Joint swelling w Celiac?

[liz.is.listening]

Hello-- just wanted to see if any others have heard/experienced joint swelling as the only symptom of Celiac? My 6 year old son woke up a year ago and crawled into our room crying that he couldn't walk. His knee was swollen and incredibly painful to the touch. Bending/straightening was difficult. It persisted and we eventually went through a battery of tests (X-ray, MRI, blood tests, etc.) which showed no reason for the swelling and pain. The doctor ended up chalking it up to synovitis (inflammation of the joint fluid), though with kids this normally happens in the hip joint, and is typically post-viral, neither of which were the case for my son. Eventually the swelling went down, the pain resolved and he was back to normal. Fast forward about 9 months later, almost the same thing happened again, except this time it was his ankle joint on his opposite leg. They put him in a walking boot but after 6 weeks nothing had improved. So, back to the doc for X-rays, exams, etc. which showed nothing. We were referred to a rheumatologist who examined him and everything looked better by then. We decided to repeat the blood work that had been done the year prior, plus test for some other things as rule-outs, due to a very strong family history of autoimmune conditions. TTG IgA was 128 u/mL (normal is <7 u/mL and we learned that 128 is the highest it goes, so who knows how high it actually is). Also his Erythrocyte Sedimentation Rate was 56 mm/hr (normal is 0-15 mm/hr). And there were a couple other flags in the bloodwork: Bilirubin total was 0.1 mg/dL (normal is 0.2-1.3 mg/dL); Albumin was 3.3 g/dL (normal is 3.4-5.0 g/dL).

Due to his TTG IgA, he was referred from rheumatology to gastroenterology and had an upper endoscopy and biopsy yesterday. They took many biopsies. Esophagus, stomach and duodenum all looked normal, though there was mild chronic inflammation and superficial erosions noted in the duodenal bulb. We are waiting on the pathology report once they examine the biopsies.

Does it seem conclusive (pending the pathology report) that my son has Celiac Disease? The doctor said it could be Celiac or it could be latent Celiac? Either way, would any of this explain the joint swelling? He doesn't have any of the classic symptoms of Celiac-- no stomach aches, diarrhea etc. I just am not sure if this possible Celiac was sort of found by chance in looking into the cause of the swelling but is unrelated, or if a Celiac diagnosis may account for the swelling issues?

[trents]

Welcome to the forum, liz.iz.listenin!

I'm not sure that I see the problem with the Bilirubin as his numbers are below the threshold for positive. Did you mistype? Did they check his ALT and AST? About 18% of celiacs have elevated liver enzymes. Low albumin and total protein are also associated with celiac disease via the leaky gut syndrome that comes along with celiac disease. Elevated liver enzymes was what led to my celiac diagnosis 20 years ago and I still have chronically low albumin and total protein. And the high tTG_IGA along with "superficial erosions in the duodenal bulb" all scream celiac disease to me. And judging from the joint pain and elevated sed rate, his immune system seems to be in overdrive.

Edited April 29, 2022 by trents

[Scott Adams]

• TTG IgA was 128 u/mL - normal is <7 u/mL

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

[Wheatwacked]

Nsaid use can cause low bilirubin. What are the causes of low bilirubin? "A 2017 study suggests that lower bilirubin levels might make it harder for the body to remove reactive oxygen species. These are linked to inflammation associated with ulcerative colitis." Just my own thoughts, but bilirubin acts as an antioxident and your son has lots of inflammation, so maybe he's using up all his bilirubin. Find the source of the inflammation, by his blood work apparently Celiac, and the bilirubin may rise to normal.

Not enough choline in the diet causes liver problems. Dead red blood cells are processed through the liver into the gall bladder. RDA for choline for 9-13 years old is 375 mg per day. That is the equivalent of 2 1/2 large, hard-boiled eggs or 4 ounces of lean top round steak or 7 1/2 cups of chopped boiled broccoli every day.   Choline Fact Sheet for Health Professionals

Edited April 29, 2022 by Wheatwacked