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Member Since 26 Nov 2012
Offline Last Active Dec 10 2012 05:49 AM

Topics I've Started

Might Skip The Biopsy... Thoughts?

02 December 2012 - 06:19 PM

Okay, so if you missed my story earlier, I have a long list of typical celiac symptoms, including depression, severe cramps, constipation, bloating, major constant gas, etc. (See "Should I Re-Test", same thread, for the whole story). I have weight gain instead of loss, but my stomach is firm to the touch as if constantly bloated. Blood tests came up negative (still waiting on my copy in the mail), so I went to a GI last week.

I am about to just give up on doctors entirely. I sat there for over an hour explaining all my symptoms to the nurse, then again to the PA. Then the doctor walks in and the first thing he says is "I'm not really going to look at your other symptoms, just the GI symptoms." He then tells me he's 95% sure I am not celiac and diagnosis me with IBS. He does not want to do any more testing, just meds and diet changes.

Shouldn't all symptoms be considered when making a diagnosis??

I insisted on the biopsy, but his office has not called me back yet to schedule it, and now I'm thinking I should just save my money (out of vacation and sick time for work already too) and just see a dietician and make the change to gluten-free. I haven't started the diet yet because I have an allergy test scheduled for the 19th. My boyfriend says I should get the biospy only after the allergy test, to see if I come up as allergic or sensitive to gluten, but to me it seems like a moot point.

Any thoughts on if I should proceed with medical testing or just trust my instincts on this?

Should I Re-Test?

26 November 2012 - 09:58 AM

Okay, here's my story:

All growing up I had the stomach flu every year until my late teens. I had bronchitis and strep a lot as well.

When I turned 18, I was a nanny for my aunt up in Michigan and suddenly developed a severe stomach issue; I lived on yogurt for several weeks. I went to the doctor and they did several tests, including a stomach x-ray that required me to drink a paint-like substance. Nothing. I don't know what made it subside, but after several months, it finally did. I didn't ever connect it to something I was eating.

In early college, I developed temporary paralysis and passed out a lot. I had several MRIs, CAT scans, and EKGs. Nothing. One doctor said stress, one said migraines, another said epilepsy. Stress did seem to affect it quite a bit, and I had a very rough few years in college. Lots of stress and trauma, and suffered from depression.

Still had the problem off and on for years, but have not had this issue for a couple years now. However, about a year ago or less, I suddenly had a major migraine and couldn't speak. I was taken to the ER from work and just given migraine meds. Getting two of my wisdom teeth removed seem to have helped that situation mostly, though I still get headaches fairly frequently.

2 years ago I fell and injured my knee at work. I went to an orthopedic, who told me I have arthiritis. I'm in my twenties.

About 2 or 2 1/2 years ago, I developed mild gas and bloating. Constantly. Pretty much 24/7. In the last few months it has gotten much more severe, including severe cramping. A few weeks ago my arms started turning purple and my hands were tingling and going numb. I had blood tests done and was told my vitamin D was low. Nothing I could find online attributed D deficiency to my symptoms, but what concerned me most was that my D was low at all. I have D in my multi-vitamin, which I take every day, and I also take an additional D supplement. I also drink a lot of D fortified milk (lactose free as of 5-6 months ago). I found celiac when I was researching causes for D deficiency.

I had my doctor test me for celiac and they took blood last week. I got the call today that my test came back NEGATIVE. But I have so many symptoms! Gas, bloating, cramping, constipation, fatigue, anxiety and depression (for no reason), and frequent infections (respiratory and urinary). Not to mention, the arthiritis in my twenties, and my medical history. No one in my family has been diagnosed with celiac, but one of my brothers has been describing smiliar sypmtoms to me. He turned 20 this year and has frequent stomach problems.

I've decided to pursue a gluten-free diet, regardless. But should I insist on a biopsy or another blood test? I just want to know why I'm sick all the time! I imagine my boss would too.....

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