New Member Introduction

[Abel]

Hello everyone. I found this forum after conducting research into my new diagnosis. I wanted to share my story with everyone in the hopes that there will be someone else that has found themselves in a similar situation.

I'm a 30 year old male with no family history of Celiac disease. My brother has diverticulitis, but other than that, we are the only ones in the family with any GI problems. My story started about 6 months ago. At about this time in June I was in the best shape of my life. I had been lifting weights and eating clean since the beginning of the year and I was feeling great. On one particular lift I was out of position and after lifting a dumbbell I felt a tear in my groin like a hot zipper running up my abdomen. I immediately knew that something was wrong, and the golf ball sized lump I now noticed in my lower extremities was pretty evident that I had created a large hernia. I went to a surgeon later that week who confirmed within a few seconds that I did in fact have an inguinal hernia. I was disappointed at this point that I would no doubt lose some of the gains I had worked so hard to achieve, but I thought that 6 weeks of recovery time would do me some good. Prior to surgery I was 148lbs and 5'8 I was down to 12% body fat.

Fast forward to a few weeks later in July. I had started to feel like the healing process was well underway from the hernia surgery and I could see the light at the end of the tunnel....then I started getting sick. At first I thought I was coming down with a cold. Prior to having the hernia surgery I hadn't been sick in the previous 14 months and the last time I didn't feel well 2 days passed and I was good to go. After being sick for over a week at the end of July I went to the doctor. I was told that I had a sinus infection and was given antibiotics. As soon as I started to feel better, I started developing other symptoms. Most of my symptoms (now I know that are related to celiac) mimic the flu. I get body aches/joint pain, fever, diarrhea, migraines, and an intense pain in my abdomen. When I went to the doctor again I was checked for the flu and strep but the tests came back negative. I was told that I probably developed a virus after having a sinus infection because my immune system had been compromised from the surgery a few weeks earlier.

At this point I assumed I would be back to normal soon, but I was very wrong. The exhaustion soon set in and continued to grow for weeks after I thought I had gotten over my first round of being sick. I attributed my tired feeling to my new son who had been born in April. I just tacked it up to being a new dad and having to wake up at all hours of the night (which I'm sure didn't help).

I continued to develop strange symptoms as the days went forward and in September I started having extreme night sweats. I would wake up feeling like I had just jumped into a swimming pool. At night I would go to bed freezing cold and wake up feeling like my body was on fire. I sporadically developed very high fevers (101-104.5F) that would come and go for a week at a time. I didn't feel "normal" for the entire month of September even if I wasn't sick with a "sinus infection" or another "virus."

In October I developed another sinus infection and was put on more antibiotics. After one round, I still felt horrible and continued going to the doctor. My first general physician told me I had allergies after coming in feeling like I was going to die running another 104F temperature. Blood tests were done, and they showed a high count for White blood cells, Red blood cells, and several antibodies that fight infection. The doctor attributed it to me being sick and said it was nothing to be concerned about. At this point I was concerned because my blood test that was done 15 months prior showed no abnormalities and now my blood work showed a total of 6 abnormalities either too high or too low. On the morning of Halloween I woke up at 1am throwing up (first time during this experience that I was this ill, even water was a no go) and having diarrhea so bad that I wasn't sure which way was up. I was again running a very high fever and thought that I was dying. My wife took me to the after hours doctor who immediately sent me to the ER. They did several tests and administered more antibiotics. At this point I was nearly taking 4000mg of 3 different antibiotics per day and was continuing to get sicker. My blood results at the ER were even more abnormal and no one could tell me what was wrong. 

It was at this point that the ER doctor recommend I see a gastroenterologist and have a colonoscopy and upper endoscopy done. The colonoscopy came back fairly normal (nothing indicated diverticulitis or cancer). It was at this point nearly 6 months after I started having strange symptoms that a doctor said, "We need to check you for celiac disease by doing an upper endoscopy." That was the first time I had heard about celiac disease and never gave it a second thought. At this point I was down 15lbs of weight that I didn't need to lose in the first place. People at work started to ask questions and everyone, especially my wife, was concerned that I had been sick (now for months).

The week after the colonoscopy I started seeing a new general physician. After explaining what the gastroenterologist had told me, they decided to run every test they could think of. Lyme disease, hepatitis, pylori, and celiac were all tested for. My numbers were normal for everything except the celiac panel. I finally felt like I was getting somewhere after feeling hopeless for so many weeks. A few days later the doctor's office told me that I definitely had celiac disease and that I needed to stop eating everything that contained gluten. followed up with the gastroenterologist's office which told me not to change my diet because they wanted a positive biopsy result. This I didn't understand since my blood results showed positive. 4 weeks between procedures started to feel like 4 months after spending so much time in pain.

Needless to say I have my upper GI scope in a few days and I went gluten free for a week in the interim just to see how I would feel. It took a full week for symptoms to really improve, and as soon as I ate a very small amount of gluten containing food all the symptoms returned with avengence.

After scouring the internet and reading every article I could get my hands and eyes on, I found a few people who developed celiac after having hernia surgery. I assume that my case is pretty rare considering I didn't develop this until after I turned 30, and I have no family history. Has anyone else had this happen to them?

I hope all that I've recounted will help someone here on the forum. Its amazing how something so small can cause so many problems. I'm hoping that by the beginning of next year I will have all the necessary testing done and I can start my recovery.

 

 

[manasota]

Hi Abel,

You may be surprised, and at the same time reassured, that I found nothing unusual in your situation.  Celiac can frequently show its ugly head after surgery.

I am sorry to welcome you to the club!

I think the more you read on this site, the more reassured and relaxed you will become about your situation.  Our stories are all quite similar.  Just keep reading and asking questions.

You are lucky that you have found your diagnosis so quickly.  Many others are not so lucky.  I think you are brave.  I read this site for over 5 years before I posted anything.  HA!

Hang in there!

[Abel]

Thanks Manasota, I believe knowledge is power and life long learning is very important. I couldn't imagine being in this type of pain for years without a diagnosis. I started to wonder if I was going crazy after 6 months. My wife works in the medical field and has been a big supporter going through all of this. I was going to keep seeing the doctor until something was figured out. I do agree it was a blessing to have a gastroenterologist check for celiac early on.

[squirmingitch]

Hi Abel,

Welcome to the club no one ever wants to be in.

You need to make sure to keep eating gluten until the endoscopy!!! It's imperative!!

Also, all your first degree relatives should be tested every 2 years -- sooner if symptoms present. Celiac disease can present at any time in life.

It is not surprising your surgery triggered your celiac to present. Common triggers are surgery, illness, stress, pregnancy.

You are very lucky to have caught it so early on. So many people go through years & years & years searching for an answer & go to doctor after doctor after doctor. The average time from actively searching for an answer until time of diagnosis is running around 8 to 10 years these days.

Be sure to read the Newbie 101 at the top of our Coping section so you can prepare to make the needed changes to your household to keep you safe from cross contamination.

[Coltsneck24]

It's difficult to determine the exact cause with regard to Celiac presentation.  I am 67 years old and have no family history of Celiac disease. For the past two years, I have been having GI symptoms that have gotten progressively worse. I also have had several bouts of diverticulitis, which my GI physician says is unrelated to Celiac.  She said to me, "Let's just get a Celiac panel so we can rule it out before we go any further addressing the GI symptoms (bloating and diarrhea). When she called me, she said my numbers were very high and that I needed to have a biopsy to confirm (which I did and was diagnosed in November with Celiac). 

So, getting diagnosed at 30 is not unusual although I don't know why the surgery would have precipitated the intestinal symptoms.

Celiac is a genetic, autoimmune disorder, so it is strange that we can go for years eating gluten and having no symptoms and then, poof! one day we are symptomatic. The good news is that we have a diagnosis and can take steps to reverse the bad effects even if it means a lifetime commitment to being gluten free.

[bartfull]

"So, getting diagnosed at 30 is not unusual although I don't know why the surgery would have precipitated the intestinal symptoms."

I'm not sure doctors have figured out WHY, but celiac often presents after physical or emotional trauma. Many folks have had similar experiences after surgery or childbirth, or even the loss of a loved one.