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

Celiac Family: I Need Your Help


ohsroac

Recommended Posts

ohsroac Apprentice

I called and ask for my daughters test results today. The doctor is going to be out of the office for a few weeks, yikes but the nurse loves me and gave me the results. My daughters 2nd biopsy said it was conclusive for Celiac Spur!

I hve tons of questions?

Does Ketchup have Gluten?

Mustard?

Cheese?

Ceral?

Help me get started this week..

Thanks,

Lena


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



Celiac.com Sponsor (A8-M):



ptkds Community Regular

Below is is list that has been posted on here before. Read it, start your own word file on your computer to copy and paste everything into, and start collecting recipes.

Good luck! You have come to the right place. There are lots of wonderful people here.

*********************

1. Take a breath!!! You're not going to be able to do this overnight, but it will all come together. We're all here to help, so try not to panic!!!

2. Buy some gluten free treats that make you feel like you can eat!!! I highly recommend Enjoy LIfe snickerdoodles, Chebe breads and pizza crust, Cause you're Special (glutenfreegourmet.com) and Pamela's brands (on sale now at (Company Name Removed - They Spammed This Forum and are Banned)), and Tinkyada pasta. If you don't have a good health food store near you, glutenfreemall.com is a good place to start and order from.

3. Go through your pantry and call the 1-800 #s on the backs of the package to see if they're gluten-free. Ask the manufacturers for gluten-free food lists. Most are great about this and will also send you coupons. The web also will have some companies' lists. This takes some time, but it helps you identify what you're already using that could be gluten-free.

4. Do the same with your med cabinet. Call about any drugs you take. This is sometimes harder to get info on, especially with generics. Vitamins, pain killers, cold meds, topical meds, everything has to be checked.

5. Move on to your health and beauty supplies next. This may not seem like a big priority, but it really is. Especially anything that goes on your hands. My daughter was VERY sick over some curel lotion we were using, then touching her bottles, etc. Unilever, lubriderm, and suave are some good companies for listing gluten ingredients, so that might be good to start with.

6. You don't have to throw out all your pans, but do be careful. I didn't realize this was an issue for months and months and got glutened several times. I wouldn't use cast iron, wooden spoons, colanders and scratched teflon pans. Other things will probably be ok if you wash them good and use the dishwasher!!!! Some people have used the self clean option on their oven to clean their cast iron.

7. Remember that a lot of pet foods have gluten. Wash your hands thoroughly after feeding animals. Be careful about the animals (dogs especially) licking you or the kids in the mouth or hands.

8. Be aware of Cross Contamination:

*Be careful for to have separate containers of Peanut Butter, jelly, butter, mayo, etc. Bread crumbs in common containers will cause a reaction. Squeezable condiments are great. We keep mayo, mustard, ketchup, and jelly this way.

*Make sure you thoroughly wash your hands between handling gluten and gluten free foods. Purell WILL NOT remove gluten, things have to be washed with gluten-free soap and water.

*Do not cook gluten-free food in a toaster that is used for gluten products.

*Glues often have gluten in them, so avoid using the paper towels with glue on them and watch him when playing with arts and crafts, washing his hands thoroughly afterwards. No licking envelopes, stamps, etc. No playing with the paper towel roll.

*DO NOT fry things in oil that has been used for things with gluten in them. Major source of contamination.

9. Stick with brands you know are safe:

These companies do not hide gluten and always list Wheat, Oats, Rye, or Barley if they use them:

Aunt Nelly's

Balance Oasis (Balance Bars)

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbell

Ahorsesoul Enthusiast

In a nut shell, I say everything can have gluten in it. You will have to read the labels on everything. I've decided it's actually fun to read labels. I'm amazed at the things that have gluten in them--orange soda, root beer, soy sauce....

This site and the internet will give you plenty of suggestion of what to eat. Focus on them and not the "can't have thats".

If you dd has this problem, look into your family and see who else may have it. A gluten free kitchen will not hurt anyone.

BRS-07 Rookie

I just got diagnosed about 2 weeks ago and I would highly recommend the gluten free shopping guide. I don't know what I would do without it.

https://www.celiac.com/catalog/product_info...products_id=802

It makes shopping so much easier when you don't know how to read labels yet. Also, walmart brand products will either say gluten free on the back or identify wheat which is also really helpful. Something I just learned was to watch out for shreaded cheese, some of them use wheat so the cheese doesn't stick together, and paper plates can be coated in wheat for the same reason.

For Cereal: Fruity Pebbles and Cocoa Pebbles are gluten free

I know the walmart brand of ketchup is gluten free, I read a controversy a few days ago about hunts and heinz, so I don't know how safe those are...someone else might be able to help on that.

Delimex chicken taquitos are gluten free

Also if you have a HyVee close by where you live, they have a gluten free list online on their website, as does Trader Joes and Whole foods (which is being redone as of now).

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. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,473
    • Most Online (within 30 mins)
      7,748

    Kelly Hannon
    Newest Member
    Kelly Hannon
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.