Feeling rubbish

[Donken]

Is it normal to feel low and hate everything you cook and buy when first diagnosed. I’m really struggling

[Hidden]

Hi

Cant answer for anyone else but i went say yes. Or in my case i did and still do. There are times when i will go without rather than eat something i know i really don't want. I have other diseases though and suffer from extreme fatigue and nausea so i can't always cook something decent and tasty so i go without. My husband dosent understand as he has whats trained so sees food as fuel. I am sure you will get alot of positive feedback not all bad like mine 😊

[Regalbirdy]

Hi Donken.

Yes - it’s absolutely is ok to feel the way you do. Receiving a diagnosis of Coeliac Disease is a life changing event.

The psychological aspect of receiving a diagnosis is so often regrettably overlooked. However do bear in mind that the way you’re feeling could also have a physical cause - in the form of vitamin and mineral deficiencies (which are treatable).

I had to work out food item, by food item what I could safely eat. I tried loads of different items, some of the gluten-free replacements tasted fine, but others were awful!

I felt physically awful at first. So knackered and brain fogged. I needed to go back to my doctor quite a few times - especially in the first 6 months following diagnosis. Each time I would make just a little more progress on the road to feeling better.

In my first few months I also went through a range of emotions. Fear, frustration, anger, embarrassment, sadness and loss; but also hope and determination.

Unfortunately the follow-up care post-diagnosis in my area is/was almost non-existent. I managed to fight for B12 injections. I tried taking B12 orally at first but due to the villi damage in my guts, I wasn’t absorbing it properly so the doctor acquiesced. This helped quite a lot.

Next I had to sort out my vitamin D levels - again due to the Coeliac Disease I was deficient in this as well (severely!). Once this has been treated I also saw an improvement.

I was also slightly magnesium deficient. Even to this day I find that taking the magnesium supplement is beneficial.

I would suggest making an appointment with your GP to see if you have similar issues. Btw, get your iron levels checked (if you haven’t already). Don’t be afraid to ask for the numbers and the ranges so that you can learn what levels are right for you.

You will probably also need to enquire about a bone density DEXA scan once lockdown relaxes a little more.

In the meantime, do make sure that you take a good (GF) multivitamin every day.

You are going to feel better (I promise!). However it will happen gradually - it’s not like getting over a common cold.

[Donken in reply to Regalbirdy]

Thanks for your advice. I take a vitamin B12 and vitamin D from Holland and Barrett but not sure if these are gluten free

[Regalbirdy in reply to Donken]

Holland and Barrett are pretty good at saying on their labels which of their products are tested for gluten free.

If there isn’t any mention on your particular product, don’t be afraid to ping them an email if you need to . x

[Hidden in reply to Donken]

Be careful with H&B own brand. I've found them to be poor quality. Those that are labelled GF can still contain gluten as ingredients can be deemed gf even if they come from wheat source. B-Vits can be taken from malt barley/brewer's yeast source, both gluten sources, so be cautious. You can contact their customer care if unsure, but again they are not very well informed. As rule of thumb, check out better brands like Solgar and avoid own-brand products.

[Regalbirdy in reply to Donken]

Btw, the daily multivitamin I take is made by a company called Viridian. It’s not the cheapest brand on the market, but neither is it the most expensive.

I recommend looking for a brand that also has a wide range of minerals in it as well (eg. copper, selenium and manganese, etc), rather than just the basic array of vitamins.

[bookish in reply to Donken]

I too won't use H&B - full of fillers and not good quality. I found I couldn't tolerate corn - it is not just about the wheat, unfortunately, and can get more complicated than that - so had to find really good, clean, corn-free supplements. Cheers

[TheKaleidoscopeInMe in reply to Donken]

You can ask your local pharmacy to check if your prescription and over the counter drugs are gluten free. They can track them down per lot if they need to because even the manufacturing or ingredient list can change.

[Hidden]

Yes, i feel the same, gone off most foods, i hate eating because I know I will be ill afterwards. Had symptoms for 5 years but only recently gone off food, I force myself to eat to stay alive

[Regalbirdy in reply to Hidden]

Please go and get yourself tested for Coeliac Disease. It is fine to go gluten free, but this shouldn’t be attempted before this test is concluded.

[TheKaleidoscopeInMe in reply to Hidden]

Me too, I was down to 600 calories a day. I loved the weight loss but hated that I could barely function because even with the little I ate, I wasn’t getting any nutritional value since I hadn’t been dx’d.

[Starjump]

I really sympathise. I felt quite low about not knowing what I could safely eat. But I’ve now worked out the meals I love and will be safe with and that’s helped hugely. I have to avoid all GF bread/biscuits/ flour, which felt tricky. But it’s actually been liberating. A diet of meat, Fish, veg, fruit, dairy, rice, nuts, seeds is actually pretty healthy. So that cheers me up. Along with a glass of wine in the evening. It will get better. But yes do check those vitamins are gluten free! I made that mistake twice at the beginning

[bookish in reply to Starjump]

Same here, started off with bought GF and made GF myself but realised I was reacting to oats, potato and rice starch and especially corn so had to get supplements without corn (not easy!) and basically stopped eating anything with any kind of flour in it. Low acid means I can't digest meat and struggle with fish, also have a dairy intolerance and multiple autoimmune so am eating lots of veg, some fruit, a little fish, eggs, a few nuts, plus good fats - extra virgin olive oil and coconut oil, and apple cider vinegar, lemon juice with meals. Seems to have pretty much sorted out my terrible nutrient absorption at least. Best wishes

[Sheepish]

It is hard at first. I try to eat as simply as possible, oats and fruit for breakfast sardines and salad at lunch and then meat, potatoes and veg for dinner. I cook from scratch and make my own cakes, bread and biscuits. Pasta is the worst thing and I really missed it at first. You will get there it just takes a while to find out what tastes ok. On a plus side I'm glad I can still eat chocolate and chips x

[Afrohair]

Hiya I don’t have celiac but here are some things I can’t eat due to medical reasons

Gluten

Diary

Red meat

Sugar

Processed foods such as hams ,takeaway etc

I’ve found it extremely difficult and lost tonnes of weight which made me feel worse only few replacements I like I find it hard cooking all the time as I seem to have to make everything myself I can’t eat a quick mc Donald’s like I used to .if I ate the following foods it would lead me to extreme pain so I’ve had to sacrifice your not alone and I’ve been there were you can’t even feel sociable cause you can’t eat what’s offered it’s extremely hard with my diet I have to take snacks out with me x

[TheKaleidoscopeInMe]

Totally. I practically gave up eating except for snacks. I do not recommend that. I have known about it for 3 years now and it does get better. Working with a nutritionist was the most help. I was very realistic with her about what I ate before and after dx’d. I even thought I had eliminated gluten! But then she found about 5 ways I was still cross-contaminating at home. With learning those things it took about 3 months before I was truly GF.

[Starjump in reply to TheKaleidoscopeInMe]

Cross-contamination seems a constant problem for me. And I can’t always work out how. The kids’ not clearing up breadcrumbs can be one for me, but they are pretty good on the whole. I’ve stopped sharing butter.

How were you cross-contaminating? Wondering if I’m missing something obvious!

[stillaboveground]

Hi, I was treated for eczema for most of my life, when my son was diagnosed with coeliac and DH (dermatitis herpetiformis) I told my doctor and he suggested I be tested and I found out my skin problems are caused by coeliac I too have DH I was 71 years old when I was tested. A lot of the G/F (gluten free) foods are disgusting a few are not too bad, some have a lot of sugar or fats in them to make them more palatable, better to make your own, you would be amazed just how much food is naturally G/F. I too found it a struggle at first, but you will get there. Good luck, take care