Baby with blood clot and ascites, celiac?!

[njcfrancis]

Does anyone have experience of babies with celiac disease at weaning? And, separately, can celiac disease cause or worsen blood clots, and cause ascites? 

My eight month old had a very complicated last two months in hospital, which started at weaning. He has a blood clot near his portal vein, which we think is partly unrelated, but it appears when he started weaning, and specificallly after he had rusks and some wheat puffs, he developed more of a blood clot there which caused a partial vascular blockage and ascites. He spent a month in hospital with a drain in, and stabilised. Fed his milk (he has cows milk protein allergy) with no problems, and then weaned onto fruit and vegetable purees with no problems and consistent weight gain (carefully monitored) over a month. Since starting with wheat puffs, bread sticks and baby porridge in the last two weeks, the ascites appears to have built up again. Aside from mild constipation he has no apparent discomfort or other symptions. 

 

Could anyone help? I know it's very unusual but I feel like it's a pattern rather than a coincidence. 

[trents]

I know this isn't directly addressing your questions but how are your infant's liver enzymes? About 20% of adult celiacs experience liver inflammation. That was me and what led to my celiac diagnosis when there were no other explanations for mildly elevated liver enzymes. When I went gluten free, the liver enzymes normalized within 3 months.

It might be a good idea to get genetic testing done on your little guy for celiac genes. If he has the genes then that doesn't necessarily equate to him having celiac disease but it does establish the potential for it. Some triggering stress event (such as a viral illness) is also needed to activate the disease even when the genes are present. Most people who have the celiac genes never develop the active form of the disease. But it could be one piece of the puzzle. If your baby has celiac genes it would be helpful with regard to the potential for it as his parents and siblings. If someone has active celiac disease, about 44% of their first degree relatives will also develop it.

The blood antibody tests used to diagnose celiac disease in adults are not valid for young children but there are some others they can run for young ones. Not sure how reliable they are but I would research, "how is celiac disease diagnosed in young children" and "celiac disease tests for young children."

What are pediatricians recommending these days for the age of infants as far as introducing wheat into the diet? They used to caution against giving them wheat products before a certain age.

Edited April 20, 2021 by trents

[cristiana]

Hi there,

I agree with everything trents has posted.  One other thing - do you if his haemaglobin levels are high?

I suffered from phlebitis in my left leg in my teens,  most unusual for a teenager apparently, and I was told I had sticky blood.  Since then I've had blood tests that reveal just beyond high normal readings for haemaglobin, which most likely caused this.   I don't think there is a link with coeliac disease, that said.

Cristiana 

[trents]

Like cristiana said, I am not aware of gluten-related medical conditions causing blood clotting so that may be a separate issue. I have a genetic clotting disorder called Factor 5 Leiden. It causes my blood to clot too easily. I discovered it several years ago when I wound up in the ER with bilateral pulmonary emboli. Now I'm on blood thinners for life. Anyway, I'm sure the docs are checking your baby for things like that. 

[RMJ]

This paper discusses a case report of one patient with celiac, thrombosis and ascites.

Celiac Disease Presenting as Budd-Chiari Syndrome

A Google search on Celiac and ascites brings up some hits.  They are mainly case reports - descriptions of individual patients.  So it is possible, but not common.

[AmericanaMama]

Could you child have a liver problem? In my family there is a genetic condition called Alpha-1 Antitrypsin Deficiency. It can cause problems with the liver and the lungs. Not saying that is the problem, but maybe it's in need of checking out liver enzymes and maybe bleeding times (PT, PTT), maybe hemoglobin, etc? Keep us posted.

Robin M.

On 4/20/2021 at 10:52 AM, trents said:

I know this isn't directly addressing your questions but how are your infant's liver enzymes? About 20% of adult celiacs experience liver inflammation. That was me and what led to my celiac diagnosis when there were no other explanations for mildly elevated liver enzymes. When I went gluten free, the liver enzymes normalized within 3 months.

It might be a good idea to get genetic testing done on your little guy for celiac genes. If he has the genes then that doesn't necessarily equate to him having celiac disease but it does establish the potential for it. Some triggering stress event (such as a viral illness) is also needed to activate the disease even when the genes are present. Most people who have the celiac genes never develop the active form of the disease. But it could be one piece of the puzzle. If your baby has celiac genes it would be helpful with regard to the potential for it as his parents and siblings. If someone has active celiac disease, about 44% of their first degree relatives will also develop it.

The blood antibody tests used to diagnose celiac disease in adults are not valid for young children but there are some others they can run for young ones. Not sure how reliable they are but I would research, "how is celiac disease diagnosed in young children" and "celiac disease tests for young children."

What are pediatricians recommending these days for the age of infants as far as introducing wheat into the diet? They used to caution against giving them wheat products before a certain age.

 

[njcfrancis]

Thanks so much everyone!! They're totally happy with his liver function it's not impacting that at the moment 🙂. Also he definitely doesn't have clotting issues, so it would be an inflammatory state from his diet making the ascites worse. Incidentally since I stopped grains again from Tuesday he's weight stopped shooting up, he's only gained 70g in that istead of 300g in 5 days last week on grains!! So I really think there's a link somehow!

[knitty kitty]

The Specific Carbohydrate Diet may help.  

[Evelyne555]

If this can be of use: celiac disease results in an increased risk of stroke and blood clots according to my neurologists: statistically, the risk is higher than for a healthy person, it is considered a risk factor. They believe it is caused by inflammation in blood vessels. Shortly after my diagnosis of celiac disease, I had a stroke, and I am disabled to this day, as I have only 3 to 4 hours of energy in a day. It was a very late diagnosis, that made the danger of complications like a stroke very high. In my opinion, you shouldn't hesitate to insist for him to be tested even if his doctors don't want to. I know the tests are different for babies and very young children too,  but I don't remember the details, you could look into that - the Canadian Celiac Association must have the details on their website. 

Hope this helps, 

Evelyne