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Need Validation

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I was wondering if someone could point me to some really good links that talk about gluten/casein free to help with children? My husband is on board with going gluten/casein free but doesn't "believe" that it will make a difference and I need him on my team regarding this.


We are in the process of getting my 5yo (boy) evaluated and one thing that was suggested to me by numerous people was having him go gluten/casein free.


Current symptoms:

Undiagnosed Allergies/Asthma - tested negative for everything but needs inhaler and takes Clariten daily to keep asthma at bay

Short Attention Span

Difficulty even getting attention and his focus - his hearing has been checked.


Dark Circles Under Eyes

Pale skin

Overtired - still naps daily at 5 1/2

Clumsy/Poor Gross Motor Skills

Keratosis Pilaris (I have this as does my 4yo daughter - could be genetic)


We have not yet had him screened for Celiac as he doesn't really seem to have any obvious symptoms of that.  He has other behavioral symptoms - he's just very different from my other two children... I'm pretty sure he's got sensory issues which we just cope with because nothing is out of control in its severity.  We suspect he might be on the autism spectrum - on the low end, but are not sure if we will seek a diagnosis at this time.  He's my dreamer and his quirks are what I love best about him, but he does stand out because of them. 


As far as other allergies in the family:


MIL - too many to keep track of and constantly changing

Father - environmental asthma

Mother (me) - environmental asthma, chronic digestive issues (undiagnosed and needs its own post)

Brother (age 8)  - Allergic to food dye; sensitive to high fructose corn syrup

Sister (age 3) - digestive issues (constipation, sour stomach - also undiagnosed)


I think my husband is skeptical because my MIL has so many allergies - too many to keep track of and I'm not sure he knows how many are legitmate and how many are anxiety-induced.  Any informative links that deal with this would be appreciated!  Also wondering if its worth getting tested for Celiac before going gluten free? I'm skeptical of the panel just because of the false-negative rates.  Is it a blood draw? We had a really traumatic experience with the allergy testing on this same child and I don't want to put him through that again.

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I would test him while he is eating gluten.  I'm not sure why you think there are so many false negatives.  This seems to be some rumor or a left-over from older test methods.  There is lots of info on the Univ of Chicago site you might want to read.





In blood tests, are false positives less common than false negatives?

Even though blood tests are quite accurate, they are falsely positive 1-3% of the time (i.e., being positive without the person having celiac) and, although less commonly, falsely negative 1-2% of the time (i.e., being normal when a person actually has celiac).




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I would strongly recommend getting the celiac tests before going gluten-free. My four-year-old daughter was just diagnosed, and she's had many of the symptoms you mentioned. At various points she seemed to have multiple food allergies that we could never figure out (multiple negative rounds of food allergy tests but immediate improvement once I stopped breast feeding and she was put on a super-hypoallergenic prescription formula called Neocate), high muscle tone and retained infant reflexes much longer than normal (making a neurologist suspect CP and/or seizures at one point), tons of spitting up as a baby, sensory integration disorder, erratic responses to hearing tests but normal/early language development, tons and tons of tantrums for no apparent reason, general irritability almost all the time, clumsiness, excessive urination (but normal urinalysis), joint pain, keratosis pilaris since infancy, and fatigue (sleeping 12-13 hours a day and still tired, but not anemic). She did have stomach pains too, which we thought was just motion sickness for a long time, but her behavioral and neurological symptoms were much more prominent than the digestive ones.

She was only officially diagnosed with celiac last week, and she's been gluten-free less than two weeks, but already we've seen a HUGE improvement in almost all of her symptoms, especially the behavioral ones. It almost seems too good to be true! I still find myself bracing for the next inexplicable tantrum, only to find my child smiling instead.

Regardless of what you decide to do about testing, trying a gluten-free diet seems like a good plan. But if you have any suspicion at all that it could be celiac, it would be much better to have him tested before going gluten-free to increase your chances of getting accurate results.

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I would get testing done too. If you have a wide variety of tests run, then the chances of celiac disease being missed go way down.  The tests are:

  • DGP IgA and DGP IgG  - a superior test for detecting celiac disease in kids
  • tTG IgA and tTG IgG
  • EMA IgA
  • total serum Iga (control test)
  • AGA IgA and AGA IgA


The first three tests detect intestinal villi damage which is the defining symptoms of a celiac's gluten sensitivity. The fourth test is a control test. The last test detects a sensitivity to gliadin and is thought to work for both celiecs and the more common Non-Celiac Gluten Sensitive (NCGS) people (who have no villi damage but every other celiac symptom).  He must be eating gluten to get tested.


The sensitivity of the tests (how often they catch celiac disease) and the specificity (how often positive tests are caused by celiac) on page 12 of this report: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf  It's a good read.


My son, who we suspect has Aspergers, tested negative for celiac (doc would only run the tTG IgA) but we made him gluten-free anyways. He also gave up all source of casein except parmesan cheese, and says he feels much better for it. 


My cousin's 11 year old son was diagnosed as a celiac recently because he is ADHD and having some cognitive isuues. He has never had any GI issues.


Special Diets for Special Kids is a good resource for gluten-free and cf foods and ideas. I learned a lot from there.


Good luck.

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Thanks for the replies. We live close enough (and don't need referalls) that I can take him to a specialist in Boston, I just need some "extra" validation I guess.  We do suspect he may be on the spectrum, but its very low I think. I'm only thinking about diagnosis because he's getting to be school age and if we do send him to school (we homeschool) he would probably need an IEP. 



Will check out all the links and do some more research here too. Thanks.

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