Hoping someone here has some suggestions. I am a 63 yr old celiac, diagnosed almost at birth. Was on a gluten free diet as a young child but but gradually given a regular diet. I was always told I was an "allergy celiac" but had outgrown it. Not certain now what that even means. In my early fifties was being investigated for non hodgkins lymphoma, Had peripheral neuropathies, just a multitude of health problems ..all seemingly unrelated.. I am a RN, now retired. One night I was speaking with an internist who had been friendly. She told me if she didn't know better would say I was celiac as it explained my symptoms. Told her I HAD been. but had outgrown it...She just laughed..I honestly didn't know it was autoimmune.. I immediately went gluten free with a lot of improvement! Until about a year ago.
I am now retired following an auto accident. This wasn't planned. I am barely surviving financially. I exist with the help of food stamps and a very small pension. I have limited access to health care through a clinic with a GP on a fee based on income. Very limited testing available as I can't afford to pay for any. The GP has almost no understanding of celiac disease. I am having multiple episodes of diarrhea a day. Up to 20 to 30 times a day. Constant cramping and nausea with some bleeding. It is frequently VERY foul.. I eat a really healthy diet. I grow many of my own veggies. Run a strict gluten free house. almost NO GMO's ... I cook strictly from scratch. Everything is fresh and starts as single ingredients... I suspect multiple food intolerances. I have already eliminated soy. Tried eliminating dairy. Still use no milk but do use cheese periodically and butter. I kept a food diary but couldn't find any correlation between symptoms and specific food other than possibly corn....and the soy I have stopped. Corn seems to be the fresh product. I have wondered if it was the GMO issue as it is not all the time! I want to ask for testing of some sort but am not certain what to even ask for. I was Never biopsied as I went gluten free immediately at the suggestion and have very serious reaction to any gluten. Could not tolerate gluten in my diet again to allow for biopsy. I do have children and grand children that have been diagnosed celiac. with other intolerances as well.
What would be a logical next step? My doc hasn't a clue. Malabsorption is now becoming a big issue! B12 deficiency, severe osteoporosis, low calcium, magnesium, anemic, hypothyroid. My electrolytes are frequently really off due to diarrhea. I need to do something but not certain what to even suggest to her. Being sent on to a specialist is NOT a possibility. She is more concerned about my altered liver enzymes, high cholesterol and triglycerides. Keeps telling me I need to be more careful about gluten! I am getting really sick! I can not go completely organic. Just can't make money stretch that far with only $100 available after I pay lot rental for my RV that I live in. It just barely covers my BP meds. Are there any tests that might show other intolerances? or interactions?