toddler potencial celiac

[nela]

Hi all!

I have a 21month son who has not been growing well since his 3rd month. At first it was allergy to cow milk protein (mucousy foul smelling stool all the time) which was not confirmed since he was too little; I cut out dairy from my food (I was breastfeeding) and he was better a little bit. His other symptom was severe eczema which got better after removing cow milk protein, and after a while when he stopped reacting to eat I reintroduced it (he was about 10 months) without much problem.

However his very poor appetite (non-existent) persisted over time. He is not a picky eater, because those do eat at least some type of food - for my son here is no food he would want to eat with appetite. You cannot imagine this level of lack of appetite... He is anorexic, has 4-5 unformed very soft stools every day, sometimes foul smelling, he still has eczema... He was born with normal weight but quickly got to be between 3rd and 5th percentile for both height and weight

Anyway, we went to pediatric gastroenterologist, we did tests for celiac disease but all serology was negative. On subsequent visit doctor did proctoscopy which showed inflamed end of the colon with "lymphoid hyperplasia". Waiting for the result of biopsy. He suggested to cut out dairy and take probiotics daily and if that doesnt help to consider going gluten-free because clinically my son really does look like he has celiac disease (even though tests were negative), and two other pediatric gastroenterologists agreed on this. We cut out dairy which didn't produce any results so now we are going to try going gluten-free while keeping dairy-free... At the end of the month we are going to do genetic screening for HLA DQ2, DQ8 to see if he has the genes, if not - we can then rule out celiac disease...

Anyone with remotely similar experience?

I am kinda hoping it is celiac, because even though it is life-long, it can simply be managed with diet, without medication. If it is, he should start growing and getting an appetite once we go gluten-free... However I am aware that the chances are very very slim since all the blood tests were negative... 

 

[cyclinglady]

Trial the gluten-free diet as recommended by the Ped GI.    Babies often do not get positives on the antibodies tests because they have not developed them yet.  I recall age three being a good age to test.  But your baby is sick.  I would do the diet now.    Get the entire family on the diet.  It makes it easier, though a shared kitchen is doable.  He might just get dairy back!  

Keep us posted.  You could help another parent in the future.  

Edited July 31, 2018 by cyclinglady

[nela]

Thank you for your reply. As going dairy-free did not result in improvement, I decided to trial gluten-free. The ped GI didn't want to do biopsy of the small intestine before seeing if he has the genes, because he is so small and the biopsy can return inconclusive. 

We will try gluten-free and DF and if he does get better I will worry later about getting the official diagnosis. 

He really has symptoms of celiac disease - failure to thrive, hindered linear growth, absolutely no appetite, unformed frequent stools... some behavioural issues are there as well, but I am reluctant to "explain" those with this as well, since at his age behavioural issues can be result of many factors. He has no fat under skin whatsoever, has very thin arms and round distended stomach. He is not anaemic, but that's only thanks to my constant efforts to get him to eat iron-rich food which is also calorie dense. Despite no appetite I do force him to eat (not proud of my methods, using Youtube and pureeing everything) so it is definitely malabsorption because he is not eating that little to be this skinny.

I will keep you posted on the results of gluten-free trial. I read a lot about experiences of different people, so if gluten is the offender, I am hoping he will start getting better after a week already.

[nela]

Hi all,

This is our fourth day gluten-free and this morning he had a normal stool! 

However, afterwards he had another explosive one, then another normal one, then another explosive one.

Is it normal for people who get better on gluten-free diet to have on/off symptoms before getting completely better? I am not even sure gluten is the culprit, we are trialing it, it is very early of course and I am not jumping to conclusions but I do hope that him finally having one normal stool is sign that he is getting better...

 P.S. Also I did not make my house 100% gluten free (it is very hard for entire family to do that, I have an older kid as well), so perhaps I contaminated some of his food today

[cyclinglady]

It takes weeks or months for the gut to heal or the immune system to calm down.  You also have to factor in the steep learning curve of the gluten free diet.  So, it is still early in the game.  Give yourself more time.  

My kid does not have celiac disease.  I make sure she gets her gluten fix when we are out, when she is visiting with friends or while at a school.  She actually prefers naturally gluten free foods.   We also noticed that eating healthier has been beneficial.  I had a shared household for years with my hubby so when I was diagnosed, we just went gluten free.  It was easier and I could let down my guard.  It also has been cheaper on our food budget as we rarely eat out.  

You know your family best.  You will work it out.  ?

 

[GFinDC]

The first 6 months gluten-free were kind of a roller coaster for me as far digestive symptoms and feeling better.  It was back and forth, better and worse.  It is important to eliminate every bit of gluten from the diet.  Our immune system attacks and kills germs that you need  a microscope to see.  So it will definitely attack a crumb of gluten.

The other thing is the immune system doesn't give up attacking instantly.  Immune cells are groomed to attack and will continue to be produced for possibly weeks or months.  So every little bit of gluten ingested will kick off the immune response for perhaps another several months of symptoms.  The symptoms are caused by the immune system attack on the body.  That's why they call celiac an (AI) auto-immune disease.

Children's immune systems are still developing, so the symptoms may resolve faster/be less severe.

I don't know what his behavior symptoms are, but they could be related to celiac disease.  Having malabsorbtion reduces our levels of important vitamins and minerals our bodies need to function and grow.  That includes B-12 which is important for nerve health, and vitamin D.  Plus we can't absorb fats and carbs as well so we are fatigued.

I suggest you avoid giving him sugary foods and foods with a lot of rice or white potatoes.  He needs calorie dense nutrition.  Also the sugar and carbs can cause bloating and pain in the stomach.  That happens because our digestion is not working right so the gut bacteria feast on those sugars and carbs and make lots of gas.

I also suggest you rotate his foods some.  Try not to feed the exact same things every day for weeks.  The issue there is our irritated digestive system can start developing reactions to other foods besides gluten.  For instance I can't eat nightshades, dairy, soy, carrots, celery, oats, strawberries, gluten, and have a hard time with beans.  But I used to eat a lot of those things.  My system now reacts to them.  So rotating the diet may help prevent some additional food intolerances from developing.

I hope he does better soon!

Edited August 4, 2018 by GFinDC

[frieze]

the genetics testing WILL NOT RULE OUT celiac, they only test for two genes, and there are others.. RAVEN, where are you????

[nela]

Hi all,

Here is a little update. I am curious about your inputs... So as recommended we eliminated gluten from son's diet beginning of August. His stool started to get better but not immediately (on and off), and it finally got ok after approx 2-3 weeks (even though still often, 5x per day, EVERY single one was normal). However he still had no appetite, nor did he put any weight on during that time (nothing except stools changed).

After a month of gluten-free we finally did HLA testing which came back negative (doesn't have DQ2 nor DQ8). So I reintroduced gluten that night when we got test results and the following morning stool was again watery! And it continued to be, with some normal ones in between... Since they were scheduling him for endoscopy anyway, I just continued giving him gluten. This took a while, because he got sick (virus) so he needed to get 100% healthy before endoscopy (he will be 2 years old in a week). We did endoscopy last week, and as soon as it was done, I put him off-gluten. Stools got better after 2 days.

So... while we are waiting for biopsy results... this is probably gluten sensitivity right? If it is, will his appetite eventually start getting better? Will he start putting weight on? He is sooo undernourished... and very short for his age (both me and my husband are VERY tall, so it's not genetically). 

Also, if it is not celiac, but rather gluten sensitivity, do we have to be absolutely 100% strict that he doesn't eat even a crumb of gluten (I am not thinking about glutening him, but if I didn't have to worry about cross contamination it would be a little bit easier).

thank you so much

[cyclinglady]

I think you need to wait for the biopsy results. I know that waiting is so hard!  Intestinal damage can be caused by so many things other than celiac disease:

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Response to the gluten free diet for a celiac or maybe a person with NCGS (I can not speak for it since I celiac disease), can take months or a year to heal due to collateral damage and a steep learning curve to the gluten-free diet.  Remember, celiac disease is an autoimmune disease triggered by gluten.  Like lupus though, the body decides when to stop attacking itself.  Stopping gluten does not necessarily mean the body will instantly stop attacking itself.  

Avoiding cross contamination is critical for both (per member input).  

There was a girl, Nicole, who was on YouTube and later featured in Allergic Living.  Not only did she have celiac disease, but she had a genetic intestinal issue that still prevented her from healing. 

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I am not inferring that this is the case with your son.  I am saying that you can not jump to conclusions before you have all the evidence.  However, I am a mother and I completely get your position.  Hang in there!  

 

Edited October 9, 2018 by cyclinglady

[ravenwoodglass]

It sounds like the diet is helping him and it won't interfer with any testing for other problems that may be going on. I am a bit late to this but want to address the negative gene test. Despite those two genes not being present he could still be celiac. There are other genes associated although they are more rare. I am an example of a firmly diagnosed celiac who is not positive for either of those genes. I have a double copy of DQ9. I hope he continues to improve and that celiac or gluten intolerance are his only issues. You need to be just as strict with both. Children can heal quickly and I hope he is doing well soon.