Blood test revealed "above normal" IgA levels. Have I got CD?

[Bluenosegill]

Been feeling dreadful with constant episodes of needing the loo urgently after eating. Totally exhausted all the time and have a toddler to care for. Now waiting for hospital appointment (3 weeks) but wonder what should I expect next. Anyone help shed some light (hope) on this? Many thanks.

[Mazz]

Hello Bluenosegill, I have been a Coeliac for only 2yrs. I do hope you feel better soon, I feel for you, as this is how I was feeling & more importantly needing the loo all the time, & embarassingly sometimes didnt make it.

My GP did blood tests, then reffered me to the hospital, the consultant suggested a Endoscopy, also a Colonoscopy, as they need to see what the villie look like in your tummy, for me each procedure took about 30mins, hopefully they will get you sorted out.

[Bluenosegill]

Thanks. Just a bit of a shock but cannot cope feeling like this. Terrified to eat outside my home and having to go to work is a killer! Since reducing the amount of gluten I eat the symptoms have eased (cramps not as strong and the urgency not as severe) so I think I must have it. Hopefully will only need an Endoscopy as the Colonoscopy would be a nightmare for me and I would need someone to look after me and my daughter (partner works away a lot). Just feel so low and really could do without all this added stress!

[pretender]

I have been a coeliac twice and my last diagnosis was because bloods were IgA positive maybe its down to the GP's interpretation.

[ValW in reply to pretender]

I'm intrigued to know how you've been a coeliac twice?! If you were diagnosed once, you should surely be one for life.

[pretender in reply to ValW]

First diagnosed in 1955 while in Hong Kong aged 6. Capsule biopsy in 1962 indicated a healed gut so weaned onto normal foods. Following chemical poisoning in 2006 I was re diagnosed in 2007 after an IgA positive. This was confirmed in 2011 by endoscopy, Marsh 0, AGA=42. It is known that some coeliacs can go into remission but it returns for unknown reasons later in life.

[ValW in reply to pretender]

That's interesting to read, thank you for telling me about it

[ianwoowoo]

Hi, sorry to hear your suffering so much. One thing to remember is that you must keep eating normal Gluten filled diet until after your Endoscopy otherwise the results might not be clear. Your gut will start healing as soon as you go GFree. not good news I know but will make for a more accurate diagnosis. Good luck.

[lizzycoop]

Hi, firstly keep eating gluten until you've been scoped or it will be inaccurate. just 2 slices of bread each day if you haven't been gluten free. Secondly the scope you need for diagnosis is the bottom end, the top end is a back up for complications. Most modern hospitals will put you to sleep and you can't feel anything then or after. It is better to know if you're coeliac or intolerant because the complications of the disease need monitoring.I wish you courage and patience.

[SpinningCat in reply to lizzycoop]

My diagnosis was via a scope through the mouth - I have seen many discussions about throat sprays v sedation so think this route is normally used to collect samples for coeliac diagnosis?

[Bluenosegill]

Thanks for the responses. Really struggling but will do my best to persevere. Guess I should resign myself to a positive diagnosis but the thought of tests is stressing me now. Just don't have the energy at the minute to deal with this (find tests really stressful) but will try to be patient. Just wondered if the blood test is positive then it's very likely I've got it, right?

[lizzycoop]

mine was >100 and >300 (unmeasureable) and my gastro had no doubt but still did a scope so I could be officially diagnosed. I slept through the scope (aust) and have no memory of anything they did.

[Regalbirdy]

Hi Bluenosegill,

I had the Ttg blood test rather than type of test you have had. I think the Ttg test is used because it is slightly more accurate for most people. However even with the test you had, it does seem that as you have received a positive blood test you are likely to have a sensitivity to gluten. I am not sure if this will turn out to be coeliac disease, as there is also such a thing as non-coeliac gluten sensitivity. Both are controlled by diet.

You will need to have a diagnosis confirmed via hospital tests, so as the others have said keep eating gluten until this is done. Use the opportunity to eat foods now that you may not be able to have in the future. For example, gluten-free crumpets just don't taste the same! (a lot of the other stuff is pretty good though).

Everyone here understands how horrible you are probably feeling right now - we've been there! Mentally (and physically) it can get tough to keep eating something you know is probably making you ill.

Once the tests are done however, the choice will be yours what you eat. I did not wait for my endoscopy results to go gluten-free. I had my endoscopy and stopped eating gluten the day after. That way it became my choice to give up gluten rather than having the diet imposed on me by the hospital. Because of the positive blood test, I had nothing to lose by doing this - if the results had have come back negative I would have just gone back to eating normal gluten products again.

Hang in there - there is light at the end of the tunnel!

[Bluenosegill in reply to Regalbirdy]

Thanks for the positive response. Just exhausted, stressed and utterly fed up of this. But you are right and the best way to feel better is to take control of the situation. It's just the waiting I need to get through now. Many thanks.

[m0ezp]

This might be irrelevant for you but maybe...

One of my pet hates is that most gluten free bread has massive amounts of insoluble fibre in it now (up to 11% of your loaf isn't food!). Insoluble fibre can keep you pinned down in the small room! I was mistaking too much insoluble fibre for being glutened and it was only when I changed to bread with mostly SOLUBLE fibre that my conditions eased enormously. M&S bread and Schar's aka Glutafin bread are good.

Good luck!