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. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    2. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    3. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,258
    • Most Online (within 30 mins)
      7,748

    TracyMc
    Newest Member
    TracyMc
    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

    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
×
×
  • 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.