Calling It Celiac?

[bambino716]

Hi Everyone!  This is my first post and it is regarding my 3 year old son.  From the time my son started solid food (6 months old) he had GI issues.  He was severely constipated.  The first time it happened he did not poop for 16 days!  Our doctor said it was fine, but my baby was in so much pain. At that point our pediatrician prescribed Miralax to be taken daily.  We started that, and it helped some, but he still needed suppositories at least once a week.  Our ped had to increase the dose more and more as our baby kept adjusting to it.  In my heart I believed that there was something wrong, like a food allergy.  Along with his stomach pain and constipation, his iron was extremely low.  He had cupped shaped big toenails.  We also found out that his teeth were missing enamel.  And on top of that were the unexplained tantrums.  So, I finally decided to eliminate gluten.  We started a completely gluten free diet 4 months ago and he is a completely different child!  We were able to take him off his miralax for the first time in 2 1/2 years.  He was finally able to finish potty training because he poops daily now.  His mood is amazing.  Even other people have asked us what changed.  His iron test the other day was in the normal range.  Also, when he has gluten he is SO sick.  Even the tiniest speck of flour or using play doh has an effect on him.  It lasts for about three days.  He is irritable and constipated.  He complains that he feels sick and he cries more.  I feel like this is Celiac disease.  I want to call it that because I feel like people take it more seriously and I need them to take it seriously.  So, what is the protocol in the Celiac world?  Can I give him that diagnosis on my own?  I do not want to go through all the testing at his age.  And I also don't want to put him back on gluten in order to get the testing done.  He is finally the sweet loving boy I knew he was!  Thanks for any insight and opinions!  Sorry so long!

[shadowicewolf]

No, sadly you really can't. For any school things you need to have a doctor diagnose it. Class room accommodations and such are the reasoning.

 

Luckily it falls under the ADA (Americans with disabilities act) if you are in the US.

 

I've heard of young children getting diagnosed without testing on the basis of a failed gluten trail failing if their symptoms were severe enough.

 

Furthermore, it could alternatively be NCGI (non-celiac gluten intolerance) which mimics celiac disease without the antibodies and the intestine damage.

 

A good start I think would be to have the genetic test done. Celiac is a genetic disease. The two alleles that are commonly found are the HLA-DQ2 and HLA-DQ8. It could give you a good idea of where to start.

[Cara in Boston]

You have enough evidence to convince a well informed doctor to give you a diagnosis.  Good luck finding that doctor.  You will need a doctor's note for schools, summer camps, etc.  You may want to try for testing later when he is older, but if he can't make it through a gluten challenge, that should be enough proof.  So far we haven't had to provide the doctor's letter - our school has been very understanding.  I know it may not always be like this so I am glad we have an "official" diagnosis.

 

Good for you for trusting your instincts and figuring it out on your own.  Everyone else in the family should be tested as well - even if there are no symptoms.

[StephanieL]

Dr. Fassano has 5 criteria for a dx. You need to meet 4 of the 5 and for two of those the patient needs to be consuming gluten for. It sounds like you really need to get into a GI doc. 

 

As stated, if you need accommodations for schools and that stuff, you need a dx. 

[mommida]

Well keep a food journal to see if accidental gluten really gets life threatening.  Unfortunately most doctors will want you to do a gluten challenge to diagnose Celiac.

[bambino716]

Thank you, everyone!  I figured I would need a real diagnosis at some point.  I have a lame pediatrician and I have to find a new one.  I have been asking for a referral to a GI doc for a couple years and have been refused the referral.  I have called the GI docs and they say that I need a referral from my pediatrician.  Ugh.  Now to research pediatricians...  Any advice?  I have been keeping a detailed food journal since we went gluten-free, and even that was not enough to convince my ped that gluten could be the problem.  He said that my son was just finally outgrowing his GI issues.  Same thing with the iron.  And the tantrums.  What exactly does a gluten challenge entail?  How invasive is the testing?  I really have had a hard time finding out exactly what has to be done.  Is a GI doctor the kind I need to see, or is there another type of doctor that could help me?  What about the kits I've seen online (pretty expensive) that do DNA testing for celiac disease?  I also think my 11 month old daughter has the same problems as my son.  Should she also be tested or is she too young?  Sorry for all the questions!  I am a little lost in this new world...

[nicolebeth]

We finally found a GI who believes in non-celiac gluten intolerance. (We think my son has undiagnosable celiac.) The school accepted our word for it (it is an elementary, not a preschool). Have you tried tried talking to them? We don't know if there's a problem with contact gluten or not. (The biggest problem is birthday treats because parents will say, "oh, I'll bring something gluten-free"--and it will be fudgsicles or a homemade baked good that was cross-contaminated. One tends to trust well-meaning, fellow parents to buy something in a box that says, "I am gluten-free" on it, but they don't.)

 

Good luck. I would try speaking to the school first. They must have seen his changes as well. Because it's not imminently life-threatening, they might be more inclined not to require a doctor's note (since an Epi-pen isn't needed, I mean).

[mommida]

You could try working backward. Choose a well respected per. Gastro. Call that office and tell them you need a pediatrician for care and referral. They will give you some names and numbers.

[Takala]

That is brilliant, mommida !

 

Honestly, if your doctor(s) are refusing to refer to specialists like pediatric gastro docs for attempted diagnosis, your insurance is the problem bottleneck, as it's selecting doctors in their plans that are less likely to do this. Try complaining to your state's health insurance regulatory authority.  File a complaint.  You can also research if your particular company has a history of this, or if the state is already monitoring them or even conducting an investigation to see if they are honoring contracts for providing timely care.  This "delay and deny" tactic is unfortunately common with certain plans in the USA, as all these companies every fall try to submit bids for the coming year, and foist certain patients off on other insurance companies.  Then during the beginning of the next year, there's this "rush" by all these people with new insurance attempting to get chronic problems finally addressed.  What a trip. 

 

A "gluten challenge" is when a person resumes a gluten free diet, after being off of it for a period of time, in an attempt to either see what the reaction is, or to create enough antibodies and damage (temporary) to be measurable by blood tests and possibly a biopsy.

[kb27]

Hopefully you will find a doctor who is willing to diagnose your son based on his reaction to gluten, w/o having to stay on it long enough for testing.  

 

But I will admit that we have never been asked for a doctor's note.  My son was diagnosed a year ago.  Strangely, although the diagnosis was easy, it took me about 2 months to actually get a piece of paper from the doctor saying he had celiac.  And the doctor didn't even sign it.  

 

We have had no problems with school or summer camp.  We simply tell them he has celiac and must eat a strict gluten-free diet.  We leave shelf-stable gluten-free food at school for him to have whenever there's a birthday treat, and so on.  We went through all the food possibilities that his after-school program offers and made a list of what was ok or not for him.  Luckily my son is old enough to stand up for himself and say no when he's offered food.  And he'll bring home any treat he's given that he's not sure about (like gum or candy).  I think he doesn't want to get sick.  Your son is a little younger, so that will take time.  

 

So we've had lots of accommodations, and nobody has asked for a doctor's note.  So if you can't get one, it might still be ok.  And eventually your son will be old enough to advocate for himself.  So much depends on the individual who is in charge of your child (at school/camp/after-school program/etc.), and I think a doctor's note becomes most important when that person is unwilling to accommodate you.  

[Cara in Boston]

To find a doctor in your area, check to see if there is a Celiac Support Group or something similar and ask members for recommendations.  

[jacksonsmummy]

My son is 8 and we are I. The process of testing with Dr Fasano at MGH Boston. I had one an elimination diet on him several months ago due to tummy issues, rashes, low grade temps, terrible mood swings..... His IGG was positive after being Gluten free for a few months so he had us put the gluten back or 4 weeks to see if we can tease out the IGA as well. It is awful, the poor kids is miserable BUT it is really important for us to know exactly what we are dealing with. There could be ramifications later in life and the possibility that t could be something else that needs more or different treatment. Are you near to Boston? He us such a kind Dr

[tommysmommy]

An official diagnosis is important... but not nearly as important as keeping your little one well. At this point, you've got it covered...if one grain of wheat makes him sick for days, sure sounds like celiac - treat it like celiac until you find a doctor that you trust to advise you well.  My son was diagnosed at almost 2... the entire family went gluten-free to support the baby and I was following doctors orders to get my 5 & 6 year old tested too  - but as a mom who hadn't slept in 2 months, was angry at every doctor who had misdiagnosed him and was who was still not sleeping because my sick baby was suddenly eating with a passion - meals every 3 hours, my attention was focused on the sick child and not the other two who I considered perfectly healthy. I waited too long to get them tested accurately -  but amazingly they noticed a difference gluten-free - my 6 year old realized that he always had had a stomach ache, just didn't realize what he felt wasn't normal, because he had always felt that way. My daughter, never a tummy ache in her life always got bad bruises and bags under her eyes - suddenly went away.  Would it be best to have an official diagnosis for the school, yep - but my kindergarten and 2nd grader know exactly what they should and should not eat and they know what not to eat!

 

My point, a diagnosis is very important but if you don't have one - life goes on - it's just food, no prescription necessary - make sure its nutritionally balanced -- be cautious, keep it safe - do research - search out and find that right doctor, make sure their aren't nutritional difficiencies that need to be addressed, take vitamins & probiotics & believe with me that some day they'll figure out how to test without a gluten-challenge!

[Juliebove]

Sorry to hear that you need a referral.  That's probably more likely an issue with your insurance.  Some are like that.  My husband wanted us to get a plan that require it but I refused.  He thinks we are paying more for our plan but I think in the end we pay less.  At any rate, for most things we do not need a referral.  And that's a good thing because we need a lot of specialists!