Coeliac Toddler?

[cosmicmouse]

Just wanted to share our story in case it rang any bells with anyone. We're awaiting blood tests on the 25th Feb, but that feels like light years away right now.

My daughter was fine up until about 14mo, when she started having cups of cows milk for the first time. She was/is breastfed. She was up in the night screaming in pain if she'd had milk in the day. Her face came up in a horrible rash that wouldn't go away. It didn't take us long to realise the milk was the culprit, and we took all dairy out of her diet. Followed by my diet when we realised she was reacting to that too. Things improved greatly.

But by 16mo, she was back having these screaming fits every few nights. She thrashes around, arching her back, screaming completely inconsolably. The only thing that soothes her is breastmilk. But if the flow of milk slows, she's beside herself again waiting for the next let down. She will eventually sleep, but only for an hr or so and will start up again.

All of the back arching and need for fluid lead me to suspect she had silent reflux/heartburn. She was put on medication for that, and is much better.

She then had a random seizure at 20mo and her meds were changed just in case they were the cause. No reason for the seizure was found.

However, now at 21mo the bad nights continue albeit less severely than before. And maybe 2 or 3 nights a week of hourly wake ups rather than around 5.

We finally saw a paediatrician this week, and took a full history. She thinks it's either "just" reflux that will eventually right itself, or theres a chance that it's actually coeliac disease that's the root cause of all her problems.

The more I read, the more I think she may be right.

My mum is coeliac. I think that the gluten has been damaging her gut since weaning at 6mo, meaning she became lactose intolerant by 13mo. Removing dairy has helped that, but as she's still on gluten, the reflux is getting worse and the meds can't keep up. And/or she's just got raging belly ache, and that's causing the awful nights.

But I'm now worried that the bloods will be negative and we'll be back to square one.

Can anyone provide any reassurance?

[GFAnnie]

Have you also eliminated soy?  Soy intolerance usually goes hand in hand with dairy intolerance in infants and toddlers.  My three year old had this when he was younger. It is often refered to as MSPI (Milk Soy Protein Intolerance).  And realize that soy is in everything processed!  Most people hear "soy" and think of veggie burgers, but soy is actually in "natural flavors" and various other ingredients that appear in, yes, everything!  But with your family history of celiac, that is also a good possibility.  It's even possible that at this point, it's all three issues at once.  The good news is that children usually outgrow the dairy and soy issues. Good luck figuring it all out!

[greenbeanie]

My daughter had many of the problems you describe, starting shortly after she was born. In her case, reflux medication actually seemed to make it worse, though. We actually took her off it after a few weeks because it increased the vomiting. I wonder now if the medication contained gluten - it was a generic brand, and celiac wasn't on our radar at the time, so I was only checking ingredients for dairy (which we knew was a problem). She had strong positives on all celiac tests when first tested just after she'd turned four, and I'm sure she would have tested positive much earlier. I was virtually certain she had it by the time she was tested, but I was also worried that we'd get false negatives and that would further reinforce our doctor's belief that I was worried about nothing, and that she'd grow out of the problems. It was a huge relief to finally have a diagnosis.

I really hope you get a clear answer - but if the blood tests are negative and your doctor won't do further testing, you can still try a strict gluten-free diet (once all testing is done) and see if it helps. My own health has improved immensely after going gluten free, even though my own tests were negative.

[nvsmom]

False negatives aren't unusual in toddlers... unforunately.    The deaminated gliadin peptide antibodies (DGP IgA and DGP IgG) are the best tests for kids followed by the tTG IgA and tTG IgG. Were those the tests she had done? If not, perhaps request them before trying the gluten-free diet as the tests lose accuracy pretty quickly in most kids.

 

I do think you should put her on the gluten-free diet for a good 6 month trial even if the tests are negative. It can take years for antibody levels to finally become detectable and I hate to think of the damage done to her health in the next few years if she is a celiac eating gluten. Besides. grain are not essential, or even helpful to a person's health - they are just really really convenient and tasty. That's it. beyond that carbs from grains just cause health problems over the long term.

 

I'm pretty passionate about making kids gluten-free if an intolerance if even suspected. My own kids tested negative but some had definite symptoms so I made our entire house gluten-free. With celiac in the family, I thought there was a very good chance that they had celiac too, although it could be NCGI... Treatment is the same though so really it doesn't make a large difference in the long run. KWIM?

 

You should get yourself tested too...

 

Welcome to the board and congrats on figuring all this out for your little one. She may not thank you now but you are making a HUGE difference in her life by actively pursuing this now.   Nice catch, mom.

[mommida]

You should get a referral to a pediatric gastroenterologist.  Don't change her diet yet!  The doctor will do an endoscopy with biopsy.  This can give you a full diagnoses.  There are other disorders that have the same symptoms of Celiac.  (some of which can be related to Celiac.)

[cosmicmouse]

Thanks everyone. She's having the blood tests, which include total iga, on the 25th.

She's under a general paediatrician at the moment. But I guess we may be referred on if the blood tests are positive. According to the guidelines, a positive test result and family history should be enough to diagnose - without the biopsy. So I'm hopeful it won't come to that given she's so little.

I wish I could just start her gluten free now and see if it helps, but I know she needs to be eating it whilst we undergo testing.

I've put a call into my doctor to sort out getting myself tested again this week. I was tested 5yrs or so ago, but I know things can change. I'll need to move fast on that as if she's positive, I'll need to be gluten free as well as she breastfeeds.

I think she may be sensitive to soy too, as recently she is unsettled after I drink too much soya milk. But she seems fine eating soya products, which is odd.

These other intolerances seem to keep developing though, which does suggest her gut is getting more and more sensitive. She's certainly much more sensitive to dairy than she was at the beginning :-(

[ays2974]

Cosmicmouse, there is nothing more awful than watching your child arch her back in agony. I'm right there with you. 

 

My daughter has had "GI issues" since she was born, she'll be 2 on Feb. 28th: reflux, vomiting, bloat, etc. Her pediatrician did an Iga test at 1 which was negative. Now her symptoms include the GI but she's also exhausted - would sleep 17 hours or more a day if allowed, losing weight, and irritable. We are having the Iga panel done again tomorrow as well as two additional tests looking for any inflammation in her system. 

 

Does this sound like anything you all have experienced. I've been tested and came back negative twice since I have a super sensitive GI track.