Clueless Newbie

[clairew]

Hello everybody,

I live in Britian. I was diagnosed last monday through blood tests and biopsy. I have just started my new diet. I seem to be living where my doctor and other health proffessionals are a bit clueless. I have basically set up my own diet and treatment through research, only to be told, thats great kepp going. I found your site while surfing the net to get some idea as to what i am up against. I have not been well for nearly 2 years and have been getting progressively worse. I am now severly anemiac (sorry cant spell, brain not working!!!). Sorry i seem to be rambling. Basically i am getting worse, i am getting mentally forgetful, constantly got stomach cramps, and diahorreoa, cant breathe well, due to anemia, among other things,but the big thing is, for about a week, i have been getting this really horrible pain in my arms, legs and back. It is not my joints or muscles that hurt but my bones, sorry if this sounds silly, only way i cant think to explain this. I have spoken to my doctor, and he thinks i have a cold. Has anyone else had this? Anything i can do to alleviate it? Could someone advise me as to how long it will take on my diet before i feel better. I am taking iron tablets, folic acid and b12 for the anemia. Sorry just keep getting told i am doing brillant keep going, but it is getting a bit much to deal with, and people are treating me like i am a whinger.

Any help or suggestions would be gratefully recieved.

Thanks again Claire

[gooddawg315]

hi clairew, welcome to the gluten free world. I am pretty new to the whole concept too (a few months in now). The first thing I did was go out and buy some books on living gluten free. I liked The gluten free bible by Jax Peters Lowell and the book "gluten free for dummies". I also picked up a Bette Hagman cookbook, YUM!. of course this web site helped tons too!!! I found going completely gluten free at first terrifying thinking I could never eat pasta or bread again, but I found lots of great alternatives. Hopefully you have a specialty or natural food store nearby. Since I am from the states, we also have chains like Wild oats market and Whole foods market. Some of the regular supermarkets now carry gluten free food too. It seems to be now mainstream and people are more aware of the condition now. As for suppliments, I take 2 multivitamins a day. You need to check the labels! Make sure they are gluten free! I also try to eat well balanced with friut veggies and proteins. I have actually lost about 5 lbs from not being on "Pasta/cereal overload", which used to be a main staple in my diet. So good luck and keep on searching. You will find plenty out there in books and on the web.

[clairew]

Hi,

Thank you for your reply. I will look for the books you have suggested they sound like they will really help too. I must admit i feel a little scared, i am trying really hard to get my diet sorted, but it is a little daunting. I will check for health food shop as well, i didnt think of that. Thanks for the tip about the supplements, i am off to check them now.

Claire

[mouse]

As far as the books. I understand from the oldsters on this forum that the gluten free bible has a lot of misinformation in it. Living Gluten free for Dummies is suppose to be wonderful. I have two here to loan out, but have not taken the time to read them. The writer of the last book is highly respected.

Now, I will welcome you to the forum. Keep in mind that it took your body a while to get this sick and it is going to take a while to get well.

You probably know this from already doing some research, but hopefully you are not toasting your gluten-free bread in your old toaster as the crumbs in there will continue to contaminate you. Check your lipsticks, etc. and anything that will get in your mouth.

It is not unusual for Celiacs to have to learn this all on there own. The doctors are mostly clueless and I suppose we should just be thankful that we finally have a diagnosis. Since you were just diagnosed a short while ago, your doctor is probably right that you are doing a good job and just keep learning. It all comes in time.

I hope you feel better soon, but the recovery time is different for each person. Good Luck.

[clairew]

WOW I didnt think about the toaster thing or lipsticks, thanks thats a great tip. I know what i will be doing tommorrow. Thanks I feel a little better. I really thought i was doing badly. Now a bit more at ease. You are so right, least i know what it is now and that means i can do something about. I think i have sort of lost the plot a bit, i sound like i have control but i am a bit of a mess. But i am determined to get there, it just feels like i'm climbing mount Everest at the moment lol.

Thanks Claire

[tarnalberry]

Welcome.

It really can be overwhelming at first. After all, you're kinda faced with a "forget everything you've ever known" sort of thing, if this is the first time you've heard of the condition. Things in the UK are a little different than in the US (better, in some ways, it seems, worse in others), but no matter what, it's just going to take some time to get the hang of the diet and change in life style, so go easy on yourself, knowing it will take some time. (I like to encourage people to start with whole, fresh, naturally gluten-free foods because the learning curve is steep and it's a lot to go through at once.)

As for feeling better - it will take time. How long? No one can say how long it will take *you* to feel better. Some people notice a significant change in two weeks, some are still recovering after six months. It depends on your body. And in the meantime, you can still get colds and infections and everything else than anyone else gets unrelated to celiac.

You're not a whiner! It takes time to see changes, and it's hard to be patient enough to see the changes that we're looking for. A week is hardly any time at all for your intestines to start recovering enough that they can absorb significant amounts of nutrients to make you feel better. You might feel better, though, if you have a goal to work towards, and I would suggest seeing if you can get retested for your iron/b-12 levels in five more weeks (after supplementing for six weeks) so you can see, objectively, if your blood levels are going anywhere. (maybe your doc already scheduled a followup for you?)

[Rusla]

Welcome Claire,

Being anemic is part of this fun stuff. Hopefully your doctor has given you some sublingual b-12 or some shots. Now as for bones aching, could be arthritis, have they explored that yet? Or perhaps fibromyalgia which is not bones hurting but sure can feel that way.

[clairew]

Thanks for the support. It is really nice to speak to people that really know what you are talking about. I have been given b12 for my anemia for about a week. I have a follow up tests on the 6th of november. So fingers crossed there will be an improvement. Thanks for the comments on the bone pain. My doctor wont look at arthritis as im too young and he said the symtoms have come on too quick. I tried to explain i have had this for nearly 2 years just no where near this bad. But i will ask him to look into arthritis and fibromyagia. Oh it is so nice to speak to people that really know their stuff. I have not really had any of this stuff said to me before, so thanks again.

Claire

[Ursa Major]

Hi Claire, and welcome to this board. It sounds like you're doing fine. Too bad we all have to figure out things on our own, but it can be done.

Yes, buying a new toaster is a must. If you're using a plastic colander for pasta, you need a new one, too, as even in the dishwasher it won't get clean enough (glue is often made from gluten, hence the name 'glue', and really sticks to things). You also will need to replace any scratched non-stick cookware, wooden cutting boards, and wooden cooking spoons.

Also, you need to check all your personal care items, and replace the ones containing gluten. That includes shampoo, conditioner, lotion, soap, lipstick, makeup, chapstick, toothpaste, bath oil etc. Look for wheat germ oil, barley extract, oat bran, and often vitamin E is made from wheat germ oil, too. They can also hide behind their latin names. Like 'Triticum Vulgare (wheat), Avena Sativa (oats), Hordeum Distichon (barley), Secale Cereale (rye), and in case you can't tolerate soy, the one for soy is Clycine Soja.

The reason for eliminating those personal care products is, that somehow you'll get some into your mouth. By touching your hair, if it's shampoo, washing your hands, putting lotion on, etc., and then eating with the gluten on your hands. Or eating some of your lipstick (you can't help that).

Many here have had relief from muscle and joint pain, or bone pain, as well as neuropathy etc. by going gluten-free. I used to have unbearable back pain, which started going away the day after going gluten-free. It was like a miracle.

So, give it some time, make sure you eliminate all gluten, get plenty of rest to help your body heal, and you might be surprised how much better you'll feel soon.

Now, it is a good idea for ALL people with celiac disease to initially eliminate all dairy as well. The tips of the villi produce the enzyme needed to digest dairy. Since your biopsy showed that your villi don't have those tips right now, you are not going to be able to digest dairy products. Many people with celiac disease can eventually have dairy again (after six months to a year), but a lot of us are intolerant to casein and have to be dairy free for life, as well as gluten-free.

Did you have a bone scan done, or has your doctor ordered one? All people diagnosed with celiac disease need to have a bone scan done, as even children with celiac disease can already have osteoporosis, due to malabsorption of essential nutrients. Unfortunately, not all doctors know this, I had to ask for it myself.

Anyway, I hope that you'll feel better soon. And before you look into arthritis and fibro, give it some time to see if the symptoms won't go away on their own.

[clairew]

Hi,

I havent had a bone scan yet, but my doctor has just refered me, so i should get one soon. He did say that it might go away on its own. I hope so. He said he is going to wait for the bone scan first then lokkinto other things if that comes back clear.

Thanks for all the advice i will kepp you all updated as to how things go.

Claire

[kasia]

Hi Claire,

I'm Kate & also from the UK & was diagnosed by biopsy on Tuesday, so also really new to this. I totally agree with you re the lack of advice from doctors etc - thank goodness for the internet & especially this board or I'd still inadvertently be eating gluten every day!

I actually went gluten free 2 weeks ago tomorrow. I had found this board & my symptoms were so similar & everyone so encouraging that I though I'd give it a try. Although I did have a really rough patch about 4 days in (probably had some accidental gluten) I am feeling soooo much better. It's absolutely amazing. Even the chronic fatigue is lifting. I don't have bone pain, but it feels I have friction in all my joints when I extend say my arm, it feels all the bones are grinding. I too have been booked in for a bone density test, but who knows when that will be? However my joints do seem to be easing a little.

I've also given up dairy as I found I was vomiting after milk & butter so now drink soya & i've booked into my local homeopathy shop to get some intolerance testing done too. I feel that my digestion is so erractic at the moment that I'd like to check if anything else is not helping .

On a postive note I'm feeling so much better that today I may venture to Sainsburys & check out their gluten free range. I may even get a gluten-free beer to celebrate when I get back to 8 stone again (went from 8 stone 8 to 7 stone 7 in about 4 weeks!). I may even fancy one by then!

I really hope you feel so much better soon & that your bone pain starts to ease. Good luck with your GP

Kate

Oh & did you join coeliac UK yet. Apparenlty they will send out a food & drink directory. I'm waiting for mine to arrive soon......

Kate

[clairew]

Hi Kate,

Nice to meet you. I must admit this site and the internet have been a life saver for me. My doctors not horrible just a little clueless. Go to sainsburys they have the best range of gluten free stuff i have ever seen and the staff are really helpful. I went to other supermarkets and they didnt not have a lot. Sainsburys even sell gluten free burgers and sausages and chicken nuggets. God im so sad lol. Im hoping my pain is going to ease when i really get into my diet. You know what the waiting list for the nhs are like. But they are really good. Although i have found that the uk is not as clued up on this as the us people. I think my diet is taking a bit longer because my anemia is so bad, get that under control, and im sorted. I know what you mean about weight i went down to 6st 4lb, my doctors thought i had anoerexia, until my fella said how much i eat. My weight has gone up thank god. Sounds like you are getting it sorted mate well done. I have joined coeliac uk, i too am waiting for my stuff, sounds like it will be really useful. I havent given up dairy but my gp is starting to think i might need to. Homeopathy sounds like a good idea. The day im having a gluten free beer sounds very tempting. Oh forgot to say look on sainsburys internet site type in gluten free at the top right search box the have some seriously good stuff to buy, reciepes and downloads of all their products.

Take Care Mate.

Claire

[clairew]

Hi guys,

I hope you are all ok. I went for my doctors appointment today. My anemia has become a class a pain in the butt. I basically lost the plot at work on friday as i just couldnt pretend i was ok anymore. I was so exhausted i just sobbed. So the doctor today has said that my anemia is the cause. He is looking into giving me an iron infusion and b12 injections, he has said that i do have exhaustion and i am to rest for a while. So i have annual leave from wednesday, so i can rest up and restore myself a bit. My bone scan appointment should come through soon. Although the pain im getting he thinks is linked to my anemia. My diet is going ok. I have brought loads of books on celiac and gluten free cooking which i plan on some cooking from the books to see how i go, as i am a very bad cook, i can even burn water lol. I am even going to try to cook a christmas cake, that should be fun lol. I am going shopping at the end of the week, and by fiancee has finally, i think, started to come round to the idea that im ill and need support, and has even offered to take me, as he doesnt want me to do it on my own, as i am too exhausted. I am hoping that things will now start to improve with my health and my relationship.

Take Care.

Claire

[kasia]

Hi Claire,

Just wanted to say that I hope you start to feel a bit better soon. You poor old thing - it's no wonder you're feeling rotten if you're so anaemic, & as you say that could be what's causing the bone pain.

Hopefully you'll get your bone scan soon too which may also pick up some deficienices. I went & got allergy tested on Saturday which was interesting. Picked up wheat etc (what a surprise, but also cows milk & cheese & oranges, yeast & broccoli to name but a few!!). She also did a vitamin & mineral test & said that it's a good thing I'm off for the scan as I appear to be deficient in almost everything (especially quite a few of the 'bone' ones D,boron, calcium, sulphur, silicon, as well as vit A & .

Do take it really easy though, I can't believe how weak I am even 2 weeks in to a gluten-free diet (& I'm not anaemic). When I lost the weight I seemed to lose all my strength & now even climbing the stairs makes me tired.

Glad to hear your fiance is being supportive, I think it takes them a while to appreciate how poorly you've been, and good luck with the cooking and Christmas cake........ I just bought a Christmas pudding on offer from Tesco online - I must find out how to make brandy sauce now!

Take care & take things easy

Kate

x

[Jestgar]

I don't have bone pain, but it feels I have friction in all my joints when I extend say my arm, it feels all the bones are grinding.

Hi Kate,

I find that taking some ibuprofen (or aspirin) at night when I go to bed makes all my joints feel fluid the next day.

Try taking one ibuprofen with lots of water (or even 1/2 of one) or 2 baby aspirin with lots of water. If you eat early, try taking them an hour after you eat so there is some food in your stomach to protect you.

[happy4dolphins]

HI, I have really enjoyed the gluten-free books by Bette Hagman. She has about the best flour recipee that I"ve tasted yet. She has written many a books. I highly reccomend them.

Nicole

[nikki-uk]

Claire and Kate ,just wanted to say hi as I'm in the UK!

I'm not a coeliac but my hubby is (diagnosed 2 yrs ago) and my son was diagnosed last week!

You've got lots of good advise already. but would like to add that it's really worth joining Coeliac Uk for the handbook of safe foods. I found it very helpful in the early days of hubby's diagnosis ( especially when he disccovered Galaxy bars were okay!!)

Also are you aware you are entitled to some prescription foods from your G.P? (All prescription foods are listed in the front of the CUK handbook)

You can contact any of these companies and ask for some samples if you're not sure what to get (The best bread my hubby has had is Glutafin Fresh Bread or Juvela Fresh Bread).

My hubby found after going gluten-free that he couldn't tolerate milk (or lactose).

This was however temporary and lasted around 3 months. Temporary lactose intolerance is very common in newly dx'd coeliacs.

Hubby found that he could still tolerate hard cheeses (cheddar) and yoghurt as these are low in lactose.

Regarding supermarkets I tend to get different things from different supermarkets.

Tesco's Free From range is quite good (yes and their xmas pudding is quite nice!) as well as their gluten-free pitta breads and hot cross buns.

I find Sainsbury's better for getting bits for my son as their crisps are in loads of flavours are ok and obviously their gluten-free freezer bits (chicken nuggets,fish fingers etc)

Asda do quite a nice gluten-free beer in their Free From section (although works out quite dear so is an occasional treat for hubby! .He now drinks Bacardi Breezer if we are out)

Morissons also have a Free From which is ok.

Hope both of you start to feel better soon and that your bone pain and aches ease.

Aching bones was my son's biggest symptom that he complained of but as he's only been gluten-free a week it's too early to tell if it's gone away.

Unfortunately my hubby was dx'd with Osteoporosis this year by a dexa scan but his docs feel it wasn't too bad. .He also takes a prescribed Calcium supplement, along with Folic acid and Ferrous Sulphate.

If you need any more 'UK' info feel free to PM me

[Deb O (UK)]

Hi, like Nikki I just want to say 'Hi and welcome' to Claire and Kate too ~ I live in the Midlands, Uk and have only recently become gluten-free (since end August). Although sticking to the diet has been much easier than I'd anticipated I've found it hard not to get glutened by mistake, despite reading numerous warnings on the board I had also been naive (or in denial) thinking that I'd feel much, much better by now - I do feel better in that I don't have D anymore and most often there's no urgency to rush to the bathroom, but I still feel really bloated and still have waves of exhaustion. I know that I need to cut out dairy, but I just can't face that at the moment. I've got an appointment with a gastroenterologist (spelling?!) in late Nov so I'll wait til then before I make any more changes.

Best wishes to everyone

Deb

Oh ~ the shortbread biscuits in Sainsbury's, the Dietary Specials brand, are delicious!!

[nikki-uk]

HI Deb

When hubby went gluten-free we had high hopes indeed as he was desperately ill when finally dx.

He was more than a little disappointed when after a couple of months he didn't feel any better,and I believe he had actually had coeliac all his life (dx at 40 yrs) so there was alot of damage to undo.

Progress was slow,but bit by bit he felt better. I suppose it took a while for the damage to get there- so it was going to take a while to right itself.

Everyone heals at a different rate - but for my hubby it took longer before he felt any benefit.

Now- after 2 yrs gluten-free he has come a long way, much, much better than he was

I suppose what I'm trying to say is be patient and hang in there!!

BTW,meant to mention that Aldi supermarket in UK is very good for clearly marking their foods as gluten-free and they do some really nice bits.

Good luck with your appointment!