Jump to content

  • 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):

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Last I looked the gluten-free drug list was outdated and included at least a couple that company says have gluten, like Tums.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. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    2. trents
      - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    3. nancydrewandtheceliacclue
      - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      Hello Russ! Thank you so much for your reply. I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal...
    4. Russ H
      - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Skin issues

      @Jmartes71, Been here. It's okay. You're not imagining things, but there's no bugs or parasites in your skin. The cats are not infecting you with anything. That's a hyperkeratotic plug that builds up in a hair follicle which does go deep and is attached by the hair sheath that looks stringy. It's a type of thing seen commonly in Dermatitis...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,044
    • Most Online (within 30 mins)
      10,442
    Cayla
    Newest Member
    Cayla
    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

    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      Celiac flare years after diagnosis

      By trents · Posted

      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      Celiac flare years after diagnosis

      By Russ H · Posted

      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
    • knitty kitty
      Skin issues

      By knitty kitty · Posted

      @Jmartes71, Been here.  It's okay.  You're not imagining things, but there's no bugs or parasites in your skin.  The cats are not infecting you with anything.  That's a hyperkeratotic plug that builds up in a hair follicle which does go deep and is attached by the hair sheath that looks stringy.  It's a type of thing seen commonly in Dermatitis Herpetiformis.   Niacin B 3, in the form Nicotinic Acid (active form that causes flushing) or in the form Niacinamide will help immensely with clearing this up.  Take 100 mg three times a day, and Tryptophan (another form of Niacin) to help you sleep and heal your intestines at night.   Kidney stones can result when the body doesn't have sufficient Thiamine B 1.   Are you taking a B Complex supplement?  The eight B vitamins are water soluble.  Many people with Celiac Disease benefit by taking a B Complex to boost absorption.   The cloves are great because they can reduce inflammation, but your body needs the Bs and extra Niacinamide as well.  Benfotiamine, a form of Thiamine B 1, is also needed in higher doses to heal the intestines.  If you get your intestines calmed down, your skin will calm down, too.  Benfotiamine has anticancer potential in higher doses. Rapid resolution of delusional parasitosis in pellagra with niacin augmentation therapy https://pubmed.ncbi.nlm.nih.gov/19061687/ Tryptophan metabolism: From physiological functions to key roles and therapeutic targets in cancer (Review) https://pmc.ncbi.nlm.nih.gov/articles/PMC12139378/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
×
×
  • Create New...