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 To This.... Help!


BHJmom

Recommended Posts

BHJmom Newbie

Hello everyone... I am so thankful to see a board like this because I am LOST!

I am a 35 year old mother of 3 and wife of one! I have had digestive issues most of my life. It used to be "C" and now has changed to "D". I had my gallbladder removed in 2006 and then in 2007 was told I have Crohns disease in my small intestine. Never made sense to me since I am overweight (and most Crohns patients LOS weight) and I don't run to the bathroom dozens of times a day (sometimes I go days without going at all).

So, I basically ignored the diagnosis and switched docs. Unfortunately, he agreed with the other doc. I found a lovely MD who practices natural medicine and she did a TON of testing and proclaimed gluten intolerance. When I learned what going gluten free entailed, I chickened out on her too.

Now, fast forward another year with worse health. I always have some stomach issue. I have asthma too. I get an itchy rash on my arms if I stop taking Zyrtec. I have all of these symptoms that I can no longer ignore. So, today is day #1 of gluten free for me. I need all of the tips, tricks and help I can get!

How in the world do you ever eat a restaurant?

Do I have to worry about the products I use too?

Are there good alternatives to teriyaki sauce and other sauces?

Any advice or words of encouragement are greatly appreciated. I do know I don't have Celiac, but I definitely have gluten intolerance as they found gliadin antibodies in my stool.

Charity


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Hi Charity and welcome!

This is a great site. The best thing you can do now is to read, read, read here and many here are available for questions.

I would start out with a food journal and document everything that you eat and what if any reaction you have. Keep things simple like meats, seafood, potatoes, rice, veggies and fruit. Limit your seasoning to salt and pepper until you know what is safe to add.

The gluten free diet have a sharp learning curve and it takes some time to master. Don't be discouraged if you make mistakes. Everything that goes into your mouth should be checked for gluten to include lotions, toothpaste, vitamins, meds and even shampoos.

It's important that you know that should you want to be tested for Celiac, you must remain on a gluten diet for accuracy in testing. There are the blood tests that you should request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

(I thought Crohns was found in the large intestines not the small) Celiac Disease is found in the small intestines.

Rya Newbie

Quickly to Momma Goose - Crohn's is the large intestine 99% (well most) of the time. Very rarely and in bad cases it can move to the small. Not in the textbooks though...or at least mine.

Charity - I agree 100% with Momma Goose. I would avoid eating out until you feel comfortable on your diet. This diet takes planning for meals and a good bit of getting used to, but 1 month from now you'll be getting into the swing of things and 6 months from now it will be routine for you.

About the time you start getting bored with your food or are having cravings, buy a gluten-free cookbook. Also, you can search this forum (or the general internet) for old posts on recipes and snacks, there are a wealth of them.

Also, if you go to a health food store like Whole Food or Wild Oats, you can find organic tamari sauce (just like soy). Now, just because it says "organic" or "tamari" does not mean it is safe for you. Scan that label for the claims "wheat-free" and "gluten-free."

One more item of consideration, you may want to begin to throw in the back of your mind the idea of a gluten-free household. There was a recent post titled "How gluten-free is your kitchen" with some great tips from members. I think your decision can rest on two things: your level of sensitivity and your family's ability/willingness to adapt.

Fortunately now is a great time be gluten-free. We have so many products, forums like these, and more public awareness than ever. You'll be fine!!

Rya

purple Community Regular

Bragg's Liquid Aminos is the perfect sub for soy sauce...gluten-free!

happygirl Collaborator

Some of La Choy's soy sauces are gluten free, as well as some generic versions.

San-J makes a gluten free soy sauce also - regular and low sodium.

Here is some other good information:

safe and unsafe ingredient list: https://www.celiac.com/categories/Safe--Gluten-Free--Food--List--_____--Unsafe--Foods--____--Ingredients-c-3383

companies that will clearly list gluten (wheat, rye, barley, barley malt, oats): Open Original Shared Link

newly diagnosed info: Open Original Shared Link

other good resources besides this forum and its owner, celiac.com:
www.celiacdiseasecenter.columbia.edu
www.celiaccentral.org
www.celiac.org
www.celiacdisease.net
www.gluten.net

All are reputable sites with great information that should help guide you.

Amyleigh0007 Enthusiast

Eating out is hard. I have only done it a few times, when it was necessary. I usually get a potato, fruit platter, or salad. I have an allergy alert card for my son that I now use for myself too. Even though I don't have an allergy, it explains the things I can and can't have and the precautions that need to be taken in the kitchen. You can also do research on the web and print out gluten free menus to take with you. I keep a Lara bar in my purse in case there isn't much selection for me.

purple Community Regular

My dd chooses a mexican restaurant if she eats out and hasn't had a problem. Her only allergy is gluten so she orders corn tortillas. I told her to get Wendy's chili and Frosty if she needs something fast. I hear they are safe, I sure hope so.


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



Celiac.com Sponsor (A8-M):



Kauk Rookie

I enjoy eating out..we try to once a week. Subway sometimes. I get a salad BUT they need to change gloves and make it from start to finish on a fresh sheet. Some dont "get it" and are like...uhh..whatever. lol I get a veggie salad and take it home and add Tuna with my own dressing (Balamic Vinigertte)

I also do steak house...steak and potato...and some places when you tell them of Celiac are strict (AKA MOXIES) lol I eat alot of Chicken ceaser salads IF I go out, or snakc before I go and have potato skins. :D its not great but it gets me out...

HUGS babe

Rebecca

Rya Newbie

Ay yay yay Rebecca! Subway makes me nervous...

I used to be so cautious about going out to eat until my boyfriend and I moved to Houston. (I'll sidestep the sweet story about him finding two different gluten-free restaurants for my b-day and valentine's day..which are back to back.) Since then, we've found some great places to go and have never had problems.

Taco Milagro (if you're ever in Houston..) - bonus here is you can have everything on the menu!!!

Outback - ask for a gluten free menu and let your server know what's up

Carraba's - same, ask for the gluten-free menu

Pei Wei - ask for a gluten-free menu, they are very savvy

PF Chang's - same company as Pei Wei, also extremely savvy, believe the owner of the company has Celiac

Starbuck's is mostly gluten-free - by that I mean most of the drinks. I did read they were trying to develop a gluten-free cookie, only to put it on display with the other glutenous goodies :blink::rolleyes: ah....people. They tried.

Buca di Beppo - not sure they have an actual menu, but they are very allergy friendly and keep a lead chef in the kitchen to make sure everything is safe safe safe. If you like, you can call ahead and eat at the Kitchen Table and watch your food be prepared so you know it's OK.

Also, Whole Foods and Wild Oats offer lunch buffets in their stores. It's a little pricey, but if you're out and need food, you can usually find something.

Hope these options open up the doors at least for something every now and then.

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

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.