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

Brand New Diagnosis


beks

Recommended Posts

beks Newbie

Hi everyone,

I am a 21 y/o female. Over Christmas, I started having severe abdominal pain. Recently (as in 2 hours ago) I found out that my bloodwok/biopsies show Celiac Disease. I am being referred to a dietician but I have to admit...I am lost.

Food has been such a big part of my life and I live in a culture that is very based around eating.

How does everyone handle this? First of all, I feel fine now. So should I still follow a strict gluten-free diet? I know that I have Celiac Disease but it isnt setting in because Im not "sick".

If anyone has any words of wisdom for me, I could really use it. I'm feeling a little alone here.

Thanks:(


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Well first..I hope you get a good dietitian who knows alot about celiac because some dietitians say spelt is ok and it is not it is a form of wheat.

Basically you have to be committed to this diet. If you ignore the diet you increase your chances by 40-100 times to get cancer, diabetes, liver/gallbladder/kidney/pancreas complications, osteoporosis, and other serious things. They say you can knock years off of your life and it is not worth your life.

You need to get rid of your toaster and get a new one, you need to check lipsticks(alot have wheat starch), shampoos, lotions, other cosmetics because they can easily cross contaminate and get into your mouth

This site has wonderful information and you will get the hang of things in no time. It does seem a bit overwhelming at first but it really isn't and it becomes a part of life. There are still some "normal" things we can have...and some of the gluten free products I find better then the gluten containing ones. As hard as it may seem you need to follow this diet...your family should be tested as well because this is a genetic autoimmune disorder.

Hang in there :D

Peaches503 Newbie

Hi,

I too am 21 and was diagnosed only a month ago, but was not getting severely sick. I can tell you that keeping yourself educated is the most important thing to do. Despite how you may feel, it is necessary to remain 100% gluten free for life. Any time it seems tempting for me to eat gluten, I think about how much I want children, or how much I want to have a long life with my fiancee and my family. This puts things in perspective and makes it easier to resist. Just hang in there, and most importantly, remember that you have a good support group here at celiac.com.

-Peaches

beks Newbie

Thanks everyone,

My main concern is going out. How does everyone handle it. i know that mcDonalds is probably out of the question but does it take a while to build up the courage to ask? I never want to eat out again!

tarnalberry Community Regular

Regardless of your current symptoms, if you have celiac disease (and tests don't give false positives), yes, you MUST be ABSOLUTELY gluten free. If you don't, you increase your risk for anemia, vitamin deficiences, osteoporsis, lots of other ailments, intestinal cancers, premature death because, regardless of the symptoms you feel, damage will be done to your intestines. (Most celiacs out there are "silent" - and most of those don't know it because they've never experienced GI symptoms.)

It is overwhelming at first, and if a few crying sessions help, don't feel bad for doing it, because this is a major lifestyle change. Realize, though, that once you get over the learning curve, and once you build your new habit, it is not nearly as bad as it sounds now. While I don't have a cultural background that revolves around food, I do love to cook - for myself, my husband, my friends, my coworkers, etc. This really hasn't changed any of that, aside from some of the ingredients I might choose to use. And if, like most cultures that do a lot around food, this particular one primarily relies on whole ingredients and frowns upon buying premade stuff, then you're in an even better position, because the vast majority of homemade items can be made gluten-free without too much trouble. And finally, let's not forget that the reason some cultures have an investment in food is that it's just a way to bring families together, and you can do that while opting out of the eating as well. (Tougher, but an option.)

Spend some time looking around this site, and take a look at the safe/unsafe list on the main celiac.com website. Feel free to come back and ask questions, of course, and take one day at a time. You'll make mistakes, but over time you'll get the hang of it. It's something that takes a bit of time to get a handle on, but we're all adaptable human beings, and the non-gluten-free food can be just as tasty. :-) (I personally recommend NOT relying on speciality gluten-free items, just eat whole foods that are naturally gluten-free. Requires some cooking, but tastes so good! :-) )

KaitiUSA Enthusiast
Thanks everyone,

My main concern is going out.  How does everyone handle it.  i know that mcDonalds is probably out of the question but does it take a while to build up the courage to ask?  I never want to eat out again!

https://www.celiac.com/st_main.html?p_catid=12

Here is a link to safe and not safe lists that Tiffany suggested you look at

As for McDonalds...their hashbrowns, fries, sundaes, M&M mcflurry, and a few other things are gluten free...if you go to their website it will tell you all of what is gluten free but do remember everywhere you eat out there is always a chance for cross contamination.

The Outback has a gluten free menu too...I have had no problem with them or McDonald's gluten free foods

Here are some brands where all you have to do is read the label...they will list wheat,rye, barley, oats on their label and will not hide gluten under anything questionable and if you do not see any of these ingredients then they are safe:

Aunt Nelly's

Balance

Baskin Robbins

Ben & Jerry

Betty Crocker

Blue Bunny

Breyers

Campbells

Cascadian Farms

Celestial Seasonings

Country Crock

Edy's

General Mills

Good Humor

Green Giant

Haagen Daz

Hellman's

Hershey

Hormel

Hungry Jack

Jiffy

Knorr

Kozy Shack

Kraft

Libby's

Lipton

Martha White

McCormick

Nabisco

Nestle

Old El Paso

Ortega

Pillsbury

Popsicle

Post

Progresso

Russell Stover

Seneca Foods

Smucker

Stokely's

Sunny Delight

T Marzetti

Tyson

Unilever

Wishbone

Yoplait

Zatarain's

Utz has gluten free products-check out their website

Conagra and Frito Lay also have some gluten free products.

It really isn't hard once you learn the ins and outs of it.

I agree with Tiffany though as far whole foods like veggies, and fruits that are naturally gluten free. That is the best way to go and alot healthier...I eat a mixture of things but try to keep more towards the healthier side.

No question is too dumb for this board so anytime you have a question just ask :D

ianm Apprentice

As time goes on this lifestyle becomes a habit and you won't think much about it. All I can say is for me it was the most liberating experience of my life. I was in such poor health that I seriously did not think I would live to see 40. In the past 14 months or so I have completely turned my life around. I have found the gluten-free experience to be a challenge but one that is worth the effort. Keep at it because it is worth it.


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



Celiac.com Sponsor (A8-M):



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 Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

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

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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.
×
×
  • 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.