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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    2. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    5. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,083
    • Most Online (within 30 mins)
      7,748

    Juane
    Newest Member
    Juane
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.