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

Would like some feedback


bfinnegan

Recommended Posts

bfinnegan Newbie

Hi, I am a brand new member and Im not quite sure what I am doing. Figured I would give this a try because it would be nice to have people to talk to that understand the seriousness of celiac disease and how difficult it can be to follow a gluten free diet. I was diagnosed some mths ago and still have difficulty making sure that I am steering clear of gluten. I read all the labels but none the less I know that here and there some gluten is getting into my system. When I do ingest gluten, I dont really get too many symptoms to let me know but I know my body well enough that I can feel some differences, such as upset stomach or diarrhea, but that doesnt always happen. Maybe this is not a good thing though because I am doing internal damage to my intestines without realizing it. I know now, after reading the most recent issue of Woman's Day Magazine about "The Disease in Disguise" that I need to research and gather more information than I currently know. There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.

I would be very interested in any feedback from fellow celiacs.


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



Celiac.com Sponsor (A8-M):



gf4life Enthusiast
There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.

bfinnegan, The way my kids doctor put it is that it is either 100% gluten free, or not at all. You really can't cheat on this diet. It is your health that is at stake, not just a few pounds like a weight loss diet.

I just wanted to say, welcome to the board, and feel free to ask questions. We are all here to support each other.

God bless,

Mariann :)

coveowner Newbie

Hi,

I just wrote you a long note and then lost it somewhere. I was diagnosed with celiac disease four years ago after 40 years of diarrhea. It is a constant challenge to read obscure labels or to call companies who don't really understand what gluten is. My husband is diabetic and I watch his diet as well as mine, eventhough he doesn't always want what I eat. I have just discover that canola oil is sometimes planted in wheat fields and is often cross contaminated which was a revelation to me!!!

I am a good cook and have a master's degree, so I'm not exactly stupid, but it is hard to track down where I might be getting unintended gluten.

Ah well, life is certainly interesting!!!

Rose ;)

Naradowski Rookie

Hi I am new to this also. It takes me forever to grocery shopping as I do read all the labels. I have found however that when I am in doubt I call the company. For the most part they have all been very helpful, however they urge you to read all the labels as their formulas change frequently--this adds to the frustration.I have trouble with the food additives. I have been on this diet a little over a year now and must say I do feel better. I am not up almost every night until 2or 3am "running". I have found that when I do cheat I am reminded of those nights, the pains and bloating and do not want to experience that again. It is a real challenge--especially when we go out to eat or go on vacation. I am still not to sure how to handle our next trip as we will be flying and then staying for a week in AZ. If anyone has suggestions I would appreciate them. I cannot bring my own food for a week on a plane.

seeking-wholeness Explorer

Naradowski, someone (I think it was Virginia?) suggested in another thread that you could order gluten-free foods online and have them shipped to your destination. It's something to consider, if you will be staying at the same location for the entire week!

alexa11219 Newbie

Naradowski, while you still have some time before your trip, I'd suggest find out online if there are gluten-free restaurants and organic food stores (they often have buffet bars) in destination area. If you find any, you won't have to take much food with you.

Try this:

www.glutenfreerestaurants.org

info@glutenfreerestaurants.org

Good luck.

Alexa

  • 2 weeks later...
noglutenallgood Newbie

PF Changs, Tony Roma's and Outback Steakhouse all have gluten-free menu and menu items available. I don't know if there are any in Arizona. Best of luck!

-Carolyn


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



Celiac.com Sponsor (A8-M):



EmilyP2004 Newbie
Hi, I am a brand new member and Im not quite sure what I am doing. Figured I would give this a try because it would be nice to have people to talk to that understand the seriousness of celiac disease and how difficult it can be to follow a gluten free diet. I was diagnosed some mths ago and still have difficulty making sure that I am steering clear of gluten. I read all the labels but none the less I know that here and there some gluten is getting into my system. When I do ingest gluten, I dont really get too many symptoms to let me know but I know my body well enough that I can feel some differences, such as upset stomach or diarrhea, but that doesnt always happen. Maybe this is not a good thing though because I am doing internal damage to my intestines without realizing it. I know now, after reading the most recent issue of Woman's Day Magazine about "The Disease in Disguise" that I need to research and gather more information than I currently know. There are times that I know I am cheating but in reality there is no cheating allowed!! There can be very serious consequences to pay and it's time I realized that I am shortening my life by doing so.

I would be very interested in any feedback from fellow celiacs.

*******************************************************************

If you are newly diagnosed you might want to stick to plain food cooked from scratch for a while.

Plain cooked meat, fish, eggs cannot hurt you as long as you use pure ingredients such as butter and vegetable oil.

Eggs are useful, omelettes, scrambled, boiled or fried can all be a good quick meal.

You can have any plain vegetables- salad is good but remember to use your own plain wine vinegar &, say, olive oil, dressing.

Also plain nuts (not dry roasted, some contain gluten) and seeds are gluten-free & these make a good gluten-free snack.

As long as you know everything is uncontaminated by gluten, you should be well on the way to recovery.

At first your puddings can be fruit, fresh or dried, or fruit salad you make yourself with fresh fruit and pure fruit juice . Have this with plain cream or plain bio yogurt and/or home made meringues.

I suggest you have your own gluten free area in the kitchen if you share it, own gluten-free toaster, bread board, bread knife, wooden spoon, preparation surface etc.

Check that stock cubes etc are gluten-free or use plain herbs and your own stock.

Ask on this board for a safe gluten-free bread and also a suitable gluten-free mix/flour to use in your cooking/baking.

Plain boiled rice or jacket potatoes are a good standby.

There are different rices, eg Carmargue red, black rice, Indian Basmati which make a nice change. Potatoes can be mashed, boiled, roasted & sweet potatoes are, of course, gluten-free.

Hope you like bananas as these are a great help to coeliacs- you can carry a few & eat them if you are hungry & do not know if anything is safe for you.

You can fry them in butter & olive oil & have instead of potatoes or eat as pud with maple syrup or runny honey or preserved ginger & cream or plain yogurt.

Do you have a local celiac disease group which you can join?

It is helpful to contact other coeliacs (celiacs) who really have a lot of advice and information for you.

If you do not have a local group to talk to post your queries on here & I am sure you can get help.

It is very shocking at first to have a diagnosis of celiac disease or DH but we know that there is a safe and effective treatment (gluten free diet) which will help us to return to good health & as long as we remain gluten free we are doing the best thing we can do.

You may make mistakes (I think we probably all do unless diagnosed in childhood when the GFD is all we know and a routine thing) but as long as you really try your best to remain gluten-free you should recover well.

If you do make a mistake and accidentally eat gluten you will probably be ill (I have pain & diarrhoea & feel very ill for about 24 hours if I have gluten accident) but if you do your best to stick to gluten-free diet you will recover & eventually your gut will heal.

Some medical advisers say you will recover after 6 months on gluten-free diet but for me & others it took a lot longer- nearly 2 years in my case - so do not get downhearted if you do not feel well very quickly.

Having said that, my mouth ulcers healed within a week so you may find some symptoms ease fairly early on!

There are handy hints for newbies here:

Open Original Shared Link

I can remember how shocked and unable to cope I felt when I was first diagnosed but I am sure you will be able to cope & eventually you can help others who are starting to have a gluten free life.

If you put 'celiac', 'coeliac' and/or 'gluten-free', gluten free' in a search engine you should find a lot of informatin re celiac disease & GFD.

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 Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

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

      IBS-D vs Celiac

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

      Question

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

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    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

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • 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.
×
×
  • 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.