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Testing Questions For 2 Yr Old Dd

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My 2 yr old started having symptoms at 14 months, and after 3 months of symptoms the peditrician suggested we go gluten-free. Instant change, so that was reason enough to suspect Celiac.

I had been told that the testing would require scope and I was not ready to do at that time. Didn't get info on blood testing. Now that I have more info and she is older, I want to pursue testing.

But we have been gluten-free for about 9 months, though there is the possibility that she was getting some cross-contamination from cast-iron pans and a few wooden implements (still figuring all of this out!), she has had some symptoms lately that make me think that she could have gotten some gluten.

So I don't know if a blood test would show any antibodies at this point.

And I keep reading about how only 5 labs are accurate for blood tests, which labs?

And how do I make sure that the right tests are done, what should they be testing for?

If I have to put my DD back on gluten, for how long, and how much gluten?

This is hard because I don't want to make her sick if I can help it, but for preschool and with the constant battle with my family over food when DD goes to their houses, it would help to have a concrete diagnosis.


S. Johnson


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A number of months and a fair amount of gluten. I've heard numbers on the length of time from one month to six months, and the amount of gluten from one slice of bread a day to a normal diet's worth. I'm sure others will add more, I just wanted to let you know it's not "a slice of bread the day before the test".


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My 2 1/2 year old was just diagnosed in June. He had his blood tested first, and it was sent to the Mayo Clinic. The results were back within a week. He then had the endoscopy, which frankly was a breeze and WAY easier than the blood draw! They knock them out at that age, so he had no idea anything even happened. In fact, on the way home he wanted McDonald's. Sigh. I know they have to be consuming gluten prior to the blood test to have it be accurate, but I have no idea for how long. You could go to and email them? Your daughter should also be consuming gluten prior to the endoscopy, otherwise the intestine could have healed and no damage will be seen.



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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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