UK Testing and length of Gluten Challenge

[Gemak]

Hi Trevva and Morganastar 

I’m now a little over 5 weeks on the challenge, I’ve got my blood test tmrw shy of 6 weeks, I’ve held it off as long as I can I hope it’s enough I really can’t face carrying on over Easter. I had a hot cross bun this morning and had a sharp pain in my lower left belly and needed the loo straight away, the pain is sometimes above or below my belly button or on my right side so never in the same place. I’ve also got itchy upper body mainly top of my back, shoulders and neck I’ve got horrible scratch marks but trimming my nails helped and I’ve got hives over my upper legs which get really sore if I scratch them, the doctor didn’t mention DH but said my skin itching and hives made him more convinced what I had was celiac. I really feel for you, three weeks was when I really felt like I’d had enough, i think at three weeks the gluten was building in my system along with eating too much of it and found myself slurring and stuttering and the itching was awful, it has eased a little since eating a bit less gluten a day but I’ve found the stomach pains on eating gluten have sharpened. I’m really glad I phoned my doctor to let him know my symptoms and that I was struggling at three weeks because I think it all helps with diagnoses. I’m at the point now where I can’t walk far or stand on my feet for long without feeling light headed, I can’t remember anything and just generally exhausted. I really empathise with you and hope you get through it, I really hope we all  get some answers x

[Lemuel P. Belmonte]

On 3/18/2021 at 3:21 AM, BThompson said:

Check out Veronique Mead’s Chronic Illness Trauma Studies Blog - where she talks about the huge amount of studies being done in this field and her own experience of healing herself from ME and other symptoms working with trauma therapy.  In my own case I know that my celiac symptoms were triggered when I had a nasty fall and ended up with serious concussion, after this event I started showing very definite and debilitating symptoms initially to wheat then it progressed to all gluten products and I also became lactose/casein intolerant too.  As I have had further traumas many other food intolerances have slowly appeared over the years.  Linking the body with the mind is not something that mainstream doctors understand or are willing to investigate, but we are a “whole” and everything physical, emotional and psychological interacts. If you look at work using the therapy Internal Family Systems (IFS) a therapy discovered by Dick Schwarz it highlights how parts of our internal systems will hold onto trauma way beyond the point of recovery and only when learn how to release and let go of these past traumas can we free our bodies.

Given our modern day lives where we are subject to constant stresses from so many different sources, our 24/7 lifestyles, highly processed food manufacturing, environmental pollutants and the growing numbers of people affected by food allergies/intolerances, one must certainly look seriously into the effects of trauma/stress and 21st Century living on our long term health and its role in auto immune diseases such as celiac and gluten intolerance/sensitivity.

This sound like my journey!
I was sick all my life with symptoms never got my diagnosis until I was 51.:(:(
I was told IBS.. Nervous stomach constipation I have 3 autoimmune diseases I’m sure because of my undiagnosed Celiac 
I’m so glad that you are on your way to good health!
Sincerely Lemuel.

[morganastar]

Hi all!! I'm just back with a quick update, so my blood test last year was negative for coeliacs, but my doctor said if cutting out gluten eased my symptoms to go ahead and do it (so I did!). In weirder news is, I may have just discovered the cause of my stomach issues, after an emergency hospital admission last week, have been diagnosed with something called mesenteric panniculitis. From what I understand is a really rare disease (potentially auto-immune, but so rare they don't currently know the cause) that causes a lot of the issues I've been having, though sometimes gluten can make the symptoms worse, though may not mean I can never eat gluten again (might have to do a little food diary test) but at least I know I've not gone mad, and that my symptoms do have a cause! Anyway, I hope you are all managing ok xx

[trents]

16 minutes ago, morganastar said:

Hi all!! I'm just back with a quick update, so my blood test last year was negative for coeliacs, but my doctor said if cutting out gluten eased my symptoms to go ahead and do it (so I did!). In weirder news is, I may have just discovered the cause of my stomach issues, after an emergency hospital admission last week, have been diagnosed with something called mesenteric panniculitis. From what I understand is a really rare disease (potentially auto-immune, but so rare they don't currently know the cause) that causes a lot of the issues I've been having, though sometimes gluten can make the symptoms worse, though may not mean I can never eat gluten again (might have to do a little food diary test) but at least I know I've not gone mad, and that my symptoms do have a cause! Anyway, I hope you are all managing ok xx

Don't forget about the possibility of NCGS (Non Celiac Gluten Sensitivity). Many of the same symptoms as celiac disease but won't throw antibodies so lab work would be negative.

[Scott Adams]

@morganastar I had to look up mesenteric panniculitis, as I've not heard of it before. Did they do a biopsy to diagnose that? I do wonder if it could be a related disorder to gluten sensitivity, but I've never heard of such a connection. Has the gluten-free diet helped with your symptoms?

[morganastar]

7 hours ago, Scott Adams said:

@morganastar I had to look up mesenteric panniculitis, as I've not heard of it before. Did they do a biopsy to diagnose that? I do wonder if it could be a related disorder to gluten sensitivity, but I've never heard of such a connection. Has the gluten-free diet helped with your symptoms?

Hi Scott! I had never heard of it either! I think there have been around 300 recorded cases so it is all a bit strange, there are only specialists at Mayo apparently (and then like 1) and being that I am in the UK it is not that helpful, so I am just looking around for someone who knows what it is.

I haven't had a biopsy yet, it was just picked up on a CT with contrast dye (I was basically bluelighted into hospital with an almost 40 degree C temperature, severe tonsilitis and agonising stomach pain last week and had to stay in for a week as couldn't eat or really drink! Much fun!) Before that though, cutting out gluten had seemed to have a slight beneficial effect, though I had been having a couple of more strange symptoms recently that they were questioning to do with nutritent or bile absorpsion (I am not really sure, it is confusing!) but to hear it could have been due to this MP thing the whole time (where other people have mentioned that certain foods can trigger it, as well as stress) kinda helps put the puzzle pieces together!