Bad Time At The Gastroenterologist's - To Biopsy Or Not To Biopsy?

[KCG91]

I had a positive blood test (ttg IgA 128u/ml) in August in England - and then again in October when I moved back up to Scotland from England for uni (same result). I began a gluten-free diet after this because I knew it would take months to be seen and I just didn't want to force myself to eat it.

This afternoon I finally saw a gastroenterologist, three months after first getting the news that I had a positive blood test for Coeliac. In the doctor's own words, he said that if he was a betting man he'd put money on my having Coeliac, but he wanted to test to be sure the high ttg IgA wasn't caused by something else, and I didn't really feel able to discuss any other options with him for fear of looking like a know-it-all...so I sat there wanting to blub for the rest of the consultation. 

 

As some of you may be aware from previous posts I had really set my mind against having a biopsy for a few reasons. Firstly,tests that are done in Scotland aren't always accepted in England (and vice versa) so if I had one here then moved home after graduating next year I might have to go through it (and the gluten challenge) again.

I'm also pretty clear in my mind that this is Coeliac - I don't have major symptoms (mild constipation, gas and bloating as well as some anxiety, fatigue and diminishing athletic performance) but I do/did have severe anaemia (that I didn't have prior to these symptoms starting), those weird, fluffy looking stools and sensitive teeth, which I take to be symptoms of malabsorption. What I definitely don't have is thyroid issues or bloody D (which I understand is a symptom of Crohn's and/or colitis), all of which might cause ttg IgA to be raised. 

So I guess my question is - what do you guys think about doing the challenge and having the biopsy? Which, given the above, I certainly wouldn't be having until I moved home to England next summer anyway. 
 

What are people's knowledge/experience of false positive ttg IgA results? Does it sound like an issue for me?

And lastly...why aren't all doctors as nice as my GP?! I'd waited three months, with so many questions, to speak to a specialist about Coeliac only to feel as though I'm not allowed to ask them because he doesn't consider me to be definitely Coeliac (but he'd put money on it...grrr). Just a bit sad and confused about it all really, because I was getting my head around the practical and emotional issues to do with diagnosis only for this to be chucked in the mix. I also kind of feel that he's pushing for a biopsy to tick his own boxes, y'know? 

Also if there's anyone in England with anything to add about the pros/cons to having or not having a biopsy I'd be really grateful to hear them (My GP has already put me on iron supplements and sorted out a food prescription for me). 

Thanks for listening to my ramblings! Means a lot to come out of an appt feeling rubbish but to know I can come on here and talk it over.

 

*Edited* PS - If my ttg IgA has decreased at my 3 month blood test in January, does add to the case for my being Coeliac? 

[sweetsailing]

I struggled with whether or not to have a biopsy as well.  Sounds like I had more severe symptoms than you.  I ultimately decided it wasn't worth it for me.  Reasons:  1)  Doing the gluten challenge would about kill me  2) I had already made the decision to live gluten free and the results of the biospy would not change that decision.

 

What might be helpful to you (and it was for me) is to get the genetic testing if you haven't already.  If you don't have the genes, then you can be fairly certain that it's not celiac, however if you do have the genes to support celiac, it would be one more piece of information that leans you in that direction.

[KCG91]

Yes, I really don't want to do a challenge! It's almost the unpredictability of the illness that follows it as knowing I'd be ill if that made sense... 
Thank you very much for the suggestion of genetic testing - I will get that done next month along with my three month check up. 

If my ttg IgA levels have reduced on a gluten free diet is that another indicator that Coeliac is the problem, not something else? 

[Gemini]

If your tTg IgA levels go down on the gluten-free diet, then you can pretty much assume that Celiac is the root cause.  It can take awhile for antibodies to go down, so be patient. tTg can be elevated with other autoimmune issues also but I would imagine you would have other symptoms of these. It is more probable 

that you would have false negative, as opposed to a false positive.  You also have anemia....which is pretty much guaranteed with Celiac Disease.

 

I wouldn't do a challenge either. Doctors are dopes to ask for that. Do the gene testing also and see what that shows.

[MGR]

Hi there, I also live in Scotland and I am currently going through the process of being diagnosed. When being tested here I have heard that there is a great difference in successful diagnosis depending on where you are. Although there have been recent studies revealing that there is an increase of children being diagnosed in Scotland, there are also studies suggesting that if you live in the East coast you are more likely to be diagnosed than if you lived in the west coast... Also because of how the system works here, the GP is the guardian of the funds available in your surgery and they decide whether you can talk to a specialist. But even when you go to the specialist you always talk to a different person - in sum, you are lucky if you get someone who knows what they are talking about- compounding with the fact that their main aim is to save money and if you don't tick the box that's you.

This has been my experience.. Edinburgh: I also have ulcerative colitis and I know the symptoms are very similar to coeliac but I can feel a difference and being gluten free actually helps me with e latter. I was extremely ill this Summer in Spain with my colitis and thought I had to go to hospital- I went to the doctor and as he was studying my case he was also asking me about what I was eating.. I told him D seems to get better if I eat rice but gets worse if I eat bread- he suggested I do a gluten elimination trial- I did this and D stopped within 3 days- and realised I had not had round poo for years!! It was then suggested to me to be tested for celiac. This is what I did as soon as I got back to Scotland I started the process- My first GP I saw even had to google celiac to find out what I was talking about! Forced my way to see my specialist in GI department and she thought it sounded like celiac- I had been gluten free for two months by then because as soon as I ingest gluten I get horrendous tummy ache, D, nausea, etc ( not colitis symptoms at all) so my blood test was negative- the next time I see a specialist it is someone else - yes, yes, it sounds like celiac - you need to go on a gluten challenge- one specialist says 3 to 4 weeks another one 8 weeks- I do this and have the most horrendous reaction before doing my endoscopy- I was so ill at the end of this challenge I could barely stand up- And the surgeon performing the endoscopy did see some mild scalloping in the lining of he intestine which suggested celiac to him together with my symptoms, he was very alarmed- but my biopsy was negative and the blood tests were negative again. I had to get the results from my GP who was yet another person and said- blood negative, biopsy negative- no celiac! Wh do I believe? My appointment with my specialist is in April who will be someone else again I presume... I am at the mercy of these people..

It is clear there is something going on with gluten- every time I ingest some I break into herpes, nausea, tummy ache, etc, etc... But my advice to you living inScotland is although the tests might differ between England and Scotland and you are already getting your gluten free food from the NHS and unless you really want a golden diagnosis keep it to where you normally and keep it consistent- if you are diagnosed in England, it will also count in Scotland .. And don't go through the nightmare I am going through!!

Good luck my dear!!

PS. I was also told there is no gene testing in Scotland either... I am sure you will be seeing the same people if you are in Edinburgh...

[KCG91]

Wow MGR what a nightmare!! I am not so surprised now that I was turned away from my uni's GP twice with cramps and bloating - 'Come back if you diarrhea blood' she said!! I ignored my non-bloody GI symptoms this summer until I mentioned them to a young, locum doctor down in England who ran the Coeliac test almost as standard. 

 

The consultant I saw (I googled him) does seem fairly high up or whatever but as you say, only interested in ticking boxes. And he said I only needed to eat gluten for two weeks prior to a biopsy, which set alarm bells ringing as that's much less than I've heard elsewhere. On the up side, I'm in Glasgow and a lot of my friends are medical students who knew exactly what I was talking about as soon as I told them. So maybe there's hope! (They are chuffed, a real live case study landed right in their lap)

I will let you know what they say about the gene testing. Postcode lotteries make me so mad, and WHY medical records can't be shared across the border I don't know. Two years ago I dealt with a UTI for 9 months because my Scottish GP didn't refer me to the consultant until the end of term, and I had to start the whole process over in England.  

 

I hope you get some answers soon - although April isn't exactly soon! 

[MGR]

Oh, I didn't realise medical records are not shared between S and E, I thought this had all changed! But with regards to the challenge, two weeks I think is not enough, from my experience. I did a nine week one- although I was quite ill from the beginning, the symptoms changed over the weeks and became more persistent and around 5 weeks I felt different, I could really feel I was damaging my gut! I can't explain it very well... And the blood test was negative... I put this down to the fact that I naturally don't eat bread and pasta anyway and we nearly always make food from scratch. Also, I tend to have the skin thing- every now and so often I get a rash that looks like chicken pocks, now I know it is DH- I am not sure whether in people with DH the antibodies occur in the skin rather than the blood- no doctor ever asks me anything...

Also as I have read somewhere here on this forum, that if after a challenge the blood test is still negative and here is still suspicion one should continue eating gluten for some weeks more as the antibodies take longer to appear than the damage in the gut.. The surgeon was so alarmed at the state I was in that he told me to go gluten free as soon as possible- also in every informational web on celiac you read, one thing that is always mentioned, is that one should never start a gluten challenge without being monitored! Here nobody checked up on me....

Your friends sound fun, it is good to be able to have a laugh in this surreal situation we find ourselves! Please let me know how you are doing...

Cheers and good luck!