Gluten Test/challenge--Do I Make My Kid Start Over?

[MomProf]

Hi all, 

Newbie here--apologies if the answer is somewhere and I wasn't typing the right search.  We're 18 days into a gluten-free, dairy free test to see if gluten and dairy are the culprits in our kids' health problems--and my son had a slip-up yesterday.  Not just crumbs, he ate some cake at a birthday party.  Is there a protocol for what to do with a slip-up during an elimination period?  

 

Even worse, we had challenged dairy the day before (argh!) and were going to do the "challenge" part at least a few days apart, since the dairy did prove to be a problem for my son.  We know you're supposed to separate the challenges so you can tell what's causing the problem.  But now that he got a hefty dose of gluten, what should I do?  Do a full-on challenge of gluten?  

 

Even more info: he did do badly last night after having the gluten, but it was a croup attack--which I have no way of telling if it's related to the gluten or just coincidence?  

 

Thanks for any advice!  We were trying to do everything just right but don't have enough guidance.

ProfMom

[kareng]

I am not really sure what you are trying to do, so I can't give you any advice on that.

 

I wish you would have gotten your kids tested for Celiac before taking them off gluten.  That way, you could have had a definitive diagnosis to work with.  Helps  for things like schools, hospitals and summer camps.  When he is older and eating away from home, he would have a medical reason to continue eating gluten-free.

 

 It can be hard for an adult to eat gluten-free in social circumstances, even with a Celiac diagnosis.  For a kid its even harder. Most parents of Celiacs send the child with his own safe treats or even go and keep an eye on him.  Many call ahead and ask what is being served and enlist the help of the birthday parents

 

 

Open Original Shared Link

 

"Why do you insist I eat gluten for a diagnosis when I feel better on a gluten-free diet?

Five reasons exist as to why someone might feel better on a gluten-free diet. It’s crucial to understand which of the five is the cause in order to implement a safe dietary program......"

[BlessedMommy]

As a mom who tried to take her kids gluten free due to bad advice, I highly recommend getting them back on gluten and running a full celiac panel.

 

This year, I gluten challenged my daughter in preparation for testing her and she did fine! Apparently her symptoms were due to something else, because she eats gluten now, and they've resolved anyway. After 13 weeks back on gluten, the doctor ran the tests and all of the tests came back clearly negative.

 

I feel frustrated that I wasted nearly 5 years trying to feed her gluten free without a good reason to do so. 

[nvsmom]

I agree that it is a good idea to go back on gluten for a while and then test for celiac disease.

 

Normally, a gluten challenge is the name of a period of time prior to celiac disease testing when the patient eats the equivalent of about 1-2 slices of bread for 8-12 weeks.  Your son has only been gluten-free for 18 days so he may not need to resume eating gluten for the 2-3 months that most people would require if they had gone gluten-free for a few months.  Resume gluten consumption for a month or so and then get tested.

 

These are the tests:

• tTG IgA and tTG IgG
• DGP IgA and DGP IgA (tests that work well for children)
• EMA IgA
• total serum IgA (control test)
• AGA IGA and AGA IgG (older and less reliable tests largely replaced by the DGP tests)
• endoscopic biopsy -  6+ samples

Get as many tests done as possible because these tests can miss up to 1 in 4 celiacs. The more tests done, the more likely it is to be caught.

 

If you choose not to test for celiac disease, your son will need to go gluten-free for at least 3 months, 6 months is much better, before you judge the effectiveness of the diet. Some symptoms can take months, or even years, to improve, especially in those individuals who keep making autoantibodies for a while (months to weeks to years) after going gluten-free.  I'm 2.5 years gluten-free, and I was still seeing improvements at 2 years gluten-free. In fact, I fel worse at 3 months gluten-free than I did before going gluten-free.  

 

If he is trying the gluten-free diet, give it many months, and make sure he is 100% gluten-free - no crumbs, seasonings, shared toasters, or cooking utensils that could hold gluten containing particles should be used or consumed. If he is a celiac, that cake could set back his health a few weeks (with inflammation and internal problems) despite what any symptoms would show.

 

As an aside, I have three gluten-free kids, I find it works best if I send cake or brownies to their parties along with fruit and chips. Most people don't "get" how easily our food can be contaminated and put the gluten-free food in with the normal food, or try to make gluten-free food using contaminated ingredients (like sugar from a canister that has some flour in it).  If your son is gluten-free, you'll have to pack food for him most of the time that you go places.

 

Consider trying the gluten-free trial if he tests negative for celiac disease too.  Non-celiac gluten sensitivity (NCGS) has the same symptoms as celiac disease but there are no diagnostic blood tests for it at this time.  Only a positive response to the gluten-free diet will indicate the presence of NCGS or not.

 

Best wishes.

[MomProf]

Thanks for the replies!  Forgive the long post--with this new info below, would you still recommend that I put them back on gluten and test?  

 

 Here's the context: I didn't expect to find celiac in the kids; only looking for NCGS because my daughter has Hashimoto's (hypothyroid) and fibromyalgia (at only 8!) (I also have Hashi's and alopecia).  In my son's case, I was just hoping the Gluten-free Casein-free diet might help with anxiety/moods the way I heard it helps some kids on the autism spectrum; he has mitochondrial disease but has never been labeled autistic.  Both kids have mild ADD and sensory processing issues.  

 

So, I was just grasping at straws to see if this might help their health.  My daughter did recently have a RAST blood test (the kind that's known for not being so accurate, right) that showed low sensitivity to wheat, but some sensitivity to most of the foods in the pediatric panel of 12 allergens.  Perhaps more relevant, she's always been an ezcema kid and constant ear infections.  As a breastfed infant, she had stomach problems to the point where they put me on a complete elimination diet for weeks to see if it would help but nothing was conclusive other than dairy.  There is no known celiac disease in our families but lots of autoimmune stuff like thyroid.

 

Thanks again for any help!  

[kareng]

 

 Here's the context: I didn't expect to find celiac in the kids; only looking for NCGS because my daughter has Hashimoto's (hypothyroid) and fibromyalgia (at only 8!) (I also have Hashi's and alopecia).  In my son's case, I was just hoping the Gluten-free Casein-free diet might help with anxiety/moods the way I heard it helps some kids on the autism spectrum; he has mitochondrial disease but has never been labeled autistic.  Both kids have mild ADD and sensory processing issues.  

 

 

 

 

- Hashi's is one of the diseases associated with Celiac.  Even so, I would still want to know for sure.  Going gluten free/lite might be OK for Hashi's but it isn't for Celiac disease.  

 

 

 

Open Original Shared Link

 

 

What other autoimmune disorders are typically associated with those who have celiac disease?

Those with an autoimmune disorder are prone to get other autoimmune disorders, but there is no guarantee that this will happen. The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes.

Celiac disease is more frequent in those who have the following autoimmune conditions:

• Type 1 Diabetes Mellitus: 2.4-16.4%
• Multiple Sclerosis (MS): 11%
• Hashimoto’s thyroiditis: 4-6%
• Autoimmune hepatitis: 6-15%
• Addison disease: 6%
• Arthritis: 1.5-7.5%
• Sjögren’s syndrome: 2-15%
• Idiopathic dilated cardiomyopathy: 5.7%
• IgA nephropathy: 3.6%

[nvsmom]

I completely agree with Kareng. Your kids and you should get tested for celiac disease.  Celiac is an autoimmune disorder just like hashi's.  If you look around the board at people's signatures, you'll see that Hashi's is quite prevalent - I've even heard as high as 1 in 10 celiacs have it.  

 

I have Hashi's, another autoimmune disease, and my arthritic like pains started when I was in elementary school too.  I have cousins and an aunt with celiac disease, multiple family members with Hashi's, then there are some with MS, RA and other problems.  Definitely get celiac disease checked out, and don't dismiss it if the results are negative.  Early celiacs don't always test accurately, and celiac disease can develop at any time in life so if you suspect it, and are eating gluten, it should be checked out.

 

Get checked.

 

BTW, we suspect Aspergers in one of my boys but have never confirmed the diagnosis.  Going gluten-free helped him significantly, and dairy affects him too.  He is much more even keeled, less emotional, and more focused when eating well.

 

Good luck.  

[BlessedMommy]

Keep in mind that even if the kids do have NCGS, NCGS is only diagnosed through the process of exclusion. You can't say for sure that they have NCGS and not celiac, unless you've first excluded celiac as a possibility through testing.

[MomProf]

Thank you so much for the help and information.  You've convinced me to put them back on gluten, so we can test first (but not right away, since they had 17 days completely gluten-free).  My daughter has a big round of bloodwork coming up anyway, so I'll put it in there.  

 

One more question!--thanks for being so patient and helpful!  So I added gluten back in on Saturday after seeing these responses.  And that afternoon, when my son was "starving" while he waited for dinner, he ate some carrots and threw them up.  He's never thrown up carrots!  So could that be a delayed reaction to eating gluten that late morning and lunch?  After the carrots came up, then five, ten minutes later he sat to dinner and ate it with no problem.  He did not seem to throw up any of the gluten foods (donut, bread), and didn't have stomach problems after!  I'm so confused!

[nvsmom]

Gluten containing food can cause a reaction in a matter of minutes or sometime in the next couple of days. It could have been gluten or some other reason... it's hard to say.