Kat L

Perhaps there was wheatgrass or barley grass in your Odwalla?  Most people do not react, but some do.

Yes, there was wheat grass, barley grass, and wheat sprouts in the Odwalla.  Like I said, it was a bonehead thing not to check.

Yes, my doc did give me a printout of some scope pictures. There's nothing in these pictures that looks like you describe, though the copies I have are black and white. I'll get the full report after the biopsy results are in. To have EE, wouldn't I also have elevated levels of eosinophils in my blood? The results of a blood test from October show that I had 2% eosinophil (relative) and an absolute concentration of 0.3 K/uL.

Thanks everyone!

I contacted my doctor's office and they confirmed that she will only be doing an upper GI and that the MoviPrep was completely in error.  I also asked them to double-check the scheduling with the surgecenter and what they've sent to my insurance company.  

My endoscopy isn't scheduled until December 28th, so they should be able to get it figured out by then.  Though, this kind of thing does nothing to booster my confidence in this doctor or office...  Nothing worse than a surprise colonoscopy!

Hi everyone,

Thanks for your responses. I started a gluten bucket list, and I've been going through it, eating all the things I think I'll miss. For a couple of days I was feeling somewhat better, but that all collapsed yesterday (two of my favorite bakery's english muffins that were going to go stale and a 1/2 a bagel--yeah, not the best idea after all) in the big D and hives, along with an insatiable itch.

The good news is that I got an appointment with a gastro for next week, after being told I'd have to wait until January. I can't tell you how depressing that thought was--that I'd have to suffer like this until January (and beyond, assuming all the tests would not be instantaneously performed).

I am also thinking I may have to change primary care physicians, but I'm waiting until I get in to see the gastro to do so. In the meantime, I've been Googling every symptom I've had over the past 10 years or so, along with the word celiac, and I am shocked that they're all there. Even my hair color may put me at risk--is that me being insane, or is it more insane that nobody's ever connected the dots before this?

Anyway, I'm hanging in there, but not happily. There's a cloud over me, a big dark glutenous mass of a cloud.

Thanks again for listening.

Ruby

Ruby - I'm a very similar situation to you right now. I'm fairly sure at this point that I have a gluten problem (though, the blood tests I had were negative) and I'm counting down the days until my endoscopy (39 long bloaty days to go).

I also put together a bucket list of my favorite gluteny foods, partially to have them one last time and partially to feel like I have some kind of control over the situation. Right now, I am not eating gluten at breakfast or lunch, but making sure to eat it for dinner everyday. That way I pay close attention to what I eat and how it makes me feel. Also, I have less of the brain fog and other distracting symptoms during the day when I need to focus at work. I've found that when I have something I really love and was certain I was going to miss (like jalepeno cheddar bagels) and then feel terrible after eating them, I feel much better about the idea of giving them up. Plus,since I'm only eating gluten one meal/day it's much easier to observe the type of reaction I have to them.

You're definitely not alone. Just keep thinking about the light at the end of the tunnel, where you get to start healing and those symptoms start slipping away...

hey that's so interesting that your doc was concerned about Parathyroid with low D, ihad never heard of that before.
what about a full thyroid check up? have u had that??? so many of us have both Celiac & thyroid disease, and many that are Gluten intolerant or gluten sensitive also have thyroid disease.
Thyroid disease ALSO screws up your digestion- cause you make less of everything-> including stomach acid, pancreatic enzymes, motility , etc

my opinion is that a Vitamin D deficiency often points to Autoimmune Activity... your immune system needs D3 to work properly-> and when you're autoimmune you use it all up.

also- your B12 is TOO LOW.. you should strive to get it above 500 or 600... alot of our "ranges" in the U.S. are way too big and are more interested in Disease Management instead of Healthcare

I hadn't realized that the B12 range was so much broader than it should be.  I figured that it was likely, and really most vitamin results near the bottom of the "normal" ranges are generally suspect.

Re: thyroid disease, I've actually had my thyroid levels checked every year for the past 6 years (at my annual gyno exam and every time a doc tries to figure out what's wrong with me).  This is because, as the story goes, my mom had a lump on her thyroid removed when she was in her 20s.  According to my dad it was just a lump, found not to be malignant, and they didn't know what it was but they took it out along with half of her thyroid and then she took syn-thyroid for the rest of her life.  So, with that in mind, my thyroid hormones are always and thus far have always been normal.  My last TSH result from a little over a month ago was 2.50 uIU/mL.

Re: parathyroid, the parathyroid regulates calcium levels in the blood, and vit D aids in absorption of calcium by the intestines. So, if one's parathyroid is overactive (usually as a result of a tumor) then blood calcium levels in the blood are too high, being leached from the bones, and the body suppresses vitamin D production.  So, after I had the vitamin D-deficient result, I went to an endocrinologist.  Apparently, the parathyroid glands are still a bit of a mystery to many doctors (much like celiac) and in the early 1970s I'm sure doctors were even less knowledgeable. And like celiac, hyper-parathyroidism is also still an underdiagnosed disease.  So, my working theory at the time was that perhaps the mystery lump on my mom's thyroid was actually a parathyroid tumor. (People typically have 4 glands, sometimes more, and their locations can vary quite a bit, including being inside the thyroid entirely).  This was particularly concerning as thyroid tumors, which cause hyperactive thyroid but are not cancerous can be a result of multiple endocrine neoplasia, a disorder that also can cause stomach cancer. And...my mother died of stomach cancer when she was 45.  So, I asked the endocrinologist to check my parathyroid hormone levels and she also did an ultrasound of my thyroid/parathyroid.  All was normal.

I've had broad autoimmune-like symptoms for many years and at several times, doctors have strongly suspected that I had an autoimmune disease but were never able to diagnose it.  None of them had ever suggested celiac to me.  The first time I went through this I was in college. Repeated blood tests showed I had elevated sedimentation rates, despite being otherwise, outwardly not sick.  After months of repeated elevated sed rates and no positive results for the standard autoimmune diseases, I gave up and stopped going back to the doctor.  At that time, I actually had had a surgical steel screw in my foot, and since shortly after I had it put in I became allergic to all of my earings, I figured that I had developed a metal allergy of some sort.  This is pretty consistent with the latex allergy I have, which is not an actual latex allergy but rather a sensitivity to the hardeners in latex products - common in people who have had surgery as a baby.  I figure I'm just predisposed to developing sensitivities to foreign objects/chemicals in my body.

A few years ago, I had an orbital myositis in my right eye.  Basically, one of the muscles that moves the eye swelled to 3-4 times the size it normally was and was INCREDIBLY painful.  It took a few weeks to diagnose properly, but fortunately I was able to see a neuro-ophthalmologist, after having a complete meltdown on the phone with a nurse who squeezed me in right away instead of making me wait a month.  According to the neuro-ophthamologist, orbital myositis can either be an autoimmune symptom or can be caused by a virus completely randomly setting up shop in a muscle.  After 9 vials of blood being from my hand that day, because the lab couldn’t succeed in finding a vein in my harm….all those tests came back negative.  About a month before the eye problem, I had a campylobacter infection (intestinal infection not dissimilar from salmonella – more common in Europe than the U.S. –WOO that was a fun vacation!).  Wanting to make it back to the states by Christmas, I flew back home despite still having crippling intestinal umm…issues.  Not exactly the smartest thing I’ve ever done, considering by the time I made it home I was so dehydrated I had chest pains.  Also, in addition to the food poisoning, I picked up a nice plane-virus.  When the autoimmune results came back negative, it was reasoned that the cold virus took up shop in my eyes, since I was probably pretty immune-compromised at the time.

MSG – 12 years?  Do you know what the relationship between gluten and MSG-sensitivity is?  Beginning about 12 years ago, I started developing weeping rashes on my face and forearms from MSG.

Sorry for rambling on about my various medical mysteries, but it's nice to type it all up in one place.  Or - most if it in one place.  I also have some physical birth defects that have their own set of doctor stories.  One thing is for sure, I’ve seen A LOT of doctors over the years.  Some of them very good and some of them quite terrible.