Do you have an official diagnosis?

ostrich · Joined: 30 Mar 2006 Posts: 5109 Location: Nebraska

What Colleen said in this thread made me curious. How many of you have an official CD/gluten intolerant diagnosis?

Note: This is not meant to be an argument about having/not having a dx. That thread is over here.
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cruelshoes · Joined: 23 Sep 2005 Posts: 3561 Location: Washington State

I answered yes because I have a diagnosis via bloodwork and biopsy.

BTW - what I said in that other thread was in no way intended to imply that having a diagnosis is what everyone wants or needs. Results based on adopting the GF diet are just as valid as the bloodwork and biopsy are. It is possible to go GF without any testing at all and be very successful. I was referring to the "gold standard" diagnosis - positive bloodwork and positive biopsy leading to a physician rendering a diagnosis. Many people go GF without the biopsy.

If what I said was inaccurate or offensive, I apologize. That was not my intention. What I was trying to do was demonstrate that a diagnosis is not needed or important by everyone, but it is by some people.

I almost feel like I started another religious discussion! Don't anybody flame me! **ducking behind a desk**
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-Colleen

Where are we going, and what am I doing in this handcart?

aklap · Joined: 02 Oct 2004 Posts: 10974 Location: WI, USA

Hehehehee I was wondered how long it would take before a poll was started Very Happy

Didn't we do a poll before?

No Official DX for me. Blood test [yeah only 1 blood test was done. I was GF already and it was done w/o my knowledge] and biopsy were "normal".

Dietary trial did the trick
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

Kathie · Joined: 27 Jan 2006 Posts: 1063 Location: Florida

My diagnosis was by biopsy, there were no blood tests back in the dark ages when I was diagnosed. Rolling Eyes

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CD by Biopsy 3/25/88

nancw · Joined: 04 Oct 2006 Posts: 1281 Location: Denver, CO

I do not have a diagnosis, but we'll see if that changes somehow after all my testing this week. Dr. Lewey will be taking lots of biopsies and who knows what my villi look like, even after 16 months GF. I'm eager to get back the genetic testing as well. Maybe my response will change. Can I come back and take the poll again? Wink

edited to add: I think I may have spazzed this morning and said I do have a dx. Sorry to skew the results! Confused

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Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

ostrich · Joined: 30 Mar 2006 Posts: 5109 Location: Nebraska

I was in zombie mode this morning and accidentally voted yes. My bad. I do not have an official diagnosis.

I don't think you offended anybody Colleen. And I don't want this to be a flame war. Smile

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Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

aklap · Joined: 02 Oct 2004 Posts: 10974 Location: WI, USA

Colleen, I didn't take your post that way at all. I thought it was fine.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

kb9oyo

I didn't have any insurance when I got tested by U of C at their annual screening. I was being treated by Cook County Hospital for something else when the results came in. They looked at the results (27 when anything more than 4 is positive for CD) and said that there really wasn't much point in pursuing it further because of the cost. I should just adapt the GF lifestyle. Rolling Eyes

Sue B.
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Sue Beyer

bud7-10 · Joined: 05 Jul 2006 Posts: 187

I voted yes.

I was dx'ed by my integrated medicine doc. I was tested using blood work only.
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Wheat-free and egg-free since 10/1999.
GF since CD dx 5/2005.
Many food alleriges

hangininthere · Joined: 24 Jan 2007 Posts: 30 Location: USA

I voted no.

I think I'm 'just' gluten-intolerant, since I didn't lose weight in the eight years I was so extra sick til I discovered a year and a half ago that getting off gluten (and soy) made me feel so much better.

(I'm still bedridden though with severe Chronic Fatigue Syndrome and bipolar depression, been nine years bedridden, but resting much more comfortably now off gluten and soy, instead of feeling like I'm dying - going gluten and soy free gave me just enough strength to make it out to the kitchen for the first time in all those bedridden years to cook and bake me and son's special diet, big improvement that I got back into the kitchen.)

I discovered I was gluten-intolerant a year and a half ago when my son suddenly got deathly ill from gluten (he had lost a lot of weight in the previous three years before he had the sudden reaction of vomiting), then he got down to the bone the first few months off gluten, not sure if he's 'just' allergic or has Celiac, because he wouldn't go get tested when it first happened a year and a half ago, and I'm too chicken to get any invasive testing myself, but he did waste away, it was frightening.

Plus, there's no way him or me want to get back on gluten now for the testing anyway, he would have a violent reaction right off the bat to gluten, with vomiting and chills and extreme weakness for an hour after he eats gluten (which makes me think he's 'allergic', an anaphylactic shock type reaction), and I would get my horrible brain-fog and depression and deep flu-like achiness head to toe right off the bat again.

And now when I have a rare accidental glutening, I also get severely nauseated along with my other reactions, but haven't vomited nor gotten chills and weakness from it like son does. My accidental glutening reaction has gotten worse since off gluten, as often happens when body is cleared nicely of it.

I wish me and son could get an official diagnosis, but no way we're gonna eat glutens anymore, and I can't get him to go to doctor anyway (or myself, ha).

Best wishes to all.

NorthernElf · Posted: Fri Oct 05, 2007 8:42 am Post subject:

I voted no - my story is about the same as Al's.

Rolling Eyes

Linda · Posted: Fri Oct 05, 2007 12:25 pm Post subject:

I voted for Ty.
Positive bloodwork, positive biopsy.
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Mom of Ty (he's ten) who was diagnosed by bloodwork June 2005, biopsy August 11, 2005, notified on & started GF August 18, 2005

Dan · Joined: 01 Apr 2007 Posts: 64 Location: OKC

I voted you, however I don't think its official. I did the Entrolab test by Dr Fine. Mostly I just wanted to verify that I was really on the right track with my diet, being screwed around with by Drs for 15 years. The good now is my current Dr was watching my liver protiens for a couple years because the where elevated, within a couple weeks of going gluten-free they went back to normal. I hate to think they would of just let it get to the point I needed a liver transplant.

krisiw · Joined: 23 Sep 2007 Posts: 104 Location: Colorado

I voted no. I didn't have insurance at the time I suspected a gluten sensitivity, so I just went off of it. Now I kind of wish I knew if it was CD or an allergy, but it's too late. I don't care too much cause I feel tons better. Most of the time.
krisiw

luvscowznh · Joined: 23 Dec 2004 Posts: 423 Location: Groton, MA

Yup - I have an official Celiac diagnosis. After going from Dr to Dr - first one said "You have IBS. There's nothing we can do - you're just going to feel sick and that sucks. Here - take some anti depressants. They won't help your symptoms, but at least you won't be depressed about being sick all the time...." (more or less...) Second one (a GI) said that since the symptoms got worse during certain parts of my cycle, that it must be a female problem and I should go see my gyno. (Gyno did a laproscopy and found nothing wrong.) I kept trying docs until I met my current nurse practitioner who suspected almost immediately what was wrong. A blood test and colonoscopy confirmed it July 2003. Mine was a fairly short diagnosis - only about 2 or 3 years of symptoms.
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