Hi all, I'd love some feedback on my 11 year old son who is waiting for a diagnosis. He has been unwell for about 6 months. His symptoms include: early morning (4/5am) nausea and vomiting, loose bowels, fatigue, headaches, aching legs, persistent dermatitis on cheeks. Recently, I noticed he wasn't growing as expected. After measuring him, we found his height had dropped from above 50th percentile to 25th, and weight from 50th percentile to 5th. I took him to our GP who confirmed he only grew 2cm in the past year and lost weight, and subsequently referred us to a paediatrician. We saw the paediatrician who ordered extremely comprehensive tests (including urine and poo testing, x-ray on wrist, hormones, thyroid, liver, kidney, diabetes checks, etc). While waiting for all results, our GP received some preliminary findings indicating coeliac disease. The GP recommended starting a gluten-free diet and referred us to a paediatric gastroenterologist. Most test results are normal except: Iron levels:  18 (normal range 20-200) Anisocytosis and Microcytosis (abnormal sized red blood cells indicating iron deficiency anaemia) Coeliac-related results: DGP IgG:     >250 (normal <15) DGP IgA:      8 (normal <15) Tissue IgA:   1 (normal <15) Tissue IgG:   1 (normal <15) Genetic markers are present for coeliac A comment was made on the blood tests that total serum IgA would be tested and commented on if below 0.07. There was no comment so I assume it wasn’t that low. While I understand it could be coeliac disease, gluten intolerance, or wheat allergy, his significant growth issues suggest coeliac. The paediatrician won't see me for 5 more weeks (because he's waiting for one more test he did on his chromosomes), but I'm concerned about waiting that long given his symptoms. Clearly he shouldn't be eating gluten regardless of the diagnosis, and I'm keen to help him feel better and start growing again, especially with puberty approaching. The blood tests were extremely comprehensive and ruled out everything except coeliac disease or a strong gluten intolerance. My GP is adamant it must be coeliac because of his symptoms. My GP said, "Don't worry about the chromosome test—that's just precautionary. His blood tests, weight loss, lack of growth, iron deficiency, fatigue, dermatitis, and other symptoms all point to coeliac." Would starting a gluten-free diet now and doing a gluten challenge later be unreasonable? (I do understand the reason to wait for a clear diagnosis, I just want him to feel better. Also, he is homeschooled so I can very much be in control of his food to ensure no cross contamination, etc) Also, does anyone have experience with highly elevated DGP IgG (but normal other results) and testing positive for coeliac? For what its worth, I personally have had many checks for Coeliac over the years and the results are always "unclear". Apparently I'm a complicated case, so I just eat gluten-free. Thanks!

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Were any other celiac antibody tests run besides the DGP-IGA? Was a total IGA test run to check for IGA deficiency? There are multiple IGA tests that can be run as well as several IGG tests when checking for celiac disease. The DGP-IGA test is helpful when diagnosing children whose immune systems are immature.  

I think we all wish that managing celiac disease was a simple as just avoiding gluten. And I think we all enter into the journey with that naive misconception. And for some, it is that simple. But for many, it is not. The same processes that resulted in the immune system misidentifying gluten as a threat opens the door for misidentifying other food proteins as threats. At it's core, all this simply is the result of an immune system that has become dysfunctional in some ways and is hypervigilant.  I assume you already know that genetic testing cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only about 1% develop active celiac disease. However, genetic testing can be used as a rule out and thus to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity). 

It doesn't look like either avenin or casein would contribute to her IgA levels being high. From my understanding, that is only an indication of gliadin, which is only in gluten.  I should have noted that she does not have any symptoms of being constantly exposed to gluten as the test result shows. No intestinal discomfort, no brain fog, no lack of energy. She is still growing and gaining weight, which was the first indicator that she was not absorbing nutrients properly and led to her celiac diagnosis.