Discovered I'm coeliac as an adult, how to make sure I heal properly!

[Nickname1980]

Hello!

I have obviously had this my whole life but only very recently been diagnosed with coeliac disease. (I'm 36.)

I've always known that I have a problem with gluten, and largely avoided it (which is probably how I've managed to remain undiagnosed until now). But, when I say avoided it, I mean, steered clear-ish of bread and pasta.

Before testing me for coeliac or even considering it, I was just given the diagnosis IBS (IBS which I managed by avoiding gluten - surprise, surprise!).

Anyway, after a few early miscarriages and other health problems like unexplained vitamin deficiencies, I did the gluten-eating and the tests and coeliac disease was confirmed.

While I certainly haven't eaten bucket-loads of gluten in my life, I did eat things like soya sauce, etc, with "hidden" gluten and so on before I was diagnosed.

I now worry about the damage I've done to my body over the years.

Is there anything I can do to repair it?

Anyone else diagnosed as an adult? What did you do to make sure you didn't have any long-term health problems?

Also: any good coeliac forums, etc? I have recently made mistakes like ordering gluten-free pizzas at restaurants and then having a gluten reaction later on (the pizza was obviously dusted with flour or something!).

[Nickname1980]

Anyone?

[CMOTDibbler]

I was diagnosed when I was 26 (43 now). I didn't do anything special to heal, though I was careful about taking multivitamins and vitD supplements.

I've tried a few forums over the years, but found some were hysterically gluten free, and others were a bit sanctimoniously 'make it all from scratch, eat unprocessed foods'.

You kind of have to work out your own tolerances in the places you go to - for instance some Starbucks branches are super careful with the tongs for gf brownies, not putting them on the same plate, others have no idea. Same with buying pizza, though Dominos are very careful

[Nickname1980]

Ooh good tip about Dominoes, CMOTDibbler!

Yes I think you're right about discovering your own tolerances.

I still feel a little shy about stressing the importance of not cross-contaminating in restaurants, like they'll roll their eyes because I'm fussy - even though that's not the case! I probably feel that way because of years apologising for my "trendy intolerance" before I discovered it was actually coeliac disease!

[Schrodingersmum]

If it helps I was diagnosed at 42, severely ill with ME fibro pernicious anaemia and hypovitaminosis

Specialist said I was one of the worst he had seen because I had been missed for so long (faulty immune system)

Nearly 5 years on I am a different person, my Fibro physio who is also a qualified nutritionist helped with my recovery because quite rightly you need to replace what you havent been able to absorb and help your gut heal

I take prescribed B12 and vit D but also high quality multi vits including zinc, magnesium, all b vits, c

Seperately I take cq10, omega oils and a high quality pro biotic which helps heal leaky guts like ours

Sadly I still have absorption problems and need to continue to take vitamins but you may be fine after a good rebuild of a few months

Join coeliac uk they are very informative, go to the allergy shows which are excellent

As someone has already mentioned Domino's are fab, but Bella and pizza express, zizzi all cater for us too

Tesco's onion rings and profiteroles are loved in our house as both my kids are also coeliac too, you can even get donuts from some Tesco's

[Nickname1980]

Thank you LionsLedge! That's a great tip about writing down my symptoms. I'm never sure what to attribute to coeliac (well, before it was diagnosed) apart from the obvious! Brain fog is a mega one.

I have heard about pro-biotics, and just googled VSL #3 after your mention and it sounds like a good, real one! I am going to try it.

I'm ok with dairy, it gives me crappy skin but I think dairy does that with a lot of people!

[Nickname1980]

Gosh it sounds like it's been rough Schrodingersmum - but getting better! What is cq10?

I was also deficient in b12, iron, vitamin d and folates (which is why I eventually got tested). I am now taking sublingual b12 and lots of vits in the rest. I am actually bone tired. I guess from all the deficiencies.

Great tips about GF pizza and profiteroles! I think pizza is the only thing I'll miss - haha! (Gf pasta just tastes exactly like wheat pasta to me!) And I hardly ever ate bread anyway because I sort of knew it had a bad effect on me.

[Schrodingersmum]

Just a quick tip, if you were B12 deficient and folate deficient make sure you are taking lots of folate

The 2 are co-dependent, you cant absorb B12 properly with low folate levels, also consider adding in some copper as this can be involved in neuropathy caused by pernicious anaemia

[Nickname1980]

That's a great tip - my nutritionist didn't mention anything like that to me! Schrodingersmum.