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Two Doctors, Two Diagnoses


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10 replies to this topic

#1 Dnwestover

 
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Posted 19 February 2013 - 01:32 PM

I'm a little frustrated today.  About 6 months ago my endocrinologist requested the celiac blood tests.  I don't know what she requested or what my results were, but at the time I was told they were negative.  Then 6 months later, I am still not absorbing my Synthroid the way I am suppose to, so my endo sends me to the GI doctor.

 

I had my endoscopy Feb 11.  My endocrinologist called me the results today and told me that my results were positive for "early celiac disease".  The GI doctor called later and told me my results showed a gluten intolerance but not celiacs at all. When I questioned what my endo had said he back tracked and stated if my blood work would have been positive he would have given me the diagnosis of Celiac's Disease.  I asked him to get copies of the said blood work from the endo and call me back.

 

I'm frustrated by the two differing diagnoses. Although I know in the end, the result is the same for me.  Off gluten I go. 

 

Has anyone else ever had a biopsy showing early celiac's disease and not gotten a diagnosis?


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#2 gatita

 
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Posted 19 February 2013 - 04:35 PM

That must be making you crazy! Can you get a copy of the biopsy report? If it shows signs of villi damage, I'd go with the celiac diagnosis myself.

 

As far as I know, there is no biopsy finding that can indicate "gluten intolerance but not celiac."

 

There are a few other rare causes of villi damage (certain parasites, for example) but non-celiac gluten intolerance isn't one of them. Maybe it's time for a new GI doc... where oh where are the enlightened ones?


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Diagnosed with wheat hates me 4/13


#3 pricklypear1971

 
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Posted 19 February 2013 - 06:10 PM

There's a good chance only one celiac blood test was run. There are several.

Get the lab results and see. In the interim, stay on gluten and if the results are missing tests, request they are run ASAP. Then get off gluten.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#4 nvsmom

 
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Posted 19 February 2013 - 06:35 PM

Traditionally, as i understand it, a celiac diagnosis based on a biopsy had to include total villi destruction; If the villi weren't totally  flattened and "merely damaged" doctors would not consider it to be celiac... perhaps that is what is happening with your doctor... You have one of those stone-age doctors who doesn't stay on top of current thinking. :huh:

 

Perhaps look into whether all blood tests were done before going gluten-free, as the others suggested.

 

Good luck!


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#5 Lisa

 
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Posted 19 February 2013 - 06:39 PM

Request (demand) your lab work..but I would, personally like to welcome you to the Club! :)


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#6 Dnwestover

 
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Posted 20 February 2013 - 05:40 PM

Thanks everyone.  My endocrinologist states she views my diagnosis as celiac disease as there was damage to the villi and the biospy report states that it is consistent with early celiacs disease.  It's the GI doctor that isn't wanting to give the diagnosis.  After talking with him I have decided he doesn't understand much about Celiac's/gluten intolerance.  He was suppose to call me back today, but of course, he never called.

 

I have already had a total thyroidectomy due to thyroid cancer secondary to Hashimoto's Thyroiditis. I also have vitiligo.  So I already have a few autoimmune disorders.


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#7 Dnwestover

 
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Posted 20 February 2013 - 05:50 PM

That must be making you crazy! Can you get a copy of the biopsy report? If it shows signs of villi damage, I'd go with the celiac diagnosis myself.

 

As far as I know, there is no biopsy finding that can indicate "gluten intolerance but not celiac."

 

There are a few other rare causes of villi damage (certain parasites, for example) but non-celiac gluten intolerance isn't one of them. Maybe it's time for a new GI doc... where oh where are the enlightened ones?

 

 

My biopsy showed blunting of the villi, but not totally damaged.  It also showed that I had numerous leukocytes in the biopsied tissue.  That is why he wants to give me the gluten intolerance instead of celiacs disease diagnosis.  I'm leery to not get a true celiacs diagnosis now, because I have gone off gluten already.  My cancer diagnosis was missed for 18 months because my test were inconclusive and my doctor thought, "it's probably just messed up hormones from having a baby 6 months ago."    I am the queen of inconclusive testing. 


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#8 GottaSki

 
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Posted 20 February 2013 - 06:09 PM

My biopsy showed blunting of the villi, but not totally damaged.  It also showed that I had numerous leukocytes in the biopsied tissue.  That is why he wants to give me the gluten intolerance instead of celiacs disease diagnosis.  I'm leery to not get a true celiacs diagnosis now, because I have gone off gluten already.  My cancer diagnosis was missed for 18 months because my test were inconclusive and my doctor thought, "it's probably just messed up hormones from having a baby 6 months ago."    I am the queen of inconclusive testing. 

 

Welcome Dnwestover!

 

Did you receive a written pathology report in addition to the endoscopy report from the doctor?  It may provide important info.

 

I'm jumping in here without reading if you posted other stats -- blood tests etc.

 

Did you have all celiac antibody blood tests:

 

Total Serum IgA

tTG - IgA and IgG

DGP - IgA and IgG

EMA

AGA - IgA and IgG (optional if you had DGP)

 

Any nutrient testing:

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc?


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 troykm

 
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Posted 20 February 2013 - 06:44 PM

Here in Australia most specialists and GP's don't put much faith in the blood tests as i have been told by all of them (the ones i see or have seen) that they are all too inaccurate for a diagnosis. I have also read with regards to the biopsy, in Australia they now view no villi damage BUT hight lymphocyte levels as early celiac disease. The basis being while there are some other things that cause villi blunting, none of them cause BOTH villi blunting and high lymphocyte levels other than celiac. 

 

Just in my family there are 4 biopsy diagnosed celiacs with positive gene tests. Only one of us had a + blood test. My current GP said she wont even bother with the blood tests anymore she just refers straight to the GI specialist for biopsy. Her method is "if you are going to rule something out, you have to rule it out, not guess it out. The blood tests are guessing" in her opinion


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#10 GottaSki

 
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Posted 20 February 2013 - 06:55 PM

Hi Troy!

 

On the Marsh Scale -- the first two stages are not specific to celiac disease, but if they are present with symptoms -- well, you do the math.

 

The reason I brought up both written path report and blood tests run is....often the diagnosis of Celiac Disease is NOT simple.  Many of us have to use all tests available before our docs even suggest biopsy.  I had positive blood, deficient nutrients, more symptoms than one should have to endure along with positive gene testing and Total Villi Atrophy at age 43....would not want anybody to wait as long as I for a diagnosis.  My kids all have mostly negative blood -- only positive genes and symptoms.  Should they have waited until they became as sick as I to remove gluten -- I think not.

 

Here is a basic explanation of the Marsh Scale used to type Celiac Disease.

Stage 1, the cells on the surface of the intestinal lining (the epithelial cells) have more lymphocytes (white blood cells) among them than normal - Stage one is not specific to Celiac Disease.

Stage 2, the changes of Stage 1 are present (increased lymphocytes), and the crypts are larger than normal. 

Stage 3, the changes of Stage 2 are present (increased lymphocytes and larger-than-normal crypts), and the villi are shrinking and flattening (atrophy). There are three levels of Stage 3:
3A--Partial villous atrophy
3B--Subtotal villous atrophy
3C--Total villous atrophy

Stage 4, the villi are totally atrophied (completely flattened) and the crypts are now shrunken, too.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 mamamonkey

 
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Posted 22 February 2013 - 06:16 PM

My endoscopy and biopsies after 5 months gluten-free showed increased interstitial leukocytes (I did eat gluten the week before the testing, but not a whole gluten challenge). With this and my positive dietary response (see my sig for why I went gluten-free to start), my GI dx'd celiac. I wish my PCP (not my current one) had let me go to GI Dec 2011 when my symptoms were at their peak. I think I would have had positive blood work and a positive biopsy then. But, it didn't work out that way so here I am. 


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Hi, I'm Melissa

Mostly gluten-free 5/12 in an attempt to help migraines

Surprise! All my GI symptoms resolved (that I was blaming on not having a gallbladder)

EGD 1/13; biopsies showed inflammation suggestive of partially treated celiac

Bloodwork negative (of course, I was gluten-free)

GI dx'd celiac 1/13





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