I'd really appreciate any advice members could offer. I've realised only recently that a lot of different symptoms that I've experienced over 20 years or more may be connected.
In January, following a period of ill health I changed my diet, conforming to a large extent to the 'paleo' lifestyle, with no processed foods or grains. Although I wouldn't have classed my previous diet as unhealthy, within days this change had a remarkable affect on my mood and physical well being.
I didn't fully join the dots until March. By that point I had my first beer and noticed a reaction over the next couple of days. I started to wonder if gluten may be an issue after finding this site and several others. I appear to have many of the symptoms of celiac disease including: Seborrheic dermatitis, depression, joint pain, chest pain, abdominal cramps, swollen lymph nodes, malaise, psoriasis, urinary tract infection and some signs of malabsorbtion. I also have asthma (from 12) hayfever and allergic reaction to animals.
I've had various medication or tests concerning each of them and have moreobver for a long time had a feeling of unease as if something wasn't right. At no time however as a doctor made any connection between them. In February of this year I started to put the pieces together.
I went to my doctor and he arranged a blood test. I'd been gluten free for 2 months and started eating gluten immediately. I reacted within about a day and a half, gradually feeling worse, wit my skin issues the first visible signs. I was only back on gluten for 6 days before taking the test. By then I felt dreadful.
I returned to the doctor and found the test was negative. I asked him if 6 days would've been long enough for the test to take effect. He said he thought so, given that I reacted so strongly, however I've since read that this isnt the case and I may have had a false negative. The Doctor admitted he didn't know much about celiac and offered to write me a referral if I could find a specialist who may be better placed to help.
Today I'm gluten free and feeling better every day. I've had two instances where I think I've eaten gluten. Once in a soup, which I found had included a gluten containing seasoning. That brought the dermatitis back on scalp and chest. I appear to have reacted again since then, but have not nailed down the food.
My problem is whether I should pursue the diagnostic route or simply get on with enjoying my life gluten free. I've read stories here and elsewhere of how long and hard others have strove for a diagnosis. I reacted very badly in just those 6 days back on gluten and the thought of doing this for months to get a diagnosis is not a pleasant one. I'm also worried about the damage I may have inadvertently done to myself with many years of eating gluten as I've had some or all of these symptoms for over 20 years (I'm 41 now). My life is so much better since I made this change and there's no treatment at the end other than eating the way I do now. On the other hand I have no objective proof and for all I know this improvement could just be a placebo effect. I just don't know whether to go down the medical route or just get on with life as a non diagnosed celiac?
Thank you for reading this and any advice you can offer.
18 months on, a belated follow-up! Your support and reading other accounts was very useful to me. So here's what I've learned, I hope it's of use to others.
The Gastroenterologist informed me the endoscopy had revealed a hiatus hernia but the 4 biopsies hadn't shown coeliac. Coupled with the previous negative blood test he ruled out coeliac, but given my reaction to GF diet he recommended I avoid all gluten for life. Non Celiac gluten intolerant by elimination was therefore my diagnosis. He offered me a prescription of omeprazole for the hiatus hernia but I declined. I'd reason to think that my gut issues would improve once I stopped gluten and was reluctant to add additional medication. I asked for a second blood test as the first may have been compromised. I've not seen the result but my GP said he didnt see a positive for coeliac. And that was that! The end of diagnosis, I won't undergo it again. I went gluten free after the 2nd test. Despite the hiatus hernia I now eat without issue.
For others who may be on their own journey of discovery, these are some of the symptoms that have either gone / or vastly improved since I went gluten free:
Back Pain, Depression/Brain Fog/Anxiety, Headaches, Stomach cramps, Noisy stomach churning, Chest pains, Vision issues (greying out of vision), Postural hypertension / POTS dizzinesss and heart rate on standing (don't know which it is), heart palpitations, various skin issues, Intense sweating/thirst/need to urinate, hyperglycaemia, other digestive issues, frequent chest infections and permanent flu. Doubtless there will be others if I think about it long enough, which I try not to!
I continue having skin issues, although reduced on new diet . When I finally saw the consultant dermatologist I had a shock. He asked me about my blood results in particular the high IGE score. He then listened and asked questions about the gluten investigations. This seemed to be the first time in years that a doctor had took the time to read my notes and asked me to aid in a diagnosis. It put other experiences into sharp relief. The doctor identified my scalp issues as seborrheic dermatitis and folliculitis on chest. I now use a combination of shampoos to deal with it but I know that if I have any dairy I'll see it on my skin soon.
I've since had a further example of how gluten affects my skin. A year into gluten free life I noticed a very itchy rash on both elbows. The barley malt in the cereal I'd been eating (aldi mornflake cornflakes), previously noted as gluten free on the UK coealiac guide may have been to blame. I removed it from my cupboard and the rash (maybe dermatitis herpetiformis?) soon disappeared, but it suggested to me that I'm either coeliac, or as close to it as makes no practical difference.
I suspect I'll always wonder if the diagnosis is accurate. From the apparent weaknesses in the UK blood test discussed above as well as the relatively small number of biopsies taken there is room for doubt and it seems some coeliacs can go undetected in any case. I wonder if I'm one of them, or if it even matters? If I'd been tested at my worst, before I first went gluten free, would the results have been different? I know I have a major issue with gluten which is linked to my auto immune system. Perhaps an atypical presentation of coealic, but a guess is all it will remain, supported by experience but not results. Regardless I have enough correlation to keep me honest on the diet. Indeed, today I occasionally self identify as coeliac to differentiate myself from anyone who may treat the gluten-free diet as a fad, solely so that restaurants will take appropriate steps with food preparation. On the whole I've managed to steer clear of contamination, but it does occur every so often however careful I am.
I learned during the challenge that being able to eat gluten filled foods once you've identified them as an issue, isn't as enjoyable as expected. Although nice to order anything from a restaurant or takeaway, its hard to enjoy food when the challenge was making me feel so ill. I often found myself having to force myself. It's also a little easier being Gluten-Free having done the challenge and had that one last beer, kit-kat, chinese takeaway etc! Although I didn't get the diagnosis that may have helped I'd recommend those unsure do the challenge if they can.
My sincere thanks once again to those above who posted their kind advice and support. I'm going to post elsewhere on this board regarding how I've been/not coping with life since and I'll update this post with a link there when I do in case its of interest.