44 replies to this topic

[jb1119]

I'm a 24m and have been having gastrointestinal problems for about 8 years or so. I've been tested for almost everything under the sun (endoscopy, colonoscopy, barium swallow, stomach biopsy, heidelberg test etc.) and they can't find anything. Every test comes back normal and I'm so desperate to figure this out and turn my life around.

My symptoms are as follows:
- upper left side abdominal pain
- exhausted feeling all the time
- sharp chest pain at times
- shortness of breath
- bloating & gas after eating
- very deep burping
- have to eat very slowly (1-2 hrs for a normal meal)
- some constipation
- can't gain weight and never have been able to
- pale skin & ridges in finger nails

I had a stomach biopsy 4 or 5 years ago but it came back borderline and the doc said I was just gluten sensitive and diagnosed me with IBS. I've been reading a bit about latent celiac and trying to figure out if celiac might really be the culprit. I just can't seem to find anything else it might be. Last week I was tested for pernicious anemia but you guessed it, the test came back normal. I'm really skinny and look anemic but all of the levels are normal.

Thank you so much in advance for any help you can provide!

[Lisa]

Welcome!

The best diagnosis is a positive dietary response. Since your tests (but not knowing exactly what tests they were) were boarderline, try the diet and see if you feel better. Your symptoms certainly could reflect Celiac or a gluten intolerance.

Take some time to read around this site. There's some great information.

[ravenwoodglass]

I had a stomach biopsy 4 or 5 years ago but it came back borderline and the doc said I was just gluten sensitive and diagnosed me with IBS.

Your doctor certainly didn't do you any favors. I can't write the words I want to use to describe this guy. You are celiac. Your doctor biopsied you and found that you were in the early stages. Instead of telling you to stop eating gluten and giving you a diagnosis this guy wanted you to be in the end stages of the disease before he would diagnose. I would be willing to bet he also told you that you could come back and be rebiopsied at a later date when your symptoms became worse. I bet he also gave you a handful of scripts.
You need to get on the diet, and follow it strictly. You don't 'have' IBS, IBS is not a diagnosis it is a symptom, you have celiac.

[meg2]

Hi jb1119,
I'm new here too and working on getting to the bottom of (mild) symptoms. But I'm curious to know more about your upper left abdominal pain. I have something like that, too. It first started when I was in my early 20's. I went to the doctor, who looked at me funny and eventually diagnosed me with IBS and gave me a prescription (which I didn't take). Long and short - I was told it was musculoskeletal. (Sore muscles or a pulled something or somesuch, I assumed) So lately I've been wondering if it isn't something to do with my tummy troubles.

Anyway, what does yours feel like?? And where is it? Anyone else have this symptom?

Thanks - hope you're soon feeling better.

[Mrs. N]

HI

I had ( and still get) left side pain. The pain is in the upper left side under my ribs and is like a gnawing feeling and quite severe sometimes.

I was diagnosed last year with coeliac but had been having this pain for about 20 years and had initially been told I had IBS.

On the days that I get this pain I often have terrible night sweats and an upset stomach the next day. It leaves me feeling very tired and "not quite there".

I don't know what that is either, but wanted say that I've gotten that upper left side pain also. The first time it happened, it was like a horizontal lightning strike. I could hardly breathe for a few seconds.

[fbrown9]

HI

I had ( and still get) left side pain. The pain is in the upper left side under my ribs and is like a gnawing feeling and quite severe sometimes.

I was diagnosed last year with coeliac but had been having this pain for about 20 years and had initially been told I had IBS.

On the days that I get this pain I often have terrible night sweats and an upset stomach the next day. It leaves me feeling very tired and "not quite there".

I just wanted to say that I have that same left side (right under the rib cage) abdominal pain. I have had it for four years now and the first time I had it, It was also a really sharp pain that made it hard to breath or even move. I went to the ER and they said that it was just gas after testing my appendix. Since then I have had gas, that same sharp pain in my left abdominal, anywhere from diarrhea to constipation changing weekly. The doctors diagnosed me with IBS, but the medicine doesn't help, so I don't take it. I have also been diagnosed with a Hypo Thyroid and then three yrs later undiagnosed and given a diagnosis of Polycystic Ovarian Syndrome. I am at a loss of what to do. I am 23 and can't get a doctor to take me seriously. Any suggestions would be much appreciated. Thanks.

[Bell]

It's probably not useful, but I get the pain too. I'd always thought it was gas, but it's very sharp, and in both my chest and abdomen at the same moment. I get it sometimes all of a sudden when I bend over. Your symptoms must make you feel really worn down by them. I can't believe you've had no luck with your doctor. Maybe have a look at who else is available near you - I think there is a section here somewhere. I have realised that I need to do the same thing! My doctor said I couldn't be celiac because of the colour of my eyes!

Regarding needing to eat slowly - Is it that the chewing helps the digestion process? If so, have you tried digestive enzymes? I take these when I eat a lot of veggies, and they really help. I also found they really sharpened my appetite!

Good luck to you,
Bell

[debmidge]

to those with upper pain - is it on front or back of torso?

Does it wrap around to your back?

Does it go away if you burp?

Do you find it comes on after eating a meal which is high fat? (assuming you
are eating gluten free)


During times when you have this pain are you experiencing constipation or diarrhea?

You can send me a private message if you do not wish to proceed on public forum....I am not a medical
person but I have these issues myself.

[SGWhiskers]

Have you talked to your doctor about the chest pain? While considering Celiac, I would also want to make sure the doctor was certain the chest pain wasn't related to heart problems. That being said, I had mild, but sharp, left sided chest stabs a few days a month when I inhaled a little deeper than normal. It didn't FEEL like my heart or my ribs. It felt like it was immediately inside my ribs. I have not had that in my 9 weeks gluten-free.

Did you have a stomach biopsy, or an upper intestine biopsy (EGD)?

[QueenOfPain]

Hello! I'm new here, too. I'm still not 100% sure if I have Celiac, but I'm trying the diet out to see if it helps my crazy symptoms I've been plagued with for years. I've been gluten free for 2 months now. Just wanted to let you know that I've also had that same terrible pain on my left side. I've been dealing with it for almost 19 years now. Mine feels like someone is grabbing my side with their hand. Their thumb is in my back and their other fingers wrap around to my front. AND it feels like they are squeezing so hard they are trying to make their thumb and fingers touch through me. Make any sense? That's the best way I can describe it. It's a very intense pain. I've noticed that it happens when I'm overly tired, stressed, and sometimes directly after eating. However, if I lay down on my stomach for awhile, it usually makes it feel better--atleast until I get back up. BUT, since I've been gluten free that's my one major symptom that has disappeared. But, maybe it's just because I'm eating healthier food...

If I were you I would give the diet a try and see what happens. Good luck!

[BRUMI1968]

Yesterday I was minding my own business hugging my husband when I got the sharp pain in my upper left abdomen. Well, I looked it up and it sounded like my spleen to me, which freaked me out. I could not take a deep breath, or much of a breath at all. It lasted about 7 minutes, the pain was stabbing, and was like an 8 out of 10. I will say that I decided to try pooping, to see if it might be gas bubble, though usually my gas bubble are lower - and after I pooped, it did go away, but not instantaneously - more like 3 minutes later. There was a lot of air in the poop.

I've had this before, to a lesser degree, but this was ridiculous. I don't know if things bug your spleen or not.

My pain was in front under my ribcage and did not move to the back; not having just eaten fatty thing...well wait, maybe walnut butter; have been more constipated than usual for the past few weeks, but that day was a bit better; burping a bit more than usual, but only during eating time. I had eaten lots of cabbage the previous days, as I had a hankering for ginger stir-fry.

[Generic]

I have had an 11 month bout (so far) of extreme pain on the left upper ribs / chest area. It was a combo of things for me. I had a diseased gallbladder, a gallstone stuck in the bile duct and an 8mm kidney stone.

I have had 1 surgery for gallbladder removal,
1 E.R.C.P. to remove the stone from the bile duct, contined to have severe pain.
1 endoscopic ultrasound (everything was normal), try this pancreatic enzyme....acid reducer...
begged to have a 2nd E.R.C.P. (finally removed "stone that had already passed"). Still continued to have pain 5 months into the start of everything. Oh by the way, you have a kidney stone...let's send you to the urologist.
2 seperate blastings of the 8mm stone and I still have pieces that I haven't passed "yet".

Did I mention 5 trips to th E.R., 4 catscans, 2 ultrasounds all the while here is another script for more percocet.
I sound like the 12 days of Christmas song...and a partridge in a pear tree.

Sorry little frusterated here. If anyone has any questions let me know. I think I'm becoming an expert on left side rib/chest pain.

[Bell]

I got it again yesterday night, after glutening myself (on purpose! just to see!) and the pain came back just as before. It's sharp, when I breathe in, in the middle of the ribs. It makes me gasp, because I forget it's going to happen and then sigh... OW!