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Frightened

Karagirl

By Karagirl
in Coping with Celiac Disease

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Karagirl Newbie
Karagirl
Posted

Hello, thank you for reading this.

Friday night I slipped on ice on the top of stairs on my deck, and landed hard, sideways-bouncing down 4 steps. I am only 35 years old...and the moment I stopped hitting my backside on those steps I knew I was in trouble. An E.R. visit revealed I had fractured my pelvis. I hit those steps hard, so hard my skin indented and is still indented around a massive swollen butt. I am not a large person. 5'7" and 130 pounds. 6 months ago I was found to be vitamin d deficient. That combined with the history of celiac (diagnosed in 2004) I mentioned/ asked my endocrinologist if I needed a test for osteoporosis (I have also had a hysterectomy at the age of 29) and she just looked at me and said it wasn't necessary.

Now, I am thinking, that I should have pushed much harder.

I just started seeing an orthopedic doctor last wednesday, due to needing help strengthening my left side after suffering a lacunar infarct in Nov. of 2004. This fracture on my right side is leaving me a bit disabled.

Celiac is a serious, life threatening, possibly disabilitating disease. Are there any doctors out there that truly understand this disease and all its ramifications?

I am only 35, and I am strong---but my body is really taking a beating. I don't know what to do anymore as far as being wise about being as healthy as I can be. I am gluten free, but went so long misdiagnosed, that I am afraid it has shortened my life.

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Dennis wayne Newbie
Dennis wayne
Posted
Hello, thank you for reading this.

Friday night I slipped on ice on the top of stairs on my deck, and landed hard, sideways-bouncing down 4 steps. I am only 35 years old...and the moment I stopped hitting my backside on those steps I knew I was in trouble. An E.R. visit revealed I had fractured my pelvis. I hit those steps hard, so hard my skin indented and is still indented around a massive swollen butt. I am not a large person. 5'7" and 130 pounds. 6 months ago I was found to be vitamin d deficient. That combined with the history of celiac (diagnosed in 2004) I mentioned/ asked my endocrinologist if I needed a test for osteoporosis (I have also had a hysterectomy at the age of 29) and she just looked at me and said it wasn't necessary.

Now, I am thinking, that I should have pushed much harder.

I just started seeing an orthopedic doctor last wednesday, due to needing help strengthening my left side after suffering a lacunar infarct in Nov. of 2004. This fracture on my right side is leaving me a bit disabled.

Celiac is a serious, life threatening, possibly disabilitating disease. Are there any doctors out there that truly understand this disease and all its ramifications?

I am only 35, and I am strong---but my body is really taking a beating. I don't know what to do anymore as far as being wise about being as healthy as I can be. I am gluten free, but went so long misdiagnosed, that I am afraid it has shortened my life.

i am frightened too. malnutrition for so long. three broken ribs in the last year with very little pressure at the time the incidents. i haven't been healing as well as i thought i would very little weight put on. i still have a lot of nerve ataxia even when i'm not contaminated. i don't have any stamina to speak of yet. psychologically it is wearing me down. i'm still blaming myself for all my shortcomings. the light at the end of the tunnel doesn't seem to be getting any brighter. but someone wrote that it gets harder before it gets easier i didn't understand it then but i think i do now. i know the body will repair itself eventually, i just hope that being undiagnosed for sooo long hasn't left me with irreparable damage. keep your chin up it's all can do good luck :D

kbtoyssni Contributor
kbtoyssni
Posted

I feel that I'm the one who has to do all the research on the ramifications of the disease so I can make sure I'm getting the right treatment. Most people your age wouldn't need a test for osteoporosis, but for a celiac I'd recommend it. You're young enough that you may be able to reverse some of the symptoms.

dbmamaz Explorer
dbmamaz
Posted

I dont have anything really to add, but I just want to say that its so much easier to be scared and down and even feel hopeless when you are sick or injured. You will feel better when this is behind you. Do get pushier w your doctor, bring a freind if it helps, or find a new doctor you feel more comfortable with. You cant look back you and only move forward and do your best to take care of yourself.

babysteps Contributor
babysteps
Posted

although time consuming, sometimes taking a more direct role in your own healthcare is often helpful from the sense of control alone, much less from the (hopefully) more targeted care that should result.

Some drs are open to being educated - if so, gathering a few studies could help. Another approach is to network via local celiac group and/or friends - just tell everyone you talk to that you're celiac & looking for an informed dr. If you have any friends who are nurses (or other healthcare professionals) they often have great insights, too.

Also, for some tests, you can get them yourself w/o Dr referral - IF you have the $ or time to hassle insurance directly for coverage - in our town last week a for-profit company offered 4 "wellness" tests for I believe $120 total, one was a bone density test (via ultrasound? at the ankle). They did this at a local church. [company was Lifeline Screening, the appointment # was 877 547 1583]

Hope you feel better soon and heal quickly!

itchygirl Newbie
itchygirl
Posted

I had a spinal compression fracture (at 40) from osteo before being diagnosed.

Ursa Major Collaborator
Ursa Major
Posted

Kara, that sounds like a pretty bad fall, and you might have broken your pelvis even if you didn't have celiac disease.

I broke my ankle six years ago by just going over on it when stepping on the edge of a driveway. But I had a bone density scan done two years ago, and my bones are strong and healthy. So, I can't blame my fractured ankle on celiac disease. My problem is very weak ankles and wrists.

If you have a scan and it shows osteopenia or even osteoporosis, DON'T let the doctor talk you into taking those drugs that are supposed to make your bones denser. They are big trouble. Not only are they very hard on the liver (needing monitoring), but they stop your bones from renewing themselves. Which makes them look denser on scans, but older bone cells are more brittle. And the worst thing is, that those drugs have been shown to sometimes cause necrosis of the jawbone! Which is VERY frightening for the people who get it and disfiguring, too.

At your age you could arrest osteoporosis by taking vitamin D, magnesium and calcium and avoiding gluten. In fact, it may even completely reverse. But as I said, you don't necessarily have a problem with osteo yet.

Dennis, are you still consuming dairy and soy? Those could cause some of your ongoing problems. Also, have you been tested for deficiencies? You should have that done as soon as possible, so you know where you stand nutritionally, and know where to supplement.

How long have you been gluten-free?

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    • knitty kitty
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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