My 12 year old son (who was told that he may have gluten intolerance) has had nearly constant abdominal pain, headaches, and a general malaise that he refers to as feeling fluish, for the past 3 to 4 years. He has been on a gluten free diet (also dairy and multiple other indgredient free diet) for the past 11 months and nothing is helping him. He goes to the bathroom every day like clockwork quite normally. He's been checked for parasites (all kinds) and all were negative. He's had colonoscopy and endoscopy and everything looked normal. Over the past year his glands on the sides of his throat have swollen when he had a bad sore throat, but after the sore throat was treated his glands, especially the right one, have remained swollen and quite large. His thyroid is sometimes slightly elevated but the doctor says that it's not something to look at as he's young and it's not too high (maybe one or two points off). He's quite tall for his age (5'8") and weighs 100 lbs so he is very skinny looking. He's also very pale. When he does have a respite from his stomach pain he is a different kid. He loves football and wakeboarding and forces himself to do these even if he's not 100% (which he usually isn't). I don't know what else to do. Should I see an endocrinologist? I have spent a lot of money trying to find out what's going on but after doctors get back normal blood tests they start looking at me as if I'm exaggerating the whole situation. HEEELP!
Welcome to the gastroenterology community! What do you mean that "he may" have a gluten intolerance? Was a biopsy done during his endoscopy to see if he has celiac disease? Has he had a CBC done to make usure he isn't anemic? What are his abdominal pain and migraines like?
The gluten intolerant result was given due to him having two genes which could mean he could have gluten intolerance. It is a test that is done by enterolab. having all three genes would mean he was celiac, but he only has two. my doctor looked at his results from enterolab and did some research and advised me that having two genes doesn't necessarily mean he's gluten intolerant. He's been off gluten for nearly a year and has not improved (I actually think he's worse). He is slightly anemic and I have started giving him vitamin B as this was the only thing that took care of my anemia when I was anemic. Today he was not able to go to school, he had a terrible day yesterday at school too. His headaches are mostly on the front by his forehead above the eyes. His abdominal pain is pretty much evenly spread from his belly button going down and to the sides, sometimes getting up as far as the bottom of his left rib cage. He describes it as being a constant gnawing pain. He goes to bed with the pain and rises with the pain. I can count on one hand the times he's said he didn't have a stomach ache and those didn't last long. I don't know what to do. He's said that he will just have to live with the pain as he's getting upset with having to go to the doctor all the time.
The most accurate test for celiac disease is a biopsy during an endoscopy. There is a rare type of celiac disease where the patient doesn't get better with a gluten free diet, and other courses must be taken. Is he iron deficient? Has he been evaluated for migraines and/or abdominal migraines?
When he had the endoscopy and colonoscopy he was biopsied for celiac. They were both negative. He is on the cusp of being iron deficient. He has never been evaluated for migraines or abdominal migraines. I am going to read up on that as I have come across it a couple of times but never fully looked further into it. Another symptom that he keeps complaining about is that when he sleeps he gets hot. I've noticed that his sheets sometimes are very damp in the morning after he gets up. Would this mean he has night sweats? Thanks for your questions. I shall keep digging and asking questions. I may end up going to a celiac specialist. I imagine that maybe it's the next step, but it would entail traveling overseas, as we live in the Caribbean.
Yes, he had not yet been put on the gluten free diet. I have heard that the biopsies are tricky, especially in children. They don't always show up positive. Usually they should be taken from areas that look inflamed or not the right colour. My sister was biopsied and it showed up positive only in the second biopsy, and it was taken from a small ulcer that had come up, however she has been suffering for 30 years. My sons esophagus and stomach looked pink and healthy.
I'd say that the chances that your son has celiac disease but doesn't respond to a gluten-free diet are slim. There is a rare sort of celiac disease where the patient doesn't respond to the gluten-free diet, but this is very rare.
Thanks for your help. Do you know of any links that deal with this type of celiac where patients don't respond to a gluten free diet? I would be interested in reading up on this if possible. Thanks for all your help.
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