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Gluten Free Guerrillas
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Upset about my coeliac blood test

Hi everyone,

I'm feeling extremely upset at the moment and I guess just need somewhere to vent with people who have gone through a similar situation.

For a few months now I've not been able to eat much each day, lost a lot of weight, constantly nauseous, constant diarrea, fatigue etc.

After constant complaining to my bf that I feel like im "slowly dying", I decided to stop moaning and go see my doctor about it. I suffer from depression and anxiety so have had multiple visits to the doctor regarding this. I know it sounds silly but because I go to the doctor every couple of months, I don't like the idea of "bothering" my doctor with any more issues that I have. Anyway, I finally did it and he thought that it was stress induced IBS but ordered me to have some blood tests to rule out Coeliac.

Fast forward to last night and my doctor rung saying I tested positive, meaning that it is highly likely i have coeliac disease. Now at first I was relieved that I may have an answer to why I've been feeling so horrendous recently, but the more and more I look into it, the more upset I am getting.

My family is italian so almost every dish we eat contains gluten. I am fearful of how this diagnostic will affect my family meals and therefore my relationships with my family.

This may sound silly but I am also terrified at how many foods I am going to have to cut out. I have never had a "love" for food and to then think I may have to cut out the majority of foods that I actually like its really hard to take in.

My bf has tried to be supportive by saying that I will be able to eat these foods I like every now and then and it wont kill me. This is hard for me to listen to because I know he is trying to help but I dont think he understands the gravity of Coeliac and how important it is to be completely gluten free. He says I am eating gluten now and its not killing me so a little treat every now and then isnt the end of the world.

Anyway I'm sorry for moaning. I'm just having a hard time processing this potentially life changing information. If you have any advice on how you dealt with it best I would love to hear from you. I am based in UK if that helps tailor advice.

From now it is a waiting game regarding my endoscopy test. Thanks for reading.

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When my OH was diagnosed with coeliac disease, I think I made a comment like your boyfriends, because I knew other people who had to avoid gluten, but who would occasionally cheat and take tablets to deal with the symptoms. It'll be a sharp learning curve for both of you, but I'd find some information for him to learn about the illness, because the more on-side he is, the easier this will be for you.

Unfortunately you really can't cheat - the damage it causes to the gut can take a few months to heal again, and the side-effects would probably not be worth it.

I know it's a lot to get your head around, but you'll actually be surprised - Italy is one of the most educated countries when it comes to coeliac disease, and when it comes to eating out, about half the restaurants that are safe for coeliacs are actually Italian ones!

My top tips:

1. Write out a list of all the gluten free meals you already know how to cook: stir fry, Sunday Roast, Baked Potatoes, Chilli, Stroganoff, steak, etc. I aimed to write out a list of 30, so that's pretty much a month without repeating a meal. It helps re-frame your mind from what you can't have, to what you can have.

2. Join Coeliac UK, their app is really helpful for getting your head around what you can and can't eat.

3. Find your local coeliac UK group - they often do new member events where you can meet people in the same boat, and ask lots of questions from people who've been through it for a bit longer.

If you happen to live near Glasgow, send me a PM, and I'll share some local tips :)

Make sure you keep eating gluten until you get your endoscopy. Take this time to enjoy a few foods you know you'll miss!

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Thank you for the thorough advice. :)

Unfortunately I'm on the other side of the country (Brighton!) but will take a look at some local groups that may have some local tips. I think Brighton is a good place to be as it is very inclusive for different food diets so I guess that is a positive!

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Hi Cooper27,

I wouldn't mind picking your brain for good eating in Glasgow, i stay in Irvine and would love to hear some recommendations. I love the butterfly and the pig so that tends to be my go to place but would like to try others.

Angela

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Of course - I'll send a message over tonight! There's a cookery course you can take at Glasgow College too, if you need to learn some new recipes :)

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Hi,

I agree with almost everything Cooper27 has said.

You will have to seriously check out the gluten-free pasta after your diagnosis is confirmed - a lot of it is really good and it’s an easy switch to make. GF pasta is best eaten hot soon after it’s cooked though, because it doesn’t for good make cold salads in my opinion. The only other real difference that you will notice is that it will turn the cooking water cloudy.

Gluten-free pizzas are also easy enough to get your hands on these days.

Tell your boyfriend that eating gluten occasionally might actually kill you in the longer term because it would raise your risk of getting bowel cancer! And anyway, would you really want to go back to feeling as bad as you do now…?!! Btw, did you know that depression is a known symptom of Coeliac Disease? So keeping to a gluten-free diet might actually help alleviate this health issue for you as well.

Keep eating gluten until the follow up tests are done! But use the time to start getting your head around saying goodbye to some of your favourite gluten items.

Being gluten free is a big change at first, but it’s fine once you get used to it. I’ve been a Coeliac since November 2012, and it’s just a way of life now - a good life too!

Best of luck - and make sure that any referrals that your doctor makes have the tag ‘urgent’ next put into them. It might help speed things up a little.

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Thanks regalbirdy. I'm trying to think of the foods I will miss so I can eat them now and make the most of them but at the same time I'm quite repulsed by the idea that they are damaging me and making me feel as sick as I do right now. Hopefully this will help make it easier for me if/when I have to cut out gluten all together!

Not sure how long it will be until my endoscopy as I didn't ask my doctor the wait times but hopefully it wont be too much longer.

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I remember the feeling well of enjoying a food and also feeling repulsed by it while I was waiting for my diagnosis to be confirmed.

Keep a close eye on that referral. Waiting times vary widely across the country – so be as flexible as you can when choosing which hospital you would like to go to. It could save you many weeks of waiting. x

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I have a £20 krispy kreme donut gift card ....after googling and realising they dont offer GF donuts, do I stuff my face in the mean time before my endoscopy or sadly give it away?? lol

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Go for it! Maybe invite a few friends to share them too...? Don’t leave yourself any unfinished business!

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Give it away. Make a clean break and don’t look back.

Giving up alcohol which is grain based was my don’t look back moment.

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Hi ravenpom,

You're family will get their head round and adapt. I try and do more of the entertaining family occasions at my house so i am guaranteed i have tasty and safe food. In saying that, now my family do try and make more effort to accommodate me without making me feel like a leper.

Take care, you will get there.

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What did Italians eat before Marco Polo introduced pasta from China to them? Go back into your ancient history to find meats, and all the Mediterranean dishes like anti-pasta. There are great Italian dishes out there that are very healthy and do not have pasta.

Olive oil is your friend as you stop using butter. Celiac is not just gluten but is also casein protein which is in all dairy products.

Going without cheese and dairy I feel is harder. I’m currently gluten and dairy free.

Going to Italian restaurants for me are very hard but I’ve found chefs rise to the challenge and will cook me a nice seafood dish with gluten free pasta and use olive oil and no cheeses like parmesan.

Depression and anxiety are both symptoms of a vitamin B12 deficiency. Has your B12 level been tested. Get it done before you start supplementing with vitamins supplements. Also look at testing folate as it is also impacted by intestinal issues.

When you go gluten free these day you stop getting the enriched flour that is mandatory for bread and cereals. You will need to add vitamins to your daily routine.

Don’t think you can cheat occasionally. When I get gluten contamination, it is like a week of hell that is worse than before I stopped gluten. Gas, wind, cramping, TMI generally.

I found that while I was sorting out all my food issues I became “mono-food” for a week at a time. It takes this long for the gut, hepatic loop and blood to get rid of the toxins from gluten and dairy. Also there is a 24 to 48 hour delay in symptoms showing up. Start a logbook of all your food, drink and meds and then note when symptoms appear disappear (typically when you have the poo that gets it out of your gut). Look back in the logbook 3-6 hours for the cause, for things like brain fog and depression look back 24 and 48 hours. You will begin to see you pattern and sequence of symptoms that arise from gluten contamination.

If you suspect a specific food, get it out of your diet for at least two weeks and then reintroduce it once and monitor your symptoms over three days.

Sorry it is such a hard story but you can do it. Unfortunately you will not be getting the right help from family members and friends who don’t have it and cannot comprehend.

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Dairy is cross-reactive, so around 50% of coeliacs also find they're dairy intolerant. It's really hard to be gluten free and dairy free. Thankfully half are OK with dairy, which is good, because people with coeliac disease need to consume additional calcium (1000mg/day, normal RDA is 700mg).

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I’m one of the ones who are both dairy and gluten intolerant. I think trying to eliminate both at first when one is trying to sort out what is what is a more efficient. One can always introduce dairy later if it is determined to not a contributor.

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Feeling for you Ravenpom. I remember the mourning I went through when diagnosed as I love my food but when I went gluten free I became hypersensitive to gluten so the attacks are awful if you make a mistake or cheat. However this is good in the long run as you no longer mourn and embrace the gluten free diet as you feel so much better on it. I became hardened very quickly to watching people eating fresh crusty bread and thinking how ill I would feel if I ate it. Most restaurants are really good with GF now as are shops. M&s, Waitrose, Tesco, Sainsbury, the health food shops all have great selections. Coeliac UK are a great resource. To be honest now I have found the GF bread, cereal, pasta etc that I like I have forgotten what the real stuff tastes like so don’t miss it. Cooking at home for the family is easy when making fresh meals and ours are mostly GF. My teenage boys can’t tell the difference between GF & normal pasta. It’s a good idea to have your own bread board and toaster due to contamination. My friends & family have been really good and go out of their way when cooking for me as know how ill I will be for days after if they make a mistake! They tend to spoil me and buy me lots of GF goodies. I have put on weight as now absorb food properly but over eat on all the spoils people buy for me!

When first diagnosed I tried to put it into perspective that ‘it could be worse’. It’s really a slight inconvenience eating GF rather than having a life threatening illness like cancer etc. You will get your head round it but it is a shock at first so don’t be hard on yourself and take time to process it. You will feel so much better soon after you go GF so look forward to that 😊 and you won’t look back after. Good luck!

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I’m in your position currently. I’m type 1 diabetic and have been having muscle and nerve pain for over a year, but as I am also epileptic like you I didn’t want to bother the doctor with another symptom. I had to be off work it became so unbearable and was disciplined because of my sick record. I became very anxious. I said I needed a blood test for everything, as I felt I was being misdiagnosed with diabetic neuropathy. It came back a low calcium and bone density and numbers that would indicate coeliacs disease. I was shocked. I’d heard of it but didn’t know what it entailed. I’m waiting for an endoscopy now and after a period of intense upset at having to be different again, I found out lots of type 1 diabetics also have it. I’ve cried, had cravings, mourned for the things I’ll never have again ( love a Double Decker if my blood sugar is low - no more!) and ridiculously bought food I never liked in the first place? I’m still eating gluten until I have the endoscopy but it doesn’t taste nice anymore. My biggest fear has been having to tell people and them thinking I’m either being faddy or trendy or whatever. I’ve suffered a lot of ignorance after being type 1 for 43 years and epileptic - this seems like I’m making it up for attention! How can she possibly have more! But lots of places have gf food I’m discovering, including my favourite Italian. My friend very kindly said that I was still the same person, it’s just I have a different diet,and I’ve held onto that idea. I was becoming a hermit due to feeling very upset but I’ve noticed that it’s not something that has to define me. I’ve been signed off for a fortnight to go to appointments as it’s affecting everything else, and I wasn’t feeling strong enough to talk about it, but I’m looking forward to feeling better quickly, and can’t wait to go gf now. Just a waiting game. I wish you all the best and don’t feel lonely - we know how you feel xxxx

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Hi Ravenpom,

Sorry to hear this, but it does explain how you were feeling. Counter intuitively, the Italians are really good at gluten free because it is incredibly common amongst Italians, so this is a bonus. No doubt you will need to do your homework with them so they understand, but it is doable.

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I am so sorry to here that you have have this.i don't I have IBSC. But I can understand your being upset about eating with your family.

I am 3 diets Gf,Df,and the Fodmap

But, if your family loves you they will understand

As far as advice when you go to places look for weat in things,ask for GF options,they should know there is also am app that can help you find GF please in the area

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I don't have anything to add to the good advice you've had here, but just to say it will be OK. I know how difficult it can be to refuse food in family situations, but you will find how many alternatives there are now. My partner was diagnosed about 8 years ago I think and at the beginning it felt like eating out or with the family would be really hard, but the offer has changed so much over the last few years and most places you eat out at will have alternative menus or chefs are expected to know what's in food and will adjust for you. Be grateful to those who are doing it because of fashion because it's really helping expend the options for coeliacs. Coeliac UK are good to join especially at the beginning when you're navigating this new world and in our area they had a food fair. You'll find lots of people in the same boat. Final point: be patient as you might find it's a long haul feeling better and people with sensitive systems like yours can find it a long journey and you might need to adjust other food as well. But you can and should feel hopeful that you'll soon feel better and you've found a root cause. Good luck!

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Hi, I can totally understand how you feel!! I was diagnosed 5 years ago. Having the biggest sweet tooth ever I was panicking. Rest assured you can eat no problem. There is a great choice of gf food available in the super market's Inc a choice of various parts, lasagne sheets etc. It's just adjusting and getting to know what you can and can't eat. Eating out is a bit more difficult, but again you can always get something. Good luck

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One of the biggest potential drawbacks is having to cook your own food. I say potential because I actually love the cooking aspect but that's easy for me and the wife as we have the time. The cheap ready made meals are going to be off the menu mostly as if I were to find one without the wheat as an ingredient I just don't trust them anyway.

We've just made 2 mammoth meat and potato pies today and they'll be portioned up and frozen. First time I've made my own GF pastry and it's pretty good (I nicked a bit of pastry and managed to get my fingers out of the way before wifey brought the carving knife down).

When you do find stuff in the supermarket it costs an arm and a leg anyway.

As someone else pointed out, joining Coeliac UK is helpful, costs me £2 a month by DD and they have an App you download onto your smart phone and then you can scan the item and it'll either give a smiley face or a sad face telling you whether or not you can eat it. Unfortunately there's still a lot of items which aren't registered so you'll not get a result. On their website you can search as well for items. Like brown sauce, I love a bit on my sausages, bacon and eggs etc but HP is now a thing of the past but I have a CO-OP one (I Think) which is fine.

You're in good shape really, I don't have a diagnosis and doubt I ever will. My GP says my blood test shows I don't have it so I just did it anyway. I've been gluten free for around 5 months now and feel so much better than I did, I'm not 100% and maybe I never will again so I'll just have to live with it.

As far as it being too much for you I'd suggest that's the depression and anxiety. When you've been properly diagnosed and you go gluten free the D&A will lift and you'll be in a much better place to handle things, that may sound like it's a million miles away but it isn't, you'll get through it and return to a great standard of health i'm sure, good luck.

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Of course you can’t eat any, your bf just doesn’t understand but many people won’t and so you will need to educate them. I spend a lot of time in Italy and it is the most coeliac aware place I visit, mainly because it has the largest percentage of coeliacs. There will probably be other coeliacs in the family. You might get your family to understand that your italian heritage is probably why you are coeliac. There are lots of pastas that are gluten free, my favourite is the buckwheat (which isn’t wheat) and most things are available gluten free. Your biggest challenge will be teaching them about cross contamination. Try pointing them to some information and I bet they get behind it. My italian friends and the most understanding. Good luck.

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