Getting a diagnosis for 2 year old

[Gpcoop93]

Hi! I've never posted on a forum before so this feels a bit bizarre! But I'm now desperate to find out some opinions!!

My daughter just turned 2, for the last year(ish) she has been a very difficult child, impossible to get to sleep (she often would be wide awake at 11pm!) Once she was asleep she would wake up all throughout the night often not wanting anything or me just screaming (and sometimes visibly in pain in her tummy. She eventually then had permanent diarrhea (sorry tmi!!) That was full of mucus and smelt very acidic/sour/extremely rancid! I tried everything to get her to sleep better/ get her in a good routine and nothing worked until I cut gluten out her diet! 

After removing gluten she was almost immediately a different child! Diarrhoea cleared up straight away and after a little while she was sleeping through the night, something she had never done before! I didn't realise she was supposed to keep gluten in her diet, so she was tested while only eating gluten for 2 weeks. 

Got told by gp (unspecialized doctor in the UK) she was negative for coeliac but did have a milk allergy so she referred my daughter to a dietician for the allergy. At the dietician apt she pulled up my daughters results and said her overall IgA was low, I think she said 0.17 and the normal range for her age is 0.30-1.20 so that does seem quite low. But she didn't actually diagnosed her as IgA deficient so I'm unsure if that value would be an IgA deficiency or is it just a bit low? She also said her thyroid was low but again didn't officially diagnise her with a thyroid issue just noted it was below the normal range. 

The dietician has referred her to paediatrics and recommended other celiac testing taking into account the low overall IgA, including genetic testing.

I know it's impossible to guess only the tests will tell but I'm curious to know others thoughts, does this sound like celiac?  I've read IgA deficiency can be linked with celiac and other autoimmune diseases like low thyroid so it all finally seems like its adding up!?  

(Ps she has been on and off gluten a few times and her symptoms always disappear after a while off gluten and return when reintroduced. She was off gluten for about 6 months and everything was going well, when the gp (possibly incorrectly) told me she was negative for celiac I reintroduced gluten, she was absolutely fine for about 2 weeks and I thought she no longer had an issue then suddenly all the symptoms came flooding back! Wondering if it can take a while for the intestinal lining to get damaged and create the diarrhea symptoms?) 

Sorry that's SO long! Thank you if you have stuck with me til the end! 

[trents]

24 minutes ago, Gpcoop93 said:

Hi! I've never posted on a forum before so this feels a bit bizarre! But I'm now desperate to find out some opinions!!

My daughter just turned 2, for the last year(ish) she has been a very difficult child, impossible to get to sleep (she often would be wide awake at 11pm!) Once she was asleep she would wake up all throughout the night often not wanting anything or me just screaming (and sometimes visibly in pain in her tummy. She eventually then had permanent diarrhea (sorry tmi!!) That was full of mucus and smelt very acidic/sour/extremely rancid! I tried everything to get her to sleep better/ get her in a good routine and nothing worked until I cut gluten out her diet! 

After removing gluten she was almost immediately a different child! Diarrhoea cleared up straight away and after a little while she was sleeping through the night, something she had never done before! I didn't realise she was supposed to keep gluten in her diet, so she was tested while only eating gluten for 2 weeks. 

Got told by gp (unspecialized doctor in the UK) she was negative for coeliac but did have a milk allergy so she referred my daughter to a dietician for the allergy. At the dietician apt she pulled up my daughters results and said her overall IgA was low, I think she said 0.17 and the normal range for her age is 0.30-1.20 so that does seem quite low. But she didn't actually diagnosed her as IgA deficient so I'm unsure if that value would be an IgA deficiency or is it just a bit low? She also said her thyroid was low but again didn't officially diagnise her with a thyroid issue just noted it was below the normal range. 

The dietician has referred her to paediatrics and recommended other celiac testing taking into account the low overall IgA, including genetic testing.

I know it's impossible to guess only the tests will tell but I'm curious to know others thoughts, does this sound like celiac?  I've read IgA deficiency can be linked with celiac and other autoimmune diseases like low thyroid so it all finally seems like its adding up!?  

(Ps she has been on and off gluten a few times and her symptoms always disappear after a while off gluten and return when reintroduced. She was off gluten for about 6 months and everything was going well, when the gp (possibly incorrectly) told me she was negative for celiac I reintroduced gluten, she was absolutely fine for about 2 weeks and I thought she no longer had an issue then suddenly all the symptoms came flooding back! ) 

Sorry that's SO long! Thank you if you have stuck with me til the end! 

Welcome to the forum, Gpcoop93.

Unfortunately, we here this same story over an over about physicians failing to inform their patients that they should remain on normal amounts of gluten until testing is complete. There generally is much ignorance in the medical community about gluten-related maladies and many doctors still have a dismissive attitude toward these medical problems as being more psychological issues than a scientific reality.

Unfortunately, you would have to put your child back on gluten for at least 6-8 weeks before any future blood antibody tests would be valid. There is also testing for celiac disease via an endoscopy/biopsy of the small bowel as celiac disease damages the lining of the small bowel. This is considered to be the gold standard for diagnosing celiac disease but the "gluten challenge" is shorter, requiring at least 2 weeks back on regular gluten consumption. This might answer your question, "Wondering if it can take a while for the intestinal lining to get damaged and create the diarrhea symptoms?" Physicians in the UK are relying more and more on the antibody blood testing and the endoscopy/biopsy is falling out of favor. I'm sure cost of testing has something to do with that. In addition, physicians are very reluctant to do invasive procedures like that on young children anyway.

Having said all that, I think you have already proved to yourself that gluten is toxic to your child. The only question is, does she have celiac disease or does she have gluten sensitivity? Symptomatically they are very similar and the antidote is the same, namely, total avoidance of gluten for life. Certainly, it would be good to have an official diagnosis but is it worth torturing your baby with a gluten challenge to get there? 

One thing you might consider is getting genetic testing done for celiac genes. That may help firm up your conclusion. But realize that most people who have the genetic potential for celiac disease never develop the disease. It takes both the genetic potential and a triggering stress event for the disease to become active. Having said that, you need to realize that recent studies have demonstrated there is a 44% chance that the first degree relatives of someone with celiac disease will also have it or will develop it. First degree relatives are parents, children and siblings.

[trents]

Oh, yes. Concerning low IGA. Low IGA will skew the results of the blood antibody tests and many times create false negatives.

It also needs to be said that the same tests used for diagnosing celiac disease in adults are not as reliable when used with children. Young body systems just react in different ways to the same disease processes.  https://www.beyondceliac.org/living-with-celiac-disease/info-for-parents/testing/

Note this paragraph from the linked article:

Celiac Disease Testing in Children Under 3

Blood tests are not always accurate in very young children. If your child is less than 3 years old, you may be advised to see a gastroenterologist instead of relying on blood tests results.

[Scott Adams]

Welcome to the forum! It seems you have at least part of the answer already: gluten sensitivity. Everything you’ve described leaves little doubt that she should not be eating any gluten. Whether or not you want to go down the difficult road to screen her again for celiac disease is up to you, but no matter the results her outcome would likely not change: a 100% gluten-free diet.