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Old 11-15-2009, 01:51 PM   #1
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Question Celiac Panel Positive, vitamins normal?

Hi,

Long story short, my red blood cell counts have been ranging from low-normal to mild anemia over the last 4-5 months. Due to this, I've gone through tons of CBCs and other blood tests. I was referred to hematologist because my absolute retic has been low at 13 (ref range 25-100) on multiple occasions.

During this time, my hematologist asks that I see a GI Dr first, so I did. I told the GI Doctor that I have had some cramps, diarrhea and gas off and on since I was young. So he sent me for a blood test to check vitamin levels and celiac panel test.

I got a call on Friday and they told me my tests came back positive for celiac's disease (not sure which ones or how high antibodies are, sorry) and that I need to go for a biopsy. I have a few questions I need help with.

1. I was told over the phone that my Ferritin Level came back at 50 (ref range 28 - 300) and my B12 levels came back as 260 (ref range 130-700). Both my levels are good...how can I have celiac's disease with good vitamin levels?

2. How accurate is the Celiac panel and if my biopsy is negative, does that mean I don't have CD?

3. My absolute retic count has been low for months, which means possible a bone marrow supression issue (although HB is not too low...its confusing)...could this be related to celiac's or is this a seperate issue.

I know my doctors are the best to ask, but I wanted to see if anybody has been through something similar while I wait for my biopsy. Thanks in advance.

 
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Old 11-15-2009, 06:27 PM   #2
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Re: Celiac Panel Positive, vitamins normal?

[QUOTE=I was told over the phone that my Ferritin Level came back at 50 (ref range 28 - 300) and my B12 levels came back as 260 (ref range 130-700). Both my levels are good...how can I have celiac's disease with good vitamin levels?

2. How accurate is the Celiac panel and if my biopsy is negative, does that mean I don't have CD?

3. My absolute retic count has been low for months, which means possible a bone marrow supression issue (although HB is not too low...its confusing)...could this be related to celiac's or is this a separate issue.

I know my doctors are the best to ask, but I wanted to see if anybody has been through something similar while I wait for my biopsy. Thanks in advance.[/QUOTE]

1. Blood levels, including vitamins, vary as the disease (and your diet) waxes and wanes. Celiac is an autoimmune disorder, regular AI diseases are notoriously unpredictable, let alone one triggered by diet.

2. A positive panel is very accurate, particularly if tTG and antiendomysial antibodies are elevated. Some negative results can be "false negatives".

Negative biopsies in people who have Celiac are common, unfortunatly. Damage done to the intestinal lining is patchy and often not present in the first part of the intestine. Your GI should take at least six biopsies of the small intestine, the farther down the better.

3. Celiac can cause a low retic count in a number of ways; iron deficiency, folate deficency, B12 deficency, liver inflammation, Anemia of Chronic Illness, etc.

Good luck! I've been gluten free since '05 and I feel much better!

Last edited by Administrator; 03-25-2010 at 07:39 PM.

 
Old 11-16-2009, 04:20 PM   #3
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Re: Celiac Panel Positive, vitamins normal?

Thank you for your reply, the information helps! :-) And thank you for your best wishes, I appreciate it.

I just received a fax from my DR, the results were:

tTg IgA - 56 (ref range < 20)

Is this a weak or strong positive? Just wondering how likely the biopsy is to confirm CD. In a way I hope it does, so I have an answer and can finally move on and get better. Any input on test results is great, thank you!

 
Old 11-16-2009, 07:08 PM   #4
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Re: Celiac Panel Positive, vitamins normal?

Anything over forty is considered a very strong positive. What was your EMA? EMA IgA test has high specificity for celiac disease and is used to confirm positive tTG results - although with a tTG that high they may not need it!


A positive biopsy is 100% Celiac (the blood tests range from 85% to 98%). Finding a gastro doc who's familiar with Celiac disease to take the biopsies is important.

Besides getting a direct 100% diagnosis, biopsies are useful in assessing the damage and monitoring recovery. It can take up to two years for the lining of the small intestine to heal.

 
Old 11-16-2009, 08:06 PM   #5
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Re: Celiac Panel Positive, vitamins normal?

Hi,

The only test he said I needed to do was the tTg. So that is high then? He told me that my biopsy will be this week. Do you know what will happen if the biopsy is inconclusive, will I not have celiacs or a gluten problem?

Thanks.

 
Old 11-17-2009, 10:25 PM   #6
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Re: Celiac Panel Positive, vitamins normal?

I agree with Aunti with the info given. I had normal b12 and my ferritin was 19. Not horrifically low. A good book to get is by Dr. Greene called Celiac Disease. He runs the celiac research center at columbia university. He is very knowledgeable about the disease. The book explains the disease in detail and how to interpret the test results and how to live gluten free and why it is important. Make sure you are eating gluten for several days in a row before the test. You don't want to be off gluten then the biopsy may say your villa looks ok and then you won't have a positive diagnosis. I was off gluten for three months before my biopsy and ate bread for a couple of days before biopsy and the doctor said my villi looked flat but not alot and he said that was because I was off gluten for a while. Good luck with the biopsy

Beth

 
Old 11-18-2009, 08:24 AM   #7
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Re: Celiac Panel Positive, vitamins normal?

A negative biopsy could mean you don't have Celiac or it could mean the doctor didn't biopsy it the right place or that the lab tech who read the biopsy slides didn't know how to read them. (this is common, 95% of people with Celiac remain undiagnosed)


I'm not sure why you're doc didn't do the EMA, it's standard after a positive tTG. A positive EMA would have pointed to Celiac as the culprit rather than other diseases that can cause high tTG, like Crohn's or liver problems. (perhaps he already ruled these out)


Beth made an important point - you must be eating gluten at the time of biopsy (and bloodtests) or you could get a false-negative result.

 
Old 11-19-2009, 11:18 AM   #8
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Re: Celiac Panel Positive, vitamins normal?

Hi,

I just had my endoscopy and biopsy's done. I am a bit disappointed with what the Dr said after the procedure.

He told me everything looked normal in the endoscopy. Before the endoscopy he told me he thinks I likely have celiac's disease with a 56 on the anti-tTG blood test. It is disappointing to me that no villi damage was seen. Makes it seem unlikely the biopsy's will show anything. He also said that if the biopsy shows nothing as well, he is recommending I stay on gluten and wont diagnose celiac.

Is it normal to not seeing anything abnormal on the endoscopy itself...I hope so as I want this to be the answer to my problems.

Thanks.

 
Old 11-19-2009, 09:01 PM   #9
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Re: Celiac Panel Positive, vitamins normal?

You can't "see" microscopic villi. That's like a doc telling you he can "see" bacteria!

It's true that sometimes changes in the mucosal wall can be seen with the naked eye but more often than not there is no visible damage. That's kinda the point of having biopsies in the first place.

 
Old 11-24-2009, 07:47 PM   #10
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Re: Celiac Panel Positive, vitamins normal?

Hi,

Just as an update, the biopsy came back early and the receptionist told me it was positive. I see the Dr this Thursday in his office to go over it. I'm still hoping maybe the receptionist read the results wrong, but I guess they wouldn't call me in so soon if it was negative. Oh well, I will get used to the new diet.

Are there any other tests that I should do, such as lactose tests? Any information on what happens now or what steps I should take would be helpful. Thanks!!

 
Old 11-24-2009, 10:32 PM   #11
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Re: Celiac Panel Positive, vitamins normal?

Congratulations on getting a diagnosis! Now you can work your way to healthy! Good luck.......

 
Old 11-26-2009, 07:58 PM   #12
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Re: Celiac Panel Positive, vitamins normal?

Hi guys,

Well I saw my GI dr today and he gave me a copy of the pathological report from the biopsy. The report said:

Small Intestine Biopsy: High levels of intraepithelial lymphocyte counts with near complete villi atrophy.
Stomach Biopsy: Antral and body-type mucosa show signs of mild inflammation and gastritis.
Helicobacter pylori negative.

He believes I could of had celiac since I was a kid, as I had GI symptoms that went undiagnosed. Does this sound like a normal result or was this quite far advanced celiac? I'm just hoping the intestines can heal quickly, as I hate all the articles about risks of cancer and such. Just wondering if anybody has had results like these to relate. Thanks!

 
Old 11-27-2009, 06:16 PM   #13
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Re: Celiac Panel Positive, vitamins normal?

This is advanced celiac disease, but that doesn't mean your intestine won't heal itself quickly. Everyone is different. The longer you remain on a strict GF diet the lower your intestinal cancer risk will be - it's the constant mowing down then building back up of the intestinal villi, from active untreated celiac, that dramatically increases the cancer risk. Eat GF, allow your intestine to heal, and you'll be fine.

FYI some "normal" grocery store food that says GF right on the label: Chex cereal (Rice, Corn, Cinnamon and Honey Nut). A few Progresso canned soups. Betty Crocker Gluten Free Vanilla or Devil's Food cake mixes, Brownies, Chocolate Chip Cookies and frostings**. Annie's GF Rice Macaroni and Cheese. WalMart's generic brand "Good Value" will say "gluten free" right under the ingredient list if it is GF. Most major grocery stores have a gluten free generic product list PDF on their website.

There's also a national magazine, Gluten Free Living.

**I made a GF Betty Crocker marble cake for Thanksgiving, it was delicious!

Last edited by Administrator; 03-25-2010 at 07:37 PM.

 
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