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My Toddler Is Being Tested Soon And My Baby Is Sensitive
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My toddler is being tested for celiac's soon with the blood complete antibody profile and the gene test. Do her symptoms sound like she might have celiacs? 

 

We have always thought my daugher (22 months) had a bit of a bloated belly. She is on track in weight and height though, actually really tall for her age, so no concern there. When she was younger, she never had "normal" stool. It went straight from merconium to green/mucusy/bloody. Eliminating dairy from my diet (breastfeeding) seemed to help somewhat, but never completely. Fast forward several months and she woke up one day from a nap with bloody stool. I took her to a naturopath who said to eliminate gluten and dairy and see if that helped. A week later her stool was tested in a lab for the presence of blood and came up negative. We continued on the dairy/gluten free diet for a few weeks. Then I introduced dairy, and there was no bloody stool. I introduced gluten a few days later, and there was bloody stool again. Took her (and me, she is still breastfeeding) off of gluten and made another appointment with her naturopath. She said to put my daughter back on gluten and is ordering a blood test for her in the next few weeks. As soon as she ate gluten again, 1 day later the bloody stool is back, again. Now her only symptom is bloody stools, I don't notice any diarrhea or pain. She does have thin toenails though and I wonder if that could be related.

 

Now for my baby, he is 5 months old and breastfed as well. About 2 months ago he came down with an awful case of eczema on one cheek. It was weeping and he would scratch his face and head so bad that he would often bleed onto his onesie. In the process of eliminating dairy and gluten from my diet to see if my daughter's symptoms would improve, my son's eczema cleared up in a few days. When I introduced dairy and gluten back into my diet, it came back worse than ever. Now since I have eliminated gluten and dairy from my diet again (my daughter eats dairy, but I don't because I think my son is sensitive), his eczema disappeared again within a few days. I'm not quite sure if it's from the dairy or gluten or both though, but I'm fine with not knowing, I just want him not to be in pain and itchy all the time.

 

Does it sound like my kids might have celiacs? Or sensitivity? I am lost about what to do. My toddler's GI doc thinks that she doesn't have the symptoms of celiac's because she is on track for her growth and development. He thinks she has a birth defect in her intestine and wants to do a colonoscopy to see. But, why would it improve without gluten? What do you think? Any advice? I'm so lost on it all.

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Sounds like it could be celiac to me.  :(

 

Not all celiacs have their growth affected. I have had undiagnosed celiac since infancy (tummy aches, "growing" pains in my joints, headaches, constipation since as far back as I can remember) but I was really tall. Off the growth charts. I stopped growing at age 12 when I was 5'8".

 

My kids, who tested negative for celiac disease but have a definite gluten intolerance are very different. My youngest is very tall (90th percentile) but my oldest is short (25th percentile)... everyone is different in how it affects them. Your kids' GI is pretty narrow minded when it comes to celiac symptoms.  :(

 

When the blood tests for celiac disease are done, try to ensure as many tests are done as possible. This is the full panel:

tTG IgA and tTG IgG

DGP IgA and DGP IgG (best tests for kids and detecting early celiac disease)

EMA IgA (detects more advanced cases)

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests that are thought by some to show celiac disease or non-celiac gluten intolerance (NCGI))

 

Make sure they eat gluten in the weeks prior to testing.

 

If it is negative, you could push for an endoscopy (colonoscopies won't show celiac disease). Some celiacs have negative blood but still have plenty of villi damage.

 

If all ends up negative, the kids could have NCGI. There are no great tests for NCGI at the moment, even though about 10% of the population has it, but a positive reaction to the gluten-free diet is diagnostic. Just give it a few months before you judge if it helps... sounds like you've got a good idea that they are NCGI at the very least.

 

Good luck with the testing.

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If my daughter ate gluten all the time but was gluten free from 11/1-11/30 and then ate gluten from 12/1-12/3 and then gluten free from 12/4-12/12, do you think it is too soon to have her blood tested on 12/31?

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My daughter (7yrs) was diagnosed a year ago and is in the 95% in height. She is the tallest in her grade. Only when she was 10 months old and vomiting very often did her weight drop percentiles. Since that age she has been on track with her growth. Everyone seems to have unique sets of circumstances.

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My daughter was diagnosed with celiac just after she turned four, after many neurological and digestive symptoms plus awful diaper rashes and vomiting that began is very early infancy. We knew from early on that it was a food-related problem because she improved immediately when I suddenly stopped breastfeeding and an allergist put her on Neocate formula when she was 6 months old (we did this out of desperation - I was very committed to breastfeeding and was heartbroken to stop, but my daughter's problems kept worsening even after I'd eliminate all of the top eight allergens from my diet for several weeks and we were out of options). Anyhow, after thriving briefly on Neocate, everything went downhill again when she started solids. It was several more years before we finally figured out that it was celiac, and now she's doing great.

One of the main reasons her her diagnosis was delayed for so long is that doctors kept telling us she couldn't really have a serious problem because she was tall for her age. She was in the 90-95th percentile for both height and weight, at almost every check-up since birth. She looked very healthy, but wasn't. Many doctors still seem to have the misconception that a child can't have celiac unless they're short and underweight. Keep pushing and don't let anyone use that as a reason to dismiss your concerns!

Good luck, and I hope your little ones feel better soon.

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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