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Feeling really low

kam00096

By kam00096
in Coping with Celiac Disease

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kam00096 Contributor
kam00096
Posted

Sorry this is really moany! I posted last weekend about having symptoms and not being sure what was causing them. I'm still feeling rough and just really down about things. 

My symptoms from before I went gluten free are pretty much all back (although admittedly at the moment they're not as severe as they were). I'm struggling with the diet - not with sticking to it but just with checking and double checking everything and there are so many products and ingredients I'm not sure about and can't find a definite answer to. Plus I'm really struggling financially right now and as I live by myself, and work crazy hours with no proper breaks, I'm finding it hard to use fresh products before they go off and feel like I'm wasting money. And I'm vegetarian which isn't helping either. 

I still haven't seen a gastro consultant and when I phoned to chase it the other day they laughed and said it would be the end of the year before I got an appointment (so that's a 10 month wait on the nhs). Spoke to my doctor today who said they'll try and push it through but who knows. Plus it turns out my previous doctor could have referred me to a dietician but didn't (told me I had to wait for gastro first) so I've wasted nearly 4 months on that too.  

I woke up four times during the night with severe nausea and night sweats last night and I'm shattered. 

When I got the positive blood tests in February  I was relieved as it was finally an answer that made sense, and something I could take control of, but now I'm just tired and stressed. 

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flowerqueen Community Regular
flowerqueen
Posted

Hi Kam, I'm sorry you are having problems, but unfortunately I think you will find that when you finally get to see the consultant, they will probably want to do an endoscopy to confirm you have coeliacs, which will involve you eating gluten for at least six weeks, prior to the test.  (Most people don't give up gluten until after this stage - did your doctor tell you to start a gluten free diet?

As for you still having symptoms, it may be that your body is still de-toxing, as it can take sometime. Is it possible for your doctor to get you in to see a consultant at another hospital? _ as the NHS usually have more than one hospital to chose from for you to get seen at.  

Another point I'd like to make is that you may also have food intolerances, for example diary/soya etc., or your symptoms maybe caused by something else.  

I hope your doctor manages to get you seen by someone soon.

Jmg Mentor
Jmg
Posted
1 hour ago, kam00096 said:

 When I got the positive blood tests in February  I was relieved as it was finally an answer that made sense, and something I could take control of, but now I'm just tired and stressed. 

Sorry you're going through it right now. Have been there. It will get better. 

Some ideas:

Join Coeliac UK. They'll send you a book with all the gluten-free products listed both by shop and by type. This will save you a lot of time and money also because it includes the 'safe' products from the regular shelves, not just the Free from aisle. There's also an app and website directory you can access. You may also be near others in the same boat, they do meetups etc. Some definite answers and moral and practical support :)

Do a sweep of your kitchen cupboards for any rogue sauces or herbs that might be glutening you. 

Make larger quantities of meals and freeze them for later.

Take a decent multivitamin (B complex) pro biotic and fish oil supplement

Eat simple, your taste will change and reducing the numbers of ingredients make eating less stressful plus its easier to identify anything causing additional issues. 

Keep a food diary, what and when you eat and how you feel. Just brief notes but can help you identify rogue foods. 

Start the day with a veggie filled omelette. Will use up some of your fresh foods. Loads of amino acids and healthy fiber. 

Google healing the gut. I realise bone broths aren't an option for you, maybe this page will help: Open Original Shared Link

Finally, do follow up FlowerQueen's idea above but if you do have a (shocking) 10 month wait for the gastro try to put it out of your minds. They can diagnose you but there's no cure other than a gluten-free diet. So focus on that and don't worry about the gastro. That will come when it comes. 

Best of luck!

 

GFinDC Veteran
GFinDC
Posted

Hi Kam,

You are struggling with identifying all the ingredients, but you don't have to.  It's better to eat only foods you prepare yourself at home.  Whole foods with a few ingredients are better for us than processed foods with lots of ingredients.   At least while we are healing.  It can be hard to get enough protein and vitamin D if you are vegetarian.  And we need protein for our bodies to heal and rebuild tissue.

A simple diet of simple foods is a better choice for recovery.

kam00096 Contributor
kam00096
Posted
  • Author

Thanks very much for the replies. I've posted about this before but I'm not doing the endoscopy/ biopsy. I was horrified when I thought it was an 18 week wait never mind 8-10 months. I was advised to go gluten free by my doc because of the wait and because I was so ill. They said I could do a 6 week gluten challenge after the first gastro appointment but I just can't do it... If I get even more ill again I will lose my job as when I got the blood test results I was too ill to drive and work (I don't feel well now but I'm not as bad as I was!). Hopefully the doc will phone me next week with an update on what's happening next. 

I'm definitely going to try to simply my diet and start a food diary. Had already joined Coeliac U.K. but obviously there are things that aren't included and I'm finding it hard. I'm trying to do batch cooking and freeze leftovers but I get panicky about safe storage and food poisoning and only have a tiny freezer. 

Thanks for all of the advice I really do appreciate it. 

Jmg Mentor
Jmg
Posted

I know what you mean about food storage etc. My whole attitude to food changed and I became a lot more suspicious/paranoid about things! I'd like to think that's subsided into vigilance now, so hopefully it will for you also. :)

You had a positive blood test and if you're not going to go ahead with the challenge perhaps you need to try and replace the support as a diagnosed celiac you would get from the doctors? You mentioned seeing a dietitian, maybe you can act as your own? Use the diary and your symptoms to see if you can identify any changes to make. Maybe if you're feeling down it's a case of adding specific vitamin supplements or foods high in tryptophan etc?  Or maybe there's some other foods you need to exclude, at least until you've healed up some? There's a lot of expertise on here and elsewhere on the web if you share your diet say or ask other vegetarians how they do it?

 

 

 

kam00096 Contributor
kam00096
Posted
  • Author

Thank you! Am starting to think it's not celiac at all. Have felt horrendous today - pretty much as bad as I was before going gluten free and it's following the same pattern... I feel fine for a few months then I feel awful for a few months and then it passes again. Maybe it's Addisons (the docs are meant to be checking!) or maybe I'm still getting gluten from somewhere but neither of those explain why sometimes I'm better without anything else changing. Honestly I just want to cry this time. I finally thought I'd found answer (and a solution) but obviously not. I can't cope with waking up feeling like I've got flu or the world's worst hangover (I don't even drink!!!) then go through every day just trying not to throw up again.

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