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
      126,454
    • Most Online (within 30 mins)
      7,748

    Larians
    Newest Member
    Larians
    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

    • Beverage
      Sounds like you're very careful with food.  Any possible airborne or non-eating exposures? One time I got really sick from feeding my neighbor's chickens, the feed would get kicked up and I'd inhale the dust, read the ingredients, yup gluten. Another time we were doing some home remodeling, removed some old plaster, probably gluten in that. Anything like that?  Anybody lip kissing gluten eaters?  Any contact with pets that are eating gluten?  Body products like shampoo and lotions? 
    • Beverage
      Oh gosh. I remember being shocked when my new doc said he thought I had Celiacs (went in bcuz kidneys were failing, no intestinal issues), but relieved at first to find an explanation for my issues.  Then as I hit the library and the internet and read up on Celiacs, I got sooooo depressed and overwhelmed.  Funny you say "is it an italian thing?" ... I'm not Italian, but half Portuguese, so we're both full of fire. I had to keep repeating in my head something my Mom used to say (she had been raped as a teen, got pregnant from it, forced to marry the bastid, he beat them, she finally got away, married my dad years later and had a wonderful life full of love and lots of laughing), she would say "it's not what happens to you in life, it's what you do with what happens to you in life, how you go forward" So I finally accepted that this is what i have, everyone has something, and i will do what i have to do to get healthy and will probably end up living longer and better in the long run.  Start with your home, clean the kitchen from top to bottom. Read the info here on what to keep and what to toss, food and cookware, body products, just go through everything one at a time. You will get better at reading labels, it will be second nature.  Eat more whole foods, meat and veggies.  I remember running every dish in my house through the dishwater on the super cycle. It was probably overkill, but I felt better. You will make mistakes and have set backs, but you will prevail and the fire in your soul will get you through.  The people here are so supportive, never give up. 
    • GardeningForHealth
      So, an update...whatever is going on with me goes way beyond gluten. I have been keeping a food diary since June 2024, and I now have a long list of foods that I reacted to. My methodology was to test a specific food several times to verify a reaction. Here are the results: Anything that comes out of a sealed package (can, jar, sealed bag) triggers a reaction. The reaction is always the same: brain fog, fatigue, dizziness, and headache, significant enough to prevent working, and lasting for at least 3 days. This includes all "gluten-free" or "organic" packaged items except for 2 items: a certain brand of sweet potato chips, and another brand of plantain chips.  It is absurd and ridiculous that these items cause a reaction, but I have tested them at least twice each, and they in fact do cause brain fog, fatigue, and dizziness significant enough to prevent me from being productive. When my diet includes the foods in the below list for a whole month, I experience ~20+/- bad days and 10 or fewer good days during that month: Tea from any grocery store Tea, organic Tea, grown in USA, never-sprayed, loose leaf Dairy Organic catchup Any and all brands of gluten-free breads and dessert items Cassava flour, any brand Gluten-free flour, any brand Cucumbers from a grocery store, but not from my garden (likely due to Apeel coating) Most apples (likely due to Apeel coating) Zucchini (likely due to Apeel coating) Plums (likely due to Apeel coating) Potatoes  Sausage Any processed meat Bottled spices  Gluten-free dairy-free ice cream Rice, any brand, even after washing 3 times Environmental non-food triggers that will cause the exact same symptoms: Smoke from a fire Strong cleaning chemical fumes And the list goes on. So here are my safe foods; this is all I can eat now (when I eat this way throughout a whole month, I experience over 20 good productive days and 5 or so bad days): Fresh unprocessed meat in their whole forms such as chicken, beef, pork, fish, shrimp (yes, I cook it, I do not eat raw meat) Fresh unprocessed vegetables and fruits (except the ones above) in their whole form  Packaged sweet potato chips of a certain brand Packaged plantain chips of a certain brand Anything I grow in my garden Now, what in the world is this? I've never heard of something this bizarre and wouldn't have believed it unless this had been my own personal experience. I have delayed posting this here, because I haven't been able to make sense of it myself.
    • Lkg5
      Totally agree with you about oxalates.  Changed my diet recently since reading about them.  No more daily handfuls of almonds or almond milk.  Turns out they are very high in oxalates.  Noticed an immediate improvement in my digestion and urine was no longer cloudy.  Pecans and walnuts are a safer alternative.  Spinach, too, is a definite no-go.
    • Scott Adams
      I agree with @trents on the sourdough bread--regular bread should be used, or Saltine crackers, etc.  
×
×
  • Create New...