way you cook and prepare food, your entire family will benefit - they will be eating healthier too!

Get your children tested as soon as possible - even if there are no symptoms. Don't mess with their diets at all until testing is done.

The diet takes a bit of learning at first, but once you figure out your favorite foods and alter your favorite recipes, it is really not that hard. You will soon be feeling so much better - it will be worth the hassle.

meggg Newbie
meggg
Posted
  • Author

Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Met with my GI doctor yesterday!! He looked at my bloodwork after introducing himself and said "very interesting. I just met you and you are already a very interesting patient." He said he was 90% sure I had celiac sprue but wanted confirm before changing my life. I go January 8th for my endo. If confirmed he is going to send me to a nutritionist. I'm so happy that my doctors have taken charge!! Thanks for all the advice!

Just my 2 cents.....if your biopsy is negative, please consider going gluten free anyway. Biopsies are very unreliable, and false negative results are very common. With your positive symptoms and bloodwork, you should not be consuming gluten. GI docs put WAY too much emphasis on that biopsy. You should also request genetic testing to see if you have the genes. If you do, your kids need to be tested as well.

Good luck!

Cara in Boston Enthusiast
Cara in Boston
Posted

I agree. While a positive biopsy will indeed "comfirm" the diagnosis, a negative biopsy does NOT mean you don't have it. Don't let the doctor tell you otherwise. With your symptoms and blood test results, it is pretty obvious you should not be eating gluten.

Cara

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
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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.