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Member Since 10 Aug 2010
Offline Last Active Nov 19 2013 09:54 AM

Topics I've Started

Help.. Desperately Needing Advice!

18 June 2013 - 11:32 PM

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?

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