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

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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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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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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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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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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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