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

New And Soooo Overwhelmed

Guest havetobestrong

By Guest havetobestrong
in Post Diagnosis, Recovery & Treatment of Celiac Disease

Recommended Posts

Guest havetobestrong
Guest havetobestrong
Posted

Hello,

This is my first post. I was told today that I have gluton intolerance/Celiac. Sorry if I don't know exactly how to say all of this. I'm just a bit overwhelmed. I have not had a biopsy, but my bloodwork came back positive. I have a very long family history of autoimmune disorders. I've also been diagnosed with Fibromyalgia, probable Lupus, Epilepsy, and dermatitis (along with about a zillion gastrointestinal issues). When my bloodwork came back positive, my doctor decided to go ahead and put me on the Celiac diet. I look at it all, and it just seems like so much. How do you all make sure you don't eat gluton? How do you know what medicines it is in? Does soap and toothpaste matter? I'm sorry if these questions sound silly...I just don't have a clue where to start. My doctor is getting me a packet of information together, but he also told me to look on-line at these type sites. thank you for reading and helping. -Jenny

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

Celiac.com Sponsor (A8-M):


Guest jhmom
Guest jhmom
Posted

Hi Jenny and Welcome!!! B)

The Gluten Free diet is something to get use to and it seems a bit overwhleming at first but it does get easier especially when you see / feel an improvement in your health! :D You hang in there and feel free to ask questions, this is a great place for support and encouragement!

I too may have Lupus (currently being tested and treated) and seem to have more GI probs than most people but I'm hanging in there and hoping I will feel 100% better soon. ;)

Here are some helpful links that will answer some of your questions below and help you gain more knowledge of this disease:

Open Original Shared Link

Open Original Shared Link

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Mainstream Products that are Gluten-Free

Open Original Shared Link

Research on Diseases and Disorders Associated with Celiac Disease

Take care and God Bless :rolleyes:

lovegrov Collaborator
lovegrov
Posted

Last I looked the gluten-free drug list was outdated and included at least a couple that company says have gluten, like Tums.

richard

dana-g Newbie
dana-g
Posted

I've had a lot of success putting the name of a drug together with the word gluten in quotes into google: "drug name gluten"

Guest havetobestrong
Guest havetobestrong
Posted

Thank you for your information! There is a lot to think about! -Jenny

  • 3 weeks later...
hapi2bgf Contributor
hapi2bgf
Posted

I started out by eating only home made meals. Fresh meat, plain rice or baked potato, fresh fruit. McCormicks 100 % seasonings are safe. Meaning the Basil or the Oragano are safe but check the mixed seasoning like SantaFe etc.

Make a list of all of the products in your house that do not clearly contain wheat and call the manufacturer to find out if it is safe. Go through and mark every bottle or box "gluten-free" or "Not gluten-free" based on the label or phone call. Personally, I think calling and asking is the easiest way to go. Get a list of the unexpected items to look out for and learn the trigger words like natural flavorings etc.

The diet is labor intensive at first, but soon you will have clearly marked gluten-free items throughout your house and then you will not feel so overwhelmed.

CSA/USA and Clan Thompson also sell product lists that you may find helpful.

Good luck.

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. trents
      - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they...
    2. Scott Adams
      - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease...
    4. knitty kitty
      - knitty kitty commented on Scott Adams's article in Latest Research
      2

      Do Severe Symptoms at Celiac Diagnosis Predict Long-Term Health? (+Video)

      I agree, @Flash1970, I've found a grain free diet more beneficial, too. I like the Autoimmune Protocol diet, a paleo diet, which removes potential problematic foods while healing after diagnosis, then can be expanded and easily maintained long term.
    5. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      33

      Insomnia help

      @cristiana, It's the same here, doctors check just Vitamin D and B12 routinely. The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance. B vitamins are water soluble and easily excreted in urine. Some people need to be careful with Pyridoxine B6 because they can store...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,477
    • Most Online (within 30 mins)
      7,748
    Matt Johnston
    Newest Member
    Matt Johnston
    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

    • trents
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By trents · Posted

      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By Scott Adams · Posted

      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      Barilla gluten free pasta

      By Scott Adams · Posted

      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  It's the same here, doctors check just Vitamin D and B12 routinely.  The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance.   B vitamins are water soluble and easily excreted in urine.  Some people need to be careful with Pyridoxine B6 because they can store it longer than most due to genetics.  A symptom of Pyridoxine B6 deficiency is peripheral neuropathy.  Taking Pyridoxine B6 will relieve the neuropathy, but excess Pyridoxine can also cause peripheral neuropathy.  So, if neuropathy symptoms return, stop taking the Pyridoxine and it will resolve quickly as the excess Pyridoxine is used.  But the body still needs the other B vitamins, so taking them separately without Pyridoxine can be an option.   If one is low in Vitamin D, one may also be low in the other fat soluble vitamins, A, E, and K.  Vitamin K is important to bone and circulatory  health.  Vitamin A helps improve the health of the intestine, eyes, skin and other mucus membranes.  Vitamin E helps our immune system stay healthy.   Important minerals, iron, magnesium and calcium, as well as a dozen or so trace minerals are important, too.  They need the B vitamins to be utilized, too.   Our gluten free diets can be low in B vitamins.  Our absorption can be affected for many years while we're healing.  Supplementing with B vitamins boosts our absorption and helps our bodies and our brains function at optimal levels.   Hope this helps!
    • Wheatwacked
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

      By Wheatwacked · Posted

      Welcome to the forum @colinukcoeliac. Letting them know that they lost a customer because they could not satisfy cross contamination needs may incline them to fix that problem.  It was good of tnem to alert you.  The more they know...
×
×
  • 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.