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

Newly Diagnosed


mcoop911

Recommended Posts

mcoop911 Newbie

I was just diagnosed last week with celiac disease. After 3 years of extensive invasive testing and 2 dreadful hospitalizations I found a newly trained colo-rectal physician who was willing to see me without a PCP (primary care physician) referral.

In less than 5 minutes of listening to my history he said the blood work would provide additional documentation for celiac disease. The labs were positive. His nurse called me with the news and told me "to stay away from wheat, rye and barley" and that she would send me a packet of info which amounted to 5 pages of very basic general info.

I need help with learning about safe products like vinegar, soy sauce, condiments, pickles for now. My goal is to severly limit my choices right now until better contol.

Im grateful for this site. Thanks.


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

Welcome!

Sounds like you found a really good doctor. :)

Your idea of keeping your diet very simple for now is a good one, plain unprocessed stuff is also the most nutricious and your body can use all the good stuff right now.

This board is a good place for information, also if you have a look at the parent site celiac.com there are safe and forbidden ingredients lists. And one of the members, Nini, has a newbie kit, you can find it from the bottom of her signature.

Pauliina

Ursa Major Collaborator

Hi, and welcome to this board. Good for you for finding us so fast. Your best bet right now is to stick with naturally gluten-free food like meat, eggs, veggies and fruit, until you get the hang of the diet. Plus, while your intestines are healing, simple food is best anyway.

Check out Nini's 'newbie survival kit' on her website, and download it to your computer it will give you invaluable information. Scroll down to the bottom of the page to find the links. Open Original Shared Link

I hope you feel better soon, now that you're gluten-free.

happygirl Collaborator

mcoop911,

wow, i am happy you finally found a doctor who could help.

here is some info for you, based on what you wrote:

1st: check out this link: https://www.celiac.com/st_main.html?p_catid=12

vinegar (see the link above)---distilled vinegar is safe. Malt vinegar is NOT gluten-free. Nor is apple cider FLAVORED vinegar. But apple cider vinegar IS safe. https://www.celiac.com/st_prod.html?p_prodi...-28106553381.12 (this will help you, as many condiments are safe)

soy sauce---soy itself is safe, but often, soy sauce can have wheat as an ingredient. Some of La Choy's soy sauce is safe. San-J (a specialty brand) makes a gluten free version-that was my favorite.

Other things:

my favorite gluten free pasta is tinkyada (rice based). LOVE IT and we have served it to other guests and they didn't know.

Let us know what else we can do! Welcome to the board. Use this forum and celiac.com (the parent site to this forum)---there are SO many resources. I also highly recommend the book "Celiac Disease: A hidden epidemic" published this year by a Celiac expert at Columbia Univ. I wish I had it when I was dx.

There are no stupid questions---ask away----but be prepared for very honest answers :)

Laura

mcoop911 Newbie
Welcome!

Sounds like you found a really good doctor. :)

Your idea of keeping your diet very simple for now is a good one, plain unprocessed stuff is also the most nutricious and your body can use all the good stuff right now.

This board is a good place for information, also if you have a look at the parent site celiac.com there are safe and forbidden ingredients lists. And one of the members, Nini, has a newbie kit, you can find it from the bottom of her signature.

Pauliina

Pauliina,

Thanks for the newbie kit! I have spent the last week on this site learning so much. Is it common for celiacs to have low Vitamin D levels?

I'm a chemist by training and had absolutely no idea how complex the diet issues are - especially for someone who loves to cook.

Guest nini

Welcome, I'm glad the other posters already directed you to the newbie kit, it's just a collection of files I wish I'd had when I was first diagnosed.

I agree that keeping it simple at first is your best bet. Stick with foods that are naturally gluten-free and then after a while you can slowly try one or two gluten-free substitute procucts to increase your menu selections but don't rely on them as staples.

aikiducky Apprentice
Is it common for celiacs to have low Vitamin D levels?

Well it makes sense really when you think that your intestines haven't been able to absorb nutrients properly, possibly for a very long time. I've heard people mention low vit. D here before.

Youre lucky to love to cook - that's aboslutely the easiest way to make sure your food is gluten free! :D

Pauliina


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

Welcome! Vlasic pickles are gluten-free (and so are Milwaukee's because they're owned by Vlasic). Most pickles are gluten-free, you just have to call the company and confirm.

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.