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Getting On The Right Track Is Hard

Ruthie73

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Ruthie73 Newbie
Ruthie73
Posted

I had positive blood tests last Sept and am awaiting biopsy results from begining Dec 08, and am trying SO hard to eat the right stuff and NOT eat gluten, although it's hidden everywhere! As I hadn't got a follow up appt for the results of the biopsy yet, I called this week to chase - The consultant I was under was a locum, and apparently had moved on, but the hospital had forgotten to transfer me back to the original head consultant, making it look like I was discharged! I've managed to get an appt for next month, but I feel a bit alone, as my GP doesn't really have a clue about coeliac and all he says is 'its such a shame'! and its like he wants me to have IBS instead(he gave me anti-spasmodics to help with this), which it isn't 'cause it clears when I don't have gluten. He doesn't seem to want to acknowledge that all my past symptoms are related to eachother and the gluten intollerance either, but I think they must be as when I look on here and other web sites, everyone is talking about the same things, like headaches, ichy weepy rashes, joint pain and persistant stomach and backpain. I've also always had weak teeth - another part of one just fell out last week without warning! My GP won't acknowledge this is linked either. My diet is a good and healthy one, and I don't eat a lot of sweets or sugar...(and yes, I do bruch twice a day!)

I realised I was unwell when i was having night horrors, and my stomach hurt all the time -I felt I needed the loo badly a lot of the time, but all i was passing was white discharge and wind. Very scary, as I'd never had anything like it. i was up every night with nausea and pain, was considering quiting my job as a PA (I thought I had lost my edge due to my fuzzy head) and had constant heartburn. I thought I was just getting old maybe. I'm 35, and have two children.

The Hospital consultant (when he was there!) was great - he asked me questions about symptoms I hadn't even connected to gluten intollerance, and said I was looking like a typical Coeliac - he was very surportive and light hearted about it, and made me feel very positive about my symptoms and future. Unfortunately my GP had advised me to eat low gluten before I had the consultant appt, and although I was feeling so much better (wow - I had forgoten whet it felt like!) I think that I may have recovered too much that it may have hindered the biopsy results. To be honest, I didn't feel that bad after 4 weeks of eating gluten, but by another two weeks AFTER the biopsy, even tho I was back on the gluten-free, I was as misserable as before, and in quite a lot of pain in my stomach. I did ask my GP if I could see a dietician to help put me in the right direction, but he said that it was best to wait till after the biopsy results as I'd have to eat gluten till then anyway.

Here I am now, still waiting, and trying so hard , but making too many mistakes, and when a mistake is made, it knocks you so far back its hard to get going again - its like it undoes all the effort you put in to get to feeling better again. i've found that the longer I'm Gluten free, the worse I react to the smallest amount when I make the next mistake. I've since read this is common. I know when I've had something, and will scour the house till i find the culprit (yeast that wasn't gluten-free in my home-made gluten-free bread / changed brand of Baked beans to one that had gluten / stock cube etc) - I just know its there somewhere, and only once i haven't managed to find it once it starts to niggle my insides...

I'm also begining to look a bit thin, and although I eat 'cause I know I have to so that isn't the issue, I think the lack of carbs through bread etc is kicking in a bit fast, and although it's nice to be slim, if I loose any more weight, i'm gonna go down under 9 stone very soon, and I'm 5'7", so not good. I'm a uk size 8.

Yesterday morning I woke at 7am (had a good nights sleep), but when I opened my eyes, the room was spinning - like when you've had a heavy night with alcohol, and your still very drunk! I had not had ANYthing to drink the day before (the last time was three days ago - two glasses of red wine, which I gave up on as it wasn't doing the trick - (something I think has also come with the Gluten intolerance - I either get completely paraletic on one glass, or nothing at all! )When I got up, I had really bad nausea linked from a pain quite low down just above my tummy button. When I tried to walk, it was like I was drunk - and although it wore off as the day went on, I kept bumping into things, and was very unsteady on my feet. I felt pretty poo all day, and am pretty sure that I had picked up some gluten somewhere over the last couple of days. I can't find what it could have been as I have been SO carefully recently, but I was aware had that tickling under my ribs and bloatedness that comes shortly after eating something contaminated since about Saturday eve,(we went to a wedding - the kitchen said the chicken and veg were gluten-free, but now I wonder) along with a shivery coldness followed with feeling hot, and a sort of low blood pressure feeling on Sunday and Monday. Then stomach cramping and diarrhoea on Tuesday pm, and then this druken dizzyness on Wednesday. My eyes felt all hot and sort of sunburnt, and I didn't trust myself at work as i know I'd make some really stupid mistake without realising, and I had absolutely no appetite or thirst... I shouldn't have gone in, but I've had quite a few days recently, and with all the redundancies, I want to keep in the good books. Today I feel tired and lack enthusiam, but the children are on half term, so I have to get on with it... (I work P/T - three days)

I'm interested about the B12 thing that seems to be common advice, as I've always avoided these as they tend to bring me out in cold sores, but if its a neuro issue, I want to help myself make it right. Eating out just seems a minefield. Socially it's really inhibiting, and I can see myself becoming a recluse!

I felt really tearful too yesterday which I'm not normally, and today too if anyone asks me how I am :(

i'm so fed up making these mistakes, and although the whole family are very supportive (my husband is a gem and takes it more seriously than i do! ) I don't know how to go about getting this right for the future.

I'm worried that if my biopsy results come back negative that i'll be put down as a crackpot seeking attention or something, which really couldn't be further from the truth (I hope!) i keep thinking that if I'd never gone gluten-free then I wouldn't be reacting so badly now when I have a tiny bit. Does anyone feel the same? If anyone could give some advice on how to be assertive with my consultant and GP and what I need to be asking for I'd be really grateful. Most of the time I can be strong, but like today when I'm sore inside and tired, I just feel mostly a bit weepy and worn-out feeling, and that's not a good look in front of the GP who'll probably just offer prozac or some easy potion, and I don't. My life, appart from this little blip, is good.

Reading about other peoples experiences, I'm hoping this all normal, but I think I need some support to keep it all going and keep well once I get back there.

Sorry if I've wittered on. I think it must of all built up!

x

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GFinDC Veteran
GFinDC
Posted

Hi Ruthie,

I hope you feel better soon! I don't eat out at restaraunts very often anymore. The last time was at New years when I was visiting family out of state. Really it is a crap shoot eating out at any restaraunt. The ones that have dedicated gluten-free menus are probably a good bet, but any others are not. Unless the staff is trained on how to prepare gluten-free foods and avoid cross contamination, there is no way to avoid it generally. When I do eat out I take Biocor DPP-iv that helps with digesting small, small amounts of cross contamination only.

I found that I became much more sensitive to gluten after I went on the gluten-free diet. Or at least apparently more sensitive. It only takes a small tad to get my system upset. Of course I was so sick all the time before that I am not sure I Would have noticed a freight train hitting me.

My current way of dealing with it is to make all my food at home from whole foods, not packaged products. I try to only add things to my diet 1 or 2 food items at a time so I can more easily identify things that cause me to react. I really think it makes life simpler for us to get away from most processed/package food items. Certainly in the beginning it is easier than trying to interpret lots of food lables wiht odd sounding chemicals and ingredients in them.

As far as communicating with your Dr goes, I suggest you write down your symptoms before hand. Let him/her read the symptoms you have written down. I would tend to forget to tell my doc about some problems/symptoms if I didn't do this.

Getting started on gluten-free is kind of tough for some people, and I definitely found it challenging. But over time you can learn to eat better and can feel better too. The nice thing about celiac is that you can improve your health just by changing what you eat.

It is nice to get test results and all, but the main thing is to feel better. If your Dr tests say you don't have celiac but you feel better not eating gluten, than is makes sense to go with your own diet results instead of the Dr test results. It really is a 100% gluten-free diet that makes the difference for people. Your immune system is pretty serious about protecting you against unwelcome germs etc and can get eal aggressive over even the tiniest amounts of stuff. If it didn't we would all be in bad shape from infections and so on.

Hang in there and check out the threads on this site, lots of good info here.

Ruthie73 Newbie
Ruthie73
Posted
  • Author

thanks for the tip about Biocor DPP-iv - I'm already looking into more about it (I'm learning to read EVERY lable of anything that goes into my mouth!) and will try and get some to see if it helps when going out to avoid any further accidents.

We are quite good at home with regards cooking, but you are right about home cooking everything from scratch. I've stocked up on gluten-free flours and ingredients and herds and spices to make things taste interesting, so am thinking the whole family will eat better overall as a result. I noticed that you have sulphite sensitivity too - I have suspected sulphites as not agreeing with me too as they keep flagging up on stuff when I don't feel too good again, so am going to look into those more as well. Its crazy to see how much rubbish food companies add to our food and we just stop noticing for convenience sake.

I was worried about having the biopsy originaly as I had stopped eating gluten and felt way better, and almost begged the consultant not to make me do it(eat gluten for the biopsy), and I did think it was only to get a 'tag' as being certified coeliac, and you are right - as long as one is feeling better, that is the most important thing, although I also feel that I'm having to be 110% gluten-free to keep well! It seems too that there isn't a lot of practical help around here until you have that tag, but I have to say there is so much info on here, and experiences being talked about that is really helpful and makes you feel less alone.

thanks so much for the advice and encouragement.

Ruthie

GFinDC Veteran
GFinDC
Posted

Hi Ruthie,

I think I have read that in England the Govt reimburses people for the costs of special gluten-free foods there, if they have a diagnosis. So if by chance that's where you are that could be a reason to consider the biopsy. Although I am not sure that's a requirement for it. The blood tests are supposed to be pretty reliable for positive results, but not so reliable for negative results. So a negative might be wrong, but a positive isn't very often wrong. This article talks about the various tests and might help your doc get more familiar with testing issues.

https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome Ruthie!

You are not crazy. You are not a crackpot. Most of us would like to give your doctor a good sock in the face for trying to convince you otherwise.

Whether or not you have celiac disease, you obviously have a major problem with gluten.

It sounds like you are on the right track, and are starting to get accustomed to the whole label-reading thing. Now that you have had all your tests, you do not need to eat gluten. Ever again. Unless for some reason you really want to.

If you look up Irishdaveyboy on this site, he has a multitude of delicious recipes and helpful hints for those in the UK.

Ruthie73 Newbie
Ruthie73
Posted
  • Author
Welcome Ruthie!

You are not crazy. You are not a crackpot. Most of us would like to give your doctor a good sock in the face for trying to convince you otherwise.

Whether or not you have celiac disease, you obviously have a major problem with gluten.

It sounds like you are on the right track, and are starting to get accustomed to the whole label-reading thing. Now that you have had all your tests, you do not need to eat gluten. Ever again. Unless for some reason you really want to.

If you look up Irishdaveyboy on this site, he has a multitude of delicious recipes and helpful hints for those in the UK.

lol - no, there's absolutely no reason that I'd ever eating gluten again! (not intentionaly anyway!) I'm checking out the recipes now. thanks for the urport

x

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