RECENTLY DIAGNOSED! 26yr old female, anyone in the same boat??

Digestive health
1

So I have been diagnosed with the wonderful disease known as Coelic. I've never been much of an eater, more a 'grazer'. And because of this, I feel as though I'm really struggling to eat food at all.

I'm currently surviving on wheat and gluten free crispbreads and gross unflavoured wheat free brown rice protein shakes (it's like drinking sawdust with water).

I'm aware that I need to do more research on foods, drinks, restaurants, the do's and don'ts etc...of coeliac.

I've been prescribed a high dose of iron tablets (naturally) as I was told I was dangerously aenemic.

It's been just over a week since my diagnosis, but does anyone else experience that non-sufferers just don't give a toss? I feel like my partner just doesn't understand when I say I have ZERO energy. I can't just get up and get on with it when I have days like these. I'm self-employed and I'm terrified of failing just as my business is picking up.

Has anyone else experienced this in the sense of their other-halves not fully understanding and expecting more from you? I'm totally aware it's not a death sentence, but it is a life sentence and I just need to adapt my life around it, so perhaps talking to fellow sufferers might just give me the outlet I need?

Any advice or just a good ear is hugely appreciated, as I feel utterly alone at this point. 

- A frustrated and exhausted hairdresser,

Chikimeo.

2

Hugs, Chikimeo!!

It's a long journey to finally be well, but your healing is already starting!  It's SO overwhelming, isn't it?? And your body is depleted! Makes it so much harder to handle it all - the everyday stuff and the major life-style changes.

Sorry your partner isn't supportive sad Hope he or she comes around!  Meantime, let's focus on you!

So, your iron is too low - when that's better, you'll feel somewhat better, too! How about your B12? Every Coeliac should be checked for B12 deficiency, and also vitamins A, D, E & K.  But, it's rare that it even gets done...so don't be afraid to ask. (Oh, and calcium, too? Eh, couldn't hurt!)  I don't have CD (my son does) but my low B12 alone is enough to knock me on my keester with no energy and lots of fog/neuro issues/pain/fatigue...it's rough! I wonder if you have that on top of everything else???

Honestly, I think venting is fine! Some others may not feel that way, but I need an outlet for my frustrations so I can move on...often. redface  As long as it helps you do just that...move on...then yes, come and vent! ALSO, come here for HELP!  There's a society that you can join - and a FB page to help, too. I live in the US so I'm not sure where to send you, but search in these forums and you'll find more info. 

This is a marathon, so pace yourself. If you weren't a big eater before, that won't change soon (but may change when your gut heals in 6-12 mos or so). Biscuits and shakes aren't going to really sustain you, though. Is there any whole food you like - fruit, veggie, lean protein? Red meat may be your friend, between the iron & b12, if you can manage it. Studies show that peppermint tea helps the gut to heal...if you prefer to drink over eat that may be good for you to try.

You have so many changes to make. Before you eat out/take out, be sure your own kitchen and pantry are safe for you. Get new, dedicated GF equipment like colander, cutting board, toaster & maybe cookware (like if your pots/pans have scratches/ridges). If you're near a health food store, tell them what you like to eat and ask for recommendations as they may be in a good position to help you find safe alternatives that you'll actually want. Do you have a friend-of-a-friend or distant relative with CD or gluten issues? Call on them for suggestions - it's such a huge help even if it's just the name of a take-away or one restaurant. 

Don't be afraid to tell people! You don't want to carry on, but in a professional way, let your clients know what you're dealing with and what you will be overcoming to be able to better serve them. Same for your partner, in a way - since you'll be in better spirits, with better energy and memory and appetite for life! It won't happen overnight and it won't be all progress, you'll have setbacks too. But it will be much, much better!  In four months, you'll breathe again, in six months you'll feel even better...and on to about a year. Keep seeing your doc, go for all the blood work you need and stay strict about your diet.  It's HARD WORK, but it's SO worth it!!

Speaking of great hairdressers, I'm off to see mine soon! Did you know that B12 deficiency can switch off the body's mechanism to pigment strands of hair? Wish I knew that when I started graying in my teens...ah, too late now!

MORE HUGS!

A

 

3

Thank you so much for your kind words Aveline and all the way from the States too!

I can't thank you enough for your helpful advice, it certainly doesn't go un-appreciated cheesygrin

My chap is ex-forces, so unless I have a limb missing, I'm okay, lol. But more than anything, I think he just feels helpess to help me and gets frustrated that I'm generally stuck on the sofa taking naps as I've only just been diagnosed and the iron tablets have hit me for six.

I have always been a very keen cook and baker, so once I have my strength back, I can finally start cooking and baking some yummy and nutritious meals/cakes etc.

I have always had a love for my herbal teas so therefore, peppermint I drink by the gallon on a regular basis- so it's good to know I'm doing something right! 

I am keeping my vitamins in check but I won't find out where/what I'm low on until all my bloodwork next week, as the only thing they tested me for a week ago was iron and then they told me I tested positive for Coeliac.

As for hairdressing tips, if you feel you're tired of your greys and stubborn to get rid of, ask your hairdresser to use liquid peroxide before applying the hairdye as this allows your hair cuticles to become more open, therefore, the color works a lot better to cover those pesky greys smile

Much love from Chikimeo, across the pond! xx

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It's worth joining Coeliac UK.  Apart from a lot of information about CD, they provide a directory of suitable foods and if you download the app you can consult this on-line and also look up suitable restaurants in the neighbourhood..  I tend to do my shopping for groceries on-line because it is easy to specify gluten free and get a list of suitable products, it just makes life a little easier.

So far I have managed to find all that I need although some foods that I would like, such as a decent, crusty baguette, are not available GF and many that are available are more expensive than non-GF versions - up to a factor of 4!

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Hey Anthony,

Shopping online seemed to keep cropping up in my mind as an easier option, rather than spending 70,000hrs in a supermarket having to check all the flippin' ingredients! 

Any in-put/advice anyone can put forward for me, I am hugely grateful for, so thank you for your very welcomed post hun smile

Best regards,

Chikimeo.

6

Life is a bit easier theses days because any allergens have to be highlighted in the list of ingredients so one no longer needs to peer at a long list of items in small print hoping to spot the important things.  I have not tried it myself but the Coeliac UK smart phone app offers the facility to scan the bar code of a product to see if it is in the directory of gluten-free products.  It is better, though, to have much of the work done for you by shopping on-line.  The other advantage of shopping on-line is that there is usually a better selection of gluten-free alternatives available than in-store.

I use Sainsbury's but I would expect the other main supermarkets to be very much the same.  Other than for naturally gluten-free items, meat, vegetables and so on, the low cost supermarkets do not usually cater for the gluten-free market.

What you have to get used to, though, is that many of the gluten-free alternative products are not as good as the regular versions but are more expensive.  This is particularly so with bread and many pastry items.  It's very much a case of trial and error in sorting out what suits you.

Good luck with the journey that you are starting, it's not really so bad once you get used to it!

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Hi Chikimeo, Believe it or not you are a very fortunate young lady :-)  I had a lifetime of symptoms which gradually caused other auto-immune problems such as Hypothyroidism and another one whose name escapes me at the moment.

I was so ill that I was twice diagnosed by GP's with Muscular Dystrophy, which I didn't follow through with testing because I didn't want to know how or when I was going to die !

I ended up bypassing my GP and going direct to hospital (long story) where they discovered the Hypothyroidism and told me that I had got as close to an afterlife as anyone had a right to. However it took several years more for me to self-diagnose Coeliac disease, confirmed by blood test and biopsy. The GP missed it all!

Long story short, through all this I still managed to run a successful photographic business (with an 8 month sabbatical due to doctors orders) and I am now a slim, athletic and energetic 60 year old, feeling better than I've ever done in my entire life and more like a 16 year old with, hopefully, many more healthy working years ahead.  Needless to say, I love my Gluten Free diet , such a very small price to pay for good health.  Once you've had your biopsy you will need to check your bone density and your blood vitamins and minerals, which will have been affected due to the malabsorbtion in your small intestine.  Because auto-immune responses are affected, you may also need to keep a wary eye on your Thyroid levels as time goes on. Ask your doctor for these tests if he hasn't already suggested it.  Also, because it tends to be genetic you should recommend that your immediate family members have a blood test.  The essence of this message is that it's really not a big deal once you've been tested and life will only get better :-)  I hope this is helpful to you. With best wishes, Mark

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Hi Chikimeo,  sorry you are feeling so low, anaemia can do that to you easily.  If you want to feel less tired faster, apart from following the diet which will slowly get rid of the coeliac antibodies in your system, ask your doctor if you can have iron injections instead of the tablets.  I found that the tablets are useless until your intestines are healed because you won't absorb them, and they will just upset your bowels.  The iron injections are not fun but each one raises your blood count by one unit and you quickly get to the stage when you are feeling more human.  Plus you will have spectacular bruises on your behind to show off to your other half to get some sympathy.  As far as the food is concerned, it is a case of searching to find something you like.  I love the triple seeded Genius bread which is as a bread addict is the best tasting i have found.  There are loads of things in the supermarkets for coeliacs, shop around different ones to be able to see the full range available to you.  Most of your usual foods can be made in a gluten free way.  Just put in a google search for gluten free and the name of your fav food, you will be inundated with advice and recipies.  I know you must be feeling resentful and frustrated at the moment, but wine and most chocolate is gf so indulge yourself.  XX

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Crikey Mark! I salute you sir for still being here and finally reaching a happy and healthy lifestyle smile

Thank you very much for your advice which I shall very much take on-board as, any/all advice from fellow sufferers is always helpful in my eyes.

Chikimeo xx

10

Hi Anne!

Thank you for your reply, funnily enough, my father mentioned the bum iron injections, hehe- which in hind-sight (no pun intended!) may well be a better answer as, my iron tablet only seem to either be making me feel very sick, actually sick or a slight boost of energy for an hour maximum and then I'm back to square one sad

I'm not a drinker, but thank you for the wine advice regardless wink

I have my hospital appointment tomorrow (most likely the first of many) to see what exactly is going on with my 'tested positive for coeliac'. 

So I guess I'll keep my blog updated and welcome any and all replies smile

Thank you everyone!

Chikimeo xx