[alevoy18]

Hi,

Long story short, my red blood cell counts have been ranging from low-normal to mild anemia over the last 4-5 months, HB flucuates between 110-140, RBC between 3.6 - 4.5 and HCT between .355-.412. Lately all three have been better and on the higher end of the reference I gave, so right at borderline low. 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 celiac disease?

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. I just don't feel that bad overall and I eat a lot of wheat products, mixed with good levels of B12 & ferritin, I'm just surprised to see celiac come back positive. Any help is apprecated, Thanks in advance.

[mushroom]

alevoy18, on Nov 16 2009, 10:30 AM, said:

Hi,

Long story short, my red blood cell counts have been ranging from low-normal to mild anemia over the last 4-5 months, HB flucuates between 110-140, RBC between 3.6 - 4.5 and HCT between .355-.412. Lately all three have been better and on the higher end of the reference I gave, so right at borderline low. 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 celiac disease?

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. I just don't feel that bad overall and I eat a lot of wheat products, mixed with good levels of B12 & ferritin, I'm just surprised to see celiac come back positive. Any help is apprecated, Thanks in advance.

Hi, and welcome to the forum.

First of all, not all celiac sufferers have low levels of nutrients though most do. Secondly, I would not call your B12 and ferritin levels "good". Yes, they are within the so-called normal range, but most of us find that we need to be at or near at least mid-range to feel at our best. My B12 and D were both low normal, but supplementation has made an enormous difference to my health.

Lots of doctors, and not necessarily bad doctors, ignore results that are just slightly out of range also, without taking into consideration that most of the normal ranges are probably too wide anyway.

False positives on the celiac blood test are practically unheard of; false negatives are common, so I would accept the diagnosis as accurate. If your endoscopy comes back negative, it can mean that they missed the damaged areas, or that your are non-celiac gluten intolerant or else you would not be making these antibodies to it. Whether celiac or gluten intolerant, the treatment is the same--avoid gluten.

I am not familiar with the "retic" count and its significance so can offer no help there. But to consistently be that much out of range would indicate that something needs to be addressed--I have no idea what, sorry. I had a mean blood cell volume that was consistently out of range, though not by much, and my doctor kept brushing it off. This was rectified with B12 and folate supplementation.

Lastly, lots of people are surprised to be diagnosed with celiac, some of those diagnoses coming about almost incidentally, because they said they had no symptoms. Also, most of use used to eat a lot of gluten products before we knew what we were doing to our bodies. So you are really not alone or that unusual.

Good luck with your biopsy and let us know the results.

[alevoy18]

Thank you for the reply, that was very informative. A little of me is in doubt as I don't want to deal with it, but you are right, a positve test is likely accurate. Besides, it could be a lot worse than celiac disease. :-) Any other input is appreciated as well.

[ravenwoodglass]

alevoy18, on Nov 16 2009, 04:05 AM, said:

Thank you for the reply, that was very informative. A little of me is in doubt as I don't want to deal with it, but you are right, a positve test is likely accurate. Besides, it could be a lot worse than celiac disease. :-) Any other input is appreciated as well.

Welcome to the board. I couldn't put it any better than the previous poster and agree fully. I would start supplementing your B12 in a sublingual gluten-free form. It can take a while for the blood levels to get down to the bottom of the scale after your body stops being able to absorb and process it properly. In addition if you take a multi with folate that can cause the B12 to read higher than it actually is.
It sounds like you have a good hematologist to think of looking for celiac. Do be sure to keep eating glutn until after the endo if you are having it done. The day of the endo should be your last day on gluten, you don't need to wait on the results before starting the diet.
You have found a good place for info and support and I hope your issues resolve soon.

[alevoy18]

Hi,

Thank you both for your replies. I just called my doctors office and set up a consultation for this week, endo will be soon. I got my test faxed to me today, the results were:

tTRANSGLUTAMINASE IgA - 56 (reference range < 20)

Does this sound like a strong positive to you guys or is this a weak positive. It looks pretty high, but the test and numbers don't mean much to me.

Thanks

[GottaSki]

It is a strong positive compared to my tTG IgA of 23 upon diagnosis. I was a weak positive but confirmed celiac by biopsy results and major damage/atrophy to my villi.

As previously stated, don't stop eating gluten until your endoscopy is done. Once gluten-free you may find a number of miscellaneous symptoms improve or disappear -- this is when the gluten-free diet becomes easier -- I was slightly doubtful of my celiac diagnosis at first because there are so many contradictory symptoms (either D or C - either weight loss or gain, etc, etc, etc), but couldn't argue with the changes to my digestive system once completely gluten-free.

Welcome!

-Lisa

forgot to mention my B12 was 250 along with other lows of Iron, Ferretin, D, K, copper and zinc at dx all have started to come up since gluten-free

[alevoy18]

I go for my biopsy next Monday, I hope it confirms everything, so I don't have to be in the limbo of a strong positive tTg and a negative biopsy. If this is the case, should I still stay off gluten or am I safe to eat gluten if the biopsy is negative.

I have a nerve biopsy on Monday as well because 2 of my 3 small nerve fiber tests came back showing neuropathy. I also have a pace maker due to bradtcardia and I take medication due to low blood pressure. I am only 23 and am very healthy, this bad news after bad news has set my emotions all over the place. My GP thinks that celiac disease is my answer to why all this bad stuff has happened. It is great to have an answer, but I fear the biopsy will be negative and I wont have an answer anymore.

Is it possible for celiacs disease to cause all this like my dr thinks and wouldn't I have lower vitamin levels (Iron 50 on scale of 28-300 and B12 at 260 on scale of 130-700) and have a higher tTG than just 56? I have lots of small symptoms such as stomach pains, gas and sometimes diarhea. My anemia was not iron defiecient, so that can't be related. It just seems I would be worse off on the numbers if celiac caused my serious problems. Anyways...I just hope the biopsy confirms it or I am back at square one. Thanks for all the input!!

[ravenwoodglass]

alevoy18, on Nov 16 2009, 09:29 PM, said:

I go for my biopsy next Monday, I hope it confirms everything, so I don't have to be in the limbo of a strong positive tTg and a negative biopsy. If this is the case, should I still stay off gluten or am I safe to eat gluten if the biopsy is negative.

I have a nerve biopsy on Monday as well because 2 of my 3 small nerve fiber tests came back showing neuropathy. I also have a pace maker due to bradtcardia and I take medication due to low blood pressure. I am only 23 and am very healthy, this bad news after bad news has set my emotions all over the place. My GP thinks that celiac disease is my answer to why all this bad stuff has happened. It is great to have an answer, but I fear the biopsy will be negative and I wont have an answer anymore.

Is it possible for celiacs disease to cause all this like my dr thinks and wouldn't I have lower vitamin levels (Iron 50 on scale of 28-300 and B12 at 260 on scale of 130-700) and have a higher tTG than just 56? I have lots of small symptoms such as stomach pains, gas and sometimes diarhea. My anemia was not iron defiecient, so that can't be related. It just seems I would be worse off on the numbers if celiac caused my serious problems. Anyways...I just hope the biopsy confirms it or I am back at square one. Thanks for all the input!!

As soon as the biopsy is done go gluten free, don't wait for the results. A tTG of 56 is rather high, it is not a low positive. Your B12 levels are on the low side, it would be helpful if you had previous B12 testing to compare it to as then a drop off in levels would be more obvious. Mine was tested repeatedly over the course of a couple of years, I was clearly celiac so the tests were run over and over but unfortunately I am one who doesn't show up in blood work and doctors just kept going off the false negative panels for diagnosis so it took over 40 years for me to finally be diagnosed. My B12 droppped from close to 400 to 210 over the course of a couple of years and my nerve damage was severe by the time one of those doctors told me to start supplementing.
DO NOT go off the biopsy results if they are negative or 'inconclusive', there are often false negatives in the biopsy also as we have 22 ft of small intestine and the damage can be patchy and it can be missed.
DO go off your bodies reaction to the diet followed strictly. IMHO your body will give you the answer, if you are strict and give it a good try.

[alevoy18]

Hi,

Thank you for your reply, that is very interesting. I've had a couple doctors look at my B12 and Iron and never mention it being low. I agree though, on the total scale, it is not an optimum number. B12 has ranged between 250-270 and IRON has only been done once, 2 month ago and it was 50. Has anybody else experienced symptoms with their iron or b12 low, should I ask my doctor about this?

[mushroom]

mushroom, on Nov 16 2009, 10:56 AM, said:

My B12 and D were both low normal, but supplementation has made an enormous difference to my health.

Quoting myself here, from the first response to your thread.

[alevoy18]

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.

[mushroom]

Whoops, double post, edited out by Mushroom.

[mushroom]

The reason they take biopsies is so they can look under the microscope for what they can't see with the naked eye. The first assumption you can make is that you haven't done too much damage to your small intestine. Until you get the biopsy results you can't make any other assumptions.

However, I think your doc is dead wrong in telling you that with a tTG score of 56 it is okay for you to eat gluten You are making some serious antibodies there and if you have not yet reached the point pf celiac you are at least gluten intolerant. Many of us believe that this is the first step on the celiac path and if you keep eating it long enough you will eventually become celiac (that is, become sufficiently damaged to convince the doc ) Also bear in mind that there are many false negatives on biopsy (and bloodwork) but false positives are practically unheard of.in either. Many doctors will diagnose on the basis of positive bloodwork alone; the biopsy was originally the only way of diagnosing celiac before the blood test was developed.

Regardless of the biopsy results you should give the gluten free diet a trial and see how you respond. You may find you feel so good you wouldn't dream of going back to it, and if you really wanted a diagnosis for sure then you can do a gluten challenge after being gluten free for a few months and see how you respond to that. If I were you, I would give up the gluten for sure, regardless of what the doc says.

[alevoy18]

Hi, Thanks for your response.

What is the gluten challenge, is this another way to get him to give me a true diagnosis?

I am just frustrated today as my doctor has been confusing. My doctor before hand mentioned to me that the blood test is specific to celiac and couldn't really think of any other reason it would be raised that high, except with celiac. Then he began to say he would not take me off gluten unless the biopsy comes back...it seems quite foolish. He is the type who follows the gold standard of biopsy only.

It also doesn't make sense to me why he would tell me, everything looks perfect in there, no signs of damage. Then when I ask if I am likely not celiac, he says I think you probably are. ?? Seems like he is contradicting everything he says. I just want a diagnosis so that I know I am not stopping glutten forever when it may not be needed. I think if the biopsy comes back negative, I will try gluten-free for 3-4 months and see how I feel. If i feel better..I will stay on it, if not I will assume he was right.

Is there any other way to get an official diagnosis if the biopsy is negative with such a high ttg level (other than a challenge). I guess I could find another doctor.

Thanks.

[mushroom]

A gluten challenge is when you have had a positive response to the diet, and then you resume eating gluten for 2-3 days and see how your body responds. If your symptoms come roaring back, you know they are from the gluten. Most doctors will recognize this as at least gluten intolerance, if not celiac, and will give you a diagnosis.