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lorna

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lorna Rookie

I was diagnosed with Celiac when I was 5 years old and was in and out of hospital getting all the tests and biopsy's etc.

Up until I went to secondary school I did stick strictly to a gluten-free diet with the aid of my mum to keep me right. Unfortunately in my teens I rebelled a bit and decided I knew everything and started introducing wheatproducts into my diet, mainly crisps & fat cakes etc. I didn't seem to be suffering any side effects although was a bit irratable at times but this was just put down to my age. Had another few test done and low and behold it came back I was no longer Celiac.

I have then since carried on with a normal diet, although through the years have had very bad eczema, psiorias of the scalp, and now I am begining to suffer from short pain spasms in my knee. My hair has been thinning at the front of my head for the last 10 years and have learned to accept this by colouring my hair light shades to camaflage my scalp.

I have been to my GP twice now enquiring if there are any treatments available to re-grow my hair, the first time was about 20 years ago and the second time was in December of last year. Both times I have been told that there are no roots therefore it is unlikely that re-growth will occur. Never has there been any link to my Celiac history, but I am starting to wonder if all this time I have actually been Celiac and wrongly diagnosed in my teenage years.

I have bloods back and I am definately ceoliac, been and had DXA scan done for osteoporisis this is clear as i do regulary go to the gym I think this has helped. Bloods also show that I am severely aneamic and on 400mg of ferrous sulphate daily.

I have been on a gluten free diet since February this year and the changes I have notice is that I do now sleep at night and feel drugged when I get up in the morning for havingso much rest. How ever since changing my diet I now have joint pain that I never had before in both my elbows, not sure whats causing this, can anyone shed some light. have had 2 different anti inflamitary courses from docs but to no availe. This may not be related to ceoliac the doc did say I had golfers elbows but I have not done anything different apart from change my diet and thats when it started.

The big test will be on friday of this week when I have my Endoscopy again!!!


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      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
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      Thank you for sending me this information 🙏🏻❤️✌️
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