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

Advice Needed :)


EllieR

Recommended Posts

EllieR Newbie

Hi

Hopefully somebody will be able to help me :)

I have just recently been tested for celiac and my results have come back positive.

I havnt got the the first clue what to do next.

What causes celiac?

What foods can/cant I eat?

Will I always have it ?

Thank you x


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



Celiac.com Sponsor (A8-M):



lizard00 Enthusiast

Hi and welcome to the forum!

I wanted to answer you, but have just a second, so sorry if it seems short.

Celiac is caused by a genetic predisposition that is triggered by some sort of stress. For me, it was pregnancy, for some it's a surgery, illness, etc.

Having celiac never goes away, but is managed by not eating the glutens found in wheat, barley and rye. This would include barley malt (like in beer :( or some chocolates). There is a list on this website of safe/unsafe ingredients that is a big help in the beginning, but learning to read labels will be the best thing you can do.

Please ask any questions!!! This forum was a huge help to me in the beginning, and I hope it can be for you too!

EllieR Newbie

Hey

Thanks for your reply .. Thats explains why I get ill everytime I eat ryvitas lol .

I definatly need to look into certain foods and what they contain .. I find wheat and gluten free foods are quite expensive though ?

KristyUK Newbie

Hi there.

Yes, they can be expensive. I don't buy them since I've found that I can manage quite happily without! I just eat meat, fish, fruit, veg... but that's just me! To be honest (and I think some other people might agree), it might be better to steer clear from all the gluten-free goodies for a little while, until your insides get back to being a bit more healthy. If you can eat dairy, great, go for it!

I'm surprised you didn't get any guidance from your healthcare provider?

momxyz Contributor

you might want to look around for a food coop in your area, that can help, at least with some staple items. I buy brown rice and brown rice pasta from a coop. I get the best prices if I can buy it in bulk - 10 pounds. That's a lot and it will last us a long time. So I store both in smaller quantities in tightly sealed ziplock bags.

BKKloppenborg Newbie

In the first week or two really look at the labels on food to see what it has in it. Don't assume anything this messed ne up twice. First was with vodkla with friends (thought vodkla are potatos) but it was really 100% wheat/grain. Found out the hard way. Keep a eye oN dairy also. I have never really had a bad issue with milk just sore throats, now I can't eat anything with glutten, dairy, or soy. Today did my experament with milk in cheese and eggs and got really sick at work. Still feel it also very tired stomich still hurts and slight dizzyess and buzzing on ears? (that's a new one) I wish you luck I myself also am still learning. Funney part was is went glutten free And now just today it's also soy and milk. So now I have to reshop again and drive my self nuts Again looking for food with none of these. (oh joy) :)

Good luck and hope you feel better! Brian

curlyfries Contributor

I agree that it is best to eat simply, but this website is very helpful when you need to check labels.

These companies will clearly label if wheat, barley or rye is in the product. Nothing hidden under things like 'natural flavors'.

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



msmini14 Enthusiast
Hi there.

Yes, they can be expensive. I don't buy them since I've found that I can manage quite happily without! I just eat meat, fish, fruit, veg... but that's just me! To be honest (and I think some other people might agree), it might be better to steer clear from all the gluten-free goodies for a little while, until your insides get back to being a bit more healthy. If you can eat dairy, great, go for it!

I'm surprised you didn't get any guidance from your healthcare provider?

You would be surpised what info you get or might not get. My doctor told me not to eat wheat and that was all he said. I asked for some more infomation and he said he would mail me a packet. I got the packet about a week later which I already pulled most of that info off the internet.

I agree with the other posts also, eat simple foods for right now and let your guts heal. And if you start eating gluten free bread, cookies, etc right now they might not taste as good because you are still used to wheatie products. All though the rice pastas are very tasty =)

This website is a huge help with everything, which also has an internal search engine. So if you want to search - gluten free candy - just put that in the search bar on the left top part of your screen and it will pull all posts with that information.

And welcome to the board :D

ranger Enthusiast

Hi and welcome to this board. The people on here have saved me on many occasions, and you will find the info you need.

It would help if you gave a little more info. Do you live alone, or share housing with gluten eaters? Do you have a kitchen? How skilled are you at cooking, and how much time do you have to cook? Post a little more info and tomorro, when I have more time, I can help you better. In the meantime, the advice already given is good. Stick to fresh naturally gluten-free foods like meat, fruit and veges till you get the hang of it. It's hard at first, and confusing, but you'll get it. Hope to hear from you.

Susan.

  • 2 weeks later...
tmbarke Apprentice

Getting used to it is really tough the first few days - I'm 9 days into it and am feeling some really odd withdrawls.

Shopping took me 3-1/2 hrs reading labels - I came home and lashed out like a mad woman! Just venting but so out of character for me.

I thought salads are a great choice (which I looooove!) so instead of dry salad, I looked to replace some top ingredients in my salad.

Kraft shredded cheese uses potato flour to keep the shreds from sticking - 1 down!

Bolthouse Farms salad dressings including the yogurt ones state they are gluten free - and I contacted the company (posted info under topic...Name Brand Foods Please) and they guarantee safe to cross contamination! I particularly love the classic ranch which is similar to Hidden Valley homemade ranch! - 2 down!

I replaced the marinated chicken breast with fresh chicken and natural herbs but am working on a marinade that is gluten free since some soy sauces are no no's! - 3 down!

The rest is veggies.

I can start there and work my way toward the things I love - Like wild rice and chicken breasts (makes a great wild rice and chicken soup with leftovers!) - stuffed mushrooms with herbs and veggies in a processor...plus cheese of course! - Rice pasta with Classico or Prego pasta sauces and chicken parmesan.

Keep looking at the labels to see if ingredients change - but if you've tried one and like it - you can save time going right to it and double checking the label.

Make a list of meals you'd like to prepare and shop for that.

Meijers is having a gluten free tasting / info event this saturday (if you have one)

Here's a link of what not to eat.........

https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

You'll find yourself doing hours of research - but keep checking these forums - there are a lot of things to learn here too.

Like the withdrawls and re-glutened and tips.

Glad I am not alone or the only newbie either - this forum is my life-line - my support group! My sanity while I'm learning and withdrawling. Oh yeah - it's real!

Hugs!

Tena

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    Moooey
    Newest Member
    Moooey
    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

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.