Questions About 6 Yr Old

[Stacy0w]

I was just diagnosed so my two sons need to be tested, right? How accurate are tests for children (1 and 6)? Any specific things I need to tell their pediatrician? Sadly, I hope they find something on my 6 yr old. He is constantly having what seems like allergy issues, disgusting cough, dark circles, stomach aches, constipation, rage issues like none other. We've talked to his ped. before and taken him to an allergist. Everything checked out normal which was frustrating and blew my mind. It's hard to know what to try when everyone tells you he's fine.

[StephanieL]

All first degree relatives should be tested so YES.  Testing on the 1 year old won't be super accurate as they may not have enough damage to elicit a positive result at that age. 

 

Of what you are describing, I am not surprised the allergist didn't find anything.  What you are speaking of doesn't sound like what allergy testing would be looking for. IgE allergy symptoms happen within 2 hours of ingestion of a substance and involve things like breathing difficulty, GI issues including vomiting and skin issues like hives.  

[Stacy0w]

Allergy issues such as congestion, rashes, sneezing and itchy eyes. Allergy issues is just ones of the things I listed. I left out specifics.

[StephanieL]

Well allergy testing and Celiac testing are for different things and food allergy vs. environmental allergy testing are as well.  It sounds like there may be some environmental allergies (eyes, congestion, sneezing).  The GI issues you list very well could be Celiac related as could the rash (there is a rash that is associated with Celiac disease called dermatitis herpetiformis).

 

Anyway, yes the kids need to be tested as should your parents and sibs.  Testing should be done every 3 years OR if there are any symptoms while on a gluten containing diet.

[nvsmom]

When testing kids, make sure they run as many tests as possible.  Kids seem to have a higher false negative rate than adults so they are easier to miss - possibly because the disease is still in the early stages.

 

Get these tests:

• tTG IGA and tTG IgG (tissue transglutaminase) - most common tests, misses up to 1 in 4 celiacs
• DGP IgA and DGP IgG (deminated gliadin peptides) - newer test that is often the best at catching early celiac disease (such as in kids), can miss up to 1 in 4 celiacs
• EMA IgA (endomysial antibodies) - similar to the tTG IgA but detects more severe damage, will rarely be positive if the tTG is not, another that can miss up to 1 in 4 celiacs
• total serum IgA - a control test to determine if they make enough IgA for accurate IgA based celiac disease tests; 5% of celiacs are IgA deficient
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable test that has been replaced by the DGP tests
• Endoscopic biopsy - ensure 6 or more samples are taken, can miss up to 1 in 5 celiacs
• genetic DQ2 and DQ8 tests - 97% of celiacs have one or both of these genes; 30% of the world have these genes but only 1 in 30 develop celiac disease, it just tells you if you are higher risk of getting celiac disease

For all of these tests, except the genetic ones, the kids need to be eating gluten in the 2-3 months prior to tesitng (2-4 weeks for the biopsy).

 

More info on testing is in this report on pages 10-12:  Open Original Shared Link

 

If the tests are negative and the kids are still eating gluten, remember that celiac disease can develop at any time in life and they will need to retest every 2 or 3 years, or as soon as symptoms develop.

 

If the tests are negative, try the gluten-free diet for 6 months anyways.  The kids could be gluten sensitive or in the early stages of the disease.  My kids were only given the tTG IgA test and it was negative.  They had symptoms and I was worried that the test could have been a false negative so they now eat gluten-free.  Their symptoms cleared up and we haven't looked back.  I have no idea if they have celiac disease or non-celiac gluten sensitivity (NCGS) but the diet is helping and that is all that matters.

 

Good luck.

[Cara in Boston]

My son was diagnosed at age 6 (blood test and biopsy) and his ONLY symptom was behavior.  "Rage" is a good word for it.  You could also describe it as "slight frustration = major tragedy" or "inconsolable irrationality"  He was just a mess.  Within a week of being gluten free we had our (relatively) normal little boy back.  Three years later and he is doing great.

[SMRI]

All first degree relatives should be tested so YES.  Testing on the 1 year old won't be super accurate as they may not have enough damage to elicit a positive result at that age. 

 

Of what you are describing, I am not surprised the allergist didn't find anything.  What you are speaking of doesn't sound like what allergy testing would be looking for. IgE allergy symptoms happen within 2 hours of ingestion of a substance and involve things like breathing difficulty, GI issues including vomiting and skin issues like hives.  

 

Actually the dark circles and cough are very, very much allergy symptoms.  It's also very possible that he isn't allergic enough yet for it to register on the allergy testing.  Our oldest had those exact symptoms and nothing showed up on the allergy testing until he was much older.  His allergy dr was very good and understood that and he was treated.  The dark circles under the eyes are often called "allergic shiners".  Doesn't mean it's a wheat allergy or other food allergy so ingesting anything doesn't matter.  The stomach discomfort could come from post-nasal drip so it's not something that should just be brushed aside.  Now, it's likely that he has Celiac given all of the symptoms and family history, but that doesn't mean some of the symptoms are not allergy related too.

[StephanieL]

Those are not IgE mediated allergy signs and symptoms.  Allergy shiners are typically due to seasonal/environmental allergies and not food.  If it is not an IgE mediated allergy then it will not show up on an allergy test and isn't an allergy that can cause anaphylaxis which means it isn't truly an allergy but potentially an intolerances.   

[SMRI]

Those are not IgE mediated allergy signs and symptoms.  Allergy shiners are typically due to seasonal/environmental allergies and not food.  If it is not an IgE mediated allergy then it will not show up on an allergy test and isn't an allergy that can cause anaphylaxis which means it isn't truly an allergy but potentially an intolerances.   

 

So?  Just because celiac is suspected doesn't mean that the other symptoms are not from something else. I don't see anywhere in the OP's post that the child is having anaphlaxtic reactions either.  Most "seasonal/environmental" allergies most certainly do show up on allergy tests....

[StephanieL]

I believe in the second post I made I specifically said that environmental allergies may be an issue.  I understand that there was no mention on anaphylaxis but that is what the tests are looking for.  Also, allergy testing is about 50/50 on accuracy so no, they don't most certainly show up.  

 

 

Perhaps if you have issue with what I say you can PM me. I don't exactly understand the issue you have with that i've said but perhaps a PM could help clear that up.

[greenbeanie]

To the original poster: Sorry you are going through this. It is so frustrating when a child's doctors keep saying nothing is wrong and you know something is. My daughter had symptoms since very early infancy - GI symptoms, but also lots of behavioral and neurological symptoms, as well as immediate coughing and vomiting after eating, which we thought might be from IgE food allergies for a while. She even saw a pediatric GI specialist as an infant, but he did not test her for celiac. I finally figured it out on my own several years later and had to take her to three different doctors before one would even agree to run the blood tests. The other insisted that she was just having tummy aches from anxiety and that I was overreacting, etc. It was incredibly frustrating, but I am so glad that we kept taking her to different doctors until we found one who listened. We were fortunate that all her tests were positive, so we were not left in limbo; it was just getting the right tests in the first place that took forever. But even if it hadn't turned out to be celiac, the thing that made all the difference for us was finally finding a doctor who took my concerns seriously. I made him promise in advance that if the celiac panel came back negative he would keep investigating other causes, rather than sending us away with false assurances like the other doctors had.

So do persist in getting to the bottom of your six-year-old's problem, whether it's celiac or something else. I am generally not one to be pushy, and I absolutely dread having to made a big scene in public, but that was what it took to finally get a doctor to listen. My daughter was diagnosed just after her fourth birthday, and immediately it was clear that we'd found the root cause of the sensory and neurological stuff (as well as the tummy aches). She calmed down within days, her ability to tolerate frustration increased exponentially, and she stopped bursting into tears every time a minor noise startled her. Things were not all rosy immediately, of course, but the improvements were so dramatic that we knew things would just keep getting better and better with more time. And they have. It was a tremendous relief to finally have a diagnosis.

As nvsmom said, try to get the full panel run on your kids, including the DGP tests. For some reason many doctors still seem reluctant to order those, despite what seems to be pretty convincing evidence that they can be more accurate in young children.

Good luck!

[Stacy0w]

Well, we took him for allergy testing and celiac testing. They called and said everything was negative. I was and still am stunned. I didn't even think to ask questions. I just called back to get them to fax me the results. Since he was born he's had issues with poop. As a baby he'd poop as he ate so all day. Now he has constipation issues. He's always congested. Always has the dark circles. Goes in to rages sometimes for no identifiable reasons. Cara in Boston described it perfectly. He's just not "right". We've taken him to several doctors who all said they found nothing. Wg took him for skin testing which showed nothing. He can't go outside if anyone near is mowing or he's itching, sneezing, eyes watering, but no grass allergy found. The latest dr ran what they called the full celiac panel and a full food panel and full environmental panel....all negative. Once I see them I will update with what they actually ran.

[Stacy0w]

Received the results. It shows they only did the ttg Ab iga which was a 1 and the immunoglobin a whiich was 173. All the ige tests were negative as well. The overall immunoglobin e was a 27. I asked for a complete celiac panel and that's what they claim they did, but that's only two of the tests I wanted and then then the immuno e. Hmpf. So this doesn't rule out celiac at all does it? My ttg was fine. It was only my gliadin iga that was high.

[SMRI]

I would take him to an immunologist or an infectious disease doctor.  Have them run the full IG panel--IgA, IgG, IgM, etc.  If his total IgA and IgG are not normal, then his celiac blood tests won't come back accurate.  Ask for the IgG subclasses as well.  IgG3 subclass deficiency has very similar symptoms to Celiac.  Also, the allergy testing isn't definitive, especially in young children, but he obviously has allergies.  Our son was first tested around age 8 and nothing showed up but the allergy dr took one look and said YEP.  He was retested at age 14 and his whole back lit up--20+ major responses.  He just hadn't built up enough histamines by age 8.  

[kcraft08]

As Greeniebeanie says, keep pushing. I took my son to the doctor for 7 months. He kept getting sent home for GI issues and had other things. I never thought of celiac, but I knew something was wrong. It was aggravating to have doctors keep telling me it was a virus and kids get them. They completely disregarded me and put me in the 'crazy parent' camp. Eventually, I finally got in to his doc (yes, I had to see partner docs cause I couldn't take more time off work and would take him in the day off. His doc didn't have an opening). She agreed with me and we ran all sorts of stuff. Came back with super high levels. Push. You're the momma. You know your kid!

[Cara in Boston]

Sounds like you didn't get the whole panel.  My son was positive on 2 of the 5 tests (only the IgG tests) and I was the opposite, positive only on the IgA tests.  His first doctor said he couldn't possibly have Celiac because he had no symptoms (normal growth, no GI issues, etc.) and thought I was just looking for an excuse for his behavior.  ("You've been reading too many magazines . . .")  By that time, I had already been tested and my positive tests were just too much of a coincidence.  We took him to the Celiac clinic at Children's Hospital and they did the endoscopy.  That was found to be highly positive for celiac.  My biopsy was negative, so go figure.  The tests currently available are not 100% accurate.

 

I would push for more tests.  In light of his symptoms and your diagnosis, it seems clear celiac or gluten intolerance is a real possibility.  After all the testing is done, I would try the diet (regardless of his test results) and consider it the "final" test.  I think you will be pleasantly surprised and relieved.

 

My doctor has diagnosed me based on my blood tests and my positive response to the diet, even though my biopsy was negative.

 

Trust your instincts on this.  A gluten free diet can be perfectly healthy (our whole family's diet improved greatly after diagnosis) and you are 100% in control of what you and your family eats.  Keep a journal/log of his symptoms (start now, while he is still experiencing them) and track his progress when you try the diet.  That alone may be enough for your doctor to give him an "official" diagnosis.  

 

We wanted Joe's diagnosis to be "official" to facilitate schools, camps, college dorms, etc. complying with our needs.  So far (three years and two schools later) NO ONE has ever asked for "proof".

 

After he went gluten free, we noticed other changes . . .he looked healthier (still has dark circles, but no longer looks sickly), slept better, no more achey legs (diagnosed as "growing pains"), and he grew . . . like three inches in the first few months.  He was never smaller than average, but maybe he was supposed to be taller than average.  He is on track to be taller than his older brother.

 

His attention span, focus, and even verbal communication (having the patience to carry on a conversation) all improved shortly after going gluten free.  

 

Even without a diagnosis, what I have learned about gluten leads me to believe no one should be eating it.  It causes inflammation and it is not required (nutritionally) in your diet.