2 Yr Old On Gluten Challenge

[valerieanne]

First post here.

My 8yo dd was diagnosed with DH three years ago, and I was subsequently diagnosed as celiac. We have been gluten-free for three years, including my two year old ds. He was exposed to gluten via breastmilk twice at the age of five months, on doctor's recommendation (research out of UK suggesting lowered incidence of celiac, if exposed at this age). Other than those two early exposures, this is his first time "on" gluten. We started on June 1, with one saltine cracker/day. He started having vomit burps that day. By June 3 he was vomiting several times a day. We stopped the gluten challenge yesterday, but he is still vomiting today.

The doctor feels it is important to get a diagnosis as early as possible, but she doesn't have any experience with celiac in children. After he heals, I may give it one more try. It is always possible that he coincidentally came down with a bug at the same time as the challenge (though, no one else is sick). My question: is there any documented health justification for doing this at age 2? Would it not be better to wait until he is older and capable of clearly describing his discomfort to us? We are strictly gluten-free as a family anyway.

[StephanieL]

With that reaction and the strong family history (Mom and sis) I would think that doing the genetic test would be the next step.  If the genetic test is positive, I think that would be enough for a diagnosis. 

 

Good luck!

[tarnalberry]

Your doctor is... Misguided. He has been diagnosed with DH, so he has been diagnosed with celiac. No further testing is needed. He HAS a formal diagnosis.

[nvsmom]

Your doctor is... Misguided. He has been diagnosed with DH, so he has been diagnosed with celiac. No further testing is needed. He HAS a formal diagnosis.

I think her 8 yo dd has dh but the 2 yo ds is on the gluten challenge and has no diagnosis.

 

I agree that the doctor is misguided though: I can't see any benefit to an early diagnosis if that involves making your son eat gluten and causing him to feel ill for up to 3 months just so the doctor can confirm that he has an illness?! He is already gluten-free and eating in an ideal way for someone with a gluten intolerance, and early diagnosis is just helpful so people don't continue to eat gluten when they shouldn't be.

 

Unless your ds has something in his life that would make a piece of paper with a diagnosis on it mandatory, I would skip it until he is quite a bit older. Why get sick for weeks, and risk possible long term health issues, if he doesn't have to.

 

... but that's just my personal opinion. I have 3 kids who are gluten-free without a diagnosis so I am a bit biased.    Best wishes.

[valerieanne]

Thank you! Yes, I am going to request a genetic test and wait until he is older for a gluten challenge. We had such a great doctor three years ago, I put my full trust in him and followed his recommendations to the letter. We have moved, and it is becoming clear to me that I may know more about DH and celiac disease than our current doctor. I went with her recommendation to do the gluten challenge, instead of listening to my reservations and advocating for my son This has been a hard lesson for me as a mom. I'm going to approach the doctor in a very positive way, because I know this experience is going to impact how she approaches testing for celiac disease in the future. Plus, she is very young and I think this is her first time working up a pediatric case. I'm really just angry with myself.

[stanleymonkey]

Our doc advised against a gluten challenge in our then 3 yr oleg as it made her do sick. You need to tell the doc how sick the challenge made him. Ask to be referred to someone who has some knowledge of celiac disease. It will be good for her to educate her withnrhevresearch oh have done, but if you get seen by someone who has knowledge you may get a diagnosis without having to make him sick. A doctor who knows about celiac disease will give the diagnosis based on his DH diagnosis. I wouldn't worry too much about hurting her feelings, you need to what is best for your son.

[valerieanne]

To clarify, my 8 year old daughter has a DH diagnosis, I have a celiac disease diagnosis, and my two year old son has no diagnosis. We have kept him gluten free as a precaution, on drs advice. At two, they are able to do the blood tests for antibodies with relative accuracy. So, just after his second birthday, they wanted to test him. In order to test him, they recommended a one month gluten challenge prior to the blood draw. I am questioning the necessity of a diagnosis at this point, and frustrated that doctors don't approach this with more empathy in pediatric patients (why was a genetic test never offered?). This gluten challenge has made my son so SICK My daughter's doc was wonderful. Once he had the DH diagnosis, he told us to NEVER do celiac disease testing, because it is just too hard on them and basically irrelevant. DHers must be gluten free for life anyway.

Stanleymonkey, you are right. I need to find a doc with experience. Thank you.

[StephanieL]

The genetic test isn't diagnostic which is why it most likely wasn't offered. It's used to show a genetic predisposition to converting to having Celiac disease. 

 

DH means they have Celiac so yeah, gluten free for life.

 

Again, I would find a GI Dr. who is knowledgeable with Celiac.  Make calls. Ask what the diagnostic criteria they want is based on your family history. See if you can find someone who is willing to take the info they have to dx.  

As for not getting a dx, NVSMom, if the kid will need any accommodations in school, they will need a "formal" dx from a Dr.

[tarnalberry]

Sorry for the misread!

 

I can see why your doctor wants a diagnosis - the thinking is that "it's a serious condition, and we don't know if he has it or not unless we get a diagnostic medical test".  Thing is, his reaction to gluten IS a valid diagnostic medical test, but doctors have become so damn used to particular mechanical, controllable testing processes (think "with the help of machines", no less), that they stop considering that plain old human experience is also a test.  Would I say it's a better test?  Meh.  But it is one.  And it's a valid one.

 

Let's be clear - your son could have started vomiting due to picking up a GI bug.  Yes, it would be a mighty fine coincidence.  But coincidences happen.  You certainly could repeat it.  The chance of the same coincidence happening repeatedly is very, very small.  Even smaller if it happens a third time.

 

But, ask yourself - and your doc - WHY is testing so important at this age?  Maybe the doc has a valid reason ("we need to rule out some other condition in diagnosis this other problem he's having", though you don't say there are any issues with your 2yr old that you're trying to resolve).  Maybe the doc just has the "we've got to know one way or another because we have to know" fallacy (some people can't live with a lack of clarity).  Maybe your son goes to preschool, or an ex, or a family member, or whatever and the whatever won't keep him gluten free without testing.  (I know you don't say any of that, I'm just citing some possible reason for it being important.)  But if none of those are the case.... well, I'm with you - I would wait.

[valerieanne]

Tarnalberry, before this gluten challenge I had a perfectly healthy little boy. I have no strong motivation to diagnose him at this point. In the future, we may need or want an official diagnosis. Until then, I am happy to wait!! Tonight, he is finally keeping food down and resting. He did get a rash, but not a DH rash. Poor little guy.

Gastroenteritis is a random possibility, but might it also just be a new food reaction? My husband is gluten-free in an act of solidarity , and to eliminate the possibility of cross-contamination in the kitchen. However, he isn't above a gluten glutton event when on his own. He invariably suffers the consequences, though he has no history of celiac disease, DH, wheat allergy or intolerance. I assume his body is just not used to gluten anymore, and he suffers in the same way that people who eat beans infreqently suffer their effects.

If I can find a more experienced doc, we may try one more time... but, not until he is old enough to communicate his discomforts. Our daughter suffered excruciating discomfort from the INTENSE itching DH caused her, until she could clearly articulate how it felt.

[stanleymonkey]

The anti body tests are unreliable in 2 yr olds, that's why our soc told us to make our youngest gluten-free and not even bother with testing. Young kids havevtongave horrific damage to make antibodies even lose to the range they givevforpositive. Our immunologist advised that antibody testing in kids under 5 , she said there are too man false negatives at that age and by the time there levels re in the testing range horrific sometimes long lating damage has been done

[nvsmom]

As for not getting a dx, NVSMom, if the kid will need any accommodations in school, they will need a "formal" dx from a Dr.

 

That's not true where I live, but I know it is true in many places. Accomodations is mostly a non-issue for us anyways because my kids always pack more than enough food when they are out of the house, and they know not to eat food from others unless I check it first.

 

My kids all tested negative for celiac disease, but my doctors would only check the tTG IgA. I don't completely trust that test, and they had symptoms so I made them gluten-free even though my doctor declared them healthy and advised against going gluten-free (it's such a hard diet you know ). "Coincidentally" their symptoms have improved greatly since going gluten-free. If I had to wait for a formal diagnosis, my oldest would sill be getting stomach aches and headaches, and my youngest would be still running to the bathroom over half a dozen times per day. In our case, getting a diagnosis was provong difficult so I skipped it. I'll revisit the issue in the future (if they want to when they are older).

[StephanieL]

Accommodations aren't just about eating. They can include things like art supplies, bathroom trips, absences, lunchroom cleaning policy and on and on.

 

For a 504 plan with accommodations, a formal diagnosis is needed in the US.

[valerieanne]

We are Canadian. For the tax deduction (medical diet), a formal diagnosis is required. Additionally, any issues we've had with accomodations have been resolved immediately. Once we explain DH and celiac disease as an autoimmune disorder, not a lifestyle choice, and produce a letter of diagnosis stating that we have a medical need to be gluten free for life - viola! No issues. That is the sunny side of an official diagnosis. We are atheist homeschoolers, so there are no issues involving the school system.

[nvsmom]

My kids are old enough not to eat art supplies and know to wash their hands when done. My kids have portable lunch mats/place mats that they fold out onto eating areas when they eat out. We haven't had any issues with bathroom trips and absences aren't an issue for us - we're homeschoolers too so we aren't in a classroom everyday, it's more about a day here or there, or a half day program.

 

I know what we do won't suit everyone, or even most people, but what we have done works very well for us. It's a shame that so many families have to jump through hoops to get what they need for their kids. 

 

Oh, and we're Canadian too.