Hi, New, Pretty Much Given Up (long Post) Need Help!

[Andy-roo]

hi there,

My names andrew, ive been around for a while but never posted. So basically ive suspected a gluten intolerance/celiac for about 2 years now. It all started around half-way through year 12 when i got to lunch, ate my sandwich and started feeling incredibly ill, with no previous sympoms from eating bread. It was strange, but it was VERY uncomfortable. The best way i can describe it is eating as much food as i possibly can, then lying down (as if that isnt uncomfortable enough) and then having someone sit on my stomach. I feel like im going to throw up, thought never really nauseous, but very bloated and feel extremely full after a meal for about 5 hours where ill be hungry again. I either have hunger pains, or im so bloated i cant even talk because the movement of my diaphram makes me feel really uncomfortable.

So, i stayed home for about 2 weeks because my parents were like 'your probably just sick'. 2 weeks went by and nothing. 3 weeks, a month. Parents decide to take me to the doctor. My doc john (been our family doctor our whole lives) gave me maxolon to take, not as a cure, but to hold off the symptoms til we could find out what was wrong. Was all well and good but because i wasnt vomiting or really feeling 'nauseous' it didnt really change anything. When i told him that he put me on a strong antacid (i forget the name) and still nothing changed.

So john said he suspected it was some sort of immunoglobulin (sp?) problem so he apparently tested for that, id ont know what that means, but it all came back negative, he so referred me to a doctor who specifically diagnosed people for thing... i have NO idea what that is called. He told me gluten intolerance/celiac is extremely uncommon and i dont have it in my family, and it deosnt just 'spring up' like that all of a sudden. SO he ordered tests for my gall bladder, checked for kidney stones, pancreas tests, had ct scans (dont know why) had a barium meal... all of which showed that i was in tip top physical condition. I wasnt sick. Nothing wrong with me.

Meanwhile i had lost 10 kg (still which i havent put back on) i weigh anywhere between 45kg and 50 kg... but i dont know why that is because i eat about 8000 kj a day :S anyway ive never put that weight back on. SO he diagnostic doctor referred me to a gastroenterologist (sp?) and he messed around with my stomach for a bit and said nothing 'feels' wrong and warned me that an endoscopy is fairly invasive and might return nothing. At this point i had been consistently sick for about 2 months and had missed that much of my final year at school, and was many, many assessments behind, so i said lets do it. So he ordered a full gastro endoscopy and colonscopy and i got them. I remember coming off general anaesthetic and the gastro telling me that nothing was wrong with my gut at all, but it looked like there was a lot of bile in my stomach (i had nil to mouth for 24 hours) and a few blood spots here and there but nothing to worry about. That worried me a lot.

So basically my parents were finally convinced that it could be a food intolerance so we went to see a dietician. After being there for 5 minutes she sounded pretty positive i had a foood intolerance and gave me an elimination diet and said go on it for 6 weeks, if you dont start to feel better then its probably not a food intolerance, if you do feel better, start introducing things one at a time and see what affects you. So i did it, nothing changed in the 6 weeks. But guilt caught up with me, i had cost my parents so much money and time and worry i just told the nutritionist i felt better and id stay away from wheat. SO ive been living with the bloating and uncomfortableness for 2 years now andyeah it inhibits my life but i never want to go out any more, i have no energy, i never see my friends, i sit at home, or i go to work, for about 3 hours of a day or it kills me.

Ive lived with this for about 2 years but whats only started ringing home with me is that my girlfriend of a year and a half wants to start going out and is sick of being at home, and wants to go out to dinner, and partes and stuff like that but i jsut CANT do it, feeling so uncomfortable all the time. I can NEVER be in a car it makes me feel so bad. I guess what this is all leading to is, what the poop do i do? I KNOW its not normal coz i havent felt this way my whole life... I used to pride myself on having a strong stomach, nothing upset me... now theres nothing that doesnt upset me. Im infinitely happier with hunger pains than eating.

Is it possible that its still some kind of food intolerance? is it possible that there is something else that fits these symptoms? is it possible its as simple as a vitamin deficiency or something? someone PLEASE help me, every doctor i saw pretty much used all the ideas they had and passed me off to someone else and it got to the point where i jsut gave up, but i NEED to get my life back on track. What could this be?

[CarlaB]

Welcome, and I'm sorry you're feeling so bad.

Did they do a celiac panel (blood test)? When they did the endoscopy, did they do biopsies to check for celiac?

Your doctor is wrong. Celiac is NOT rare and OFTEN comes on suddenly after stress or an illness.

Have you tried eating gluten-free? If so, did you feel any better? gluten-free is much more than "wheat-free" and there's so much hidden gluten to worry about as well, so when I ask if you tried gluten-free, were you sure you were 100% gluten-free? Did you also eliminate dairy? Dairy often bothers newly diagnosed celiacs until their intestine heals.

Being a parent, I have to say, we don't worry about what we spend on our kids to get them healthy, but we do get concerned when they lie ... you should fess up to your parents about what you did, that you lied because you felt bad they had spent so much on you and that you still don't feel better. They want to help you.

[gfgypsyqueen]

Hi, Not sure what you have. You can check and see if you are anemic. Anemia would make you too tired to move. The doc John can run a blood panel to look for anemia and malnutrician. If you are still losing weight but eating enough, many celiacs show up with malnutrician. I know you said you were off wheat, but have you checked everything to be sure you are 100% gluten-free now? Bath products, soaps, lotions, toothpaste, all foods and drinks?

I've used an herbalist/kinesiologist and I saw huge improvements in health and energy. The kinesiology is a muscle testing where they check to see if the herbs etc are good for your body and how much you should take. seems crazy at first, but I really love them. Add some vitamins and herbs to your diet might give you back the nutrients you are missing to get your energy up.

Another option is entero labs. They can do a check for a variety of food intolerances.

Hopefully more people will post with additional ideas. Feel better soon.

[Andy-roo]

yeah thanks for replying.

I actually went everything free for about 2 months and didnt even notice any slight difference in how i felt.

Now i feel the same no matter what i eat, nothing ahs changed since i first got sick, except maybe now i just handle it better. but ive never felt any better. And it was strictly EVERYTHING free. I didnt even eat anything with colouring in it. It was pretty much chicken, beef and stuff like that just meat.

But anyway does this even SOUND like a food intolerance? the symptoms i described i mean? Does it sound like anything else? im just so lost its like nobody can help me.

Ive also been gluten free for about 6 months now.

And yeah i double and tripple checked everything. I buy my own food at home and i have the theory that if i dont know, i wont eat it. I even check the labels on stuff that SAYS its gluten free.

[CarlaB]

So, tell us ALL your symptoms.

If you didn't get better AT ALL after 6 months entirely gluten-free and 2 months everything-free, it doesn't sound like a food intolerance to me. You should have seen improvement. Of course, some celiacs take longer to heal than six months.

List all your symptoms, even the minor ones, and maybe someone will have some suggestions on what else to consider.

[Andy-roo]

I get very gassy, from both ends, if i eat til im full, ill feel full for 4 or 5 hours, then all of a sudden hungry, get pains before i need to make a bowel movement, bloating and pressure on my stomach, all of this made worse if i lie down... and yeah thats it. It seems like the only relief from everything comes from burping, of which ill be doing 4 or 5 hours after ive eaten.

Im pretty sure its not IBS because its ALWAYS after i eat, regardless of what i eat, and through the elimination diet.

it makes me so frustrated i just want to cry. I have no idea whats going on.

[CarlaB]

Have you tried taking digestive enzymes and probiotics?

[mn farm gal]

It maybe that your body is just so low on some vitamins and minerals that you feel like your body never catches up to where it should be for energy and such. I had this same problems but add some more symptom also. I seen a naturalpathic doctor after going gluten free (about 2-3 months after starting gluten free) and she has helped me tromendously. So it could be food intolerences and malnutrion. It would be worth a try seeing a naturalpathic or kinsiology or a doctor on the lines of this if a regular doctor is not helping. I wish you luck.

[aikiducky]

I wonder if it could be some kind of a structural/functional problem where your stomach doesn't empty properly or works too slowly or something like that? Or that you lack some digestive enzymes or have too little stomach acid to digest properly? Did your doctors examine this kind of possibilities?

I agree with Carla that it if you've been gluten free for six months with no improvement that it would be at least worth it to look for other causes.

Pauliina