Any celiac parents out there that can help me?

[ErinluvsKen]

First of all...THANK YOU so much for taking the time to read this post!

I need some advice/help/direction from anyone who has experience with celiac or other GI issues....

My older DS (age 5) has been having uncontrollable watery diarrhea since mid-October.  He got a stomach virus on October 19th and has not had a normal bowel movement since.  He can't pass gas without having an accident (poop) and constantly complains of stomach pain (which is definitely worse after eating large amounts of wheat based products).  He has never slept through the night in his entire life and wakes up more frequently than ever crying (we ask if he's in pain, but he's not usually able to give us an answer as he is half asleep).

We recently tested his stools for parasites, giardia, C.Diff, worms/ova, blood, and infections (like E.Coli and Salmonella).  He tested negative for everything.

The next step with the pedi was to run bloodwork for allergies, including Celiac.  He tested neg for everything (shellfish, nuts, milk, cat dander, dog dander, soybeans, etc.).   The one red flag was an elevated IgG result.  That was 56.

We have an appointment on Dec. 28th to see a Pediatric GI Specialist to get some more answers, but in the meantime, I'm very diligently trying to get as educated as I can!  I know that a biopsy of his small intestine will tell us more to the story and that bloodwork in children can be very unreliable when used as a sole means of diagnosis...

I guess this is a long-winded way of asking if I'm doing the right thing....AND to see if there other reasons for his symptoms and elevated IgG....

Thank you for your time!

Erin

[painefaria]

I have probably had Celiac's for longer than I care to acknowledge but went Gluten free for DS when he was about 3-4 months.  With that being said both DS and I had negative blood work for Celiac.  We had multiple appointments with the allergist and she stated that if it gets better when you stop the food then LISTEN to your body.  Honestly I would start taking the gluten out of his diet and see how he responds.  It will take a few weeks before you see a great response.  You also may need to take out dairy as some people with celiac have problems with Caesin (a milk protien that is hidden in more products than you believe)  If he responds well great!  If you do decide to do the biopsy don't change his diet until after the procedure.  They are looking for the reaction to the gluten if he hasn't had any in 2 weeks the gut starts to heal and it would alter the results.  Good Luck.  If you have other questions please PM me.

[ErinluvsKen]

Thank you so much!  I really appreciate your response! Our pedi recommended going GF for a couple weeks and then if we see improvements we can assume it's Celiac.  I'm on the fence about the biopsy.  I've heard of some people getting inconclusive results from that too.

[scsigrl]

If you want a diagnosis, DO NOT REMOVE GLUTEN.  The only way you are going to get any kind of accuracy with tests (blood or scope) is to be ON a gluten diet.  If you don't care to get a diagnosis for one reason or another (it isn't important for some people) then going off and seeing how he does is fine.  

Also, you can't assume it's Celiac's even if he does improve.  It may be a wheat intolerance which is NOT the same as Celiac's.  It is possible to have a neg. blood test and still have it, very true.  You can also have an inconclusive biopsy (this is where we are at) and have it.  Very scientific, I know ;)  If it were me and he had a negative tTG I would opt for the genetic test next.  80% of people have one or both the genes for it so it isn't all that helpful but it WILL tell you if it is NOT Celiac's.

Good luck!  It's a lot to learn but manageable in time!

[ErinluvsKen]

Thank you scsigrl!!!!!!!!!  I read that the vast majority of children being diagnosed with celiac carry at least 1 copy of the HLA-DR3 gene so I did request that test today.  I hope that combined with our trip to the specialist will give us some more answers.  Thank you both for the advice to keep gluten in his diet until we are done testing.  It's been very tempting to just go GF and see if that brings him some relief.  The diarrhea is so hard for him and I hate for it to continue, but I do want conclusive results if possible.

[scsigrl]

Oh, I forgot to add that my DS went 100% GF 6 months ago.  His abnormal BM's did not clear up till over the last month or so when we added an AMAZING probiotic (Custom Probiotics).  He has for the first time in 4 years (yes, his entire life) has normal BM's.  YEah!!!!

[Aletheia]

It's true- it's a hard decision.  Either go GF immediately to see if it helps, and thereby get healthier faster, or continue to eat gluten to get a diagonsis.  I remember hearing somewhere that some insurance companies will cover special diet foods, or at least part of them, if you have a diagnosis.  But I think the greatest argument for getting a diagnosis is the peace you and your son will feel about sticking with the diet-- it will feel less like a choice and more like a medical condition if you have the paperwork, ykwim?

I think this is the best book out there about celiac disease: http://www.amazon.com/Celiac-Disease-Peter-H-r-Green/dp/006076693X  I would definitely read it before you order blood tests to make sure you do it right the first time and do not have to get blood taken more than once.  If your child is undernourished, blood draws can be harder.  My son had a hard time recovering from them.

I think the website for the celiac disease center where that author works is also helpful.  http://www.celiacdiseasecenter.columbia.edu/G_Contact/G01-HOME.htm

You might also begin to look into enterolabs-- a not-widely-recognized stool test for celiac indicating (but not proving) antibodies in stool.  You can order the tests from home.  It is something of a mystery why the creator of the test has not gone through the standard protocols to get his tests more widely accepted by the medical institution, but there are people who swear that it is a good test- better than the blood tests.  If you can afford it, it's an easy way to add more information to your investigation.  (About $300)

It has been a while since we went through all of this-- 6 mos.-- but I remember the anxiety.   Our story probably has little bearing on yours in its specifics, but do know that I was fairly convinced we were dealing with celiac disease, and in the end it all came to naught (or not naught, but other things-- multiple food "allergies" that were hard to pin down.)

Good luck to you, mama.  

[CrunchyChristianMama]

I would recommend looking into testing through Enterolab.  We are in the process of doing so right now because we are 95% sure that our older DD is celiac.  With their testing it doesn't matter if he is on a gluten diet or not and they combine a stool test with the genetic testing.

https://www.enterolab.com/StaticPages/Faq.aspx

[ErinluvsKen]

Great advice and great resources Aletheia!  Thank you!

Thank you for the information on the Enterolab test CrunchyChristianMama!  It's nice to know that there's a test that won't require me to continue poisoning DS!  I've requested the test for myself too!