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

Introduction


Odysseus

Recommended Posts

Odysseus Newbie

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Welcome and congratulations for saving your own life! I wish I had figured it out at 40 like you did! Having said that, the first mistakes I made were eating in restaurants and thinking I could order "gluten free." I couldn't. Kissing someone who has eaten Gluten WILL make you sick, it's sad, but true. Lipstick either has wheat germ oil or CC issues and can make you sick unless you specifically buy gluten free. Change your toothbrush...now and frequently. Check medicines and vitamins. Soy sauce is "wheat sauce" unless you buy gluten free. There is a mainstream brand that is not gluten/wheat, but I don't remember the name. Read all labels. If you hand a cookie to a child, wash your hands. Hand sanitizer will do nothing to gluten except make sure that the gluten you eat is very clean, but it will still make you sick. Breathing flour in can make you sick because it hits the mucous membranes and makes it's way to your stomach. These are a few of my favorite mistakes. Glad you are feeling better. It sounds like you are off to a good start! Oh, and Udi's bread is pretty good. I didn't buy any other after reading all the reviews. :)

krystynycole Contributor

welcome! I as well am self diagnosed, which can be hard because there is no doctor to help you out through the process in any way. However you've found the right place, I've learned so much just from reading other peoples questions and responses.

First, I'd advise starting to eat just naturally gluten free food. It's the best way to stay positive about your new diet. Stick to the outside of your grocery store eating fresh fruit, veggies, and meats. Then slowly add in other "adapted" gluten-free foods.

Second...check out different food blogs (many on this site) for meal ideas. Also, I enjoy many recipes at www.bettycrocker.com. They make gluten-free bisquick and have a lot of recipe ideas that my non gluten-free husband even raves about!

sa1937 Community Regular

Welcome, Odysseys! In addition to what others have said, there are some books that you might find helpful:

Celiac Disease: A Hidden Epidemic by Dr. Peter Green and

Living Gluten-Free for Dummies by Danna Korn

The First Year: Celiac Disease and Living Gluten-Free by Jules Shepard

And if you shop the outer rim of the store (foregoing processed foods), it's much easier and better in the beginning. Pretty soon we get really good at label reading and can spot ingredients at a glance that we need to avoid. My first shopping trip was a nightware and took forever. After awhile It becomes almost automatic to know what we can and cannot have. (We still have to read labels though as ingredients can change in a heartbeat.

And keep reading this forum as I got so much good info as I was in the learning process. Plus check out the Gluten-Free Recipes section and post any questions you may have.

BaldurBen Newbie

Congrats on what sounds like correct self-diagnosis! Eating naturally gluten-free foods such as fruits and veggies is good advice. Read all labels and get familiar with the Safe and Unsafe lists on this site. When starting out, I was surprised to learn that mustard, soy sauce, and black liqorice for example can contain gluten.

One of my favorite ways to start the morning is to make a smoothie from rice milk, fresh fruit juice, frozen blueberries and strawberries, plus one scoop of Thorne MediClear protein powder. Toasted Udi's gluten-free bagels plus fresh cream cheese is another favorite.

Picazzo's is my favorite gluten-free pizza place, and whatever I can't get at my local supermarket I get from Whole Foods or Sprouts. Glutino and Udi's are two of my favorite gluten-free food labels. Also, you can get a lot of recipes, articles, and other good advice by following gluten-free people on Twitter. Finally, if you drink, even in moderation, you might consider giving up alcohol altogether. I never have as much energy as when I do my annual three-week detox course, which excludes alcohol.

Good luck!

Loey Rising Star

Hello all, I am new here to the forum. I believe that I have self diagnossed myself with celiac disease. After almost two weeks I have to say I feel so much better. I am 40yrs old and it seems that I have been fighting this most of my life. I hope to learn all that I can from this site. Any start off pointers would be very helpful. Such as where to buy food from, what web sites etc. Things that I wouldnt normaly think not to eat, that kind of stuff. Thanks in advance.

Welcome to our wonderful group. I joined in October 2010 and I have to say I have never met a more supportive, intelligent and kind group of people anywhere in my life. I don't know what I'd do without this forum. I'm copy and pasting two links you might find useful. Remember, regardless of what a package says ALWAYS check the ingredients!!! I hope these help.

Loey

Open Original Shared Link

Open Original Shared Link

Odysseus Newbie

Thanks again everyone for all the encouraging words and good ideas. I never would have thought of about breathing in flour or touching cookies or lipstick. Yesterday my daughters and I took my wife out for her birthday to eat at Red Lobster. Wasnt sure what I would be able to eat. I asked the staff if they had a gluten free menu and to there credit they gave me an allergen menu that showed what contained gluten and what might be cross contaminated. There were a few things on there but I read wrong and ended up with something that was cc. I picked wood grilled fresh fish with broccoli and mashed potatoes. Along with a cesar salad. Oh well, I am on the learning curve. Afterwards we stopped by the store and found some gluten free items. We bought King Arthur and Gluten free pantery flour. Some cookies, bisquick and Betty Crocker chocolate cake which was really good. Also thanks for the books ideas and the links. I will def. check them out. One last thing...where does everyone get the udi's bread. Online order???


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



Celiac.com Sponsor (A8-M):



notme Experienced

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Odysseus Newbie

if you have an earth fare, they sell the udi's bread. i have a little specialty store that carries it as well. recently i have tried (o my gosh trying to get pasta that is 'right'!!) tinkyada pasta - another brand that is AWESOME!!! 'against the grain' makes baguette bread that is pretty good, i use that to make any kind of sandwich that needs a roll like cheesesteak or cubanos. food tastes so much better when it doesn't hurt :)

Thanks for the info. I have never heard of a earth fare so I'll have to google that. Yeah, it does tastes so much better when it doesn't hurt. I always thought "thats just the way it is". Not anymore.

eatmeat4good Enthusiast

Most health food stores carry Udi's I think.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748

    Kimmber
    Newest Member
    Kimmber
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.