eosinophilic gastritis

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My (Ongoing)Medical Journey

I thought I'd add this page to reach out to others who, like me, suffer from eosinophilic gastritis (and also nutcraker syndrome, as described below) I was diagnosed with eosinophilic gastritis in June 2009. I'd been experiencing severe abdominal pain, and bloating that began in May 2009.

Doctors originally thought the pain was caused by my gallbladder. After undergoing numerous tests (x-rays, ultrasounds, live x-rays) I had my gallbladder removed at the end of May. The surgeon said it was filled with numerous small stones which were too small to show up in the ultrasound images. Great, problem solved I (erroneously) thought.

Unfortunately, my abdominal pain continued then worsened, this time the pain was in the left upper quadrant of my abdomen. I was constantly nauseous, even from drinking water. I also had a constant burning pain and feeling that I had a knife stuck in my abdomen. I was unable to eat food due to severe abdominal bloating after just a few bites of anything.

After 2 more trips to the ER, more CT scans, MRIs, x-rays, ultrasounds I finally got an appt with a GI doctor. My endoscopy revealed I had severe gastritis and the endometrial lining on my stomach was gone (that explained the burning pain and not being able to drink water). In addition to that, I also had gastroparesis, where my stomach took longer than normal to empty.  I was told to go on a low acid diet and take some drugs to rebuild the lining in my stomach.

A week later the pathology results came back on the tissue samples the doctor took from my stomach. A nurse called me up, saying to me I needed to come in to discuss my results with the doctor. Terrified, I went and the doctor explained I had a rare disorder called eosinophilic gastritis. Basically, my immune system was attacking my stomach and we needed to figure out why. Only a steroid can knock out the infection and unless you find what triggers this autoimmune response, once off the steroids you are likely to relapse.

I took the steroid and lost 15 lbs in a month. Usually celiac disease is the culprit for the presence of eosinophils in the stomach. I tested negative on the blood test for celiac. Still, I went gluten free for 6 weeks to see if I had gluten intolerance; it made no difference in my symptoms. I was tested for food allergies, negative for all. I went vegan and soy-free for 6 weeks, no change. I was tested 3 times for parasites, all negative. A colonoscopy showed I did not have crohn’s disease.

The doctor had never seen a case like mine and wasn’t sure what to do. He referred me to another GI practice, to a doctor who specializes in eosinophilic disorders. This new dr is working with me (In Oct 2013 I was referred to another hospital; see updates below) to try to figure out what triggered my body's eosinophilic response and, also, to help me deal with the constant abdominal pain.

I read on a lot of discussion boards that people who suffer from similar symptoms and tend to be dismissed by their doctors; they say the dr blows them off by saying it's just irritable bowel syndrome (IBD) and do not investigate further. I am so lucky to have a doctor who doesn’t dismiss my pain as IBD and is committed to helping me find the cause of my abdominal distress. I’m a unique case because I am young, otherwise healthy, have never been overweight, nor is there a history (neither personal nor family) of GI issues.

Now, with no change in my eating habits, I am below a healthy weight for my height (In 2014 I have worked hard to bring my weight up to the low end of my BMI). My doctor is concerned, as am I, by this unexplained weight loss (which was initially triggered by the steroid). My body doesn’t seem to be able to digest/absorb food well, especially fats. Yet all my blood work is normal, showing no sign of malnutrition. I’m currently taking pancreatic enzymes via a pill that I take anytime I eat food(stopped taking this in 2013 as it made no measurable difference); the doctor now thinks something may be wrong with my pancreas. I am also seeing a nutritionist to try to help find ways to gain weight in a healthy way. It’s so frustrating because I love food and I love to eat and with this disease it’s difficult to enjoy, and even eat, food. Right now (2013) my "official" GI diagnosis is "functional abdominal disorder." A vague diagnosis for something they have never seen, nor can categorize into a current, known "disorder."

My latest MRI (from June 2010) showed that I also have a kidney disorder called "nutcracker syndrome", which simply is one of my arteries (the SMA, superior mesenteric artery) is wrapped around the left renal (kidney) vein and squeezing it shut, causing my kidney to malfunction. Nutcracker syndrome is, of course with my luck, rare and very difficult to find information on. So now I see a nephrologist (kidney specialist) in addition to my GI specialist, who is still trying to figure out my fat malabsorption problem. To see an image of my nutcracker syndrome click here.

Meanwhile, I met with a vascular surgeon to discuss my nutcracker syndrome; I'm the first patient he has seen with this condition. He performed a venogram at the hospital (Oct 2011), I definitely have a compressed vein, but whether or not surgery will cure the pain, he can't say for sure. Since I'm the first case he has seen, he wants to consult other doctors before making his recomendation. So if I end up needing surgery to correct this issue, I would be the first patient here to be operated on for this syndrome. For this reason, my nephrologist is considering sending me to The Clinic for the surgery; since they have seen and operated on this rare kidney disorder.

My GI docotor has adjusted my pain medications (basically bumping them up, leaving me a walking zombie during the day). I find it frustrating that all the tests I endure fail to show clear results, I seem to not fit into any category; I'm a medical mystery. Still, I am determined to remain optimistic about the outcome; whatever it is. Unfortunately, for me, this is an ongoing cycle of "good periods" and "bad periods." I have found, for myself, when going through a "bad" cycle an all liquid diet helps. I drink electrolyte drinks (I use NUUN tablets, but have drank gatorade in the past) and drink fruit smoothies (I have swapped NUUN tablets for 100% coconut water, a natural electrolyte drink. Also, I swapped smoothies for cold pressed juices). I also try to avoid protein during these times (because it puts extra stress on my kidney). Then I just wait out feeling like shit for a few weeks until I feel able to eat solid food.

Update April 2013: I went in for a routine visit with my nephrologist. I had a severe attack the night before so he decided to take bloodwork of my amylase levels (pancreatic enzymes) as well as my complimentary protein levels, since those numbers were off when my rheumatologist had bloodwork done in Jan. After feeling my abdomen, my doctor ordered an emergency MRI with contrast (the same MRI I had before that diagnosed me with Nutcracker Syndrome). I'm anxiously awaiting those results. Otherwise my symptoms remain the same.

update April 2013 Got my results back. I'm again low in C3 (which means I have an autoimmune/inflammation issue). I knew that from my rheumatologist, so I didn't give it a second thought. My Nephrologists interpretation "Difficult to know how to assess this in the absence of any other blood work abnormalities." As for the MRI I get this: "They did see a cyst on the liver. The radiologist commented on one other imaging abnormality in the liver that he also thinks is a benign finding. It's something they hadn't seen on prior MRIs largely due to the way the images were obtained. I certainly don't think that explains anything that is going on with you." Now I might have to have my liver biopsied. Great.

Update June 2013 I had an EUS (endoscopic ultra sound) to check for pancreatitis. Luckily, my pancreas looked normal. However, my Nutcracker Syndrome (rare kidney issue) is getting worse. The compression of the left renal vein is causing severe swelling of the SMA (superior mesenteric artery). It was 24mm. Thank God that I have the most amazing nephrologist (kidney specialist) in the world who squeezed me in to see him right away. He recommended having surgery to my renal vein before things get worse. There is a procedure called laparoscopic splenorenal venous bypass for nutcracker syndrome.  My nephrologist didn't want me to get my hopes up that this surgery will stop my pain. But it will help me avoid future severe kidney issues.  So next month I go to a world-renowned clinic to be tested to see if I'm a good candidate for surgery.  If so, then I will schedule the surgery for as soon as possible.

Update Aug 2013 I have now been referred to The Clinic further north where they have treated cases of nutcracker syndrome. After tests, MRI, ultrasounds, etc I am seeing a Pain Management doctor, who is amazing. I am getting nerve block shots. They put you on a table, have an ultra sound screen in front of you. You get a sedative to make you comfortable but it doesn't knock you out because you have to talk to the doctor and let them know where the pain is. Then you can watch as they stick the needle in your nerve and inject you with cortisone. Since my pain covers front & back of my left flank it's going to take me a minimum of 4 visits. My second one is in Dec. I love my doctor, he is among the top in his field so I know I'm in good hands. I'm confident in his ability to put the needle in my nerve. I have been so lucky that during my illness I have had such supportive doctors.

I have been getting a lot of questions about my diet. I'm currently eating low-acid, low-fat diet. No raw veggies. Few cooked veggies. Fruit. Oatmeal. low protein (due to nutcracker syndrome). Mr.Surly is eating paleo and I'm semi paleo. I eat very few carbs, not due to ill effects, but because I have never been a big carb eater. Any further questions don't hesitate to contact me personally. (surlykitchen@gmail).

Update Oct 2013
Mr.Surly and I decided to uproot our lives and moved 3 states north to be closer to The Clinic. Now it's a 4 hour drive one way instead of 12 hours one way.

Update Dec 2013
My first nerve block wasn't as effective as I hoped. The cortisone didn't travel very far and now it's starting to wear off. I am going to physical therapy twice a week for myofascial release therapy. I just started but I'm hopeful it will help. And I'm due for my second treatment soon. Keeping my fingers crossed.

Update March 2014
Nerve block #3 went well. It hasn't taken away all the pain but it has helped. I'm scheduled for #4 in April.

Update July 2014
Nerve block #4 did not go well, nor did it last very long; two weeks max. My myofascial release physical therapy is a godsend to the constant pain. I'm also learning at-home tricks to handle the pain. If you want specifics email me or leave a comment; I'm happy to share.

This month my GI issues have flared up with a vengance. I lost 10 lbs in 3 days. I fought hard to gain that weight and I will not allow this to happen again. My GI dr called in an emergency Rx to help with the horrid stomach cramps & nausea. The meds help but I have basically regressed back to the beginning of the GI issues. So frustrating! I'm doing a mainly liquid diet of cold-pressed juices & drinking coconut water. Vernors ginger ale & saltines are my BFFs right now. No fat period is going into my body; not even healthy fats (like avocado & nuts). Even the healthy fats are causing issues. Just laying low and waiting for this to end. I hope its soon.

Update Dec 2014
This year, with the help of my new hospital, I have been able to gain & maintain 10lbs. This puts me on the low end of the BMI scale! I'm still not at my pre-illness weight but I'm at least looking a lot more healthy. I have been drinking coconut water & cold-pressed juices and eating a lot of avocados. I'm proud of myself for this improvement and hope the trend continues. I do go through weight set-backs but after a few weeks I get back on track.

Update June 2015
It has been difficult but I'm maintaining my weight.  I have been decreasing my medication dosages (with the help of a doctor who laid out a plan specific to me and my medications).  I have moved to a mostly liquid diet of smoothies I blend myself.  I'm trying to eat low oxalate.

I'm getting visceral manipulation physical therapy. It's very interesting; I'll update if it helps.

Update May 2016
My most recent bloodwork showed I am deficient in thiamine (vitamin B1). The dr isn't sure why this happens. it's rare for someone living in a western country to be deficient in thiamine. it could be that my body isn't absorbing it but the dr won't say for sure. i'm taking a thiamine supplement and have to go back later for more bloodwork.

since moving to a new state, i have been missing my myofascial release PT. i haven't been able to find anyone in my area who does it or even knows what it is/has heard of it. very frustrating as that that was the most effective thing for managing my chronic pain.

Update June 2017
My bloating/distention is back. My stomach blows up like a balloon after just a few bites of food or drinking water. It's painful. Looks like I'm going back to drinking smoothies. No raw veggies, limited cooked veggies. I'm so glad I started this blog to record my struggles so that I can reference what I did to ease it.

Do you suffer from debilitating, out-of-the-blue, severe pain attacks? I need help. Read what my attacks are like here.

Here are some guest posts on GI Disorders:
Living with Chronic GI Disorders (by Kvetchin' Kitchen who lives with Crohn's Disease)

For anyone else who may be suffering similar symptoms and/or has eosinophilic gastritis (or wonders if they do), pancreatitis, or nutcracker syndrome with questions or advice, please contact me. GI issues are so hard to diagnose and the only support I have found is on internet discussion boards.

email: surlykitchen@gmail

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