Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Newbie Looking For Advice...


roxieb73

Recommended Posts

roxieb73 Contributor

Any tips on how to start out things to know etc. I am going gluten free. I do not have Celiac just a double set of DQ1 genes subtypes (5,6) and a ton of symptoms that I believe to be gluten related. So in an effort to get well I am going to give this a try. Just want to make sure I do it the right way. :D So I am ready to absorb all the wonderful information you have to send my way. Thank you!

Roxie


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran
BabsV Enthusiast

Have you checked out the following thread:

It contains invaluable information for those just starting out!

GFinDC Veteran

Some starting the gluten-free diet tips:

Don't eat in restraunts

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Some threads with good info:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Celiac Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Easy yummy bread in minutes

VydorScope Proficient

The advice above is all great... but one caution. If you WANT an official dx from a doctor you need to do it before you go gluten-free as that will impact the tests. This is only if you want to get official testing from a doctor. If you are happy, as many are with just trying the diet to see if you get better, then go for it. There is no harm in the diet. B)

IrishHeart Veteran

Well, I was going to suggest something, but you guys beat me to it. :lol:

squirmingitch Veteran

And Roxie, I know from your other thread that you're going to try to stay on gluten till the tests are done & then go gluten-free no matter what the tests say. So here's what you can do in the meantime:

Go thorough your entire kitchen with a magic marker & read the ingredients on everything. Mark everything that is gluten-free with a big gluten-free on it. That way when you go gluten-free all you have to do is toss the gluteny stuff or give to a local food bank but you will be ready. Buy a new colander & any teflon that is scratched. When you go gluten-free then toss the old colander & scratched teflon.

Make sure your shampoo, conditioner & soap is gluten free. You can go ahead & switch that over now to gluten-free products as I don't think swallowing a little suds is going to add to your gluten intake for testing purposes. Also check your toothpaste & change it over now. Lipstick too or lip balms.

You could begin making a gluten-free shopping list of things you will need to get like new catsup, mayo, you know, all the condiments which have had gluten knives or spoons in them & you could go ahead & buy them but keep them unopened & then the day you go gluten-free you can open them & toss the gluten contaminated stuff.


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



Celiac.com Sponsor (A8-M):



roxieb73 Contributor

Wow such great advice from all!!!!! I was gluten free a 1 and 1/2 days before the call to do the endoscopy so back on the gluten but come next Friday bye bye! Although I am not expecting much from the biopsies because DQ1 from what I read almost always come back negative. However if I could get the GI doc to biopsy my leg with the rash then maybe. ;)

roxieb73 Contributor

And Roxie, I know from your other thread that you're going to try to stay on gluten till the tests are done & then go gluten-free no matter what the tests say. So here's what you can do in the meantime:

Go thorough your entire kitchen with a magic marker & read the ingredients on everything. Mark everything that is gluten-free with a big gluten-free on it. That way when you go gluten-free all you have to do is toss the gluteny stuff or give to a local food bank but you will be ready. Buy a new colander & any teflon that is scratched. When you go gluten-free then toss the old colander & scratched teflon.

Make sure your shampoo, conditioner & soap is gluten free. You can go ahead & switch that over now to gluten-free products as I don't think swallowing a little suds is going to add to your gluten intake for testing purposes. Also check your toothpaste & change it over now. Lipstick too or lip balms.

You could begin making a gluten-free shopping list of things you will need to get like new catsup, mayo, you know, all the condiments which have had gluten knives or spoons in them & you could go ahead & buy them but keep them unopened & then the day you go gluten-free you can open them & toss the gluten contaminated stuff.

Really new dishes? :( I don't know if I can afford it. The food is sooo expensive. I spent $50 the other day and got like 10 things. I am a bargin shopper and Gluten Free food is far from bargin prices.

VydorScope Proficient

Really new dishes? :( I don't know if I can afford it. The food is sooo expensive. I spent $50 the other day and got like 10 things. I am a bargin shopper and Gluten Free food is far from bargin prices.

Not all dishes, just the colander, and things like that where food gets stuck in places. Telfon pots with gashes in them fall in that category, as does plastic containers that are stained and/or have gashes in them. A stoneware plate is fine. Anything that you can effectively wash is fine. Some people say wooden spoons/etc have to go because wood is porous. The key is can you get it 100% completely clean or not.

IrishHeart Veteran

Really new dishes? :( I don't know if I can afford it. The food is sooo expensive. I spent $50 the other day and got like 10 things. I am a bargin shopper and Gluten Free food is far from bargin prices.

You do not need new dishes. I did not see that in her list.

In the NEWBIE 101 thread, I put a link to what to do about replacing household items.

Toaster, wooden spoons and cutting boards, scratched teflon, wooden rolling pins, plastic strainers, pizza stones.

Anything POROUS.

Don't waste all your grocery money on just gluten-free products.

Buy your meats, fruits, vegs, eggs, dairy (if you tolerate it) FIRST. They are most important. A few packages of rice or corn pasta and some bread.

Learn to make your own baked goods. It is much cheaper and healthier.

I do not spend that much more on groceries than I did before, except for flours. Those are pricey. But I would rather make my own baked goods than pay a high price for the packaged stuff.

If you like things like gluten-free Rice Krispies, Walmart's will be cheaper than the supermarket.

You'll get the hang of it.

roxieb73 Contributor

I knew after shopping I was gonna have to learn to do a lot of cooking and packaging. It will be good for me but until then I am stuck with prepacked if I wanted the carb stuff. lol I will get there. Good to know about the kitchen supplies. I must have just misunderstood. It will still be pricey but I think I can get a few items to start and just use those for now.

quincy Contributor

Hey GFinDC,

do you avoid all restaurants? I have been eating out lately and kind of wondering if I am taking too many risks now that I have 2 year under my belt.

lately, I was visiting Organic stores that have hot/cold food in the back and I finally had to stop after really questioning their food preparers. They didn't use ANY prevention measures and still would post things as gluten free on their ingredients cards... that really bugged me. they didn't even use a separate cutting board for celiac sake!

thanks!

quincy

GFinDC Veteran

Hey GFinDC,

do you avoid all restaurants? I have been eating out lately and kind of wondering if I am taking too many risks now that I have 2 year under my belt.

lately, I was visiting Organic stores that have hot/cold food in the back and I finally had to stop after really questioning their food preparers. They didn't use ANY prevention measures and still would post things as gluten free on their ingredients cards... that really bugged me. they didn't even use a separate cutting board for celiac sake!

thanks!

quincy

Hi Quincy,

Well, my advice to avoid restaurants is aimed at people new to the gluten-free diet really. When starting and trying to adjust it is simpler for people not to take chances. I think after people do the gluten-free diet a while they learn what restaurants are safe for them to eat at. I mostly don't eat at restaurants though. I did try an Outback Steakhouse on Memorial day when my sister and hubs visited and that went ok. They have a gluten-free menu. It's kind of a wierd gluten-free menu, but I didn't get sick so that's fine. That's the first time I ate in a restuarant this year though. I am willing to eat salads or veggies in some places, Places with a gluten-free menu are a good risk usually.

I am probably kind of a bad example because I work at home and don't need to eat out much. But when I do I take some Lara bars and fruit or peanuts with me so I can have something safe to eat when I am out with friends. Just in case the restaurant doesn't seem safe. And then I might get a side of veggies.

I probably ate out about 4 times last year. That doesn't mean other people can't eat out more often and be fine. But like you found out, it helps to check with the staff to see if they know what they are doing regarding cc and gluten. I have improved after 4.5 years to the point I could probably eat out more often if I wanted.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,218
    • Most Online (within 30 mins)
      7,748

    MCAyr
    Newest Member
    MCAyr
    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

    • Scott Adams
      Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
    • Scott Adams
      I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free.
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? 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.    
×
×
  • Create New...