Recent celiac disease Diagnosis With Pain In Left Side

[celiackitchenchemist]

Just joined this group today and I am hoping maybe someone out there can tell me if this is normal with celiac disease. Let me start by telling you a little bit about my recent celiac diagnosis... maybe this will help.

Starting about 7 months ago I got really sick in the middle of the night with severe diarrhea and vomiting so bad I was passing out from the pain in my stomach. Had just returned home from a trip to Ireland and so just thought I had picked something up over there. The strange thing was that after the first attack I had a really bad pain in my left side which is right under my ribs. The pain was bad enough that eating and drinking bothered it so I was avoiding both. I have always been what I would consider "tough" so I figured I would stick it out at home but after several weeks of being severely dehydrated, losing 20 lbs, and having another attack I figured it was time to see the doc plus the pain in my side had not gone away either. To make a long story short they sent me to a GI doc in June that did some test and told me I had IBS. I knew that wasn't the case because I already knew I had colon polyps from test a few years back and was told I had mycroscopic lympocytic colitis at that time. So... I figured I would try and ignore this since I was losing weight and was thrilled about that. Fast forward to September... the worst attack so far. I'm sure everyone knows the fun things that go along with celiac disease so I won't give you the gorry details but I will tell you that at this point I was losing blood like someone had turned a faucet on inside me. My husband took me to my doctor's office but thankfully my doctor wasn't in that day and I had to see another doctor. He asked me what I had been doing about my celiac disease and I had no idea what he was talking about because no one had ever told me I had it. In fact, I told him that all I knew about gluten free diets were a bunch of fad dieters were doing it! Boy, was I wrong! lol Because I didn't believe him he gave me my blood test and endoscopy results that showed a positive reading for celiac disease was between 1-3 and my numbers were at 32! He hooked me up to iv's because I was so dehydrated and ran some other test that showed at that point I was also malnurished. I think at that point I had lost about 35 lbs but as of today I have lost 48 lbs since May! Ok... so that is my story and you all probably know the rest with having to stay away from gluten which I have done faithfully since my diagnosis. I have now refused to go back to the GI doc that missed my positive test results and am seeing a wonderful GI doc that is continuing to check my blood because even after 5 weeks of being off it my blood test were still coming back high. I go back in a week to talk to him about the pain in my side that is NOT going away. He told me that as bad as I have this it could take a year for me to see some improvement but I am very curious before I go if anyone else has this strange pain in their side. I would describe it sometimes as a hard lump. Of course I feel like I should be able to feel it if I put my hand on my side but don't. Sitting in my car or even sitting here typing I feel like my rib is pushing into this "lump" as I call it. Does anyone else have this?

Thanks in advance for any advice or comments you have. Sorry this is so long but thought I should give you a little history since I am new on here.

Thanks again!

[rosetapper23]

This topic has come up before (pain under the left ribs), and many of us have had it. I had it for three years before I found out I had celiac disease--and it worsened as the symptoms worsened. It took about two years to go away after I went gluten free (and I'm strictly gluten free--no fooling around there!). A doctor once told me that the small intestine begins right under the left ribs, and that's the part where the lining can get destroyed by celiac. Anyway, if I accidentally get glutened, the pain immediately returns and takes weeks to go away.

[celiackitchenchemist]

This topic has come up before (pain under the left ribs), and many of us have had it. I had it for three years before I found out I had celiac disease--and it worsened as the symptoms worsened. It took about two years to go away after I went gluten free (and I'm strictly gluten free--no fooling around there!). A doctor once told me that the small intestine begins right under the left ribs, and that's the part where the lining can get destroyed by celiac. Anyway, if I accidentally get glutened, the pain immediately returns and takes weeks to go away.

Thank you so much for this information! Even though I am so glad to hear this is a symptom and probably not something else I am sorry you are having to deal with this left side pain too because it is very uncomfortable.

Thanks again!

[Looking for answers]

Your spleen is also directly under your left rib cage. I would definitely talk to your doctor about it. I get this often too.

[celiackitchenchemist]

Your spleen is also directly under your left rib cage. I would definitely talk to your doctor about it. I get this often too.

Is there a link with you spleen and celiac disease? I was not aware of this. When I was in high school (many years ago! lol) I got mono so bad it went into hepatitis and I certainly don't remember feeling this kind of pain in my side even with it. I go back to the doctor next week because they want to look into this "left sided pain" some more. They are talking about doing a CT scan or MRI. I had a CT scan back in June but that didn't show anything at that time.

Thanks for your reply.

[ravenwoodglass]

I agree you should mention this to your new doctor to be on the safe side. I would also encourage you to get copies of the first doctors test results from your new doctor and a full copy of your records from the old one and to report him to the AMA. It won't get you back those lost months but it might help keep it from happening to anyone else.

[celiackitchenchemist]

I agree you should mention this to your new doctor to be on the safe side. I would also encourage you to get copies of the first doctors test results from your new doctor and a full copy of your records from the old one and to report him to the AMA. It won't get you back those lost months but it might help keep it from happening to anyone else.

Actually it wasn't just the GI doctor that missed it is was also my family physician. When I confronted my family physician about missing the results (the one she signed off on that I have a copy of!) she said she "doesn't specialize in celiac disease and if I had anymore questions on it then I would need to talk to the GI doctor"... that btw is the doctor that told me it was IBS when he had my test results at his office! I refused to see the GI doc that missed the results and am currently looking for a new family physician. I'm a pretty easy going person but I was really upset with both of them when I found out I could have been saved alot of illness over the summer if they had both just read my test results and not blamed each other for not getting it right. The doctor that was on call for my regular doctor did give me my test results because it was kind of hard to believe him after I was told by two other doctors that it wasn't anything more than IBS. He gave me the results and told me to go home and Google away until I was satisfied with what I was reading. That's exactly what I did and while they were giving me my iv's he had nurses come in and educate me on what I needed to be doing.

One more thing about these doctors that missed my test that others might find interesting. When I did finally get a referral to see a different GI dr the new GI doc told me that the first GI doctor that I saw was "very good" and he would probably agree with his diagnosis. I just about left his office when he said that because I felt like I was wasting my time. But... he went through all of my test results in front of me and when he came to my blood test he said "Um Hum..." and I knew then that he found the positive results. Ever since then he has been wonderful and best of all he lets me ask questions and takes the time to answer them. He is very concerned about the 48 lbs I have lost and said his main concern now would be lymphoma's and wants me to keep coming in to have my blood checked. Feel like I'm in good hands now. I go back to see him next week so it will be interesting to see what he has to say about me losing more weight since my last visit right before Thanksgiving because I have not cheated one time and NEVER put anything in my mouth that I haven't checked the ingredients on.

Thanks again to everyone that has posted comments. Today is my first day on here and it's nice to know if I have a question I can get some helpful advice.

[SaraKat]

Hi- the pain in my left side was the only symptom I really had (along with pain in the left underarm, but I still don't know if that was celiac related). It started in Oct 2009, it felt like there was something stuck in there, I had the lump feeling too. I was so convinced that there was a lump in my ribs that I had a CT Scan, chest XRAY, Ab ultraound, blood tests galore (not celiac though). Everything kept coming back normal, except my iron was very low, all my other vitamin levels were normal though. The pain on the left side never went away and a few Dr's diagnosed me with costochondritis. I had seen just about every type of Dr except a GI Dr, since I had absolutely no gut/digestive issues.

I was concerned it was spleen related also since that is where your spleen is, but mine was completely normal.

Finally in August 2010 (and about 8 Dr's later) the pain was so bad that I decided to see a rheumatologist for the costo and she told me that she was going to run some blood tests for some obscure things just to rule them out. The next day I saw her # on my caller ID and I knew something must have come back positive. Sure enough, she said I was pos for celiac. I had really never heard of celiac and thought gluten free was just a fad celebrity diet. Anyway, she told me go to a GI Dr for the endoscopy and I did and it was definitely celiac.

I started gluten-free in Sept 2010 and the left side pain has gotten better, but sometimes it comes back and it is so painful. I have it right now and I think I must have been glutened over XMAS because it usually takes a while for it to go away once it starts. 2010 for me was a terrible year and I have to say that in the few months since the diagnosis and going gluten-free I have felt a lot better. Even though the pain comes back sometimes it's not as bad as it was this past summer. I would have to unbutton my pants/skirt at work, because the pressure when sitting at my desk hurt my left ribs so bad.

I don't think GI Dr's correlate the left side pain and celiac, my Dr still doesn't think they're related. I find it way too coincidental since every other test has come back normal. The rheum said that there are a lot of nerve endings in the rib cage and it is inflammed and that could be why I am feeling pain. Also, they say that celiac can affect the bones and the rib cage is bone-who knows!

There are quite a few people on here that have the left side pain. So, you are definitely not alone. Good luck to you and let me know if you have anymore questions.

-Sara

[celiackitchenchemist]

Thanks Sara!

I am fortunate because my GI doc does think the pain in my side is connected to the Celiac. It's my family physician that thinks it could be something else and that's why I am going back to see my GI doc next week. He can then talk to my family doc and explain all of this to her.

Hope your pain goes away soon! Not fun I know! But look on the bright side... it could be alot worse! At least we know what to do to get past it! :-)

Have a nice day!

[cassP]

id love to find out exactly what this pain is too!! but i really think mine is muscular-i get it on the right side too... i am constantly bent over with bad posture at my crappy job (im an LMT)- and my iliopsoas muscles go in to spasms alot- and my diaphraghm and abs will spasm too.

but on top of that, i went to an Osteopath who said that he believes that issues in the intestines can "refer" pain to the overlaying muscles. ???? sometimes i really have no idea where the intestinal pain starts or ends and the muscular pain starts and ends.??? i could have a really long hard laborous day and i feel like the muscle pain causes intestinal gurgles and bloating. and vice versa- i could overdo the fructose or fructans- get an intestinal gurgle- and then my muscles start spasming

i just need a whole new trunk

[Looking for answers]

Hey, I was thiking of you and my earlier post and the spleen as I watched a DVR-recorded Dr. Oz last night. He said there is a simple test you can do at home to see if your spleen is enlarged. (Of course, this shouldn't be used in lieu of seeing a docotr ). Cup your fingers together and place them directly under your left rib cage and take a full, deep breath. He said if you feel something when you breath in, it's probably your spleen.

I currently have costochondritis and it comes and goes as I get accidentally glutened.

[Meatballman]

I had similar pain ander both my left and right ribs for four years.Was misdiagnosed with fibro and costochondritis.Correctly diagnosed October 2010 since going gluten free it is muched improved.For me rib pain ruled my day nobody could figure out what it was.I was even told it was anxiety.Celiac was to blame all along.

[claritinha0]

Hi there:

 

I was diagnosed about 5 four years ago, and manage my disease pretty well, except for the occasional gluten or soy accidental ingestion.

 

Recently, however, I recently started feeling some "bubbling" or "gurgling" sensation on that side. Sometimes I even feel as if something was "pushing out", like in the movie Allien. No pain, just this unusual bubling sensation.

 

Any thoughts?

 

Thank you.

[Slgerrish]

I literally felt as if I was reading my own story. 

Came back from a Baja Cruise: thought I had food poisoning

Was told I had H-Pylori (treated for that)

then pain did not subside, went back to DR...

Was told I have acid reflux (Given prilosec to take 2x's a day)

then they decided to 

test for worms...(Mexico...you know) negative

Kept pursuing the Dr...Finally sent me to a GI 

Endoscopy...showed an inflamed stomach lining

Pain still horrible, consistently in left side

GI Dr out of town seen a co-worker asked about all the blisters in my mouth, nose and eyes that had been happening so consistently

New GI Dr asks if I had been tested for allergies

No Never (Was beginning to think I was crazy!)

Tested me for allergies

came back positive for Celiacs, lactose, and peanut allergy

Next step seeing an allergy specialist for further testing

Gluten free (as far as I know) for 1 month....pain still consistent

Thank you for sharing your story....It's so hard to communicate with people who have no idea what this is like. I hope you are better now. I also read that it could take up to a year for the pain to pass....I hope that's not the case.