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

Does Anyone Actually Feel 100% Better?!?!?!

LilyCeliac

By LilyCeliac
in Coping with Celiac Disease

Recommended Posts

loco-ladi Contributor
loco-ladi
Posted

I am currently standing at about 9 months 100% gluten free, prior to that I was unsuccessfully gluten free, I didnt know about the "hidden" gluten and was partially free.

My beggining was not as successful but was "better" since going 100% gluten-free earlier this year I see even more improvement..

My best improvement is the fact I dont have to wait to eat until I can "take the chance" of becoming ill after eating...... I get hungry I eat its that simple.

I think the second best thing that happened was the first time I had to "grunt" when in the bathroom, such a glorious sound comapred to what I had before, yeah yeah I know TMI, lol

Third would be finding I did not have to "go without" some of my favorite foods, I have my cookies, brownies and pancakes back! I had missed them so!

I cant say I feel 100% better but a steady 75% at this time, I still have an occational glutening mostly when forced to eat out and am greatful that during my vacation and having 5 houseguests and eating out multiple times I managed NOT to get struck with a poisoning! Cant say all my meals were the best but hey I survived!

It takes time and lucky for me I have the rest of my life to get to 100% but I am enjoying my 75% every day!

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

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

I second the casein and the soy as possible culprits. If you don't want to just blindly experiment, you could try the Enterolab testing. Also there are food allergy tests out there as well, could help you find some things to try.

Soy has been shown in research to causing villi blunting, as I have read here.

Some great responses here, I have appreciated reading them, as I am also still struggling with symptoms.

  • 1 month later...
kimberly-10 Newbie
kimberly-10
Posted

I feel sooooo much better! for years i had horrible hip and knee joint pain and cronic constipation. I now have normal bm's consistently! more than one day in a row! my bloating and gas went away and the only time I have problems is when I have been glutend. :lol:

nutralady2001 Newbie
nutralady2001
Posted

I am some-one that went 47 years without a diagnosis

Here in Australia glucose syrup/dextrose/maltodextrin from wheat is said to have "no detectable gluten" because of the processing renders it at 0.0002% ( 2 parts per million) and is considered "safe" by the Coeliac Society

After chatting in my Aussie Coeliac Yahoogroup I decided as an experiment to cut out any food containing these as well................

The results are positive, brain fog is even less, fatigue lessened even more, depression/mood has lifted...........very subtle differences but noticeable all the same

So I am a Coeliac who can't have these in my diet either . Whether it was because I went for so many years undiagnosed and it has made me even more sensitive I don't know

I don't buy anything that has been processed on any equipment that also processed gluten containing items, my personal care items make-up/skin care etc don't contain gluten

McGluten Newbie
McGluten
Posted

Wow, such great reading here! It looks like this multi-sensitivity to various foods is more the norm and not my own personal nightmare!

Before I forget: the posters asking about the abdominal pain...I had this and still do somewhat. Try a liver/gallbladder cleanse. It worked for me. I had off and on tightness/cramping for years until last Feb. it became servere cramping that didn't go away. I'd be lying fetal on the floor for hours eventually. Open Original Shared Link (you don't need the ornithine or black walnut)

I'm thinking I've always been sensitive to gluten. It just built up so much over 30 years of eating it that it's finally manifested with DH rash on my hands and various other food intolerances.

Good(sad) to hear others have the issue with fruits.

Foods I'm trying to cut out are: gluten, sugars (fruit too), eggs, most dairy (goat milk seems great).

I'm eager to test the age - 20 formula for months. I'm about half way there hopefully!

Ps. Anyone find anywhere to buy Redbridge beer in Calgary?

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.