Please let me know your thoughts - all opinions welcome (but please be gentle, I am feeling emotional!).
I'll try and keep the story short: mother has IBS and psoriasis. Never tested for celiac disease. Grandmother had severe osteoporosis, never tested for celiac disease.
Me (age 39) : recurrent, worsening digestive issues, cramps, soreness, swelling, diarrhoea, endless gas and extensive bloating. Acne all my life. Eczema patches on my body. Keratosis pilaris on arms and thighs, diagnosed recently with a ventricular ectopic beat (benign) as suffering from increasingly bad skipped heart beats. Seven first trimester miscarriages (all investigations came up negative, including fetal testing), and two live births.
18 months ago I did a home coeliac test which came up positive. The test checked for IgA AND IgG antibodies. I requested a blood test at the doctors, but when I called to get my results I was told over the phone they were negative and the doctor's comment was "Normal, no action". (Note - my usual doctor was away and this was all done by a different doctor)
Last week, finally at my wits end with the bloating and pain, I requested a copy of those results so I could check the numbers myself.
I was low (out of range) for potassium and calcium. I had a high (way out of range) level of serum C reactive protein. IgA was just listed as "negative".
I went back to my usual doctor today and he said with my results that they should have at least repeated the test, or done further investigations. He said it was in all likelihood a false negative as the IgA test isn't always a reliable indicator.
In the UK they no longer do an IgA count, just a screen for it's presence at a certain level, so I know I could be IgA deficient.
The home test implies that I got a positive result for the IgG component, which would make sense as to why the "official" blood test was negative.
I've been through four miscarriages since I was told my official test was negative, and I have been so depressed and bloated and miserable for two years that I am just at the end of my strength.
6 days ago, in desperation, I stopped eating all gluten.
By day 4 my eczema had lost it's redness and stopped itching. My insomnia is almost gone. My mood has improved beyond belief, and my stomach - my fat, bloated, sore, painful stomach - has been flat for 6 days.
My doctor said today that we could request a biopsy, but that I would need to eat gluten.
I am so crushed and emotional about what I have been through, possibly needlessly. I am so sad that the doctor that reviewed my results didn't think that all the out of range numbers meant any follow up was needed despite the official "negative" for IgA.
I refused the biopsy today, I just feel that I want to be left alone to try to put my life back together.
But is this a mistake?
When people ask if I am coeliac, how can I explain all of this to them? Should I just persist in order to get a diagnosis?
I just keep crying for all those babies I lost that may have just been because some stupid doctor somewhere thought that I didn't need any further attention.
What would you do? I don't ever want to touch gluten ever again after all this.
Sorry for the long rambling post. I just need some advice on what to do. I don't want people thinking it's "all in my head" or that I'm just jumping on the bandwagon, but equally, I don't want to subject my body to any more gluten given how much difference it's made in just a few short days.
I just feel exhausted and emotional over the whole thing :-(