Does my child have symptoms of celiac disease?

[Laurenmw]

My little girl is 5, almost 6, and for the last 12 months or so she has been complaining that her stomach hurts. In the last month this has turned into an issue that is arising every day, along with random bouts of diarrhoea too. Most days when I ask her what she wants to eat, she will say “nothing really my stomach is hurting/ I feel sickly”.

She has always been a snacker and it’s quite hard to get her to sit and eat a full meal. She is a fussy eater and doesn’t like things that are very carby, like pasta, bread, rice etc. Looking at her, she looks perfectly healthy and is tall but very slim. She’s quite hyperactive and she does have quite dark under eyes. It could be irrelevant but she often complains of leg pain as well. 

Also very recently and for the first time ever, she’s got hives around her mouth after eating the same food (again not sure if that’s relevant). I’ve taken her to the GP and she basically said she wasn’t concerned, and it was definitely not anything more than unexplained stomach aches. Something tells me it’s more than this though?

[trents]

Welcome to the forum, Laurenmw!

Her tummy symptoms certainly are congruent with celaic disease or possibly NCGS (Non Celiac Gluten Sensitivity). There is no test or NCGS. Celiac disease must first be ruled out. But NCGS is 10x more common than celiac disease.

The first step in screening for celiac disease would be blood antibody testing. Just a simple blood draw which is then sent to a lab and analyzed. The immune systems of young children are not fully developed so the antibody test they typically use for adults (called the tTG-IGA) is often negative for children who actually do have celiac disease. A "full celiac panel" should be run on young children including the total IGA and DGP tests. I know this is all Greek to you but here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ What one test misses another may find.

My concern with the blood antibody testing in your case is that you say your daughter has an aversion to carbs. For the antibody testing to be valid, she would need to be consuming regular amounts of wheat (gluten) for 6-8 weeks leading up to the blood draw. The Mayo Clinic defines "regular amount" as two slices of wheat bread daily or the gluten equivalent. But of course, those guidelines were created for adults so I'm not sure how that would transfer for a 5 year old. It also occurs to me that her aversion to carbs may be due to the fact that she has instinctively discerned that bread products make her feel bad.

Be aware that there is a paucity of knowledge about celiac disease in the medical community at large. The celiac community has learned that we have to be our own advocates, going to medical appointments armed with knowledge and learning to be appropriately assertive in order to get proper testing done.

Another option would be for you to put your daughter on a gluten free diet and see if her symptoms improve. But with this option, be aware that if she were to go in for celiac disease testing at some future date she would need to go back on regular amounts of gluten for 6-8 weeks.

Concerning the leg pain, is it in one or both legs?

[Laurenmw]

Thank you so much for taking the time to reply. The information you have given me is great, I will definitely have a read and get my information ready for her next doctors appointment! 
 

In regards to her gluten consumption, she does tend to have cereal in the morning, do you think this would be sufficient enough? If not I can try and up it with bread, as it the one she will most likely eat. I am going to push for her to be tested, so we can rule it out if not. 
 

The leg pain is quite random, she hasn’t said it for a while but it always seems to come back. She usually complains of it in one leg at a time, but it alternates between left and right. I put it down to growing pains in the past, but I don’t know if there is actually any truth behind “growing pains”, so I’ve always doubted that as well! 

[trents]

Is the cereal a wheat or barley product? The gluten containing grains are wheat, barley and rye.

[Laurenmw]

Yes usually, but I’ll make sure to check the labels to be on the safe side! 

[trents]

So, just to be clear, the breakfast cereal would need to be wheat-based to give her the pretest gluten exposure she needs. Barley and rye also contain gluten but only a fraction of that in wheat.

[trents]

To refer back to one of my earlier posts, young children often have an under-developed IGA immune response subsystem. That's why it's important to get a "total IGA" count. If the total IGA is low, the fractional IGA scores will be depressed. For the same reason, it's critical to have the DGP tests done.

[Russ H]

1 hour ago, trents said:

To refer back to one of my earlier posts, young children often have an under-developed IGA immune response subsystem. That's why it's important to get a "total IGA" count. If the total IGA is low, the fractional IGA scores will be depressed. For the same reason, it's critical to have the DGP tests done.

Yes, and children often test positive for anti-DGP antibodies before they do for anti-tTG2, so it is particularly important that they have that one.

[Laurenmw]

Would you recommend I specifically ask for these tests to be conducted, as well as the blood test? From what I gather, they won’t offer these tests routinely?

[Russ H]

6 minutes ago, Laurenmw said:

Would you recommend I specifically ask for these tests to be conducted, as well as the blood test? From what I gather, they won’t offer these tests routinely?

Are you in the UK? If so, the GP will generally follow NICE guidelines. However, there does seem to be some variation in initial tests performed between different GPs and Health Trusts. NICE specifies:

Quote

When healthcare professionals request serological tests to investigate suspected coeliac disease in children, laboratories should:

test for total IgA and IgA tTG as the first choice

consider using IgG EMA, IgG DGP or IgG tTG if IgA is deficient.

Some people get tested for DGP regardless, so worth trying as there does seem to be a degree of flexibility.

[Scott Adams]

The anti-DPG test should be done in children, and should be done as part of a full celiac disease blood panel:

Also be sure she's been eating around 2 slices of wheat bread's worth of gluten daily in the 6-8 weeks leading up to the test. She may also have non-celiac gluten sensitivity, and if so there currently isn't a test for this condition, so in the end trying a gluten-free diet should be done after all testing.

[trents]

37 minutes ago, Laurenmw said:

Would you recommend I specifically ask for these tests to be conducted, as well as the blood test? From what I gather, they won’t offer these tests routinely?

These are all blood tests and yes, I would for sure specifically ask for them. If you are in the UK, you might not get cooperation from the physician since there they are limited in being able to test outside the box prescribed by their healthcare system.

[LCAnacortes]

I would be concerned by hives if this were my child.  I experienced hives when I was having an allergic reaction. It was something in the air - so I took an anti-histamine and that helped me. Around the mouth sounds like a food allergy and I would mention it to her doctor and avoid that food. She could possibly go into anaphylactic shock.  Often allergic reactions get worse with every exposure.  

[Wheatwacked]

On 2/4/2023 at 12:43 PM, Laurenmw said:

The leg pain is quite random

That too will clear with GFD.  Try to get blood vitamin D level; also. It is quite common in Celiac Disease and will need to be addressed

[LCAnacortes]

My kids often had leg pain when they were growing.  It came and went....

 

[knitty kitty]

Leg cramps can be caused by Thiamine deficiency.