Extreme right abdominal pain... Did I get the right diagnosis?

[beccs]

Hi! So... this is sort of a long story. Props to you if you read it all and can actually help me. I'm 20, a college student. About 2 years ago, I started getting these sharp and achey abdominal pains  on my lower right side every once in a while; especially when I was walking around or being active. Sitting down and relaxing made the pain go away. About a year ago, I finally saw my doctor about it. She was so hell bent on it just being muscle pain and putting me on muscle relaxers. I went through an ultrasound for my ovaries to cross that out, a full abdominal ultrasound, and then finally an abdominal CT scan with dye.. had to drink the borium and all. Ick. Everything turned out normal and she continued to try and feed me medications that never helped. As the year went on... the pain got worse. I was finally referred out to a GI about 6 months ago. She blood tested me for Celiacs, Crohns, and lupus. Now, it's not the first time that lupus has ever occured to me. My eye doctor asked me about it when he diagnosed me with chronic dry eyes because I am so young, and then my skin doctor mentioned it once the butterfly rash began showing on my face. Just small things, no biggie. I was also administered a HIDA scan and she checked my gall bladder and liver again. Once again, everything came back normal. She mentioned that my lupus test was "borderline" but still negative, and celiacs came back 4 points over the average limit.. positive. I cant remember which one it was, though. So, I endured an endoscopy. Everything was normal, no polyps or inflammation, nothing. The biopsies even came back normal. I've been gluten free for almost 3 months now, and the pain has yet to go away. Actually, sometimes, the pain appears when I haven't eaten in 6+ hours. Other times, it occurs right after I eat. But now, nothing can stop the pain. Not even lying down. Multiple times, it has even woken me up in the middle of the night and has hurt so badly to the point where I feel like i'm going to puke. It doesnt have a set pattern.. sometimes it will happen every day for a couple weeks, other times, i'll be fine for a month straight. But Days like today, the pain can last for 8+ hours and never subsides. Other than that, I didn't possess any other symptoms when I ate gluten. No upset stomach. No Bloating. No constipation or diarrhea... absolutely nothing. 3 weeks ago, I had a really bad cold and I ended up cheating and eating a package of ramen because when you're in college and broke... you can't afford or have the time to go huntimg for a 5 dollar can of soup. But I had no issues. My side didn't hurt, my stomach again didn't seem bothered, i was completely unphased.  I'm just not sure about my body at this point and am beginning to lose hope. Any thoughts..? Is it normal for people with celiacs to only have low right abdominal pain and nothing else? 

[SmilingPolitely]

On 3/1/2016 at 2:48 PM, beccs said:

Hi! So... this is sort of a long story. Props to you if you read it all and can actually help me. I'm 20, a college student. About 2 years ago, I started getting these sharp and achey abdominal pains  on my lower right side every once in a while; especially when I was walking around or being active. Sitting down and relaxing made the pain go away. About a year ago, I finally saw my doctor about it. She was so hell bent on it just being muscle pain and putting me on muscle relaxers. I went through an ultrasound for my ovaries to cross that out, a full abdominal ultrasound, and then finally an abdominal CT scan with dye.. had to drink the borium and all. Ick. Everything turned out normal and she continued to try and feed me medications that never helped. As the year went on... the pain got worse. I was finally referred out to a GI about 6 months ago. She blood tested me for Celiacs, Crohns, and lupus. Now, it's not the first time that lupus has ever occured to me. My eye doctor asked me about it when he diagnosed me with chronic dry eyes because I am so young, and then my skin doctor mentioned it once the butterfly rash began showing on my face. Just small things, no biggie. I was also administered a HIDA scan and she checked my gall bladder and liver again. Once again, everything came back normal. She mentioned that my lupus test was "borderline" but still negative, and celiacs came back 4 points over the average limit.. positive. I cant remember which one it was, though. So, I endured an endoscopy. Everything was normal, no polyps or inflammation, nothing. The biopsies even came back normal. I've been gluten free for almost 3 months now, and the pain has yet to go away. Actually, sometimes, the pain appears when I haven't eaten in 6+ hours. Other times, it occurs right after I eat. But now, nothing can stop the pain. Not even lying down. Multiple times, it has even woken me up in the middle of the night and has hurt so badly to the point where I feel like i'm going to puke. It doesnt have a set pattern.. sometimes it will happen every day for a couple weeks, other times, i'll be fine for a month straight. But Days like today, the pain can last for 8+ hours and never subsides. Other than that, I didn't possess any other symptoms when I ate gluten. No upset stomach. No Bloating. No constipation or diarrhea... absolutely nothing. 3 weeks ago, I had a really bad cold and I ended up cheating and eating a package of ramen because when you're in college and broke... you can't afford or have the time to go huntimg for a 5 dollar can of soup. But I had no issues. My side didn't hurt, my stomach again didn't seem bothered, i was completely unphased.  I'm just not sure about my body at this point and am beginning to lose hope. Any thoughts..? Is it normal for people with celiacs to only have low right abdominal pain and nothing else? 

I just joined this site, so please forgive me if I don't have a clue what I'm doing. I had a similar pain, strongest on the right side of my abdomen, and sometimes I couldn't stand up straight. I was having other symptoms that I didn't know were symptoms at the same time and lost my job because I just couldn't think clearly, couldn't complete simple tasks.

Now, I don't know your insurance situation, but it sounds like you've been going to doctors who haven't listened to what you're telling them. Happens SO often, especially if you have less than traditional or seemingly random symptoms.

It might be obvious that I'm rooting for a new, better doctor(s) for you because three weeks ago I was diagnosed with celiac disease, and although the pain's still there (I was warned that it would take awhile), I have hope after 5 years of suffering. There ARE doctors out there who don't just shrug and say "I dunno".

Of course, you have to find one...

[cristiana]

Hello both.

Beccs - is there any chance that it could be a grumbling appendix, as we call it here in the UK?

Smiling Politely, can you be more specific as to which quadrant this pain is appearing in?

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As a sufferer of mystery chronic lower left quadrant pain I extend my sympathies to you.  It is very frustrating.

[Irene Joanne]

As a child I had a grumbling appendix- horrible stomach pain for months before doctors figured out it was my appendix. 

[cristiana]

1 hour ago, Irene Joanne said:

As a child I had a grumbling appendix- horrible stomach pain for months before doctors figured out it was my appendix. 

I think this is definitely worth looking into - have the doctors done this, Beccs?   

[frieze]

lol, chronic appendicitis was my first thought.  doesn't mean you don't have celiac, as well.