New, 2 1/2 Yo Probably Celiac, To Test?

[wmramsel]

My 2 1/2 yo little girl has a gluten allergy.  We went gluten free (not contamination strict) with her November 2012 because of her terrible eczema, and it cleared w/no bad recurrences since.  In looking up dermatitis hepitiformis, I'm realizing this is what we have passed off as "diaper rash."  Then I stumbled on pictures of toddlers w/distended bellies....and recognized my daughter.  She has had growth concerns ever since she was about 9 months old (dropped off the charts and hasn't been on since), dark circles, night terrors, goes from constipated to diarrhea in less than 24hrs, mushy poop despite being mostly on solids, undigested food in her poo.....but for the most part does not have stomach aches or irritability.  

 

I recently gave her cereal with gluten in it by accident, and it corresponds with her recent DH breakout on her bum.  I am hesitant to go back to giving her gluten to do the tests.  I read an article on the benefits of NOT testing due to increased health care costs, life insurance costs, etc. down the road.  

 

Thoughts on choosing not to test?  If we are gluten-free now, and plan on going strict with it to try to control her other sx's, does it matter about an "official diagnosis"?

[StephanieL]

So she doesn't have an allergy but possibly has Celiac correct?

If you will want/need accommodations for school you will need a formal dx. Also I believe they are working of the "preexisting condition" thing and not being able to hold it against them.

[wmramsel]

Well, we introduced gluten last night and it didn't go well.  We ended up in the ER.    After a fight, they drew the blood to do the celiac tests.  We won't be doing a gluten trial again.....

[Deaminated Marcus]

I hope they did more than just the tTG.

Do let us know the blood test results.

Good luck.

[stanleymonkey]

Just to warn you celiac blood tests in young kids are very unreliable, also if the one day of gluten is all she has had since nov 2012 barring the odd trace amount unless horrific damage was done, her gastro tract may be healed and the blood test will be negative.

We cannot have a gluten challenge with our eldest as it makes her horrifically Iill our gastro said a gluten challenge would kill her, but she has no issue with gluten, go figure. We are stuck in the situation of her starting kindergarden in September with no clear diagnosis, and no way of ensuring her teachers will adhere to gluten free.

Also I'd go back to the doctor who gave the diagnosis of an allergy. Unfortunately not all doctors can differentiate between an allergy and intolerance. How did they decide it was an allergy? Did they do an IgE blood test? Skin prick? My eldest had anaphylactic allergies diagnosed by blood tests and skin prick tests. I had a friend told her kid was allergic to lactose which is impossible! To have an issue with lactose you have to be missing an enzyme, and it's an intolerance (hubby is microbiologist!)

I'd get all her medical notes and see what people here's can help you with.

I know how frustrating it is not knowing for sure if it is celiac disease and knowing you'll never find out because the risks are to high.

[wmramsel]

Ok, I realize my original didn't go into enough detail, I'm going to lay out the history.

 

Under 12months old DD would throw up violently for an hour and a half after ingesting any grains.  When she was about 14-15 months, I introduced oatmeal again, and eventually a diet with no restrictions.  But, suddenly she had horrible eczema.  We went gluten free as a last ditch effort in November 2012 in order to try and tame her eczema.  We have had no eczema break out since.  We did not get her tested at all for the gluten allergy- the "diagnosis" was purely from going without gluten and it fixed the eczema problem.  I didn't even consult the doctor before hand- I let her know what we did and the results at DD's 2 year appointment at the end of December 2012, and the pediatrician (who we LOVE) just said to keep doing what we were doing.  

 

Thursday of this week a friend of a friend mentioned that her "diaper rash" might be dermatitis hepitaformis (sp??) and that it was a specific gluten reaction.  I looked up pictures- sure enough, what we had been passing off as diaper rash was DH for sure.  Then I stumbled on some other threads and descriptions.....2 hours later, I recognized my daughter in SO many of the symptoms:  way too small for her age (has not been on the charts since 9 months, was almost diagnosed failure to thrive at 12 months, is 2 1/2 and still in 24 months clothes and less), the "distended belly," the dark circles under her eyes, eczema, DH, goes from constipation to diarrhea in less than 24hrs w/no apparent diet change, has always slept a ton.....

 

So I called her pediatrician Friday morning with my concerns and she wanted to do a "full Celiac blood panel."  So I scheduled the appointment for 2 weeks from Friday, and we (my husband and I) decided it was for the best and gave her a sandwich (2 slices of whole wheat bread).  It was a peanut butter sandwich, but no, she isn't allergic to peanuts- she eats them all the time with NO issues whatsoever.  And by all the time, I mean almost every day.  

Within 15 minutes of eating the bread: she had a fever of 102*, a cough suddenly broke out, her DH was getting progressively worse (painful and itchy, as well as raised and red), she started having eczema spots again, her belly blew up like a balloon, she started having the shakes (like chills), and she started projectile vomiting.  We went to the ER.

 

We went through an older ER doctor who obviously knew nothing about Celiac's and actually suggested that we should continue feeding her gluten and do the test in 2 weeks.....Um, what??!!  She would be dead by then.  We went through the ER resident and finally got the on call pediatrician from our pediatricians office to order them to take blood to run the tests.  I know they will probably come back inconclusive at best- but that is the only time we were going to be doing that.

 

My only hope for the tests is that we have been giving her a small amount of cereal that had malt in it- I didn't know that "malt" is from barley..... (Yes, I am at the low end of the learning curb right now).  It corresponds with the latest breakout of DH......

 

On Saturday, she still had a fever, her rash was still getting worse albeit slowly, still has a cough, and woke up with a 3rd type of rash that appeared on her legs.  Her mood swings were out.of.control. and she is still very shaky- weak-like.

 

Today, her rash is no longer getting worse (we have been slathering her in hydrocortisone, benadryl seems to be doing nothing), she still has a low grade fever despite being on a tylenol/ibuprofen regimen since Friday, still has the cough, and is still shaky.  Oh, did I mention the mood swings are reminiscent of my teenage years??  Seriously, how can a toddler be THAT moody??  She is a very pleasant, happy girl off of gluten.  I don't know this child at all......

 

Please help.  I don't know where to go from here, and I don't know what to expect.  I don't know what to advocate for....I love our pediatrician, but I also want to be well informed enough to know where to go from here just in case she isn't as proactive as I would like.

 

Thank you!!

[wmramsel]

Also, is this a correct "quote" correct:

 

Celiac disease (also spelled “coeliac”) is an immune reaction, a severe sudden onset allergic reaction, to the protein called gluten. 

Gluten intolerance often has a slower onset than celiac disease, and may be hard to diagnose due to the broad range of symptoms and causes.

 

 

Is Celiac Disease an allergy? and then there is gluten intolerance?  I'm so confused with what I'm trying to read online

[Brandiwine]

Oh my God my heart is breaking for you and your baby right now! It sounds like you are doing the best you can, you know for sure she can't have gluten that reaction is all you need! When she goes into school this year and you speak with the staff I'm sure they will be understanding, I don't see why they would go against her diet knowing it will make her sick. I talked to my sons teacher and she didn't ask if he was diagnosed. This sounds like celiac to me. I sure hope she heals quickly, my heart goes out to your family!

[wmramsel]

She still has a fever today, and is sooooo irritable!  Her rash is still sore, but it is getting a little better.  We went to the pediatrician and the Celiac tests were negative- but like previous posters said, the doctor said it doesn't really mean anything.  She gave us a referral to an allergist and one for a gastroenterologist.  I don't think we are going to go to the gastro- like a previous poster said, there wouldn't be any damage for them to see.  I don't want to put her under anesthesia, it makes me nervous.  And I don't want to put her through that if it isn't going to show us anything.  So off to a recommended allergist it is!

 

My pediatrician said she didn't completely understand all the differences in gluten intolerance, allergy, and Celiac, so she had no problem referring us to whoever we wanted.  I have a recommended allergist, and I read that Celiacs tend to have other allergies, so I'm going to ask for a full range of allergy tests be done.  I want to make sure we aren't inadvertently making something worse.  

 

Advise from anyone?  I feel so clueless and helpless

[frieze]

She still has a fever today, and is sooooo irritable!  Her rash is still sore, but it is getting a little better.  We went to the pediatrician and the Celiac tests were negative- but like previous posters said, the doctor said it doesn't really mean anything.  She gave us a referral to an allergist and one for a gastroenterologist.  I don't think we are going to go to the gastro- like a previous poster said, there wouldn't be any damage for them to see.  I don't want to put her under anesthesia, it makes me nervous.  And I don't want to put her through that if it isn't going to show us anything.  So off to a recommended allergist it is!

 

My pediatrician said she didn't completely understand all the differences in gluten intolerance, allergy, and Celiac, so she had no problem referring us to whoever we wanted.  I have a recommended allergist, and I read that Celiacs tend to have other allergies, so I'm going to ask for a full range of allergy tests be done.  I want to make sure we aren't inadvertently making something worse.  

 

Advise from anyone?  I feel so clueless and helpless

can the allergist do a biopsy? if not, a derm would be good.

[stanleymonkey]

Have you been referred to a pediatric allergist or a regular one? I'd push for a pediatric one I'd they haven't , regular allergists don't always understand how allergies manifest in kids. Usually allergists are immunologists as well, spit may be worth asking about celiac disease, and the allergist will be able to refer to a dermatologist.

Our daughter allergist was furious that our daughters weren't given a diagnosis of celiac based on their symptoms and response to diet. And she would have sent us to a derm, but we had already gone gluten free by that point and the rash was gone.

Good luck

[wmramsel]

I requested a specific pediatric allergist.  We haven't been to the allergist yet, so I guess it will depend if the rashes are still there when we go.  I will definitely ask! Thank you!

[StephanieL]

The reaction you are speaking of sounds much more like a "true" IgE mediated allergy. One for which she should have epi pens for and in the US you would qualify for a 504 plan to keep her safe at school.  I'm thinking it isn't DH you are seeing but hives.

 

Celiac is an autoimmune condition that makes the body attack itself.

An intolerance is when your body rects with other forms of immunoglobens to something.

[wmramsel]

The DH is not hives- they are blisters.  I've had hives before, and these definitely are not that.   Well, some are telling me it sounds just like Celiac, others tell me it is just like an allergy.  So far, the medical professionals aren't sure.