Complications: I was diagnosed with... - Gluten Free Guerr...

Gluten Free Guerrillas

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Complications

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I was diagnosed with Coeliac Disease when I was very young through blood tests alone and always struggled to maintain a strict diet. Being 17 now, I do still have symptoms of bloating and fatigue etc, however I was wondering if there are any serious complications of eating gluten?

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16 Replies
Activity2004 profile image
Activity2004

Do you get cramps when you eat wheat? If you do, then you have to stay away from gluten. Ask your doctor about the issue. Feel better.

in reply to Activity2004

I do yeah, but I always find it hard to cut out gluten completely. Thank you!

Lisahelen profile image
Lisahelen

Have you had any further tests more recently? You might have a b12 issue which could be causing the tiredness, especially as it seems you are having problems keeping to the restriction of a gf diet. It might pay you to go back to your dr and ask for a full blood review. Also ask that now you are an adult can you have an appointment with a dietician who can explain and help you to try and stay on the straight and narrow.

The villi in your stomach become flattened when you have gluten(over time) and this stops nutrients from your food being absorbed which in turn can cause deficiencies, along with tummy problems etc.

in reply to Lisahelen

Hi Lisahelen, not recently I haven't. I'd say it's been 3 years since I've last been checked. I spoke to a dietitian however she simply told me to look at different websites. I will visit the doctors as soon as possible and ask for some more tests. Thanks for your help!

Regalbirdy profile image
Regalbirdy

Hi nessa12,

I can't imagine what it's been like for you having to grow up with coeliac disease and wanting to be like your friends.

Being different can be difficult and/or embarrassing at times. As Coeliacs, many of us have tales to tell about that. For instance, I had to take food in my handbag to a friends wedding because I couldn't eat at the buffet - and then endure all the questions as to why I needed to do this...

However I digress; the fact that you're now interested about the consequences on your health of not being GF is great - good on you for posting the question.

Here's just a few things that I know about:

As the others have said, you are at much higher risk of [multiple] vitamin deficiencies and anaemia. For instance, a lack off vitamin D and calcium means that over time you are much more likely to develop osteopenia and then if left untreated, osteoporosis. Do you really want crumbling bones? I can promise you from first hand experience, that it's a scary prospect (my Coeliac Disease was left undiagnosed for many years...).

Also, according to Coeliac UK, any Coeliac not following a strict gluten-free diet is at a higher risk of developing another autoimmune condition (think Type 1 diabetes, Pernicious anaemia etc). In my opinion, it's bad enough just having Coeliac Disease!

You may already have a lactose intolerance and/or other food intolerances? A lactose intolerance will often clear up once on a strict gluten-free diet; because the villi in the gut have a chance to heal if the gluten antibodies have no need to attack them.

Untreated Coeliac Disease is known to be a cause of miscarriage in pregnancy.

Not controlling your diet means that you will probably have a higher long term risk of liver abnormalities.

The one risk that everyone knows about – is the higher risk of bowel cancer.

And there are likely to be many other things as well. Coeliac UK probably know more about them than I do - have you looked at their website lately? They're also easy to talk to on the phone.

Hope this helps.

R.B xx

in reply to Regalbirdy

Hi Regalbirdy, thanks for responding! It was always a nuisance as I enjoyed going to fast food restaurants, although with how unhealthy some are it could be doing me a favor. I'm sorry to hear about how yours was undiagnosed for so long, it must've been a nightmare, especially with the consequences. I don't think I have lactose intolerance or any other food intolerance's luckily! Though I sympathize greatly for those who do. I hope you are doing well now in terms of your Coeliac Disease and the other issues alongside. Thank you so much for going through it with me! I will check out the website too. xx

Regalbirdy profile image
Regalbirdy in reply to

Going strictly gluten free has definitely been a good decision ;-) (I can thoroughly recommend it!...).

For one thing the reduction in gut issues has been such a relief – in more ways than one!

It can also be a way of seeing who your real friends are - the good friends are the ones who care enough to support you physically and emotionally. I've got this and I really hope you do too. xx

in reply to Regalbirdy

Thank you once again!!! xx

Venetia profile image
Venetia

Health wise it is the right thing to really stick to a gluten free diet, the long term consequences spelt out by Regal birds are real, though research is continuing to improve the need for gluten free diets. Lately I found myself (diagnosed 58, now 73) FED UP with the social implications, particularly the constant explaining to people why I can't eat gluten.I would go to social occasions and either... take my own, messy,.... or ask if any gluten free stuff available, and have to wait till possibly everyone else had finished eating, no fun of sharing,.... or stuff myself before going out ,and just not eating.

then also coping with the comments" oh a little can't hurt you"... oh yes it can as well as cut out 4 days of my life through feeling ill.

I find the difficulties worse with friends, going to a certified gluten free restaurant is much more fun and easier and there are more of these, more expensive though ! and some pizza places deliver gluten free pizza so one doesn't feel so isolated from others.

Do check out if your diagnosis is correct if its not you may be free of food restrictions,.... if it is I can only say stick to the diet it works best if all gluten cut out for immediate good health and feeling well and having energy NOW and the long term, and keep your eye on advances in research.

in reply to Venetia

Hi Venetia, I completely understand! It's tiring having to constantly repeat over and over how you're unable to eat gluten, on top of people always asking what you can and can't eat. I have heard so many people say that "a little won't hurt" when they don't even have any knowledge of the disease! It's a real nuisance. I haven't seen any certified gluten free restaurants but I sure will be on the lookout for one. Will definitely start ordering gluten free pizzas too.

I have been checked twice unfortunately. A few years ago I wanted to be 100% sure that I am a Coeliac, however I've never had a biopsy as they said it wasn't needed. I will definitely work on correcting my diet, will also keep an eye out on research. Thanks for your help!! :)

Penel profile image
Penel in reply to

If you are in the UK, this map should help find places to eat.

coeliacmap.com

in reply to Penel

Thank you so much!

liver-bird profile image
liver-bird

Yes Nessa, unfortunately there are serious complications that can arise if someone with coeliac disease eats gluten and I see that Regalbirdy has done a good job outlining some of these.

It must be so hard for you not to eat the same fast food as your friends but for the sake of your long term health, you must resist. Also, as you recognise yourself, these fast foods are not much good to anyone really.

You are clearly taking responsibility for your own health (as we all must) or you would not be here asking these questions. Well done for that - it shows that you are sensible and clever.

All people with coeliac disease should be monitored by a doctor regularly so go and see your doctor and get some support. Also you should look at the Coeliac Org website as there is lots of useful information there for you.

Good luck and let us know how you get on. We really are interested. Big hugs. Diane

in reply to liver-bird

Hi Diane, it's a real shame that by just eating something gluten that you enjoy there are consequences. :( Even if its just something as silly as a kinder bueno (my favourite chocolate bar). I will certainly start resisting, it does more harm than good anyway. Thank you very much, I really appreciate these responses!

On the other hand, I had no idea you are supposed to be monitored! My doctor never told me anything about that. I will definitely book an appointment as soon as possible for more info on that. I will keep updating :) Thank you so much for your help!! I am grateful for your response! x

Just a quick one to say I really feel for you Nessa - i can only imagine how hard it would be to be in your teens dealing with this (it's hard enough at 53!). Just sending you a hug, and saying you should be proud of what you've managed so far, and I am completely sure with the help and support you can find here, that you will get yourself properly well. Tillyxx

in reply to

TIlly, thank you so much for this!! Thank you for understanding! I sympathise for all people with this bothersome disease. But yes I will hopefully adjust! I am honestly really thankful for your message, it makes me feel so much more motivated. I hope things are okay for you too xxx

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