Not Diagnosed Yet...

[lostinlondon]

Hi everyone

I've been browsing the threads on this fantastic forum for the past hour, and I can't believe I've finally found a place where I feel normal!

I'm about to be tested to see if I'm intolerant to gluten, but from what my doctor has said (along with a friend who's been diagnosed), I'm a sufferer too. I was hoping that you guys could offer me some advice - and what you think of my story.

My mom - and my brother - both have IBS. I've always been reluctant to believe that I could have it too, but for the longest time I've had d, gas, and have had a bloated stomach. I've always just accepted that I have a sensitive stomach, that my system just digests quickly, and my swollen stomach has been swollen for so long I've come to think of it as normal.

I casually mentioned my symptoms to a friend who's been diagnosed, and she said that what I described sounded very much like what she had before she saw a doctor. I was a bit disbelieving at first, but agreed that I should give up wheat for a week or two to see if it made a difference.

After 3 days my stomach was as flat as a pancake, but I had awful, watery d, and felt weak and tired. So much so that I had some bread... and then bingo - my stomach felt as though I'd eaten barbed wire, and a week later it still feels incredibly painful. I'm fed up!

I saw my doctor last night and she's put me in touch with a nutritionist - and from there we can see what diagnosis we can make. I've not eaten wheat today, and my stomach is still sore, but I'm hoping it will get better in a few days...

What do you think? Do my symptoms sound like yours before you were diagnosed? And what about the d? Is this normal when you give up gluten?

Any advice would be so, so appreciated - I feel lonely and quite strung out about it. If I am intolerant to wheat I feel I can be positive about it, as I just want to feel better!

Thanks,

LostinLondon x

[nikki-uk]

Hi 'Lost in London'! (are you in London?)

It's quite possible you have coeliac disease with your symptoms and this is NOT the same as a wheat intolerance.

Coeliac disease is a gluten intolerance which involves not only Wheat but Barley, Rye, and Oats.

I would advise you (whilst you are still have gluten in your diet) to ask your gp for a Coeliac Disease blood screen (a nutritionalist will not be able to do these)

Although it is possible that you just have a wheat intolerance I think it would be best to rule out coeliac disease first.

You have to be eating gluten for this test - so probably best to have it now before you totally give up 'wheaty' things!!

Good Luck

[Danno]

Nikki is right, you might be getting gluten from things that you have yet to learn about if you're a new Celiac. The best advice is to not get upset, you'll know soon and if the test is positive, that's great news. You will know the enemy, and there's tons of good information and support out there.

Good luck-

Dan

[lostinlondon]

Thanks both for replying - I really appreciate it.

I've been careful not to eat anything with gluten since yesterday morning, and I'm already starting to feel a bit better. My tummy is still quite swollen, but it hurts less.

When you first gave up food with gluten in it did you suffer from diarrea? (sorry, can't spell that damn word!) This is my second attempt at doing a DIY exlusion diet (before I see the nutritionist on Monday evening), and again, I've had diarrea. Is this normal? Is there anything I can do to stop it?

Again, thanks so much for responding. x

PS - Yes, I live in London in the UK. Beautiful weather today, shame I'm stuck in the office!

[nikki-uk]

  lostinlondon said:

Thanks both for replying - I really appreciate it.

I've been careful not to eat anything with gluten since yesterday morning, and I'm already starting to feel a bit better. My tummy is still quite swollen, but it hurts less.

When you first gave up food with gluten in it did you suffer from diarrea? (sorry, can't spell that damn word!) This is my second attempt at doing a DIY exlusion diet (before I see the nutritionist on Monday evening), and again, I've had diarrea. Is this normal? Is there anything I can do to stop it?

Again, thanks so much for responding. x

PS - Yes, I live in London in the UK. Beautiful weather today, shame I'm stuck in the office!

Ok, I can only tell you my hubby's experience (and he's a coeliac - NOT wheat intolerant)

Coeliac disease destroys the lining of the small bowel, but it usuallly takes years before you actually get a diagnosis

When my hubby started the diet we was expecting immediate results - but sadly repairing damage by celiac disease takes a bit longer than a few days ..... the way it was explained to me was ''it took years for the damage to get there ...it's gonna take a while for to undo it''

Admittedly - some people do feel immensely better straight away on going gluten-free - but it's hugely variable.

It took my hubby a good 6 months to feel the benefit of the gluten-free diet (and the D to stop)

It is said that it can take up to 2 yrs for an adult to heal after a diagnosis of celiac disease - however - not sure about wheat intolerance.

Would you not want to know if it's celiac disease you're suffering from??( rather than wheat intolerance) as if you have celiac disease you would need follow up care and screening for Osteoporosis.

P.S Yes, great weather!!!

[lostinlondon]

  nikki-uk said:

Ok, I can only tell you my hubby's experience (and he's a coeliac - NOT wheat intolerant)

Coeliac disease destroys the lining of the small bowel, but it usuallly takes years before you actually get a diagnosis

When my hubby started the diet we was expecting immediate results - but sadly repairing damage by celiac disease takes a bit longer than a few days ..... the way it was explained to me was ''it took years for the damage to get there ...it's gonna take a while for to undo it''

Admittedly - some people do feel immensely better straight away on going gluten-free - but it's hugely variable.

It took my hubby a good 6 months to feel the benefit of the gluten-free diet (and the D to stop)

It is said that it can take up to 2 yrs for an adult to heal after a diagnosis of celiac disease - however - not sure about wheat intolerance.

Would you not want to know if it's celiac disease you're suffering from??( rather than wheat intolerance) as if you have celiac disease you would need follow up care and screening for Osteoporosis.

P.S Yes, great weather!!!

Yup, sun is shining and I feel crap!

I've been doing a bit more reading on celiac disease, and the symptoms do ring so true of how I've felt for years, although, of course, I can't say if I have it as I've not been tested yet.

The advice your husband was given sounds sensible - I definitely feel lighter and my stomach feels calmer if I don't eat anything with gluten in... shame about the diarrhoea!

My mother has osteoporosis, and I'm convinced she has celiacs and isn't aware of it. Obviously I want to get properly diagnosed as soon as possible, and then to follow a diet and anything else a nutritionist/my doctor recommends. For so long now I've felt awful - reading these forums has given me hope that although there are some challenging and difficult times ahead there is definitely light at the end of the tunnel. And that gives me hope.

[Murph]

No doubt that it could be celiac. (no S)

It'd be best if u could get the blood test ASAP, otherwise they'll need u to eat wheat/gluten (aka make yourself sick) for the test.

I'm very sure that just a few days w/out wheat, after a lifetime with, won't invalidate the test. Not so sure about a week or 2. Also, wheat-free is far from gluten-free - even some toothpastes have gluten!

[Nancym]

Word of warning, don't cut out the gluten before your testing, you may heal enough to become a false negative.

On the other hand... 30% of biopsy proven celiacs without complete villi atrophy have negative blood tests. So either way you might have a negative blood test and still have celiac disease.

[little d]

Hi and welcome

Yes I totally agree, I think that I have celiacs but I'm negative, but I respond really well on the diet, so get you test now don't wait, even if you have to tell your doctor that you a vomiting, having accidents everywhere you go, that is really bad and you are embarrist to go anywhere in fear that you will have an episode. That is a little extreme but if it works. I don't have a diagnoses because I was Gluten free for 3 months I think at the time and everything was false negative I was so sure everything was positive. But I guess that I have repaired everything enough for the biopsies to not show anything. I think 2 days after eating Gluten free I fealt so good with no symptoms. 3 week into my diet I thought something was wrong with me because. I didnt have any D or heartburn, stomachburn, nasuea, because It had become normal to me to feel so bad, which I didn't know that I felt bad until the diet, I even lost 14 pound sorry I don't know what that would be in kilos I think. But then I got the news from my Gastro doctor that everything was negative and started eating regular food again I think out of anger more than anything and felt bad again, So when I had my follow up visit with him, explained that I gained the weight back and all symptoms returned so then he sends me for the lovely PillCam which I never saw myself pass, it had been 7 months eating regular food I was sure that he would have seen something on that but no. So now Im on my own tring to feel better I have to remind myself all the time that I can't eat like everybody else and I have to eat to feel better, so I can have energy for my 7 year old who is full of energy. And I have ordered the Enterolab test and this will be my last of hopes that something will be found, but will have to wait until I come up with the full amount because my health care spending account I just found out this last week that I don't have enough in my account. But they do take money order (certified check)

Donna

[sfm]

  lostinlondon said:

Hi everyone

I've been browsing the threads on this fantastic forum for the past hour, and I can't believe I've finally found a place where I feel normal!

I'm about to be tested to see if I'm intolerant to gluten, but from what my doctor has said (along with a friend who's been diagnosed), I'm a sufferer too. I was hoping that you guys could offer me some advice - and what you think of my story.

My mom - and my brother - both have IBS. I've always been reluctant to believe that I could have it too, but for the longest time I've had d, gas, and have had a bloated stomach. I've always just accepted that I have a sensitive stomach, that my system just digests quickly, and my swollen stomach has been swollen for so long I've come to think of it as normal.

I casually mentioned my symptoms to a friend who's been diagnosed, and she said that what I described sounded very much like what she had before she saw a doctor. I was a bit disbelieving at first, but agreed that I should give up wheat for a week or two to see if it made a difference.

After 3 days my stomach was as flat as a pancake, but I had awful, watery d, and felt weak and tired. So much so that I had some bread... and then bingo - my stomach felt as though I'd eaten barbed wire, and a week later it still feels incredibly painful. I'm fed up!

I saw my doctor last night and she's put me in touch with a nutritionist - and from there we can see what diagnosis we can make. I've not eaten wheat today, and my stomach is still sore, but I'm hoping it will get better in a few days...

What do you think? Do my symptoms sound like yours before you were diagnosed? And what about the d? Is this normal when you give up gluten?

Any advice would be so, so appreciated - I feel lonely and quite strung out about it. If I am intolerant to wheat I feel I can be positive about it, as I just want to feel better!

Thanks,

LostinLondon x

Your symptoms sound very similar to mine. Please keep in mind that although you may feel somewhat better within a few days, it can take months before you feel totally normal. Continuing diarrhea is common; your intestines do not heal instantly. Finding a gluten free fiber supplement helped me with that.

My stomach is still sensitive to other things. Many gluten sensitive individuals find out, once they've eliminated gluten, that there are, unfortunately, other things to which they are intolerant. I also have a casein (milk protein) sensitivity, and most recently, have discovered a tree nut allergy which causes similar symptoms to gluten in me.

Also, concerning a diagnosis - you will learn that the tests used to confirm a diagnosis for celiac disease are imperfect. Many people on here are lacking a clear diagnosis, but learned (as you did) that their obvious dietary response was enough proof for them! So don't give up on being gluten free if it turns out that your tests come back negative. If a gluten free diet is helping you, then you are gluten sensitive, no matter what diagnosis you lack.

Good luck, I hope that you continue to feel better and better!

Sheryll

[lostinlondon]

Hello all

I spent a long time with my nutritionist today, who, after discussing my diet for a long time, thinks I am intolerant to wheat, and possibly also dairy. She doesn't think I'm intolerant to gluten, and is sure that I don't have celiac disease.

I've got a different journey ahead of me to all of you, but thanks so much for your advice and support - I really appreciate it.

[nikki-uk]

  lostinlondon said:

Hello all

I spent a long time with my nutritionist today, who, after discussing my diet for a long time, thinks I am intolerant to wheat, and possibly also dairy. She doesn't think I'm intolerant to gluten, and is sure that I don't have celiac disease.

I've got a different journey ahead of me to all of you, but thanks so much for your advice and support - I really appreciate it.

I'm curious - how can she be sure you don't have celiac disease ??