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New To This.... Help!


BHJmom

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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


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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.


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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.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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