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

Who Else Has It?


Elyse

Recommended Posts

Elyse Newbie

Hi, my name is Elyse and I have 11 year old triplets. 2 boys and 1 girl. One of my sons, Joe, always had trouble focusing, was very picky with his eating habits, and always had stomach issues. Before this past Thanksgiving, I had noticed that the stomach problems were getting worse, and when he had to go, he had to go right then and there or else... We went to see the pediatrician who suggested that before we went through invasive testing, just keep his gluten intake to the bare minimum. I did this, and almost immediately he was more focused, he became involved in conversations with everyone, and he had no more "accidents". This was fine for about 3-4 months, and now it seems that he is having the problems again. Do I see my regular pediatrician, gastroenterologist, allergist? I'm not sure, and my pediatrician is really no help. Can someone point me in the right direction. Just to let you know, my other two kids do not seem to have this problem and my husband and I do not have this problem, so we can't figure out where it developed from. I was told that it was hereditary. Thanks so much for your input.


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



Celiac.com Sponsor (A8-M):



Guest aramgard

Celiac disease is hereditary and you may carry the gene but not have the disease, unless it is triggered. If you have only been keeping his gluten to a minimum, you may try cutting out gluten altogether. This is the only way to control gluten intolerance. One way to tell if the problem is really Celiac, is to have the genetic testing, which costs about $160 from enterolab without a doctors order. If he truly has Celiac disease the only way to prevent future problems is to maintain a totally gluten free diet for life. If he has been on restricted gluten for some time he may or may not register on a Celiac panel (blood testing). But at least the gene test would tell you if the disease is in the family. Many people carry the gene. At least 1 in 150-200 people in the U.S. Try reading up on Celiac disease on Celiac.com and then turn to enterolab.com. Dr. Fine, who runs this web site, is a Celiac and has developed testing which is cheaper than most of the lab tests in the U.S. Good luck with your hunt for health. Shirley

mom of 5 celiac Rookie

Elyse,

I have 3 kids also and they all have celiac. My husband was first diagnosed with it then as I read on it I saw that the kids were having symptoms. They are all colleg kids and having a hard time dealing with the diet. I found out I have it too. SO I think the whole world has it and just hasn't been dianosed.

I say you need to cut out all gluten Karne

Guest aramgard

I also believe all of my three children have Celiac, but try to convince them. At least the oldest one is really unconvinced and I think she has had it since infancy. Please read all that you can about this disease and take appropriate moves to keep a gluten free diet, eventually your child will grow into a healthier adult. Shirley

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. - knitty kitty replied to Jmartes71's topic in Doctors
      9

      Second chance

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    5. - Jmartes71 replied to Jmartes71's topic in Doctors
      9

      Second chance

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

    • Total Members
      133,671
    • Most Online (within 30 mins)
      7,748

    brad Mccarroll
    Newest Member
    brad Mccarroll
    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

    • knitty kitty
      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
×
×
  • 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.