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

Where To Go From Here?

Cles37

By Cles37
in Coping with Celiac Disease

Recommended Posts

Cles37 Newbie
Cles37
Posted

I was just diagnosed after a bout with severe nerve pain in my feet and hands. Would really like some advice on books, websites, etc. There is so much information on a disease I had never heard of until now. Hearing a list of foods you love and have enjoyed all your life all of a sudden become a list of things you an not have is a bit over whelming. ;)

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

Celiac.com Sponsor (A8-M):


louie Newbie
louie
Posted

It can be really overwhelming at first but it will get easier, this is a great site and there are plenty of people here who will happliy answer any questions you have

A few tips that helped me:

many people find that they need to cut out milk for the first 3-6 months and then reintroduce it,

While you are still trying to learn about it all think about basing your diet on fresh fruit, vegetables, meat and brown rice, then you can add foods and get more creative as you learn more and find products that are gluten free.

set aside some time to go to the shops and just read a lot of labels so you can find gluten-free products also try online shops such as the gluten free mall

a lot of people who work in health food shops or who give nutirional advice are NOT experts in celaics disease so be careful of whose advice you take.

Cleaning out the panty, fridge cupboards and changing over the staples (eg. salt, gravy, sauces, stock, cereals, flours) for gluten free versions will help you to get familar with whats available.

seperating the the gluten free and gluten containing foods helps the rest of the family to learn about what can be used, label them if you need to unitl everone is familar with what cant and can't be used

have seperate spreads (butter, jam, peanut butter, etc) that are labelled, and a seperate toaster,

I'll leave others to recommend cookbooks because I hate to cook so I just adapt recipes that I like and buy gluten free baked products.

with websites just be cautious and critical of what you read, i have found this website to have good advice and contain accurate information,

some other sites I have looked at have been a mixed bag with some questionable information, I'm sure there are other good sites but i'm just not familar with them

it will become clearer with time, just keep asking questions till you get the answers you need

cheers :D

Louie

marycubs Rookie
marycubs
Posted

Hi and welcome ;)

I'm only a month into being Gluten Free myself, so I'm still learning. I searched the web and have found this site very helpful...I've spent lots of time reading past posts and reading what others think about certain brands of gluten-free foods, what advise they gave etc. Once the relief of finding out what you have is over, the reality of this being a life long change sinks in. It is a change - but just takes time to read, learn and find your way.

I recommend Danna Korns' book Wheat Free Worry Free; the Art of Happy, Healthy, Gluten Free living. It's in paperback - and when I looked on Amazon they had used ones - so it won't hurt your wallet. I'm only 1/2 way through the book - she has a chapter or two of recipes in it - but it is more of an explaination of Celiac Disease - and speaks to the impact this has on your life - because it does - but also keeps it in perspective. The diet may be inconvenient, and difficult at times - but at least it is something within your control.

I had the 'typical' symptoms - digestive issues, fatigue,anemia...and after 5 weeks I am definitely feeling better. I had one bad episode after eating a taco..but other than that my body is feeling better and I feel I'm on the road to recovery.

Good luck - and hang in there ! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748
    judytay080
    Newest Member
    judytay080
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.