I have had 2 positives and 1 neg in m... - Gluten Free Guerr...
I have had 2 positives and 1 neg in my diagnosis. So have been gf for 8 months. Back on gluten and been quite ill worse than before .Help
Hi 57Turts57
It sounds like you have been having a tough time over the last few months. Poor you - it's really horrible being ill.
It's also something most people here will be able to understand, so how can we help you - what are you looking to know?
You mention that you have had been diagnosed several times, do you mind if I ask for what? Coeliac Disease, Non Coeliac Gluten Sensitivity or DH? (or something else?).
Were they blood tests? Have you had an endoscopy? Was the last test done when you were already eating a gluten free diet? (this would affect the results).
Many people here will willingly give you advice and help; however some extra information from you would allow us to do that more easily.
I hope we hear again from you soon. I will help if I can.
Regalbirdy.
Hi yes I have had both blood test and endoscopy. Endoscopy came back pos and 1 blood test the second best was neg. I have been on a gf diet for 8 months. Went back to see consultant after a second lot of test and they came back the same. He told me to go back on gluten for 6 weeks and then have the camera again. Started back on gluten 11 days ago and soon started to feel quite unwell with the usual diarriae, stomach pains etc . feel terrible all the time. It is coeliac that I have been told I have. But I wasn't as bad as this before I started with the problems last year . I would be grateful for any advise.
Thank you.
Not sure why the consultant wanted you back on gluten if the endoscopy was positive for coeliac. It sounds as though he wasn't convinced by it, perhaps because you hadn't been eating gluten. Can you talk to your GP about this?
Unfortunately it seems very common to have a increasingly bad response to gluten once you have given it up. I drink a lot of water, and peppermint tea if I accidentally eat gluten.
Hi thank you for your advise will try the peppermint tea. Keep wondering if it is the gluten or a bug I have caught. If it is a bug it is going on along time.
Have not eaten gluten for a few days now. Just have to wait and see how I go on when I try to eat gluten again. Have to eat gluten for 6 weeks so that I can have the tests again and hopefully to confirm the diagnosis.
Hi 57Turts57
Thank you for the extra information.
Have I got this right - they told you you were a coeliac diagnosed via blood test and endoscopy?
If that is correct then the only treatment is a gluten-free diet, which you correctly decided to do.
Sorry but I am also still a little confused. Why did you have the second lot of blood tests? What happened to make them doubt the original diagnosis? Or were they part of a routine follow-up?
Follow up blood tests (if it was a tTG test) would naturally show a decrease in the antibodies to gluten - because you weren't eating it! That's not the same as not being a Coeliac.
I am a Coeliac. When I had my last follow up blood test it showed my tTG levels were one eighth of my original pre-diagnosis levels of 11 months before. They were still higher than the recognised normal level but my consultant was pleased because it proved I was keeping to a GF diet.
If your blood test was a tTG and your starting tTG level was lower than mine (which was astronomically high), I think it is conceivable that after eight months of being GF it could show you as being back into the 'normal' range and possibly making it look like you were negative for Coeliac Disease - when in fact you may have been very good at keeping to the diet instead.
However I am not a doctor - so please bear in mind I could be wrong!
If you are a coeliac, you would be likely to react more strongly to the reintroduction of gluten in your diet because after being GF, you wouldn't have the same level of antibodies present in your system. Antibodies are a Coeliac's immune system's way of tolerating the presence of gluten and could be why you are suffering much more this time around.
APsNotFab gives good advice, which is not to suffer in silence. You are clearly suffering seriously from the re-introduction of gluten in your diet, so don't be afraid to make a pest of yourself (nicely tho!) with the medical profession if necessary. I have learnt the hard way it is a good idea to get the detailed facts and figures of test results from them.
For example, can you go back and find out the exact wording of the original endoscopy/biopsy report? If it mentions total villious atrophy then that would be a very strong indication that you are a Coeliac. That would also then mean you wouldn't need to put yourself through the six weeks of gluten illness.
sorry to jump in but what are the normal tg in blood without coeliac please
Some of these posts really worry me. Why test for cleliac disease when coeliac disease has been confirmed. Unless the system in the UK is different I cannot follow what is happening. Anybody can help?
Hi, I have just done the 'Gluten Challenge' for four weeks before my endoscopy as I was GF previously. I was very ill with all the symptoms you mention. When I was admitted for the endoscopy I was informed that I was undernourished as the nutrients hadn't got into my system due to gluten intake and my kidneys were not functioning properly. However, within days of GF I started to feel better again but it's a miserable, painful time to go through just so the medicos can inform you of what you already know.
Unfortunately I think that the "gluten challenge" in a new hoop that we have to jump through to get a formal diagnosis. I too have had a negative antibody blood test, positive HLA and positive endoscopy. But I also have been told that I have to endure "the challenge" I have declined as I have 2 small children and cannot go back to feeling that way... So sorry to hear that you are feeling so unwell. As others have recommended before diagnosis I used to take daily probiotic supplements, buscopan to help with stomach cramps, antacids for the reflux & peppermint tea. Keep with going, it won't be long and you can have that formal diagnosis and it will all be worth it! I am going to be in the same position next year as I will be doing it once both children are at school next September. X x
Thank you everybody for kind advise. I am feeling so bad I have got back in touch with the hospital this morning. I am waiting for them to get back to me. The reason why I was told to eat a gluten diet again was because the biopsy test came back positive but only 1 of the blood tests came back positive 1 was still neg and he didn't want to say that it was Coeliac until he was sure. After all this I am sure that if not coeliac i am intolerant to wheat .
Hi, I know this is going to sound a bit off toward your doctor. But if he's asked you to go back to eating gluten for six weeks and the endoscopy has come back positive IGNORE HIM! If they would've told me this when i first got diagnosed i would have walked out of the practice and asked to see a specialist. If you have having obvious symptoms from gluten, your endoscopy has come back positive then you are probably a coeliac. The question is, do you need to be formally diagnosed? Ive found the only reason for this would be, in the Uk, to be able to get free prescriptions, if you happen to be a student or on welfare. So I'm not sure exactly why you would want to go through all that pain.
I am sorry your consultant feels unsure about your diagnosis. I agree with Regalbirdy about asking for the endoscopy results. My consultant said my endoscopy showed a clear case of coeliac disease but he couldn't understand why my blood test were negative, he asked me about this and we decided that, although I had been back on gluten for four weeks before the endoscopy, my withdrawal from gluten previous to this had swayed the blood test results. My consultant was confident enough with his diagnosis to still then pass me back to my GP and dietician. My advice to you if the hospital gets back and still wants you to carry on with the challenge is to go back to your GP and explain what has happened. I am fortunate to have a GP who really understands coeliac, sometimes you feel as though you know more about your CD than some of the medical profession though!
Do you see a coeliac specialist? It sounds as though you don't. Seriously.
If you have a positive endoscopy, do you know the result? It will tell you the degree of damage on the Marsh scale (eg Marsh 3b). Find your result letter and look. If it isn't then phone or email and ask what your (MARSH) result was.
For information this is how it works - it seems your 'specialist' doesn't understand!
1 - Your initial blood test would show positive antibodies etc.
2 - You have an endoscopy which reveals the damage and confirms the diagnosis of CD or not.
3 - You begin a gluten free life.
4 - After a few months, you return to the hospital and have repeat bloods. Good news! Your bloods are negative.
5 - The good news is that the diet is working and confirms that you were reacting to the gluten in ordinary foods. Your GF diet means you no longer produce antibodies.
