Has Anyone Had Epigastric Symptoms, Severe 'flare-Ups'?

[Siva]

Hello everyone,

 

First off, a big thank you to everyone who has contributed to these forums.  For the last few months I have been one of the many shy undiagnosed lost souls lurking through the forums and I have found these pages extremely informative.

 

Up until 6 months ago I was a healthy 29 year old with an active lifestyle, running 5 days a week. For the last 5 or so years I have had fairly consistent loose stool, but had shrugged it off as mild IBS. My initial symptom was a discomfort/burning pain behind my sternum. After 3 weeks I visited the doctor and was diagnosed with bronchitis. Over Christmas the symptoms became much worse. The pain behind the sternum and throat was quite severe, it periodically felt like a band was under my diaphragm and I had overwhelming malaise and fatigue. I had never felt so unwell in my life. Over about 2 weeks the symptoms slowly began to subside. I regained largely regained my energy but my symptoms alternated between a discomfort in my epigastric area (center below rib cage) and pain/discomfort behind my sternum and a lump in my throat.  I visited the doctor immediately after the holidays and was diagnosed with heartburn and prescribed Nexium. 2 months of Nexium  followed by a trail of Tecta made no difference with the symptoms and a subsequent barium swallow ruled out reflux.

 

2 months ago a second, more severe flare up occurred. The pain in the epigastric area worsened again, and the malaise and fatigue returned. The pain at times radiated to my back and my left neck and arm periodically felt "weird" for lack of a better way to describe it. During this second flare up I started to experience a lot of nausea and constant brain fog. In this last flare up I also has begun to notice a discomfort directly left of my belly button infrequently. I have also periodically begun to notice mild discomfort in my lower abdomen every once and a while, almost as if I can feel my intestines in this area. I missed 1.5 months of work and went from running 5 days a week to finding vacuuming an ordeal. I am just now starting to feel like my symptoms are slowly lessening

I have had a chest x-ray, ultrasound, full blood work up (including liver panel), ECG , H. Pylori breath test and barium swallow (all normal except low Alkaline phosphatase). I have neurotically tracked symptoms/food intake and the only (although not constant) relationship I can seem to find is that symptoms seem to worsen somewhat 2.5-3 hours after eating.

I was finally referred to a surgeon and am currently waiting for a CT and endoscope.

 

After 6 months of miserable quality of life my anxiety is really getting the better of me and  I have started fearing the worst after having spent too much time consulting Dr. Google. I think most folks with chronic symptoms have a worst case diagnosis that keeps them up at night, and my mind invariably finds its way to chronic pancreatitis.

So in the meantime, while I not so patiently await my diagnostic fate I am reaching out to the community to see if anyone out there has had similar, not so 'typical' celiac symptoms.

Specifically I am wondering if anyone has had;

1. Predominantly epigastric symptoms

2. Chronic symptoms interspersed with severe flare ups lasting weeks.

Any input would be of great help (and comfort)

Thanks!

Siva

 

 

 

[nvsmom]

Welcome to the board.

 

GERD types of symptoms, along with nausea, anxiety, brain fog, loose BM's, and fatigue, are pretty common symptoms of celiac disease.  Like most diseases, the symptoms of celiac disease do not stay the same even if your intake of gluten does.  Some days, weeks, or months are better than others.  Plus a food sensitivity reaction can take minutes, up to a couple of days, to set in which makes it really difficult to pinpoint the offending foods.  Keeping that food and symptom journal is a good idea.

 

Here is a large list of possible celiac disease symptoms: Open Original Shared Link

 

I think you might as well get tested for celiac disease.  You have more than enough  obvious symptoms to request the full celiac panel.  Ask for these tests:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests often best at detecting early celiac disease
• EMA IgA (endomysial antibodies) - similar to the tTG IgA but detects damage as it becomes more advanced
• total serum IgA - a control test to detect IgA deficiency which can cause false negatives in IgA based  celiac tests (ex. tTG IgA)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests that were largely replaced by the DGP tests
• endoscopic biopsy - ensure 6+ samples are taken

The blood tests require the patient be eating gluten (about 1-2 slices of bread per day) in the 8-12 weeks prior to testing.  Don't go gluten-free if you plan to get tested.

 

These tests are not perfect.  Most of them, including the biopsy, can miss celiacs - often up to 25% of them.  If you get as many tests done as possible, you'll increase your odds of celiac disease being detected (if that is your problem).  See pages 7 to 13 for info on testing: Open Original Shared Link

 

Any GP should be able to order the blood tests for you.

 

If tests come back negative, you could still have non-celiac gluten sensitivity (NCGS), which has almost the same symptoms as celiac disease (minus the intestinal damage).  Unfortunately the only way to diagnose NCGS is a successful gluten-free trial of a few months - 6 is best because it can take some symptoms quite a while to improve.

 

Best wishes to you!