Toddler's test results

[Katasaurus]

Hi there, I'm hoping someone can give me some insight in to my 16 month old's test results.  Apologies for any wrong acronyms, I'll try to make this short! 

Background:   Since birth he was miserable 90% of the day, lots of reflux problems, ectopic kidney and had torticollis (fixed thanks to physio).  He was and still is failure to thrive.  Around 13 months old he started having extremely foul diarrhea 4+ times a day and a very distended belly.  It took 4 weeks of this and my son losing weight before our family doctor took us seriously and requested bloodwork since my mother has celiac.  At the beginning of December he had blood drawn for tTG IgA and DGP IgG.  Doctor said she would call with results if there were any.  The same week we saw a pediatric dietician who suggested we try an 8 week elimination diet (no nuts, soy, dairy or gluten) to try and figure out what was causing the bloating, diahrrea and eczema.  Within 3 days it was like having a completely different child.  He now spends most of the day smiling, happy and running around!  He finally started being more vocal too, though we are pretty sure he is speech delayed but they won't assess until 18 months.  He hasn't gained any height or weight since starting the elimination diet though.  

We are moving to another province in a couple weeks and the wait list for a doctor is very long so I requested his medical records from the hospital here so I could have them in hand in case something went wrong with his kidneys.  I picked them up today and saw the results of his blood test and did some googling and one of them is pointing towards celiac but I just wanted to be sure.  

We won't even get into the fact that the doctor NEVER called us to discuss this.  We have had a lot of problems with her over thelast 2 years concerning very serious medical issues that she brushed off.

 

tTg igA           1.0       (Reference Range < 9.0)  (Negative <9 |Borderline 0-16 | Postive >16)

DGP IgG        45.6 H (Reference Range < 25)

I learned on google that ttg iga is not very reliable under 2 years.  He had only been consuming gluten for 7 months when the blood test was taken.  My concern is the dgp igg looks high?  And I read a lot of posts on this forum where people said that hinted at celiac.

Any insight would be very helpful!

Thanks

[Jmg]

Hi and welcome

It's considered a good test I believe for youngsters:

Quote

it appears that in very young children (i.e., in the first two years of life) DGP-IgG do provide a better test for celiac disease. June, 2017

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You also have positive response to the gluten free diet. 

I think you need to find a new doctor and consult with them. If you're after a diagnosis, that will probably mean a challenge - maybe you'll want to wait for that till he's a little older? Probably getting a good doctor you're comfortable with will help with that decision. But for now, if I were you, I'd keep him on the diet he's doing well on and monitor his reactions. Keep a diary, and amass any evidence you can for when you can get to a doctor. 

Best of luck to you both!

Matt

[Katasaurus]

22 minutes ago, Jmg said:

Hi and welcome

It's considered a good test I believe for youngsters:

Open Original Shared Link

You also have positive response to the gluten free diet. 

I think you need to find a new doctor and consult with them. If you're after a diagnosis, that will probably mean a challenge - maybe you'll want to wait for that till he's a little older? Probably getting a good doctor you're comfortable with will help with that decision. But for now, if I were you, I'd keep him on the diet he's doing well on and monitor his reactions. Keep a diary, and amass any evidence you can for when you can get to a doctor. 

Best of luck to you both!

Matt

Thank you so much for your reply!  Getting a good doctor is #1 on my list and as soon as we set foot in our new province that's the first thing I'm going to do!  Our previous doctor was not a good fit for our family.  Thanks for reafirming my decision to keep him on the diet!  It can be difficult with a young child, especially since he is soooo picky but he doesn't seem to mind gluten free bread for now lol.  I think the idea of waiting to do a challenge when we have a proper doctor and he's a little older (and can communicate better) is much better than just throwing it at him now.  We got lax a couple nights ago, desperate for him to eat something my husband gave him some of the sauce and meat from his spaghetti and we definitely learned our lesson yesterday and today.  The amount of diapers and crankiness is back to the way it was before the elimination diet.  Lesson learned!

I keep a ridiculously detailed diary in an app of everything he eats, including pictures of diaper contents.  I feel very prepared for meeting a new doctor

Thanks again!

[squirmingitch]

That DGP IgG  is very high! As far as a gluten challenge goes, he shouldn't have to have any more of the blood work in light of the very high positive he had. That would require a 12 week challenge. OY! So he should only (that word is relative) need to do a 2 week challenge for an endoscopy. 

I am so glad you stuck with pursuing & advocating. Moms know when something isn't right! Your notes will be invaluable. Good going mom!

I wish you the very best on your move & finding a great doc in the new location.

[Katasaurus]

17 hours ago, squirmingitch said:

That DGP IgG  is very high! As far as a gluten challenge goes, he shouldn't have to have any more of the blood work in light of the very high positive he had. That would require a 12 week challenge. OY! So he should only (that word is relative) need to do a 2 week challenge for an endoscopy. 

I am so glad you stuck with pursuing & advocating. Moms know when something isn't right! Your notes will be invaluable. Good going mom!

I wish you the very best on your move & finding a great doc in the new location.

Thank you for replying I'm really hoping to avoid a 12 week challenge but am scared that for some reason a new doctor in a different province won't accept my copies of his blood work results, even though it's the actual documents from the hospital.

It's good to know that the challenge for endoscopy is much shorter.  I didn't know damage could show so quickly, wow. 

The more I read the more I'm becoming concerned with cross contamination.  I feel bad that since he went off gluten Dec 8th I've been using the same wooden cutting board and utensils that I use for preparing my husband's and my own food.  Fortunately I was basically gluten free already (not purposefully, I'm just not a big bread or processed food eater), but I've been making sandwiches for my husband and then preparing my son's food in the same area, using the same toaster for them both even!  My son's every day attitude and development has greatly improved being gluten-free but once and awhile he gets bloated, has a couple days of bad diapers and is miserable again.  I can't believe I've been accidentally glutening him because I wasn't aware how serious cross contamination could be.

Do you happen to know if there is anything else besides celiac that can elevate DPG IgG like that? I tried looking but haven't found anything so far.  I would assume we just continue as he is celiac? He is not in daycare so fortunately we won't need to worry about a full diagnoses for daycare or school yet.

I am so thankful for this website and forum, and of course all the kind people who reply to my posts.

[squirmingitch]

Read this Newbie 101. It will help you with issues like cross contamination.

 

No, I don't know of anything other than celiac that would elevate the DGP IgG but I am not an expert. I know other things can affect the IgA. The DGP IgG is what most kids ring the bells on and most adults do not but we do have a few members who oddly enough, only test positive on the DGP tests. I think you are best off treating him like a celiac.