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

So Many Questions


JustMe75

Recommended Posts

JustMe75 Enthusiast

Ok, I am new here and still trying to figure this all out. I am 32 and have suffered with stomach problems since I was 12. I was sort of diagnosed with IBS a few years ago and I had my gallbladder removed about 9 years ago. My problems have only gotten worse over the years. After finding this site I made an appointment with my doctor and asked him if I could have celiac disease. He said it is very possible so I asked him to do the blood tests I read about and he said I needed to go to an allergist first. He also said to elliminate grains from my diet for 2 weeks. From what I have read it sounds like grains and gluten are the same(??) So if I stop eating grains will it change the test results, if he decides to give it to me?? Also, I can't figure out what exactly has gluten in it. Is there a list someone has made of common foods you can eat? Will I ever be able to eat out again? What about cereal, are any of the common brands ok to eat? I am very confused. I am a mother of 5 kids and not sure how anyone can actually cook for a family and eat the right foods. I am willing to try anything to feel better, but I don't even know where to begin. I would appreciate any advice!

Thank you


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

There's a lot here.

If there seems to be a good chance you have celiac, you don't need to go to an allergist. Celiac is not an allergy. You need to see a GI, preferably one who has experience with celiac. There are very specific blood tests you need (not Ige allergy tests) and possibly a biopsy of your small bowel.

You definitely should NOT stop eating wheat, rye or barley before tests as that could skew the results. Other grains are gluten-free.

IF you have celiac, every single first-degree relative also needs to be tested. With five kids, the odds are very high that at least one has or will have celiac. Also siblings and parents. When I was diagnosed my 70-year-old father discovered he has celiac.

You will be able to eat out again and there are many "common" foods that are OK, but you will definitely need to change things in your household. You simply cannot be preparing foods with gluten all the time, and you will need some separate appliances, like toasters. I do prepare some foods with gluten myself, but dinners in particular are often gluten-free. That doesn't mean my wife and son suffer, as we eat meats, vegetables, fruits, rice, potatoes, etc.

good luck

richard

kbtoyssni Contributor
From what I have read it sounds like grains and gluten are the same(??) So if I stop eating grains will it change the test results, if he decides to give it to me?? Also, I can't figure out what exactly has gluten in it. Is there a list someone has made of common foods you can eat? Will I ever be able to eat out again? What about cereal, are any of the common brands ok to eat? I am very confused.

Thank you

Gluten grains are a subset of all grains. You can still eat rice, corn, quinoa, and many other grains.

If you stop eating gluten and then get a blood test or scope for celiac, it will likely be negative because your body will stop producing antibodies and start healing. So if you ARE going to get tested, keeping eating gluten.

Check out the FAQ section on here - there's a list of things you can and cannot eat.

Yes, you will be able to eat out again. Many chain restaurants now have gluten-free menus and you can find gluten-free food at most other restaurants if you know what to ask for. It may take a few months before you feel comfortable eating out again, but you will be able to. Thai (rice based noodles), mexican (corn based tortillas) and Indian food are especially good. And "American" style can be ok if you get grilled chicken and veggies.

I know there's one or two mainstream cereals that are ok - hopefully someone else will post about those. Mainstream Rice Krispies and Corn Flakes are NOT ok - the contain barely malt.

For now I'd start reading posts. You'll find a ton of info about which brands are safe and which aren't. And feel free to ask anything - we're here to help. Ok, I have to run so that's it for now!

Ursa Major Collaborator

Why won't your GP order the Celiac panel blood test himself? That is usually the first step, and then, if you feel it necessary, you see a GI to have the endoscopy and biopsy to confirm celiac disease. Allergists have nothing to do with it, which just shows your doctor's ignorance on the matter. And you definitely don't want to start eating gluten-free before tests, or you will end up with a false negative.

You may need to do some research and educate your doctor, or find a doctor who understands celiac disease. And beware, strangely, there are plenty of GIs who don't have a clue about celiac disease, either!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,037
    • Most Online (within 30 mins)
      7,748

    cbattiato
    Newest Member
    cbattiato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
×
×
  • 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.