Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Two Doctors, Two Diagnoses


Dnwestover

Recommended Posts

Dnwestover Newbie

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gatita Enthusiast

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?

pricklypear1971 Community Regular

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.

nvsmom Community Regular

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!

Lisa Mentor

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

Dnwestover Newbie

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.

Dnwestover Newbie

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. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

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?

troykm Apprentice

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

GottaSki Mentor

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.

mamamonkey Rookie

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. 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,881
    • Most Online (within 30 mins)
      7,748

    Dan Bryst
    Newest Member
    Dan Bryst
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.