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kelly97

Member Since 03 Sep 2012
Offline Last Active Apr 07 2013 07:24 AM
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Posts I've Made

In Topic: Newly Diagnosed And Have No Idea What To Do Next

22 October 2012 - 07:29 PM

I was diagnosed about a month and a half ago, similar to how yours went. I was having an endoscopy & colonscopy to look for cancer. While they were in there, they discovered the Celiac's by how it looked and multiple biopsies (my doctor's words to me, "You meet the gold standard for celiac's"). My doctor told me to switch to gluten-free (which, like you, I had already been eating somewhat gluten free already). At that point, he also ran a celiac panel and some other tests for celiac's. The bloodwork came back negative. I also had a capsule endoscopy 2 or 3 wks ago. That also came back showing nothing. I went back for a follow-up and now my doctor was saying that it looks like everyting is normal. My GI doctor doesn't know what to think and just shrugs his shoulders.

He also was nonchalant about follow-ups. In fact, he told me that GI doctors typically don't treat or follow patients who have celiac's. Maybe we're seeing the same doctor. LOL

I just don't know what to tell you. Because what if you really do have celiac's, yet your bloodwork, comes back negative? And your doctor is like mine, where, basically, if it's negative then more than likely it's not celiac's?

Good luck with everything.
-Kelly

In Topic: Celiac's & Pathology Of Crohn's?

19 October 2012 - 04:41 AM

Thanks everyone.
Yes, I had an endoscopy & colonoscopy looking for cancer tumors. They also discovered by biopsies & how it looked that I have Celiac's. The report said something like duodenal mucosa with abnormal villous architecture & increased intraepithelial lymphocytes. And with my colon, something like colonic mucosa with crypt architectural distortion.

When I went in to see him, he said I meet the gold standard for Celiac's then wanted to do some serology to see if I test positive for it. The labs came back negative. However, once I switched to gluten free, I realized I was already pretty much eating gluten free already.

I just went in for a follow-up visit to discuss my labs & how my gluten free diet was going. He came into the office & said that everything looks normal. Then I reminded him that he told me last time that I met the "gold standard" for Celiac's - then he looked confused & looked at my paperwork. Then he said, but my labs are normal. Then, actually, I was the one who asked him about the crypt, and he said there wasn't anything wrong with my crypt. I told him that I read it in my report. He looked confused again & read back thru the pathology report & agreed, that, yes, I do have colonic mucosa crypt architectural distortion (this guy is starting to sound not so smart to me).

Anyways, He just shrugged his shoulders & said that he didn't know that they're all AI, so anything can happen. Then said to keep eating gluten free then he'll re-run my labs. I asked, why re-run them when they're already showing normal? He said just to make sure I'm continuing to eat gluten free.

Thanks to this forum, after I left, I remembered someone talking about a gluten challenge. I called the doctor's office & asked if I could do this. They called yesterday - so as of right now, I'm on a gluten challenge for 4 wks, then he'll re-test me & do a HLA gene test - however, I have family members with Celiac's, so I'm sure I'll pass it.
Not sure what he'll say if my labs are negative again. (Sorry for the long post - I'll try not to do this in the future).

IrishHeart, thanks for the kind words about my parents & my MS (actually, I have an IrishHeart as well). :)

In Topic: Celiac's & Pathology Of Crohn's?

18 October 2012 - 04:41 AM

Yeah, I don't understand why a GI doctor wouldn't know what to do and tell me what I have 100% for sure. And why he would tell me that they don't typically treat patients with Celiac's when the Univ of Colorado Hospital states on their webpage why you should go there - because of their expertise in diagnosing and treating patients with Celiac's. They're the ones that are supposed to be the "experts" in this. Makes me say, "Hmmmm..." Perhaps he didn't like my Golden Gate Bridge t-shirt I was wearing. <_<

With the MS, they're pretty sure it really is MS. I have lesions in my spine and brain and T1 black holes in my brain. My neuro at the time said that, typically, lesions in your spine are from one of 3 things - a tumor, transverse myelitis, or MS. Although, I also have a lot of joint, bone, tisse pain, as well.

I'm not sure who to see next - I'm on the hunt to find a good doctor in all fields - neurology, internal medicine, oncology, and gastroenterology.
Both of my parents died very young from cancer and digestive issues. And it's because they were both kept being told by doctors that nothing was wrong.

Thanks for your post. :)

In Topic: What Type Of Doctor?

17 October 2012 - 04:26 AM

Thanks everyone for your answers. I haven't made an appt, yet, to see my primary care doctor. Basically, because I think she's an idiot and when I'm done with all of this (my oncology stuff), I'm getting a new doctor. When I told her that I was losing all of this weight - dropping from about 120lbs to now 92lbs, she told me that I just wasn't eating enough and I needed to eat a lot more calories than I already was. When my onclogist had me see the dietician at the Cancer Ctr, she told me that I was already eating more than 40% more than I should have to eat based on my weight, height, activity level, age, etc.

And, like you all brought up, I'm learning that not all doctors are familiar with Celiac's. When I went to my neurologist last week for a follow-up for my MS, & told her about the Celiac's - she said, "So then you can't eat whey?"

Thanks again,
Kelly

In Topic: Diagnosis Without Positive Bloodwork? Fever?

23 September 2012 - 11:02 AM

Thanks everyone for replying. I'll make sure to bring up to my doctor that my diet hasn't really changed that much now that I'm "gluten-free". Then, maybe he'll see that could have effected the results of the blood tests that I had for it.

They're also working me up for cancer, so I'm really not sure if it's Celiac's or cancer with regard to my constant intermittent fevers every day. But it is interesting to find out that others with Celiac's have fevers, too.

Now, if I could get my hips to stop hurting like crazy.....

Thanks again,
Kelly