Completely Confused About Diagnosis

[RacheyK]

Hi all,

A bit new to all this but just wanted some advice.

I thought I'd start with my symptoms first... Been off and on for the last 20 years (when I was diagnosed with chronic fatigue)

- tiredness and fatigue despite lots of sleep

- wooly feeling head

- diarrhoea gloating and stomach cramps

- severe lower back pain in the mornings relieved by passing wind

- muscle aches and pains

- wheezy chest

- swollen lymph nodes

- frequent headaches

Finally after much nagging by my friend and multiple tests from the doctors I went gluten free - within weeks of going off gluten all my symptoms had resolved and I was feeling great.... So much so that people were commenting on how much better I looked and asking if I'd lost weight (which I hadn't just so much less bloated).

I decided that I really needed diagnosis so, after many arguments with partner who begged me to stay of gluten as he couldn't bear me being I'll again, I decided to go back on gluten . I only managed to do 1 week as soon enough the diarrhoea, tiredness and nausea in the morning came back - along with back pain so bad it was waking me up at 5am (which again resolved with passing wind).

I spoke to the doctor who assured me that a week was enough so I duly got the blood test done..... It came back negative and to be honest I'm gutted.

I've been off gluten agin for about 6 weeks and feel reLly good - still have the occasional set back - I had bloating and diarrhoea after a barbecue (I was eating gluten free but found out later that my food had been cooked on the same grill as gluten sausages and other gluten stuff) and also after eating a dorito without checking the label d'oh.

I'm so confused with my results as I really felt like I'd found the solution and am worried that when I get symptoms after contamination it's all in my head. My partner has made it clear that he does not want me to go back on gluten and can't understand why I feel I need a diagnosis - he says it's so blatantly obvious to him it's not worth even testing. I am worried that if I even try to go back on gluten for longer I'll feel rubbish again and my partner and I will end up arguing again.

I feel really pernickety when eating out or at friend's houses explaining about contamination and don't know if I'm just being neurotic. I'm due to see a specialist in a few weeks and am now dreading it in case he thinks it's all in my head.

Sorry for the long post - I'm just so fed up - I finally thought I'd put an end to years of suffering and now I feel like I'm back to square one and wish that I'd never even bothered with testing!

[ravenwoodglass]

Your not really back to square one. You eliminated gluten and felt better and you had a reoccurance of problems when you went back on it. Your body is trying to give you the answer. If you have been gluten free you need to go back on gluten for about 2 to 3 months for any chance of accurate testing. If you just can't do it for that long, realizing that you still have a chance of a false negative even after the challenge, then you don't need a doctors permission to be gluten free. You don't have to tell anyone you are 'self diagnosed' you just need to tell them that you can't eat gluten.

[Meg123]

I just wanted to say congratulations on your new found health after being so sick for so long, and well done for fidning the answer yourself and finally listening to your good and clever friend.

Good luck in staying gluten free.

[gluten free overseas]

Yes, the elimination diet IS scientific! I eat gluten, I feel like crap. I do not eat gluten, I feel great. I eat gluten again, I feel like crap... hmmmm... could this mean that I can't eat gluten??? I mean, seriously, give yourself permission to do what your body is telling you to do. I like to have a tangible paper with numbers, but for me... it was not an option, so I went with the elimination diet.

Btw, I had bone crushing pain up the spine, just like the worst colic you can ever imagine--so I feel you about the back pain. I know what that's like!

Some people order stool sample kits from medical labs--those are more accurate tests and you can already be on a gluten free diet. That's idea for you.

[RacheyK]

Thanks for the replies.....

I guess I just worry about what other people think - my best friend has been gluten free for many years and, as she tested negative, a lot of people don't take her symptoms seriously - including her own mum.

One mutual friend came to visit the other weekend - I ended up getting contaminated and was feeling rough the next day. He admitted to me that he had given our frien gluten sausages before as he felt it was all in her head.......he's promised he would never do that to me and was shocked how bad I was the day after being glutened and fortunately he could physically see that my stomach was almost doubled in size from the day before.

I'm just so paranoid about eating anywhere bar home as I don't want to have to get ill to prove to my friends that the tiniest bit of gluten will upset me.

A lot of my friends are scientists and I guess a positive blood test would have convinced them more ........

[ravenwoodglass]

Some people order stool sample kits from medical labs--those are more accurate tests and you can already be on a gluten free diet. That's idea for you.

There is a company called Enterolab here in the US that can do stool testing. They don't diagnose celiac but can tell you if your body is producing antibodies to gluten. You could contact them via their website to get more info. They can test after someone has been gluten-free up to a year so it is something you could think about doing if you don't want to go back to a full gluten diet.

[Skylark]

One mutual friend came to visit the other weekend - I ended up getting contaminated and was feeling rough the next day. He admitted to me that he had given our frien gluten sausages before as he felt it was all in her head.......he's promised he would never do that to me and was shocked how bad I was the day after being glutened and fortunately he could physically see that my stomach was almost doubled in size from the day before.

That "friend" is NOT a friend. Does he like to see if kids with peanut allergies go into anaphylaxis for kicks too? If I were you, I would distance myself from that abusive and dangerous person immediately.

Your real friends will listen to you and not be concerned about lab slips. The ones who don't are not friends and you shouldn't concern yourself with them. The only person who has ever questioned my diet is my mother, and it turned out that she is gluten-intolerant too. The rest of my friends simply accept the restriction, as it really doesn't concern them.

And by the way, I'm a scientist as are many of my friends and I was never tested for celiac. (Had to figure it out myself.)

[eatmeat4good]

You do not have to prove it to anyone but yourself.

Your boyfriend has watched you prove it to yourself several times.

Now you just have to believe it. He believes it and that is worth a lot.

If you get sick when you eat gluten and you are not sick when you don't then that is your diagnosis. You need to eat gluten free.

But if you don't, it will keep making you ill until you give yourself the "diagnosis".

I wish I had a boyfirend like yours.

He sounds really supportive and if he is willing to do all it will take to keep you safe and gluten free, then you have a lot going for you in that relationship. Take care of yourself...if not for you, then for him.