Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Should I Get Them Tested?


Carin3

Recommended Posts

Carin3 Rookie

Hi-

A little background on me. I have hardly any of the GI symptoms of celiac but most of the non-GI symptoms of celiac. I used to poop like 4 or 5 times a day. They were normal but when I had to go I had to go(my youngest and my son seem to be that way-see below) I was diagnosed with Celiac about 2 months ago. My testing was done a little backwards. I had a endoscopy/colonoscopy done due to chronic anemia (and iron pills weren't helping). After the procedures the doc said everything looked great but when I went in for my follow up two weeks later they said the biopsy showed celiac. The GI doc wasn't convinced and did the celiac blood work and also sent my biopsy to be looked at by a doctor and Yale. Well my blood work came back negative but the doctor at Yale also said Celiac. I have three kids ages 3(girl),4(boy),6(girl). My 4 year old has had stomach problems since 15 months old-we took him to a pediatric GI for poor growth and general fussiness (I just knew something wasn't right). They did a endoscopy and found a large,nasty old stomach ulcer along with chronic esophagitis/reflux. They did do biopsies for celiac and they were negative. About a year later (he was still on ulcer and reflux meds due to complaints) he had another endoscopy that found a duodenol ulcer and duodenitis (while on meds). We continued with meds and got a second opinion. A couple months after that endoscopy they did another one which showed duodenitis. Since this summer he has been doing pretty good but over the last 2 months has started complaining of his belly (but not where you have ulcer pain), chest, and throat and the biggest problem is he is pooping in his underwear all the time (he is 4 1/2). Most of his endoscopies they did biopsy for celiac but I'm not sure about the one a year ago. Does this sound familiar to anyone? Also, my youngest seems to poop 2,3,4 times a day on the potty (she so reminds me of me preGF). How accurate are the blood test of children of this age? Is it worth getting them tested? Whats the chances of one of them having it? My poor son has been through so much all ready and I figured he didnt have it b/c I didn't think his issues were associated wit celiac but then I read some and just don't know. All this is soooo new to me and I am still learning. Any help/thoughts would be appreciated!!Thanks so much and sorry so long!


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



Celiac.com Sponsor (A8-M):



karenhockley Apprentice

Hi-

A little background on me. I have hardly any of the GI symptoms of celiac but most of the non-GI symptoms of celiac. I used to poop like 4 or 5 times a day. They were normal but when I had to go I had to go(my youngest and my son seem to be that way-see below) I was diagnosed with Celiac about 2 months ago. My testing was done a little backwards. I had a endoscopy/colonoscopy done due to chronic anemia (and iron pills weren't helping). After the procedures the doc said everything looked great but when I went in for my follow up two weeks later they said the biopsy showed celiac. The GI doc wasn't convinced and did the celiac blood work and also sent my biopsy to be looked at by a doctor and Yale. Well my blood work came back negative but the doctor at Yale also said Celiac. I have three kids ages 3(girl),4(boy),6(girl). My 4 year old has had stomach problems since 15 months old-we took him to a pediatric GI for poor growth and general fussiness (I just knew something wasn't right). They did a endoscopy and found a large,nasty old stomach ulcer along with chronic esophagitis/reflux. They did do biopsies for celiac and they were negative. About a year later (he was still on ulcer and reflux meds due to complaints) he had another endoscopy that found a duodenol ulcer and duodenitis (while on meds). We continued with meds and got a second opinion. A couple months after that endoscopy they did another one which showed duodenitis. Since this summer he has been doing pretty good but over the last 2 months has started complaining of his belly (but not where you have ulcer pain), chest, and throat and the biggest problem is he is pooping in his underwear all the time (he is 4 1/2). Most of his endoscopies they did biopsy for celiac but I'm not sure about the one a year ago. Does this sound familiar to anyone? Also, my youngest seems to poop 2,3,4 times a day on the potty (she so reminds me of me preGF). How accurate are the blood test of children of this age? Is it worth getting them tested? Whats the chances of one of them having it? My poor son has been through so much all ready and I figured he didnt have it b/c I didn't think his issues were associated wit celiac but then I read some and just don't know. All this is soooo new to me and I am still learning. Any help/thoughts would be appreciated!!Thanks so much and sorry so long!

Because of your history and by the sound of the symptoms your children have I would go ahead and get the genetic testing done. Some insurance companies pay for it. Even if you decide to go with the blood test your children are old enough to get a correct diagnosis (unless on a gluten free diet) I believe if the child is under 2 you could get a false negative. But don't quote me on that. I have a friend who has Celiac as well and her son had stomach issues and she tested him and he was negative but she put him on the gluten-free diet and he's doing much better. Good luck, I hope you find your answers soon.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,441
    • Most Online (within 30 mins)
      7,748

    Momma G
    Newest Member
    Momma G
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • RMJ
      Vitamin K is also thought to help bone health, although not all scientific studies agree. 
    • trents
      @marion wheaton, are you on vitamin and mineral supplements that are appropriate for bone health in order to offset the malabsorption problem until your gut heals thoroughly? I'm talking about supplements more potent than an adult multivitamin. We routinely recommend to newly diagnosed celiacs to be taking a high potency B-complex, 5-10k of D3, Magnesium glycinate or Magnesium citrate, and zinc picolinate. All supplements need to be gluten free of course.
    • RMJ
      I’ve been taking oral alendronate for 4 years.  I haven’t had any doctors be concerned about it.  My dentist recommended against the related iv medications because of potential adverse effects on the bones in the jaw - osteonecrosis.  Supposedly rare side effect but he had seen it several times. I originally had the same concern as @trents - slowing resorption instead of building new bone.  I learned that that was a problem with the original bisphosphonates but not so much with alendronate and other newer ones.
    • trents
      Both are valid concerns IMO. I developed osteopenia from celiac disease and was taking alendronate for a time. Honestly though, I can't remember if it was before diagnosis or after diagnosis of celiac disease. I was diagnosed over twenty years ago. I don't remember having any problems with the med itself but I do remember stopping it because I was concerned about the mechanism of its action. Namely, it slows down the resorption of old bone cells rather than speeding up the production of new ones. My concern was that it might increase bone mass but actually result in softer bones. That may have been a dated concern but back then it was a reservation held by some in the medical community. And then there are all the potential side effects and drug interactions associated with it. I think once the villous lining of my small bowel began to heal and nutrient absorption improved, the bone demineralization problem at least stabilized. I am now 73 and have had no problems with fractures but I did develop kyphosis (forward curvature of the upper spine) and a little scoliosis previous to the celiac diagnosis which, of course, are irreversible. I have some occasional problems with nerve impingement in the neck as a result of the original demineralization but all in all, not as many problems as I expected. At least to this point. I do some modest weight lifting pretty regularly so I think that has helped restrengthen my bones.  My experience may not be normative, however, and there is also the difference between male and female hormones and their effect on bone health. Found this: https://www.drugs.com/tips/alendronate-patient-tips
    • marion wheaton
      They are concerned about the GI side effects and malabsorption of the medication. 
×
×
  • Create New...