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How it all started...AKA...In the beginning

How it all started

Overwhelmed. ..anxious. ..excited…and a gamut of other emotions are what I felt that day.  Did I hear this new doctor right?  He left the exam room stating “wait here, I think I have something that might help you.”

I was out-of-town for a week when I started with sinus problems on the second day there.  I was in a familiar town, had a former doctor there, but chose to visit a walk-in clinic hoping to be in and out of there quickly.  I knew that going to my former doctor meant possibly waiting days to get in for a visit or waiting a long time in a waiting room, then an exam room.  That may have been the best decision I’ve made.  I had waited 3 days since the congestion began and my ears were still clogged.  I knew I had a sinus infection and prayed that I could get put on an antibiotic, as based on past experience, if I didn’t, it was going to get unbearable and require a stronger antibiotic than I wanted to take.

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I went to a walk-in clinic shortly after they opened for the day.  There was only one other patient there.  So far, so good.  When the doctor walked into the exam room, he was an older man.  Yes, my prayers were being answered…short wait (important because I had a 10 month old with me) and from past experience, younger doctors tend to not want to prescribe antibiotics, but I knew what I needed.  After reviewing my medical history with me...fibromyalgia, Chronic Fatigue Syndrome, IBS, migraines, depression, abdominal pain (blamed on ovarian cysts)…he examined me and determined I did have a sinus infection.  That’s when he said, “I’ll be right back.  I might have something to help you.”  Of course, I’m imagining he’s gone to get me a neti pot and my stomach turns.

He comes back with copies of something from the internet.  My curiosity is piqued.  He explains that he has started giving information to patients that come to him with a history similar to mine.  It’s information about celiac disease.  I listen to what he has to say while I remind myself that I was tested for that about six years prior and it was negative.  Hence, the diagnosis of IBS. He asks me to contact him in about 3 weeks to see how I’ve done with it (note to self, contact doctor!).  Wow, a doctor that knows I live out of state and he wants to know how I’m doing after I try this?  I leave with a prescription for an antibiotic, a recommendation of an OTC sinus and cold medicine, and wondering if this doctor might have the answer for my other symptoms.

Loving to read, I buy the book he recommends (The Gluten Connection) and wait anxiously for it arrive.  I started googling gluten-free and celiac disease.  I realize that I needed to immediately change what I eat.  The information is shouting out at me:  you have these symptoms, nothing else has worked, it can’t hurt to try it.  Okay, it can hurt the food budget, but if I can function better and feel better, it will be worth it.

My next blog will describe what I’ve experienced in the past month since starting to eat gluten-free.

As always, welcomes your comments (see below).

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In's Forum Now:

Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parent...

It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge. Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chas...

I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed ce...

Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA al...

This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven? My point is, that getting the gene testing is not an...