Confused by Doctor

[Ummijan]

So my bloods have come back (quoting my dr) as 'negative for celiac or gluten markers but positive for inflamitory markers, so somewhere in your body you've got inflammation' which wasn't super helpful lol. She said that the nhs won't fund me to have endo cos my CD test was negative and that they can't do any more sensative ones then just the basic test which can be negative and still have CD. I don't care if I have CD or gluten intolerance but the more I know for me the more I know for my children's future health and maybe save them my problems.

I've been told to stay off gluten for 6 weeks then take another test for wheat allergies and to see if the inflamitory markers are still up. Then try eating a little gluten and see what happens and to keep a food diary the whole time. She said that diagonsis doesn't really matter if symptoms improve when off gluten then stay off gluten.

I was told that private clinics can do more sensative blood tests but the stuff online just confuses me. Should I just accept a dianosis of intolerance or fight for clarification? Does anyone know of any cheap and comprihensive private clinics for blood tests?

Also- I thought (from all my research) that CD bloods tests can be negative even if CD is present but dr said that if it's not in bloods then it's not in me so to speak. Basically she doesn't want to do anything more if sympoms go from not eating gluten that's enough for her. I'm not sure I'm happy with this, I'd rather know for sure where possible for my kids sake and future health. Should I push or let things be?

[Penel]

It's a difficult situation to be in, but at least your doctor has given you a plan to follow. You may perhaps have non-Coeliac gluten sensitivity. Inflammatory markers can be caused by several conditions and it is fairly common to just wait and see if anything develops.

coeliac.org.uk/coeliac-dise...

I have no experience of private testing, so cannot help you with that.

[virgolizzy]

It may well be that you do have ncgs hence the negative coeliac test, as I am assuming that you have problems with your stomach & bowels etc. Don't quite get the bit about staying off gluten for 6 weeks & then do a wheat allergy test?? or do you mean repeating the coeliac test ie TTGA, (as a wheat allergy is completely different to Coeliacs & is therefore a different test).You also need to get a print out of your results, so you can see how your inflammatory marker test, (probably a CRP test) changes over time.

THere are two very good websites I use for info & access to private blood tests run by a Micki Rose, called purehealthclinic.co.uk & trulyglutenfree.co.uk. There is lots of onfo on there, in particular about ncgs, some free other bits not. There is a new format on the website so not as easy to navigate as it once was (imo) but stick with it, cos the info & the knowledge that Micki has it huge & if you e mail her with all your info, she can point you in the right direction about which tests to go for, as that in itself is a huge area & can be expensive so you need to be very selective or it is a bottomless pit. For some of the tests you may need to be eating gluten, so handy to look at that before giving gluten up maybe.

There is also a very good book that I found helpful by Sarah Ballyntyne about an anti inflammatory diet called auto immune paleo diet (I think) & she has a website called paleomom.

Getting your inflammation markers down is very important.

I assume apart from your stomach/bowel issues there are no other symptoms, giving your GP any more clues abut what is going on?

Anyhow, the route about giving up gluten to see if your symptoms subside is a very good place to start, along with the food diary & then re test your inflammatory markers etc, if symptoms & markers are going down, then you know gluten is the cause & whether it is coeliacs or ncgs, then the result is the same ie stay off gluten & then concentrate on getting yourself well again, which can still take some time.

If symptoms don't change & your crp markers are still up, then your gp will need to work out what else may be going on.

Good luck.

[Ummijan]

I don't mind what name my health issues have, I just want clear answers to what's caused this so that I can protect my kids more, to know what to watch out for for them.

I've got pains in my pelvis, abdomen and extremely tired, mood changes, behavioural changes, headaches, weight gain dispite very low calorie diet (with photo diary cos no one believed I was eating healthy), blurred vision, ringing in ears, sore joints and back, bloated, etc (the list goes on, I have it written down for Dr and in my symptom diary). My Dr only took an interest cos I'm not menstruating and were trying for another child (my youngest is nearly 2) but nothing happening. They've always written off my other stuff as due to weight and such. Took ages to get someone to listen to me properly.

Now I feel like they don't care what's caused the problems so long as there is a quick fix solution (aka not eating gluten) and they don't want to investigate the cause anymore. I don't care what caused it, I just want to know so I can hopefully prevent my kids facing this when they're older.

The dr told me that she hadn't done a wheat allergy test yet so it gonna do that next time with the inflamitory markers. Tests also show I'm low vitD and foliate (so I'm mildly anemic she told me) and that the inflamitory markers have shown in previous blood tests but we're considered important at the time. They won't do anymore tests for anything else, only for vitD/foliate/inflam markers (to see if it's improving) in the future she said. Unless I have more blood in my vomit in future then she might be able to get them to do a check of my stomach but I rarely have blood in vomit, normally just from being sick so often.

Like I said, I don't care what name is given to my dramas or what condition or not that I have. I care about getting answers so I can watch out for my kids even more. If I know what's wrong with me I might be able to help them more if they fave similar issues as me. That's my main concern.

Thanks for the websites and advises everyone I appreciate it.

[Lisahelen]

You mentioned anemea, has your dr tested for b12 deficiency with you? Similar symptoms present for many with b12d.

[Ummijan in reply to Lisahelen]

I'm not sure. I think so. Most of my family have b1w deffiencieies so it should have been tested for. I'll check next time I see her

[Jacks]

I apologise for saying this a lot but it is so easy to get hooked on a diagnosis of coeliac disease that you miss the bigger picture. Surely you need to get diagnosed with what IS wrong? Have you asked whether the inflammatory markers were actually bowel/small intestine?

I'm not saying this is you but I was sitting in clinic last time next to someone who said they thought they were coeliac but it was their uterus!

Ringing ears can be consistent with inflammation and anaemias.

Have you been tested for Rheumatoid Arthritis? Lots of your symptoms are similar to RA and less like coeliac disease.

Are you presenting with classic coeliac symptoms - I was very thin at diagnosis, because of years of malabsorbtion.

In my experience there is no "quick cure". Even a GF diet, though it has helped me regain weight.

[Ummijan in reply to Jacks]

Thanks. I have no idea what's caused this. I just want proper testing to find out. Maybe it is something other then celiac and the gluten diet helping is coinsidental, I don't know. But my Dr won't do more tests on anything cos the gluten free diet seems to be working. I just want proper answers, to know what is going on with my body so that I can prevent my family going through this.

Thanks for your reply