Advice Requested - Now Gluten Free, But No Diagnosis

Jmg · July 17, 2014

On 7/15/2014 at 2:12 PM, BlessedMommy said:

Good job, I hope that you can make it through. You either have celiac or NCGS, it's clear that gluten doesn't help you out any!

Thank you I think I've done better this time than the 6 days I did for the blood test. Then I just leapt straight back into my old diet and within a few days I felt dreadful. This time I've been a bit more cautious and although I'm not enjoying it I'm not as bad as I was. Keeping the food diary is helping as I can start to identify some of my 'old friends' - yesterday I got the first hint of chest pain...

Although yesterday was also the first time I 'treated' myself - I had a chocolate eclair and a custard donut. Today I've got 4 spots on my face, serves me right probably!

On 7/15/2014 at 2:34 PM, StephanieL said:

A well respected Celiac expert recommended to us 6-8 weeks minimum for a challenge.

The consultant told me 6-8 weeks. I bargained him down to 6 through fear about if I'd make the distance, although part of me wonders if I manage to continue at this level if I should ask to go the full 8, I won't be doing this again and having put my recovery on hold I'd like as definitive an answer as possible.

Jmg · July 21, 2014

10 days in, today I found dizziness on standing had returned along with a white spot on my fingernail. Feeling depressed, anxious and nauseous, also worrying about potential long term damage from this exercise. On the positive side I did enjoy going out with my family and ordering some food without worrying about contamination, something I'll try to do regularly over the next few weeks, so not all bad news.

Jmg · July 30, 2014

Further in to the challenge I'm finding the neurological stuff much worse than any gastro effects. On the evidence of a cross contamination glutening I experienced whilst on the gluten-free diet I thought I'd be in a lot more stomach pain, but I think that once fully back on gluten that's not the way my intolerance manifests. Depression and brain fog are back in a big way, I feel very down indeed.

Last couple of days I have a persistent muscle twitch which is driving me nuts! I've also had the first inkling of a return of the vision issues I had previously along with more of the chest pain. Still 3 weeks to go, if it stays like this I can get through it, but I miss feeling healthy and happy.

nvsmom · July 30, 2014

Make sure you keep a list a symptoms and dates and bring it to see your doctor. He should know how this makes you feel.

Hang in there.

Jmg · July 30, 2014

On 7/30/2014 at 1:35 PM, nvsmom said:

Make sure you keep a list a symptoms and dates and bring it to see your doctor. He should know how this makes you feel.

Hang in there.

Thank you

I've kept a daily record of what I've eaten and any symptoms I've noticed. It's helpful, gives me a sense of control and otherwise I think I'd forget some of the weirder things I notice, especially as the fog descends!

Jmg · August 22, 2014

Hello again

Today I had my endoscopy. I chose not to have sedation, just the throat spray. I thought that I'd be happily watching the screen and taking a tour of my upper intestine, but after about 30 seconds I settled for closing my eyes and focussing on breathing! It wasn't a pleasant experience by any means, but it was at least brief (although it didn't feel that way at the time). If you'd asked me straight afterwards I'd have opted for sedation next time, now that I've recovered I'm less sure. It's nice that I was able to drive myself away and be ok a bit quicker.

The GE who conducted the test didn't see any evidence of celiac in my duodenum, but she did find a small hiatus hernia and took 4 biopsies for testing. I'm hoping to see my consultant in 2 weeks time and will stay on gluten until then in case he suggests any further blood work. After that I'm off it for good, biopsy results notwithstanding. I've got more than sufficient evidence on my skin, fingernails, mood etc from this gluten challenge for me to know that I have a problem with it whether it fits a classic celiac diagnosis or not.

Thanks as ever to all of you that have replied and helped make this process feel a little less lonely.

nvsmom · August 22, 2014

Glad it's done. Good luck with the diet. I hope you have a speedy recovery!

BlessedMommy · August 22, 2014

That's great that you got the endoscopy done. I hope that you get answers soon! Either way, though, like you said, you know gluten is a problem for you regardless of which box it fits in. Are you getting any celiac bloodwork done?

Jmg · August 23, 2014

On 8/22/2014 at 11:09 PM, BlessedMommy said:

That's great that you got the endoscopy done. I hope that you get answers soon! Either way, though, like you said, you know gluten is a problem for you regardless of which box it fits in. Are you getting any celiac bloodwork done?

I'm continuing the challenge until I see the consultant for a follow-up, hopefully within 2-3 weeks, so that I could have another blood test. By then I'll have been back on gluten for 9 weeks. I think I'd like as comprehensive a blood test as possible at that point regardless of what the biopsy says.

Jmg · May 20, 2016

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.