Positive blood test - very confused!

[kam00096]

Hey guys I just joined tonight and am looking for any sort of advice or clarity. Sorry this will probably be really long and not make a lot of sense!

After 10 plus years of nasty IBS type symptoms and 3 years of neuro stuff (feeling off balance and boaty/ dizzy, shaking, fatigue, pins and needles, painful muscles and joints etc) my doc finally tested me for coeliac. My tissue transglutaminase a/b has come back positive (12.0, positive = >10) and I'm going to chase IgA endomysial tomorrow as it says 'to follow' on the print out. 

My gp says I'm 'a little bit positive' and need a biopsy to confirm, but has advised me to 'cut down on pizza' in the meantime then go back to eating normal amounts of gluten closer to the endoscopy. I'm in the uk and they're saying 3-6 months just for the initial outpatient appointment with a gastro so god knows how long it'll take to get the biopsy done. I got a second opinion privately tonight and they said I should go strictly gluten free straight away then do a three week gluten challenge pre-biopsy. 

I have lots of issues/ concerns with all of this... From what I hear biopsies/ scopes can be falsely negative so then I'll have gone through gluten withdrawals and going back to eating it for no reason. I have a severe phobia of vomiting and I'm already feeling grim so am not really willing to potentially make myself even worse twice only to still not have it confirmed. Also the endoscopy on the NHS sounds horrific and will send me into a complete meltdown. 

But, on the flip side if I don't get a diagnosis and just go gluten free now, then will I miss out on aftercare (bloods, dietitian) etc that I might have got otherwise? Also I think having the diagnosis would help me stick to a gluten-free diet more strictly and help my family, friends and work understand better. I'm signed off at the minute because I'm feeling so unwell but I need to get back asap or I'm going to lose my job (and then my flat!). I don't know whether to a) tough it out on gluten for the next 6 months then have the scope on the NHS, cut down a bit then do the scope c) cut it out altogether then reintroduce d) accept its probably celiac without the actual diagnosis and go gluten-free straight away e) spend an extortionate amount of cash to get the scope done privately next week and hope it gives me some answers (but if I do this and it's negative I still won't know where I stand and I'll be broke too). 

I have no clue what to do and my doctor is worse than useless. Yesterday he had no idea why I was there despite the practice calling to tell me to make the appointment, then he asked if I'd ever had bowel problems (have been seeing him and one other doctor regularly for the last 5 years with nothing but stomach problems and have a repeat prescription for anti-nausea meds!), then when I said the dizziness/ boaty feeling I get was worse again he checked my ears! Dunno what he thought he'd find as I've had the same issue for over 2 years and he previously referred me to a neurologist and an audiologist (all fine!) so it was pretty unlikely to have suddenly become an ear infection! 

I guess I'd like to know if this other blood result comes back positive then is that a fairly decent indicator of celiac and would I miss out on proper care if I don't go ahead with the biopsy?  I need to do something soon to get feeling better so I can get back to driving and work.

 

[Irene Joanne]

HI! I'm glad I had the biopsy but if I had to wait six months, I'm not sure if I would have waited. BUT on the other hand I would rather stay on gluten for three or more months than go off and do the challenge. after being off of gluten for even a month your reactions could become so much worse and a challenge would be unbearable. I've been gluten free since diagnosed last November- a couple accidental glutenings made me sicker than ever before diagnose. When I'm struggling still with health issues I am really relieved to have had the biopsy because then I'm not forever doubting the diagnose. 

I just read over your message again. If I had the option to spend a bunch of money and get the scope done right away- I'd have jumped at the chance. 

[kam00096]

Thank you for your reply. I'm still struggling to know what to do. Have been trying to eat 'better' over the last few days, which has basically meant fruit and veg so have been sort of unintentionally gluten free. I really can't afford to go private (my parents talked about helping until they heard about the possibility of a false negative which just isn't an option). I'm really scared again tonight. I'm so dizzy and off balance and just don't feel I should be driving but have to get back to work on Monday. I've also completely freaked myself out reading about gluten ataxia (and I'm still not convinced it's not ms and nothing to do with gluten at all). 

[Irene Joanne]

3 hours ago, kam00096 said:

Thank you for your reply. I'm still struggling to know what to do. Have been trying to eat 'better' over the last few days, which has basically meant fruit and veg so have been sort of unintentionally gluten free. I really can't afford to go private (my parents talked about helping until they heard about the possibility of a false negative which just isn't an option). I'm really scared again tonight. I'm so dizzy and off balance and just don't feel I should be driving but have to get back to work on Monday. I've also completely freaked myself out reading about gluten ataxia (and I'm still not convinced it's not ms and nothing to do with gluten at all). 

Even if you have a negative biopsy, you could still have a gluten sensitivity  and still do much better off gluten. I can understand it's a hard decision to make. I'm in Canada and don't know how your health care compares. Because I don't have a lot of willpower when it comes to diet- it helps me to know 100% for sure that I have celiac. I can relate to the dizziness problems- I've had a lot of that the last ten years. Since going gluten free- I haven't noticed any problems with dizziness. I stressed for years that I had ms- but now I'm thinking it really is just celiac....and Hashimoto's.