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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,862
    • Most Online (within 30 mins)
      7,748
    ZoesDad
    Newest Member
    ZoesDad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.