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

Excited About Helping A Child

lonewolf

Recommended Posts

lonewolf Collaborator
lonewolf
Posted

Several years ago I was diagnosed with a kidney disease (Minimal Change Nephrotic Syndrome) and discovered, through a long process, that I could get it into remission by going fanatically gluten-free. No nasty medications or anything.

"Coincidentally", a little boy on my 10 year old son's soccer team has the same kidney disease. He's been on prednisone for 8 years and has never gone into remission. When I told his mom what I did to get better and how I've stayed in remission for 3-1/2 years, she was interested in having him try the diet. He doesn't have any symptoms of Celiac. He's been on the diet for about 8 or 9 days and I got a message on my answering machine that he's showing signs of going into remission for the first time in 8 years! I am so excited that my experience could actually help someone, especially a child!

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Several years ago I was diagnosed with a kidney disease (Minimal Change Nephrotic Syndrome) and discovered, through a long process, that I could get it into remission by going fanatically gluten-free. No nasty medications or anything.

"Coincidentally", a little boy on my 10 year old son's soccer team has the same kidney disease. He's been on prednisone for 8 years and has never gone into remission. When I told his mom what I did to get better and how I've stayed in remission for 3-1/2 years, she was interested in having him try the diet. He doesn't have any symptoms of Celiac. He's been on the diet for about 8 or 9 days and I got a message on my answering machine that he's showing signs of going into remission for the first time in 8 years! I am so excited that my experience could actually help someone, especially a child!

Liz, that is so neat. Just think that the quality of life you, by chance, have offered that young man and his family. Nothing is better than hope. Yah-ho for you! :D

elye Community Regular
elye
Posted

Wow, Liz...I just love stories like this. We keep hearing them more and more. I am tempted now to interrupt everyone who is telling me of their latest illness, or that of their mother's, or son's, regardless of what it is, and say, "you know, you've got nothing to lose with trying the gluten-free diet, and the list of illnesses and diseases that it can alleviate is quite staggering".

...Now kidney disease..... :)

EBsMom Apprentice
EBsMom
Posted

Wow, Liz, that's inspirational! Thank goodness the mom was willing to listen to you! You've given that boy a real gift!

Rho

Cheri A Contributor
Cheri A
Posted

That's wonderful!! I'm so glad that his mother was willing to try it!! It gives me hope for my acquaintances that have children with autism. Maybe I shoud make them some gluten-free food/snack baskets and give it to them to try. When I've talked to them about it, they have both responded that it would be too much work for them.

lonewolf Collaborator
lonewolf
Posted
  • Author

I'm still excited and have to give an update. The other mom just called me to tell me that her son has shown signs of remission now for 6 straight days and the doctor told them on Friday that they could start slowly tapering him off his prednisone. She is totally thrilled. Another "coincidence" happened to her yesterday. She ran into an old friend that she hadn't seen for almost 20 years and discovered that this friend is totally gluten-free too. The friend gave her a big bag of gluten-free stuff for her son to try (different things than I had given her) and encouraged her to stick with it. Wow! She sees this as a confirmation that she's doing the right thing for her son.

UR Groovy Explorer
UR Groovy
Posted

Oh Liz,

I'm glad to hear that it seems to be working out for him. :)

I'd like to see more people with MCNS giving this a shot. Even though I haven't technically gone into remission, I've had so much improvement. I'm on the verge as my numbers are so low, I hardly qualify for Nephrotic Syndrome. And, I would swear that since my labs, I'm even closer.

I'm so happy for this boy - and what a relief it must be to be getting off that stupid Prednisone. Poor kid. Maybe it'll be a thing of the past.

Good for you, Liz

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,155
    • Most Online (within 30 mins)
      7,748
    lfedas
    Newest Member
    lfedas
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.