Gastroenterology appointment tomorow, blood test negative, how can I convience them to do a biopsy anyway?

[Ocean2]

I have a Gastroenterology appointment tomorow. My coeliac blood screening was negative, how can I convience them to do a biopsy anyway?

Also, GP tested for Tissue Transglutaminase only. How about Endomysial antibody? Should that have also been tested?

Any tips on how to convience them to do the biopsy anyway??

thanks

[lizallan]

My blood tests for Coeliac have always been negative but I have just recently paid for a private blood test which checks to see if you have the gene for Coeliac disease. I came back positive for the gene and although it doesn't categorically state that you have Coeliac disease, it does mean that you can show you have an increased risk. Plus, if you are having symptoms as I was it gives you something to go back to the Consultants/GP with.

I haven't been eating wheat for 12 years and gluten for 2 years. It seemed that when I was told 12 years ago that I should avoid wheat that according to my own GP, this meant nothing!

I've struggled since then to get some form of diagnosis - the thing is that I myself know that wheat and gluten make me ILL so I avoid it.

I'm not looking to have a proper diagnosis for any reason other than because my 7-year old son is now presenting exactly the same symptoms as me and has also come up negative on the antibody test! If I didn't get some form of answer then my GP was just saying he had a lazy bowel and that I should just shove a load of lactulose down him for weeks at a time - not helpful!

My diagnosis means that we can at least get him tested for the gene and if he comes up positive then we have to make the serious decision as to his future food choices!

My point here is that even if you come up negative on the antibody/screening test, it doesn't mean that you're not Coeliac or could be in future. At least the gene test can give you some indication of the possibilities!

I feel that the testing parameters for Coeliac Disease should be much wider as they don't take into account all the people outside the consultants specific bands of symptoms. Not everyone gets diarrhoea and loses weight, some get constipation and put weight on etc etc!

If your gene test also comes up negative by the way, I understand that there are other tests for "gluten intolerance" which are due to come over from the States in the next few months. This would have been my next port of call as I was convinced that I was "intolerant" to gluten rather than having the coeliac gene!

My suggestion is go forward and push them to give you a biopsy is that's what you really want.

Are you eating gluten now or have you been gluten free for a while?

I couldn't bear to eat gluten for 6-weeks as I know how ill it would make me, that's why I cancelled the endoscopy once I got the gene test result - the consultant told me that if I came back with a negative result, they would only class me as having "IBS" which is such a wide diagnosis and so not helpful!

I'm not sure if this helps you but hopefully it will give you some ammunition when you go tomorrow - good luck!

[poing in reply to lizallan]

I believe there is a different coeliac testing regime for children now, where they do all the related blood tests: TTG, EMA and AGA. It usually takes at least several years for coealic disease to develop...AGA goes postive first, followed by EMA and only TTG in the final stages, when actual serious damage is being done... so if any of those are positive, I would say eliminate gluten now. Why wait until he is really ill?

[lizallan in reply to poing]

I agree - we eat a gluten free diet at home anyway to avoid cross contamination for me. I'd need to look at school dinners etc - the company supplying school dinners though have already said that they would need a doctors note saying that our son needs a gluten free diet in order to supply lunches gluten free for him!

We're going to get him tested very soon and if the gene test comes up positive we will definitely have to take gluten out of his diet permanently!

Thanks for your response!

[Ocean2]

lizallan,

thank you so mucy for your detailed reply! much appreciated.

I am eating gluten for months now though I must admit I probably miss the recommended daily intake at times.... I will push for it and see what happens.

Can I ask where you did the gene test?

Interesting about the 'gluten intolerance' test from States! where would one find that out?

Also is there a list of symptoms page on this site that I can check so I can cross reference with my symptoms?

thanks a lot!

xx

[lizallan in reply to Ocean2]

I had to be referred to a lab in London by the nutritionist I've been going to see. She's called Christine Bailey and is based in Reading. Let me know if you would like her details but you can probably find her on the internet (not sure about the rules for giving out info like that on here?). She also knows about the gluten intolerance test plus there are articles on the Foods Matter website about it.

[NorthLeedsJohnny]

I was initially tested as many of my symptoms were similar to those of my dad, who was being treated for bowel cancer. My blood tests were negative for CD but when my consultant did an endoscopy, he found I had CD at stage 4. Bloods are never completely reliable.

[mitchellbarbara]

I had 2 neg blood tests, but I not only asked for it, but had to demand it...I just said, I have good insurance...do it....but in the end, all was negative...eventually figured out it was a bacterial infection all along, causing symptoms similar to celiac...so have them check for bacterial infection first.....may not need to go all the way with the rest of the tests...this should actually be the first test everyone should have.... but they don't think of it...

[katethebake]

You may simply be IgA deficient, meaning you either don't have, or don't produce enough antibodies to show a reaction on a blood test.

If you are IgA deficient, you are probably prone to lots of low grade infections that make you feel a bit under the weather a lot of the time. Even if you don't feel this is applicable to you, you could perhaps suggest it to your specialist. They have to acknowledge that it is a possible cause of not having raised anti-body levels whilst consuming gluten and so should pursue a diagnosis if you are presenting other cd symptoms. Also, do mention that your son has similar symptoms, along with any other family members, they are relevant to your case.

Good luck.

[Ocean2]

Thank you all for your replies! I have now seen the gastro and he was wonderful!

I am having my endoscopy next week!! (I had to push to get an earlier appointment). Without the information people have given me here I would not have gone this far!

He is also at the same time performing sigmoidoscopy (to examine the lower part of the colon). He was brilliant, he referred to that research article, the one that recognises gluten intolerance and said it should now be widely recognised even though many doctors don't...

I am a happy bunny now!!

Is biopsy fool proof? if it comes back negative can I be sure that I don't have CD?

[Regalbirdy]

Make sure they take plenty of biopsies during the endoscopy. I understand that only taking one or two is not enough. I believe that six is more appropriate as they sample more areas of the gut way, thereby increasing the chance of finding any abnormalities.

[Ocean2 in reply to Regalbirdy]

Thanks Regalbirdy, the prof said they usually take 4 samples.

[haydn74]

When I had my endoscopy in December they took four samples to test, and that was then apositive result. I now follow a strict gluten free diet, hard though it is sometimes, but you soon get used to it. I always take biscuits or cake out with me, then I have it with a coffee. People don;t usuallymind if they don;t sell gluten free products..If positive sign up go Juvela and Glutafin, who will send sample hampers for you to try. I have amixture of both.