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. - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    2. - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    3. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

    4. - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

    5. - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

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

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748

    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
×
×
  • 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.