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):



Wolicki Enthusiast

Testing for children is notoriously unreliable. Why not put the whole family on a gluten free trial to see if they have a positive dietary response? It's non invasive, mostly non traumatic (life without Goldfish crackers can be considered traumatic to some kids :P ) and may make a HUGE difference in their health. Give it a try :)

lovegrov Collaborator

Actually, I think these kids are old enough to at least do the blood test. Celiac experts recommend that ALL first-degree relatives be tested.

Trying the gluten-free diet with your kids isn't a bad idea, either, but if they don't need to be on it, I wouldn't put my child through it.

richard

nmlove Contributor

I agree with Richard. If the test is positive, great (well, not great but at least you know). If negative you can still do the diet to see if it affects them. My kids' pediatric GI doc told us blood test, then biopsy (we didn't have to biopsy my 2nd). If both were negative (they weren't), they'd do genetic testing to rule celiac out. Regardless of the genetic results, they would have had to go gluten-free anyway because something was making their blood test positive.

By the way, my oldest was a big pooper - from birth on. Prior to diagnosis, however, there was a change in the type of poop but frequency was still high - maybe a tad higher when he was sick - just like he was as a baby on breastmilk alone. So there's a chance that's normal for your daughter. Testing is a personal decision but for me it is nice having the diagnosis because my sons are small. It's easy to control everything right now but as they get older, it will be less so. If they didn't have to be gluten-free, then as a parent you wouldn't worry about them going over to a friend's house or out to eat or a trip to Grandma's. I have a hard time just with play dates sometimes! Plus, I don't know about you but I sure am not that old that I don't remember what it felt like to think that I'd never get old, get sick, etc. There's a chance you'll deal with some food rebellion (maybe, maybe not) but I think it far less likely to be an issue if there's no wishy-washiness about it. Anyway, just my two cents.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,420
    • Most Online (within 30 mins)
      7,748

    Jen2014
    Newest Member
    Jen2014
    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

    • Kathleen JJ
      Thank you very much for the reply! As to the cheese sauce - I am not the cook at home, I'm very lucky that my husband takes on this monumental task. But how does one make a gluten-free cheese sauce? Isn't it always based on a mixture of flower and butter? I never achieved actually making it without burning it myself, but he makes it this way. Is it a question of just replacing with a different kind of flower?
    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
×
×
  • Create New...