My 15 year old daughter was diagnosed via biopsy w/ Celiac when she was 9. She has been perfectly compliant with the diet because for the first time in her life she was physically thriving. I am confident, 100%, no shadow of a doubt that she continues to be compliant with the diet. She only has accidental glutenings maybe 1-3 times per year. We keep a gluten free house. She is an extremely sensitive Celiac (intolerant to Oats and everything).
Every time she eats, she feels glutening symptoms about 20 minutes later and always has very loose stools when she goes to the bathroom. A visit to her GI revealed low on vitamin D and B12 and possible signs of active Celiac in an endoscopy. Another visit to an allergist revealed no actual add'l food allergies. GI doc seems "stumped" and had no add'l suggestions.
...About 5 months ago, her Celiac symptoms began resurfacing with no obvious signs of glutening. Her acne flared up (ok, maybe normal for a teen, but otherwise had great skin), diarrhea and loose stools came back, started losing weight because everything she ate would make her feel crummy.
We did a loose food elimination diet and removed meat and dairy and made an appointment with her GI. He scheduled the full range of blood tests and another endoscopy to check things out. The blood tests showed deficiency in B12 and D vitamins and the endoscopy showed mild signs of Celiac (meaning gluten exposure). I may have been able to explain the gluten exposure because we *thought* she had been glutened some time in early September (this was early October when we saw the GI), but now it is February and I am completely sure she has had zero gluten exposure since then.
The doctor gave us no real course of action other than to see an allergist about additional food allergies. We did, and she came up negative. Nada. Zilch.
The problems persisted and we did a more thorough elimination diet. Keeping meat and dairy removed, she also noticed symptoms were worse after potatoes (but no other nightshades), corn (sorta, she says), peas, some nuts (peanut butter bad, almonds good).... But we have never reached a point where she feels "right" again.
I have made an appointment with a new family doctor (we needed a new doc and she hasn't had a well check in some time) and am hoping for kind of an overhaul/holistic approach, but hoping someone here may have had similar experiences.
I hate to worry about refractory celiac or IBD/Crohns , but egaads. The poor girl just can't catch a break.
Thanks in advance for letting me vent and for any insight.