Day 12 of my gluten challenge

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Just a bit of background...I'm about a year into the whole testing 'process'. I've always had gastro issues and general poor health. The past few years, I've ate a light gluten diet. I had some bad health issues last year (rash and immune system issues) that led to some questions about coeliac. I had a blood test but it was neg- I hadn't been eating enough gluten. I then went gluten free for an experiment and most of my symptoms resolved within 2 weeks. I went back to the GP and got referred to gastro. I knew it would take ages so I went GF while I waited. I had already had so much time off work and actually if I had continued eating gluten and feeling the way I was, I would've ended up with no pay. 

So anyway, I'm day 12 of my gluten challenge and it has been odd and different to what I expected (unfortunately also different to what I'd hoped! i.e. to be fine!) At first all I felt was an increased heart rate, some weird dreams and then a bit tired the following day but as the days have gone on, my symptoms have been getting gradually more intense. They're just not exactly 'text book' so I wanted to share to find out if this is what other's have experienced. 

I have been waking feeling tired but mostly normal so I try do a few things before I eat gluten. About an hour after eating, that's when it all starts- I get a rapid HR a feeling of anxiety (but just physical symptoms, I'm not actually anxious) and then I get the most intense fatigue, it's seriously as though I've been drugged. I literally cannot hold my head up and I can get quite emotional too (again though- I'm not actually feeling upset). This intensity passes after about 10-20 minutes but the fatigue will last the most of the day. I will also have word finding difficulties, confusion and a really fuzzy head. 

Weirdly, my stomach hasn't been that bad. I've had a little bit of gas and bloating but nothing as bad as I've experienced before (I can turn into a 7 month pregnant lady in hours!). I've had a bit of nausea and some stabbing pains which are pretty intense but really only last a short time. This is really quite mild gastro stuff compared to what I have dealt with throughout my life. This is maybe a little TMI but my stools have really changed- when GF they were dark and no visible bits etc but now they're pale and basically look like chewed food and quite a bit of mucus (sorry!! redface ) 

I've also started to get really itchy skin- mostly in the evening. One of the main issues last year was a rash on my face and scalp which I thought was DH but the dermatologist told me it doesn't happen on the face. I've not got any actual spots/blisters but it's starting to feel like insects are eating my skin, which is a feeling that drove me mad when I had it really bad last year. 

My sleep is also getting troublesome. I've been really unsettled at night- very hot and just feeling like I'm scared. I've been waking up with a fright and have been having really vivid (but extrememly bland!) dreams. It's like I feel like I'm still half awake. 

All pretty odd. I just wondered if this was familiar to anyone? 

Thanks! smile

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5 Replies

  • Posted

    Oh, that's awful! sad

    I hope you get a proper diagnosis - it seems like you do have CD, but maybe it's an allergy or sensitivity - time and tests will tell...

    I think this is more typical than you think. It sounds like my son's symptoms, but his bowel habits were pretty unremarkable. He was diagnosed just after turning six. He has eczema though, and although I was told it certainly wasn't DH, I still expected some remission when his gut healed - the healing happened but his eczema is as bad as it ever was.  He had crazy dreams, major fatigue, itchy skin and some anxiety, too. (He also had headaches, stomachaches, fogginess, joint pain, moodiness, small things overwhelmed him, etc.  Never the bathroom problems or small size associated with CD in children, though.)

    You said you felt better in about 2 weeks, so I'm happy for you that by the time your results are back, you'll be on the rebound already. When is your test?  I wish you luck!!

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    • Posted

      thanks for your reply. It's bad enough going through this myself but I can't imagine how hard it would be to watch your young son go through it. Poor thing. I hope he's much better now. 

      I am hoping I'll bounce back quickly after the challenge although I don't think I've ever ate gluten this regulalry so it's definitely unchartered territory for me. I get my endoscopy at the begninning of sept...they couldn't give me an actual date because the appointment booking didn't go that far ahead rolleyes 

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  • Posted

    I refused the 'gluten challenge' as it's called. I had been so ill for so long and felt so much better after giving gluten up there waas no way I was going back. Also, when I have made a couple of mistakes and eaten gluten the symptoms are really so muh worse than they originally were. This is because it is an autoimmune disease and our body goes into 'fight mode' when it detects gluten.

    I was eventually given genetic testing and diagnosed through this. It is not offered routinely as it's more expensive and only offered at the bigger hospitals. (mine was Southampton)but I would push for this. It is quite ridiculous that you have to make yourself more ill to get a diagnosis. Gluten is a poison for Coeliacs......would a doctor to ask you to eat arsenic just to check it does poison you!!

    Unfortunately, because there is no money to be made (phamaceutical company pills)out of us Coeliacs are largly ignored. I was put on antidepressants to shut me up. I wasn't depressed I was ill!

    I hope you get sorted soon and feel better. You are not alone......with your symptoms or your lack of care by the medical profession.

    Best wishes 

    Lyn smile.

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    • Posted

      Thanks Lyn. It is so ridiculous that this is the only routine way to get a diagnosis. I do suspect that in about 10 years time they'll laugh at this process! I didn't know about the genetic testing but to be honest it's felt like a battle to get this far testing wise so I really can't imagine getting the go ahead for that. I also feel I'm 2 weeks into it now (nearly!), I'm as well to just see it through.

      Despite having gastro problems my whole life, this is the first time I've been referred to a gastro consultant. I had a 7 month wait to get my initial appointment so I actually feel 'lucky' to be getting this test at all. I know that's not right and I'm entitled to the best care but I don't really feel that way. 

      I guess it was my choice to do the challenge. I could've just continued eating GF with the diagnosis of IBS and gluten sensitivity and hoped I'd solved the issue but I wasn't 100% well so I still had some doubts about whether it was really gluten. I also feel that there's quite a lot of anxiety with the prospect of having CD and concerns about cross contamination- I had wondered that if I was 'just' gluten sensitive then maybe there would be less rigidity needed. I was also told that if I did have CD, there could be other things that would need to be checked like bone density and other consequences of malabsoption so I thought finding out for sure was really the best thing for me. 

      I totally agree that the lack of money to be made means people with CD and other similar autoimmune or gastro issues are just left to get on with it. If I was a paying customer, I can only imagine the various tests and prodedues I would've been offered by now!! lol

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    • Posted

      Yes to you both!!  There was recent news about research though.

      Lyn, you can have the genes but not the disease - I do understand why you would call it a day and go with that - I didn't think doctors would stop there, though...but happy you have your diagnosis.

      Betty, you'll not only know about cross-contamination concerns, but you'll also have insight as to whether or not this is auto-immune. That seems to open people up to additional/other auto immune diseases...you'll know to watch out for other conditions down the road (or still keep going now, if that's what you have a strict GF diet alone doesn't fully help in a few months after you start again). You're following what doctors call "The Gold Standard" and you won't have questions down the road. 

      Scientists are trying different angles to fix the problem of gluten and something should come of it down the road...but not for YEARS.  What I don't hear about is a better way to diagnose... So yes, they follow where the money will go!  Better than nothing...but I hope kinder tests come about, too!

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