I am new here and looking for help and answers. Thanks in advance for any help you can give. I’ve not been diagnosed with coeliac but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a teenager, when chronic fatigue and depression set in. I am 41 now and have a number of illnesses, most of them autoimmune:
•Likely autoimmune atrophic gastritis (under investigation)
•Pernicious anaemia (low B12)
•Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs
•Migraine (three a week)
•Chronic fatigue syndrome
•Investigated for coeliac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward.
I have many other symptoms as yet unattributed:
•Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes
•Circular rash on chest
•Flaky rash on scalp
•Poor positional awareness
•Weakness and muscle loss
•Very poor memory
•Confusion (sometimes debilitating)
•Occasional panting / shortness of breath
•Anxiety and paranoia
•Tachycardia and palpitations
•Debilitating intermittent ankle pain
•Aches in every joint and muscle
•Pins and needles
•Pain in calf muscles when walking more than 200 yards
•Total hair loss on lower legs
•Constipation / diarrhoea
•Blood in stools
While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything.
The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy.
In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free.
I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar.
I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.