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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.