All my tests come back negative

[MausenMumma]

Spent a day with the NHS today, to explore possible appendicitis, after the antibiotics didn't help what doc thought was a UTI.

Inflammatory Markers - normal. In fact, my blood is great, apparently! CT scan of my pelvis shows all healthy and normal.

Necrobiosis Lipoidica not a common complaint, so not in the scope of enquiry.

GERD? Not part of the enquiry. But prescribed antacids work.

Undiagnosed coeliac? Undiagnosed. Gluten intolerant? Eat no gluten.

Still in pain. Still feeling totally inflamed. Pain killers and rest.

So no diagnosis to take to my employer.

I really feel like joined-up thinking is needed.

Sorry if I'm preaching to the choir. Our NHS is great, but I'm wondering how I can break out of their siloes. Or find a creative GP. I'm feeling it's all down to me to research (but don't share research with dismissive professionals).

Also feeling like people think I'm putting this on, or I'm a hypochondriac.

Thanks for listening. X

[Frodo]

I'm sure you're not putting it on. I've had terrible pain and disabling symptoms and the tests offered show 'normal' results.It's worth remembering that the tests are not 100% perfect. My son had really bad appendicitis which was not picked up at all by blood tests, but they did operate in the end and it was so infected it was about to burst. I had a raging tooth infection and the blood tests I was given were absolutely normal, so picked up nothing.

However, from your point of view, your CT scan is very reassuring. It means you can begin to rule things out.

I think you do have to do your own research at this stage, and find a way to ask clinicians about what you find in a way that is taken seriously, eg by using accredited medical sources and writing a list of symptoms and signs.

Sorry I can't be of more help: it's a difficult situation.

[Hidden]

Have you tried following a gluten free diet? If you have and feel better then continuing on it is the best thing you can do. Could be gluten intolerance which is different to celiac.

[MausenMumma in reply to Hidden]

Yes, I live gluten free.

[MausenMumma in reply to Hidden]

You're right; I can rule things out. X

[Hidden]

Stupid question from me, but have you been tested for coeliac? Also, do you have any additional health symptoms/conditions beyond GI/abdominal pain?

[MausenMumma in reply to Hidden]

Yes, I was tested, about 2 years ago, but I'd already eschewed gluten, so null and void. Re: symptoms and conditions, sorry if my rant wasn't clear. Yes, I have Necrobiosis Lipoidica, GERD, joint pains, fatigue.

This last two weeks? Cystisis, kidney infection, diarrhea (probably down to the antibiotics I was taking for kidney)...

[Hidden in reply to MausenMumma]

Wow, that's a lot. I have no clear answers but can suggest mast cell activation syndrome (MCAS) as something worth looking into, histamine intolerance (mimics coeliac, your GP and gastro will be clueless on this), lectin-free diet (lectins mimic gluten, your GP and gastro will be clueless on this), SIBO (small intestinal bacterial overgrowth, your GP and gastro will be clueless on this but common in coeliacs and NHS gastro will refer you for test), and taking a revise on the sneaky gluten possibilities that remain/are getting in to your diet. Also colitis and microscopic colitis, and inflammatory bowel disease - if these have not been tested for/discussed.

I think I noticed somewhere that you had also been 'glutened' recently, so the worst bit of coeliac (whether known/unknown) is the residual damage the glutening incidences cause for us. I'm no where near the ballpark of your level of conditions but get all the pain/inflammation in joints and nerve endings, and GI tract from a lot of foods that are definitely not containing any gluten. I also have joint osteoarthritis. I accidentally discovered taking an antihistamine took the edge off this, which led me to look at histamine intolerance and that led me to stumble on mast cell activation syndrome.

I can't tolerate: 1) any grains, including all the 'gluten free' ones including buckwheat; 2) any nuts; 3) any seeds; 4) any sugar (fruit included). Cutting these out resolves all the pain issues, introducing them kicks it all off again. And I think I've had inadvertant glutening from our so-called gluten free foods. I think diet wise I would suggest taking it back to the basics for a few weeks, and then introducing foods one by one to see where the food culprits might be. I can also recommend the MCAS group on Facebook which has a tonne of gluten-avoiders who also have a wider range of health issues and no answers (Mast Cell Action @mastcellaction), who can advise on how to find relevant consultants who specialise in whacky immune systems - both NHS and private.

I have also read that we can have various pathogens living in our gut that never get picked up or tested for, so e.g. dodgey holiday tummies where the pathogens live on in our gut and our immune systems are constantly reacting to them. There are tests you can buy online that will test for multiple gut pathogens. They are not cheap, but there as option. In terms of private clinics, depending on where you live, functional gut clinics are worth a try. Again, pricey, but there's one in Manchester than does a lot of its tests by post - functionalgutclinic.com

You shouldn't be cast adrift in this way, and totally empathise with the constant pain/inflammation/ill health and the constant negation/no answers anywhere. Nothing ever shows up in my blood tests either, yet something is very wrong somewhere. I think most of the time all roads lead to Rome, and that is the food items that are kicking off the inflammation and the residual damage in our GI tracts that's allowing more and more things to react. If you can get it to a holding ground of settled, even if it means highly restrictive diet, it will then give things time to start to repair.

[MausenMumma in reply to Hidden]

Thanks for your considered response; I will read/digest it tomorrow. Thanks for the 'cast adrift' metaphor - feel it some days. Xx

[Hidden in reply to MausenMumma]

No worries. I dumped a lot of info in there, but these are the things I come across in the past few years. I think the worst place to be is when you have no answers but lots of pain/health impact. You just have to become your own researcher/medic which is not nice.

[CeliacNutritionist in reply to MausenMumma]

Sorry if I missed something. When you said you were tested for Celiac…. What kind of test? Was it a lab test? My daughter and I have never tested positive for Celiac via blood test. We tested positive for Celiac via a biopsy. Unless something has recently changed the lab test is only 70% accurate. I am sure none of us would be happy if the bank said I had a $700. Deposit when it was $1000.

[Westie1974]

Hi sorry to hear what you are going through.I was diagnosed with Celiac disease in October last year.Over the last 6 weeks I've been having real problems.Constant nausea and a burning sensation in my stomach and the pain in my back is getting harder to bear.I've been very strict with my GF diet but it doesn't seem to make any difference.Living like this is so hard when all you want is to feel well.I hope you get some answers and start to feel well soon.

[Hidden in reply to Westie1974]

Are you having a lot of commercial gluten free foods and/or gluten free oats?

[Westie1974 in reply to Hidden]

Hi Mise,yes I do eat a lot of commercial gluten free foods,gf bread,gf fish,etc,do you think this could be the problem.?I was fine until 6/7 weeks ago.I also have a weird sweet taste in my mouth and I can't stand smell of polish,perfume.If I smell it if feels like Ive swallowed it and can taste it all day.Weird.!

[Hidden in reply to Westie1974]

I'm not a doctor so really can't advise you either which way, but you will find a lot of people on this forum can not tolerate the codex allowance of 20ppm in commercial gluten free products. Many (if you still consume oats) can not tolerate gluten free oats either. I think you need a referral back to your gastro and dietician if the problem is not resolving, but it may be worth simply eating basic natural foods for a few weeks (no commercial gluten free or risky processed foods that are not labelled gluten free) as that may be some of the issue. Codex allows 20mgs per 1kg of gluten free food. If you eat a lot of commercial gluten free foods, and each contains a few mgs of gluten, that is adding up over the day, the week and the month. If your tolerance to any gluten is very low (i.e. you need zero gluten) this may be an issue for you.

[Westie1974 in reply to Hidden]

Thank you for the advice.I will try basic natural food for few weeks to see if it helps.

[Penel]

Hello MausenMumma

Just to add another possible diet solution, it’s an elimination diet which might be worth looking at.

thepaleomom.com/start-here/...

Hope you can find some relief soon.