Am I Celiac?

[invi]

Hi, everyone,

I'm new, obviously, and my name's Lisa. I've had a hell of a time over the last 2 years, and like most people in this area of the forum, I'm trying to discover if my symptoms are celiac disease or not. I'm very desperate and very depressed, so hopefully you can bear with me while I summarise what's been happening. I've looked around the board and you all seem like very friendly, helpful people, so I'll try not to bore you too much I'm aware that no-one here can replace a doctor's advice, but I've not had too much luck with them at all, so I'm asking your advice.

2 years ago I had a minor bladder operation, and not long after, I developed something like diarrhoea - loose bowels, which gradually increased in frequency until I was going to the bathroom 3 or 4 times a day. Then after a while I noticed I was losing weight, I had a decreased appetite, although I was hungry after every meal, and I found it difficult to concentrate or remember things. I thought I was losing my mind, and had a minor breakdown, for which I was put on anti-depressants. Despite telling my doctor I thought there was something physically wrong with me, he said no, until I mentioned the loose bowels. Then I was sent to a gastroenterologist (sp?) who tested me for several things, including Celiac Disease, and found nothing. He told me basically that I'd have to live with it, and fobbed me off onto someone else. In the meantime, I'm still losing weight, my appetite comes and goes, and I'm still having loose bowel movements.

I was put on an exclusion diet by my dietician, and my symptoms settled down a bit - the frequency of the bowel movements decreased to about 1 a day or less, although they were still pretty loose and bulky (excuse the disgusting detail, please). I gradually reintroduced foods, and I seemed to have no major continuing reaction to anything except rye, barley, and wheat (not oats, though). Seemed to be celiac disease. So I'm now on a gluten-free diet, except that for the last three weeks my stomach has been really bad, bubbly, upset, bad bowel movements. I'm pretty sure there's no cross-contamination or anything, but I don't know if I've caught something, or if this means it's not celiac disease ...

I've made an appointment with a private GP, gonna lay it all out for her, as the NHS won't help me. I guess I just want opinions ... is it possible for celiac disease to be difficult to diagnose through colonoscopy? Do my symptoms match any of yours? Any other thoughts as to why my stomach might be freaking out?

Anything you want to say will be appreciated. I'm really at the end of my rope, and with the weight loss and all I'm scared I won't be alive much longer.

... ending on a cheerful note,

Lis

[Jnkmnky]

Gluten can be in many things you're not aware of. Are you 100% sure you're gluten free? If there's a tiny amount of gluten finding it's way into your diet, you'll have full blown reactions if you have Celiac Disease.

How long have you been gluten free...or trying to be gluten free? Test results can be inaccurate if you're gluten free for too long. You need to have the gluten in your body to get proper testing done. Your doctors should have known that and NOT put you on any special diets before testing.

I would say your symptoms point to C.D. I would also say, you sound like you've glutened yourself and are seeing the results of having ingested small amounts of unknown gluten. If I had your symptoms, I wouldn't eat gluten for an extended period of time to prove I have Celiac Disease. Your symptoms sound too severe. You can try the testing to see if you come up postive since you may be getting small amounts of gluten that are currently making you sick. You may get negative results. However, after the blood tests, you can initiate a strict gluten free diet....no mistakes, and see if you improve enough for a Self-diagnosis. Many do this. Good luck.

[watkinson]

HI Lis,

I'm very sorry you have had to endure such physical problems and doctors that don't seem to help. Most of the people on this board including myself have experienced the same thing.

Celiacs disease is a difficlut thing. There are more than 200 symptoms that can be experienced. Some people have some, while others have many, some not so bad, some severe and life debilitating. Your symptoms sound very much like a traditional celiac.

You asked about getting a diagnosis by way of a colonoscopy. No. They need to do a biopsy of the small intestine, as the damage to the villi, can mostly only be seen micrcroscopically. You aslo need to presently be eating gluten for a blood test to be accurate. You see, Celiacs is an autoimmune disease. Our immune systems are screwed up. Our antibodies think gluten is poison, and they set out to "kill" the gluten, the problem is they also think our bodies healthy cells are the same protein as gluten and set out to "kill" them too. Causing a miriad of health problems and issues. If you are not on a diet that includes gluten the antibodies may not be present, giving you a false negative blood test.

Some people react to the gluten-free diet by having gluten withdrawals. this may be why your stomache is freaking out. Also, be sure to look around on this site for the safe and forbidden foods lists. You may be accidentally getting gluten and not know it. You need to look at salad dressings, ice cream, cereals, even your lotions, makeup, medications, ect. Gluten can be hidden in everything. But it is easy to manage once you find out what you can and cannot eat.

Have heart, get the correct tests, or maybe you will decide that if you feel better being gluten free, that that is enough, and you can decide not to get the tests. It's always better to go through your doctor, but if you are not happy with them you can get a different doctor or just decide no tests and go gluten-free on your own.

Good luck, wendy

[KaitiUSA]

If you are celiac as stated before, any little bit will cause reactions. Have you checked shampoos/lotions/makeups and all that stuff?

It also takes time on the gluten-free diet to heal so do not expect a change really soon. It took me 8 months to get back to normal.

There are many symptoms with celiac so thats not really a way to tell. You do have some of them but everyone has different symptoms and some get no symptoms at all.

If you are gluten free at testing then your results are worthless. You need to be on gluten for a good 3 months.

Have you been seeing any improvement? How long have you tried to be on the diet? Have you looked to see what all gluten can be hidden in?

Hope you feel better soon

[invi]

Thanks for replying, guys

I've been gluten-free for about 5 weeks, and for the last 3 have been ill. It started after I think I gave myself gluten-free contamination from a prawn salad with mayo. But surely the effects would have gone by now?

Plus being on the exclusion diet, I was gluten-free free for about 2 months, and am still gluten-free free (as far as I know). Maybe I just have a bug ...

Edit: Does anyone know what a "Celiac Registration Number" on foods mean? Does it mean the food is gluten-free or not?

[KaitiUSA]

My reactions last quite a while. Besides that if you are not completely gluten free then you will continue to feel bad. Are all of your products gluten free too? I know I was usuing lip balm a while bad and it had vitamin e derived from wheat that was giving me a reaction so it is important to check every angle.

Also, 5 weeks to feel better would be lucky. You should give it time. Everyone varies with the time it takes for symptoms to go away. It depends on age, damage done, etc

[invi]

I suppose I'm just eager for change, and I'm afraid I've got it wrong, that it's not celiac disease. Plus to be going good and then feel awful for 3 weeks doesn't make too much sense for me, because it's not usual. My mom is ill as well, so maybe I gave her whatever bug I've currently got. Suppose I'll just wait it out, see what happens.