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

To Eat Or Not To Eat..


celia-with-celiac

Recommended Posts

celia-with-celiac Apprentice

Hello everyone.... I'm 23 and just recently realized I am allergic to gluten. Better late than never I guess but I have had to take ao many different medications and vitamins all for reasons caused by gluten as all of you have experienced I'm sure. The pain, nausea and fatigue alone are going to kill me. My Dr.s are confused so I decided to take matters into my own hands. This is the only thing that makes sense. All of the symptoms I HAVE and all of the other things like fertility and migraines I HAVE problems with too. This has to work life can't be like this it should be enjoyable and I am going to enjoy it once I get this gluten out of my system! Any help or tips would be amazing for a newbie like me! Thank you look forward to talking to most on the forums!


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



Celiac.com Sponsor (A8-M):



Fire Fairy Enthusiast

Hello everyone.... I'm 23 and just recently realized I am allergic to gluten. Better late than never I guess but I have had to take ao many different medications and vitamins all for reasons caused by gluten as all of you have experienced I'm sure. The pain, nausea and fatigue alone are going to kill me. My Dr.s are confused so I decided to take matters into my own hands. This is the only thing that makes sense. All of the symptoms I HAVE and all of the other things like fertility and migraines I HAVE problems with too. This has to work life can't be like this it should be enjoyable and I am going to enjoy it once I get this gluten out of my system! Any help or tips would be amazing for a newbie like me! Thank you look forward to talking to most on the forums!

Welcome to the board!

First suggestion I can think of is have you gluten proofed the kitchen? You don't want to use wood or plastic that has been used for gluten filled foods. You'll also want to avoid any scratched non-stick pans as they hold gluten in the scratch! In my kitchen we have separate areas for the gluten eater (my dad) to put his food. One crumb can make you sick so it's a good idea to have some things separate if you're sharing a kitchen like for example two toasters. You will want one that has never had wheat bread in it.

Some folks suggest using gluten free beauty products, especially lip stick. I use Zuzu makeup and Zoya nail polish. Zoya occasionally has fantastic sales. Kiss My Face is a nice healthy soap.

Shop the perimeter in the grocery store. Fresh fruits and Veggies are naturally gluten free. If you buy frozen or canned veggies check the ingredients sometimes they add wheat. Soy sauce unless it says otherwise has gluten in it! In my main stream grocery store just about all the veggies with sauce have gluten in them. :( If a food lists natural flavors, natural coloring, those can come from gluten plants so you'll have research it.

Check your vitamins and any meds for gluten! You need to check anything you ingest.

Wheat free does not necessarily mean Gluten Free! Always remember that! Wheat, Rye, Barley, Spelt, Malt are all sources of gluten.

Hope this helps some. I'm still a newbie so hopefully some of the wiser more experienced folks will chime in soon.

WinterSong Community Regular

Hi and welcome to the board! We're about the same age, and I was just diagnosed with Celiac about three months ago. We're actually pretty lucky for being diagnosed relatively early in life. Many people go their entire lives without realizing they have an intolerance, and a lot of times that results in other medical complications (my great grandmother had stomach cancer when she died, and I're pretty sure she had Celiac). So it's definitely a blessing to have a diagnosis and coping plan now!

This board was an incredible resource for me and I'm very grateful to have had the support, especially right after my diagnosis. Do you have an allergy, intolerance, or Celiac? Feel free to search around and ask questions. There are tons here who can give advice on pretty much anything. And if you wanna drop me a message, I'm always happy to chat about my experiences, too :)

celia-with-celiac Apprentice

Hi and welcome to the board! We're about the same age, and I was just diagnosed with Celiac about three months ago. We're actually pretty lucky for being diagnosed relatively early in life. Many people go their entire lives without realizing they have an intolerance, and a lot of times that results in other medical complications (my great grandmother had stomach cancer when she died, and I're pretty sure she had Celiac). So it's definitely a blessing to have a diagnosis and coping plan now!

This board was an incredible resource for me and I'm very grateful to have had the support, especially right after my diagnosis. Do you have an allergy, intolerance, or Celiac? Feel free to search around and ask questions. There are tons here who can give advice on pretty much anything. And if you wanna drop me a message, I'm always happy to chat about my experiences, too :)

Thank you so much that is so very true... being diagnosed early is a blessing in disguise. None of the Dr.s I have been to said I have celiac or and intolerance they said I am "sensitive" well it didn't helo when they took my gallbladder out in 2006. I think I am going to live a gluten-free life and not worry about what the docs say and just do what I feel makes me feel better! I appreciate your reply!

celia-with-celiac Apprentice

Welcome to the board!

First suggestion I can think of is have you gluten proofed the kitchen? You don't want to use wood or plastic that has been used for gluten filled foods. You'll also want to avoid any scratched non-stick pans as they hold gluten in the scratch! In my kitchen we have separate areas for the gluten eater (my dad) to put his food. One crumb can make you sick so it's a good idea to have some things separate if you're sharing a kitchen like for example two toasters. You will want one that has never had wheat bread in it.

Some folks suggest using gluten free beauty products, especially lip stick. I use Zuzu makeup and Zoya nail polish. Zoya occasionally has fantastic sales. Kiss My Face is a nice healthy soap.

Shop the perimeter in the grocery store. Fresh fruits and Veggies are naturally gluten free. If you buy frozen or canned veggies check the ingredients sometimes they add wheat. Soy sauce unless it says otherwise has gluten in it! In my main stream grocery store just about all the veggies with sauce have gluten in them. :( If a food lists natural flavors, natural coloring, those can come from gluten plants so you'll have research it.

Check your vitamins and any meds for gluten! You need to check anything you ingest.

Wheat free does not necessarily mean Gluten Free! Always remember that! Wheat, Rye, Barley, Spelt, Malt are all sources of gluten.

Hope this helps some. I'm still a newbie so hopefully some of the wiser more experienced folks will chime in soon.

That is an awesome idea!! I will get to cleaning and re-organizing the kitchen and start there. I never thought about the food touching others and contaminating it with gluten. I never even thought about the beauty products either! I have alot to learn haha! You have been most helpful most appreciated!!

domesticactivist Collaborator

Welcome! I have a post on my blog with step by step instructions for getting your house de-contaminated!

I hope it helps:

Going 100% Gluten Free

celia-with-celiac Apprentice

Welcome! I have a post on my blog with step by step instructions for getting your house de-contaminated!

I hope it helps:

Going 100% Gluten Free

Thank you so very much!!


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



Celiac.com Sponsor (A8-M):



WinterSong Community Regular

Thank you so much that is so very true... being diagnosed early is a blessing in disguise. None of the Dr.s I have been to said I have celiac or and intolerance they said I am "sensitive" well it didn't helo when they took my gallbladder out in 2006. I think I am going to live a gluten-free life and not worry about what the docs say and just do what I feel makes me feel better! I appreciate your reply!

It's great that you're taking it on yourself to try the diet. I wish my sister would do the same. She tested negative for Celiac, but I'm positive she has a gluten intolerance and possibly casein, too. She just doesn't want to try the diet even though she feels horrible and I told her it could help. :(

Fire Fairy Enthusiast

It's great that you're taking it on yourself to try the diet. I wish my sister would do the same. She tested negative for Celiac, but I'm positive she has a gluten intolerance and possibly casein, too. She just doesn't want to try the diet even though she feels horrible and I told her it could help. :(

My brother refuses to even get tested. He developed type 1 diabetes as an adult and has numerous symptoms in addition to family with the disease. He is one of those "I'd rather die" people. :(

celia-with-celiac Apprentice

It's great that you're taking it on yourself to try the diet. I wish my sister would do the same. She tested negative for Celiac, but I'm positive she has a gluten intolerance and possibly casein, too. She just doesn't want to try the diet even though she feels horrible and I told her it could help. :(

That is too bad for your sister bc most illneses can be taken care of by diet and it could NEVER hurt to try something new. If you find some neat easy to prepare meals would you mind emailing me the recipe?? Iam going to start my own gluten-free cookbook :)

celia-with-celiac Apprentice

My brother refuses to even get tested. He developed type 1 diabetes as an adult and has numerous symptoms in addition to family with the disease. He is one of those "I'd rather die" people. :(

Diabetes is serious I have type 1 and 2 on both my sides of the family! I m sorry your brother is so stubborn its time to look on the bright side! :-)

WinterSong Community Regular

My brother refuses to even get tested. He developed type 1 diabetes as an adult and has numerous symptoms in addition to family with the disease. He is one of those "I'd rather die" people. :(

I'm sorry to hear that about your brother.

My sister is in a really hard position because she's a pastry chef and is around flour all the time. She actually told me one day, "I think I do have a gluten intolerance - but I like cake too much." :( She's living with my father right now, and I've told him that she needs to get retested in two years because she's genetically predisposed to it. But even if it is an intolerance and not Celiac, the intolerance won't show up on the Celiac panel. :unsure:

I wish she could just come live with me for a few months and I'd show her how easy and delicious a gluten free diet can be.

WinterSong Community Regular

That is too bad for your sister bc most illneses can be taken care of by diet and it could NEVER hurt to try something new. If you find some neat easy to prepare meals would you mind emailing me the recipe?? Iam going to start my own gluten-free cookbook :)

I cook tons of really easy gluten-free meals. Most of the things I made before my diagnosis were actually naturally gluten-free, and the baking has been a pretty smooth switch. What kind of recipes are you looking for?

Archived

This topic is now archived and is closed to further replies.

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • 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
      @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
      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
      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
      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
×
×
  • 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.