Anybody Had These Symptoms?

[kdawz]

Hi All,

I've been having some trouble the past 2 weeks with some stomach issues, and am suspecting celiac disease- though my symptoms aren't the most typical. I am wondering if anybody here has ever heard of symptoms like this before.

I'm a 25 year old female, I'm very active, work as a nurse, am 5'8" and 140lbs. 2 weeks ago I went to bed with a bit of a stomach ache. I woke up around 3 am with sharp stabbing pain high in my abdomen (epigastric), and a real sense of fullness. I wasn't able to sleep more than an hour between 3 and 6, and decided to get up since I couldn't sleep. I continued to have waves of pain until around 10 AM, but the feeling of fullness persisted. The doctor at my work did an assessment and told me to get a work up in the ER for my gallbladder and pancreatitis. I did not eat anything yet that morning, and had only taken a tums (did nothing). I had no sense of nausea or vomiting- just weakness, fatigue, pain, and the sense of fullness. The ER did a work up and everything was perfect. My labs were beautiful, and a formal gallbladder ultrasound was also perfect. They told me I likely had an ulcer, and put me on a prilosec regimen for 3 weeks. I was unable to eat anything until about 4PM, ate a little fruit and then slept for about 4 hours, then slept through the night. The next day I just felt like I was coming off an illness, but my stomach felt mostly okay. I started the Prilosec regimen, and figured that would be the end of it. I had another episode 3 days later, very similar to the first. This one started with the fullness, and by 10 am I was feeling awful again. I didn't eat anything at all again until 5PM. Slept a lot, felt weak, achy, full, with waves of stomach pain. No nausea or diarrhea. Some belching. I assumed that the Prilosec just hadn't kicked in yet. I stopped drinking coffee after the first episode, stopped taking any form of pills (vitamins, occasional ibuprofen).

I was okay for about 5 days, and then I had another. And then this past Monday I had another. All the same. Starts with a feeling of fullness, then the epigastric pain which lasts for about 6-8 hours. Then another several hours with fatigue and muscle aches. I don't eat for 12-24 hours, and then have a recovery day where I feel weak, and then I feel almost back to normal. The most recent started around 10PM, and I hadn't eaten since about 3PM.

I have kept a food diary, and can't seem to find a strong correlation. I went back to the doctor, and he told me to stop taking the prilosec since it wasn't working obviously. I mentioned either celiac or a lactose intolerance and he didn't think it was likely since non of my episodes have ever started after recently eating. In fact most started several hours after eating. Though if it's not gallbladder, pancreas, or ulcer, I can't think what else it could be.

Of note, I do seem to be having fatty stools. The doc wants a stool sample (awesome..), and if he can't figure anything out from that, then they'll do an EGD. I had a touch of diarrhea with the Monday episode, gas, and felt generalized bloating all over my abdomen (pain was still epigastric).

Sorry for the lengthy story. So, the final question. Has anyone had this delayed onset of symptoms that are severe for 24 hours, and then resolve? It's weird I know. I was tempted to try a gluten free diet, but the doc said to not so that if he ends up pursuing that route, my results won't be skewed. If I have any more episodes in the meantime, I'm just going to ask to go ahead with the scope now. Missing work, and feeling like crap a couple days a week is not ideal, and I'd like to solve this mystery. I've been eating mild boring foods (toast, fruit, etc) and juicing for a meal once a day. Don't want to anger the sleeping beast:(

Thanks!

[birdie22]

I have not been diagnosed Celiac and my blood panel was negative, however I've been on a gluten-free diet since Nov in order to determine if gluten is my issue. I too get epigastric pain and visible upper and lower abdominal bloating. It usually starts about 1hr after a meal. I find that phazyme sometimes helps. The fatigue, looser stools (but not D), muscle achiness and headaches tend to begin 24-48hrs later.

I think it would be worth it to ask for a celiac panel while you are still consuming a gluten rich diet.

[kdawz]

Yes, I was considering asking for a panel, but my doc seemed so sure it wasn't celiacs because my symptoms were so delayed. And I've heard the panel isn't that accurate. Since he's already skeptical, I hate to have a panel come back negative so that he'll really brush it off. Though as time goes on I am more and more tempted to just try gluten free and see what happens. I've also toyed the idea of lactose intolerance, but gluten seems the most likely culprit to me.

Both these options are not being recognized by any docs because I typically have an episode several hours out from eating. Which seems weird to me too. Ugh. Frustrating.

[frieze]

have they done functional studies of your gallbladder? cause that really is what it sounds like. and gall bladder issues are common with celiac disease. had a friend that had pancreatitis from sludge not stones. good luck

[birdie22]

I empathize with your frustration. Right there with ya!

When I asked for celiac testing I just asked my doctor to humor me. She did and it was negative. But she was also the first to admit that there's false negatives and non-celiac sensitivities. After the panel then I did a trial elimination diet. Of course now I'm left to consider whether I ask for a GI referral, go back on full gluten, and do a scope. But I'm still glad to have done the panel even with neg results.

I've been rx'd Levsin (and IBS antispasmodic) which helps with the epigastric pain when it's really bothersome but it doesn't do anything to the distention, just makes it not be painful. The phazyme/gas-x helps with the bloat, but not the discomfort.

Good luck to you as you try to sort this out and don't be afraid to get demanding. You are your own best advocate and while docs have answers, they don't always have all the answers all the time.