Toddler recently diagnosed coeliac with bone oedema

[RK37]

Hi,

Our 20 month old son was recently diagnosed with coeliac disease after 3 weeks of continuous vomiting, weight loss and lethargy. During his initial hospital admission, we noticed he would not bear weight on his feet at all despite being a competent walker. After 2 weeks, we were discharged on a gluten free diet and noticed lots of improvement in his energy level and appetite etc. He was taking a few steps but was very unsteady on his feet. After a few days, he completely stopped walking again and seemed in pain when trying to bear weight on his feet. We were advised to take him back up to A and E/ ER where they advised us he probably had transient synovitis linked to a virus (which turned into croup) than he caught in hospital. We were sent home but called 2 days later to come back as they weren’t sure that was the right diagnosis. MRI images showed he had bone oedema (swelling) and inflammation of the tissues surround the bones in his legs. He has slowly improved and is walking again although not confidently and is due another MRI next month to see if there is any reduction of swelling. But doctors do not know why he has the swelling. They have tested for just about anything they can think of but still no clues. They do not think there is a link between the coeliac diagnosis and the bone oedema but given the fact the bone oedema was diagnosed just 2 weeks after the coeliac diagnosis, it seems hard to believe! Has anybody had a similar experience? 

[trents]

Welcome to the forum, RK37!

I don't have any bright ideas as to what is causing the bone edema. That's something I have never heard of in children or adults. So, it's the actual bone that is swelling and not the synovium or the compartment around the bones? 

Is he consuming dairy products by any chance?

I'm also curious about how he was diagnosed with celiac disease. Blood antibody testing, endoscopy with biopsy or both?

Edited August 28 by trents

[RK37]

He was diagnosed via blood antibody testing (twice) and gene testing. He was due to have the endoscopy with biopsy but he had croup at the time of the proposed biopsy so a general anaesthetic was deemed too risky. We didn’t want him consuming gluten for any longer than necessary so the doctors decided we could go down the blood and gene testing route as an exceptional case. His TTG levels were >250 both times and he tested positive for HLA DQ 2.5.

He is currently consuming dairy products, I’m not sure what we would be able to feed him if he were off dairy too! He is a fussy eater…! 

The MRI shows swelling of the tibia and femur, more so in one leg than the other. And inflammation of the surrounding tissues.

We have repeatedly been told he is a mystery! So thought we would reach out and see if anyone else has heard of anything f similar. 

[trents]

I asked about the dairy because a significant proportion of the celiac population reacts to CMP (Cow's Milk Protein) like they do gluten. Oats is another common cross reactor.

https://www.beyondceliac.org/research-news/cows-milk-protein-allergy-could-be-the-culprit-when-some-children-dont-recover-on-the-gluten-free-diet/?_hsmi=243747802&_hsenc=p2ANqtz-9ypIw1m3WkR8fel8zGzDTgLTyO4SkanPW8I3x0xu0RgLQFxBFcd_jA5Vwds15Uu0BiLLxTWgMkB91qdI1m7GTuv_hmzA

Edited August 28 by trents

[Wheatwacked]

Welcome to the forum @RK37,

My son was diagnosed in 1976 as soon as he was weaned.  His doctor prescribed Nutramigen.  They have a product for toddlers.

Scary enough the Celiac, much less the complications.

Celica Disease causes malabsorption of the twenty odd vitamin and minerals absorbed by the small intestine.  So it causes malnutrition.

Doctors tend to look at not look at nutrition as cause of a symptom.

Most celiacs at diagnosis have Vitamin D deficiency.

Vitamin D causes Rickets, osteoporosis.  Osteoporsis  is a cause of BME.

What is his vitamin D blood level.  The normal is 70-90 ng/ml ( 200 nmol/L).

Of the list below, all of them are related to low D.

Quote

Issues with metabolism that may cause BME include:

• Cushing syndrome. 
• Hyperparathyroidism.
• Mastocytosis.
• Mineral and bone disorders due to chronic kidney disease.
• Osteomalacia.
• Osteoporosis, especially of the hip and knee.
• Vitamin D deficiency.

Cleveland Clinic: What Causes Bone Marrow Edema?

 

[Scott Adams]

I'm sorry to hear about what your son has been going through. It's understandable that you're concerned, especially with the close timing of his celiac disease diagnosis and the onset of bone edema. While it's true that bone issues like edema aren't commonly linked directly to celiac disease, there have been cases where children with untreated celiac disease experienced bone problems due to malabsorption of essential nutrients like calcium and vitamin D, which are critical for bone health. Once on a gluten-free diet, it often takes time for the body to heal and for nutrient levels to normalize, so ongoing symptoms could be related to the period before diagnosis.

Given the complexity of your son's symptoms, it's good that the doctors are being thorough. If they haven't already, it might be worth discussing whether his celiac disease could have led to temporary nutrient deficiencies that contributed to his bone issues. Additionally, autoimmune diseases sometimes overlap, so staying in close communication with your medical team is crucial. I hope the upcoming MRI provides more answers and that your son continues to improve.

[RK37]

They were concerned about a nutritional deficiency but recently ruled that out based on blood results. His vitamin D is normal and he is not anaemic but his folate level is on the lower end of normal so it’s being monitored. More bloods being taken later today so perhaps that might shed some more light!! Thanks for everyone’s responses and comments, great to have support. 

I should add he has been reviewed by the rheumatology team at our hospital and Great Ormond Street hospital have also looked at his MRI images and blood results and have ruled out anything rheumatological.