Is It Possible To Have Celiac Without Anemia Or B12 Defiency?

[captainjacksparrow]

Hey, I am new here.

 

I been having many symptoms celiacs disease, including clasic and non classic symptoms, neurological problems and even Alopecia Totalis (since the age of 19, no eyebrows etc). However, my CBC, Iron and B12 are allways normal. I have had low Iron levels once, when I was a kid, but when I do my routine blood tests each year, theyare fine.. Althoug,  I have had low levels of potasium good few times, but they werent above the norm.

 

 

I recived my CBC, b12, Iron blood results just few days, stil waiting for my antibody results to come back in few weeks.

 

My symptoms I experience are:

 

Frequent infections, colds (every year)

Alopecia universalis (Not even one hair on the body)

Eczemas

Nail problems

Fungal infections

Spots

Frequent nasal bleeds (especially when I was a kid)

Bloating, gas, GERD, fatty stools, diarhea

Enamel problems

Lip sores

Hot flushes

Cold hands and feet

Nasal congestion

Dry skin

Sore eyes

Heat intolerance

Swolen neck lymph nodes

Bleeding gums

Bruising

Blacking out when standing

Dizzines during physical activity

Dandruff

ADD, brain fog, anxiety, severe depression, extreme fatigue, memory problems, panic attacks when I was a kid. etc..

Weight gain and loss

Unable to gain muscle

 

 

So my main concern was, if it is possible to have Celiac without ANEMIA, folate or b12 deffency?

 

 

I really wish it was Celiac, this would mean a possible end of my problems. As I am 23 yo and been feeling like an old man since I was a little kid..

 

P.S. I got my thyroid checked few times and all came clear.Not sure if thyroid tests can show Heshimotos though. My GP thinks that I am a hypocondriac,  so do I sometimes..

[IrishHeart]

It's possible to have celiac without anemia, yes.

For a long time, I did not show B-12 or folate of Vit D deficiencies until I was really sick. 

There are dozens of celiac-related symptoms and conditions and you do not have to have all of them to be a celiac.

You may have a folate deficiency or a Vitamin D or K deficiency (but the tests they did on you will not show those).

 

Your other symptoms speak volumes, hon.  

 

The antibody tests don't usually take a few weeks, you may get word soon. Hang in the there and welcome to the forum!

[Alwayssomething]

I know that you said your vitamin levels are normal, but sometimes just because they are within the normal range on the lab paperwork it doesn't really mean it is suffecient.   If you are the low end of normal, then you can be defiecient.  Also not everyone is the same so one person may feel good with a B12 number of say 200 (the lowest end of normal) and some may feel horrible at that number.   Do you happen to have the ranges and the actual counts. 

 

For me, for some reason I have become more deficient since I have been gluten free, maybe becuase I was getting the majority of those  vitamins as an added ingredient to my breads and stuff in the past???  I don't really know the reason but with my supliments I am back to a nice middle of the line normal range now. 

[captainjacksparrow]

  On 3/20/2014 at 3:17 PM, IrishHeart said:

It's possible to have celiac without anemia, yes.

For a long time, I did not show B-12 or folate of Vit D deficiencies until I was really sick. 

There are dozens of celiac-related symptoms and conditions and you do not have to have all of them to be a celiac.

You may have a folate deficiency or a Vitamin D or K deficiency (but the tests they did on you will not show those).

 

Your other symptoms speak volumes, hon.  

 

The antibody tests don't usually take a few weeks, you may get word soon. Hang in the there and welcome to the forum!

 

 

Thank You! Btw, I am also in Ireland! It is reassuring. I am so fed up with me being sick for so long.But I dont wanna loose hope..

[captainjacksparrow]

  On 3/20/2014 at 3:30 PM, Alwayssomething said:

I know that you said your vitamin levels are normal, but sometimes just because they are within the normal range on the lab paperwork it doesn't really mean it is suffecient.   If you are the low end of normal, then you can be defiecient.  Also not everyone is the same so one person may feel good with a B12 number of say 200 (the lowest end of normal) and some may feel horrible at that number.   Do you happen to have the ranges and the actual counts. 

 

For me, for some reason I have become more deficient since I have been gluten free, maybe becuase I was getting the majority of those  vitamins as an added ingredient to my breads and stuff in the past???  I don't really know the reason but with my supliments I am back to a nice middle of the line normal range now. 

From now on, I will ask a copy of the results. I think I am entitled to it by low..

[NoGlutenCooties]

Hi Captain Jack and Welcome to the Forum!  Argh!

 

Nutrient deficiencies are common but not required.  I have always been "borderline" anemic, but still in the normal range - the doctors always just said that was typical for a skinny white woman.  I have never had any other nutrient deficiencies or even borderline bloodtest results. Even my Vitamin D levels have always been good - even though I discovered I have osteopenia at 40 years of age (hoping to correct that now that I'm gluten free).

[Gemini]

captain jack.........if your GP thinks you are a hypochondriac, then you're a shoo-in for Celiac Disease! 

[cmc811]

  On 3/20/2014 at 2:46 PM, captainjacksparrow said:

My symptoms I experience are:

 

Frequent infections, colds (every year)

Alopecia universalis (Not even one hair on the body)

Eczemas

Nail problems

Fungal infections

Spots

Frequent nasal bleeds (especially when I was a kid)

Bloating, gas, GERD, fatty stools, diarhea

Enamel problems

Lip sores

Hot flushes

Cold hands and feet

Nasal congestion

Dry skin

Sore eyes

Heat intolerance

Swolen neck lymph nodes

Bleeding gums

Bruising

Blacking out when standing

Dizzines during physical activity

Dandruff

ADD, brain fog, anxiety, severe depression, extreme fatigue, memory problems, panic attacks when I was a kid. etc..

Weight gain and loss

Unable to gain muscle

 

The simple answer is that anything is possible with Celiac! My 5 yr old son is currently being tested and he has the symptoms that I made bold in your list. His alopecia is Alopecia Areata, not Universalis, but regardless it's still autoimmune and he was diagnosed at 20 months old when all his hair fell out. We thought he did have universalis initially but after about a year it all grew back and now he just gets the random round patches of hair loss that are classic for the areata presentation. His CBC is mostly normal except for low red blood cell count. His hemoglobin and hematocrit are in the lowest range of normal. All other labs have been normal. He also has asthma, abdominal pain, nausea, chronic constipation and is gaining weight very slowly. His height growth has remained at a steady rate, but he hasn't been gaining weight so his weight/height and BMI numbers have dropped significantly. Doctor thought there was no way he had Celiac, but I tested positive so I am demanding it be looked into further by a pediatric GI. Everyone's presentation is a bit different so it's great that you had the testing done. Your symptoms are definitely suggestive with or without deficiencies.

[captainjacksparrow]

  On 3/20/2014 at 4:30 PM, cmc811 said:

The simple answer is that anything is possible with Celiac! My 5 yr old son is currently being tested and he has the symptoms that I dissappearold in your list. His alopecia is Alopecia Areata, not Universalis, but regardless it's still autoimmune and he was diagnosed at 20 months old when all his hair fell out. We thought he did have universalis initially but after about a year it all grew back and now he just gets the random round patches of hair loss that are classic for the areata presentation. His CBC is mostly normal except for low red blood cell count. His hemoglobin and hematocrit are in the lowest range of normal. All other labs have been normal. He also has asthma, abdominal pain, nausea, chronic constipation and is gaining weight very slowly. His height growth has remained at a steady rate, but he hasn't been gaining weight so his weight/height and BMI numbers have dropped significantly. Doctor thought there was no way he had Celiac, but I tested positive so I am demanding it be looked into further by a pediatric GI. Everyone's presentation is a bit different so it's great that you had the testing done. Your symptoms are definitely suggestive with or without deficiencies.

 

 

Hey, thank You for Your reply.For me the hair loss started when I was 8 years old. I used to get oval bald patches, which used to regrow. When I hit 19 my eyebrow started to dissappear.At the age of 22 I lost all my hair. And now, my naills ar affected.. I did gluten challenge few months ago. I had my hair regrowing after 2 weeks on gluten-free diet. It was just ear hair and facial hair, very small etc.. Then I begged my GP for celiac tests snd told all the stories about the other people that didnt have any classic symptoms and so on, told showed her a full list of my symptoms I experience and had experienced and she agreed to test me for the last time. I said to her that I will focus on my mental health if they will be negative. However, on the gluten chalange my anxiety was out of the roof! I wonder if it was the so called gluten withdrawal. As gluten is like opiate haha..

[captainjacksparrow]

  On 3/20/2014 at 4:19 PM, Gemini said:

captain jack.........if your GP thinks you are a hypochondriac, then you're a shoo-in for Celiac Disease! 

 

 

  On 3/20/2014 at 4:19 PM, Gemini said:

captain jack.........if your GP thinks you are a hypochondriac, then you're a shoo-in for Celiac Disease! 

 

 

  On 3/20/2014 at 4:19 PM, Gemini said:

captain jack.........if your GP thinks you are a hypochondriac, then you're a shoo-in for Celiac Disease! 

Hahah.I know that I am a hypocondriac my self. But like hair loss, infections, bleedings etc..Not sure if hypochondria can be so powerful to create these symptoms.. ha

[GottaSki]

  On 3/20/2014 at 4:44 PM, captainjacksparrow said:

Hahah.I know that I am a hypocondriac my self. But like hair loss, infections, bleedings etc..Not sure if hypochondria can be so powerful to create these symptoms.. ha

 

Sometimes Hypochondria is caused by the failure of many doctors not running the correct tests.

 

Sometimes telling their patients they are perfectly healthy and their symptoms are all in their heads.

 

Sometimes leaving them with actually symptoms for many years.

 

Sometimes it is all in our guts, rather than our heads.

 

and then sometimes folks simply have Hypochondria (but those should have their gut checked too)

 

Welcome to the forum Captain Jack

[IrishHeart]

  On 3/20/2014 at 3:40 PM, captainjacksparrow said:

Thank You! Btw, I am also in Ireland! It is reassuring. I am so fed up with me being sick for so long.But I dont wanna loose hope..

 

 

I do not live in Ireland, capt'n jack. I wish I did. I have been there many times, but I live in the US. 

 

No,no, no...now..come on...do not lose hope!  Please...we're here for you! We've walked in your shoes!!.

Even if that test is negative, you could try a gluten-free diet and get rid of the symptoms.

 

Many people with NCGS (non-celiac gluten sensitivity) have similar symptoms that resolve on a G F diet.

[captainjacksparrow]

  On 3/20/2014 at 8:41 PM, IrishHeart said:

I do not live in Ireland, capt'n jack. I wish I did. I have been there many times, but I live in the US. 

 

No,no, no...now..come on...do not lose hope!  Please...we're here for you! We've walked in your shoes!!.

Even if that test is negative, you could try a gluten-free diet and get rid of the symptoms.

 

Many people with NCGS (non-celiac gluten sensitivity) have similar symptoms that resolve on a G F diet.

I tought You were from Ireland:))) I will! I am just so fed up of being sick and tired all the time. I even broke up with my girlfriend do to my problems... Thank You! I am 8 day on gluten-free diet. As I am not willing to wait 18 months for the biopsy if the tests indeed will be positive. But to be honest I feel worse.. The second day of gluten-free was amazing, but it was probably a placebo... However my stomach was really feeling very weird at that day.

[Bmitchell2226]

  On 3/20/2014 at 4:01 PM, NoGlutenCooties said:

Hi Captain Jack and Welcome to the Forum!  Argh!

 

Nutrient deficiencies are common but not required.  I have always been "borderline" anemic, but still in the normal range - the doctors always just said that was typical for a skinny white woman.  I have never had any other nutrient deficiencies or even borderline bloodtest results. Even my Vitamin D levels have always been good - even though I discovered I have osteopenia at 40 years of age (hoping to correct that now that I'm gluten free).

Hello I am very new to the forum. I also have normal iron levels as of a year ago. I have not been technically diagnosed with celiac yet. I do have a lot of symptoms that have been going on for years: stomach ache after eating, eye problems, some minor neurological problems, and really feeling very crappy and sometimes just feel very weak and sick. The list goes on and I would love to share information if at all possible. Thank you

[IrishHeart]

  On 3/21/2014 at 12:33 AM, captainjacksparrow said:

I tought You were from Ireland:))) I will! I am just so fed up of being sick and tired all the time. I even broke up with my girlfriend do to my problems... Thank You! I am 8 day on gluten-free diet. As I am not willing to wait 18 months for the biopsy if the tests indeed will be positive. But to be honest I feel worse.. The second day of gluten-free was amazing, but it was probably a placebo... However my stomach was really feeling very weird at that day.

 

 

You may feel worse before you feel better. Healing the gut  is an up and down road. Just be patient.

Here is your new motto: Every day is a healing day.

 

Please read this entire thread I have linked below  so you understand everything about cross contamination. Just BELIEVE you can get well! And as corny as this sounds, remaining hopeful and positive (and not fretting anymore) is very beneficial. Stress creates inflammatory cytokines in our bodies and we don't need that. 

 

Drink a lot of water, take a probiotic, stay completely G F (scrutinize everything before you eat it) and try and relax now.  I know how hard it is to

feel lousy for so long, but it gets better, I promise.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[CaliSparrow]

  On 3/21/2014 at 12:39 PM, IrishHeart said:

Stress creates inflammatory cytokines in our bodies and we don't need that.

I believe that is what is going on with me. I was about to post a topic asking about stress and decided to do a search first. Thanks!

[captainjacksparrow]

  On 3/21/2014 at 12:39 PM, IrishHeart said:

You may feel worse before you feel better. Healing the gut  is an up and down road. Just be patient.

Here is your new motto: Every day is a healing day.

 

Please read this entire thread I have linked below  so you understand everything about cross contamination. Just BELIEVE you can get well! And as corny as this sounds, remaining hopeful and positive (and not fretting anymore) is very beneficial. Stress creates inflammatory cytokines in our bodies and we don't need that. 

 

Drink a lot of water, take a probiotic, stay completely G F (scrutinize everything before you eat it) and try and relax now.  I know how hard it is to

feel lousy for so long, but it gets better, I promise.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

 

So the blood tests came back all normal! I am lost and depressed. My GP says its one hundred percent not celiac and it is just stress. I am 14th day of gluten free. Feel a little better ,but I dont know if its gluten or not. I will stick to gluten challenge at least for few months.. I am so lost and just want to cry. GP told that all the tests are within the normal limit..... I asked for a copy so should receive them this afternoon. However, when I was on gluten, I used to have diarrhoea, small and fatty stools. And when I am on gluten free diet, they are all gonne. I am also on diary free,as diary makes me sick as well.... I wont give it up...

[NoGlutenCooties]

  On 3/27/2014 at 12:53 PM, captainjacksparrow said:

So the blood tests came back all normal! I am lost and depressed. My GP says its one hundred percent not celiac and it is just stress. I am 14th day of gluten free. Feel a little better ,but I dont know if its gluten or not. I will stick to gluten challenge at least for few months.. I am so lost and just want to cry. GP told that all the tests are within the normal limit..... I asked for a copy so should receive them this afternoon. However, when I was on gluten, I used to have diarrhoea, small and fatty stools. And when I am on gluten free diet, they are all gonne. I am also on diary free,as diary makes me sick as well.... I wont give it up...

 

There is absolutely no way a doctor can say 100% anything based on the Celiac blood tests.  They simply just aren't that accurate.  False positives are much more rare, but false negatives are not particularly uncommon.  And then there is always non-Celiac gluten intolerance, in which the tests come back negative but you still get all the symptoms and still improve on a gluten-free diet.  In my opinion, you're doing the right thing by trying a strictly gluten-free diet for a few months.  You've already seen symptom improvement - which to me is much more telling than the blood test results.  I know not having an "official" diagnosis can be frustrating, but if it means you can still get healthy it's not the end of the world.

 

Oh... and usually when people say they are on a gluten challenge they mean they are temporarily eating gluten for the purpose of getting tested.  It sounds like you're trying gluten free for a few months, so you're actually done with the challenge.  (or you never did a challenge because you were never gluten free before)...  Anyhow... just wanted to clarify that for others who may read this and get confused.

[captainjacksparrow]

  On 3/27/2014 at 1:17 PM, NoGlutenCooties said:

There is absolutely no way a doctor can say 100% anything based on the Celiac blood tests.  They simply just aren't that accurate.  False positives are much more rare, but false negatives are not particularly uncommon.  And then there is always non-Celiac gluten intolerance, in which the tests come back negative but you still get all the symptoms and still improve on a gluten-free diet.  In my opinion, you're doing the right thing by trying a strictly gluten-free diet for a few months.  You've already seen symptom improvement - which to me is much more telling than the blood test results.  I know not having an "official" diagnosis can be frustrating, but if it means you can still get healthy it's not the end of the world.

 

Oh... and usually when people say they are on a gluten challenge they mean they are temporarily eating gluten for the purpose of getting tested.  It sounds like you're trying gluten free for a few months, so you're actually done with the challenge.  (or you never did a challenge because you were never gluten free before)...  Anyhow... just wanted to clarify that for others who may read this and get confused.

 

 

This what I meant, sorry for confusing... But can gluten intolerance cause alopecia totalis, nail ridging and so on ??? I will try, although I starting to loose hope, but I wont give up.. I had been bitten by two ticks when I was a kid, will try and will get tested for Lymes disease, also Lupus..  Even though it is less common in men.. If You wont mind I will post my results later on in this thread. Or should I create a new one?

[GF Lover]

Hi Captain.  You can post your results here or start a new topic.  

 

I would get tested for Lyme's, Lupus is probably unlikely as you would have a positive ANA and I'm assuming your Doc would have seen that with general blood work.  I haven't read your history so excuse me if you've already covered that.  I'm also assuming you have had nutritional testing?

 

Colleen

[NoGlutenCooties]

  On 3/27/2014 at 1:24 PM, captainjacksparrow said:

This what I meant, sorry for confusing... But can gluten intolerance cause alopecia totalis, nail ridging and so on ??? I will try, although I starting to loose hope, but I wont give up.. I had been bitten by two ticks when I was a kid, will try and will get tested for Lymes disease, also Lupus..  Even though it is less common in men.. If You wont mind I will post my results later on in this thread. Or should I create a new one?

 

From what I understand of NCGI, you can get all of the same symptoms and issues that folks with Celiac can get.  The only difference is that the blood test and biopsy are negative.  (If there are other differences, hopefully someone more knowledgable about NCGI will chime in here).  And by all means, post your test results.  You should probably start a new thread so more people will see it.  There are quite a few folks on here that are very good at reading the various test results.

[captainjacksparrow]

  On 3/21/2014 at 12:39 PM, IrishHeart said:

You may feel worse before you feel better. Healing the gut  is an up and down road. Just be patient.

Here is your new motto: Every day is a healing day.

 

Please read this entire thread I have linked below  so you understand everything about cross contamination. Just BELIEVE you can get well! And as corny as this sounds, remaining hopeful and positive (and not fretting anymore) is very beneficial. Stress creates inflammatory cytokines in our bodies and we don't need that. 

 

Drink a lot of water, take a probiotic, stay completely G F (scrutinize everything before you eat it) and try and relax now.  I know how hard it is to

feel lousy for so long, but it gets better, I promise.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

I have no idea what blood tests I had. I know that IGA and EMA as well as CBC, Iron, folic acid, thyroid all of them a WITHIN THE NORMAL LIMITS. But the sentence it self gives me some wondering. As I talked to her via the phone and she mentioned few times - WITHIN THE NORMAL LIMITS.. Anyhow, in about an hours time I will get the results back and will post there.. She is referring me to psychiatrist and dermatologist for my alopecia totalis.. I have so many symptoms that just relate to celiacs so much as well as to lupus and Lyme. 

[GottaSki]

  On 3/27/2014 at 1:36 PM, captainjacksparrow said:

I have no idea what blood tests I had. I know that IGA and EMA as well as CBC, Iron, folic acid, thyroid all of them a WITHIN THE NORMAL LIMITS. But the sentence it self gives me some wondering. As I talked to her via the phone and she mentioned few times - WITHIN THE NORMAL LIMITS.. Anyhow, in about an hours time I will get the results back and will post there.. She is referring me to psychiatrist and dermatologist for my alopecia totalis.. I have so many symptoms that just relate to celiacs so much as well as to lupus and Lyme. 

 

Good Morning CaptainJack!

 

Sorry you had a frustrating doctor's appt.  Many of us have a great deal of experience with dismissive doctors. 

 

First thing -- always get written or electronic copies of all medical tests -- I have had several doctors or their staff tell me incorrect information -- one left cancer untreated for nine months until a computer caught the error -- if that computer hadn't been doing some sort of check/balance -- I might not be here -- ever since I have asked for all results in writing.

 

Once you have them, post them here...this thread is fine -- there are often normal results that high/low within "normal" range that can help lead to requesting more tests -- but most docs read normal and don't think -- what else haven't I tested for?

[captainjacksparrow]

OK, here are my results (they seem very good to me):

 

U/E+CREAT

urea - 6.5

sodium - 144

potassium - 4.4

creatinine - 88

 

 

LFT (Liver function test from serum)

bilirubin - 12

ALT (GPT) - 22

alkaline phosphatase - 81

gamma GT - 17 

 

GLUCOSE

4.3

 

VITAMIN B12 SERUM

523

 

ESR 

2

 

FULL BLOOD COUNT

WBC - 7.4

RBC - 5.27

haemoglobin - 15.8

PCV - 0.461

MCV - 87.5

MCH - 29.9

MCHC - 34.2

Red Cell Distribution Width - 13.1

plateletes - 177

PCV - 8.1

lymphocites - 3.20

monocytes - 0.70

neuthrophils - 3.2

eosinophils - 0.20

basophils - 0.00

 

THYROID FUNCTION 

FREE T4 - 14.3

TSH - 2.72

anti-TPO Ab: 2.72 - negative 28

tTG ANTIBODY 0.4 negative

 

It is probably anxiety and stress related. However I been like this since my early early childhood... Anti anxiety meds and antidepressants does not help..

 

What do You think about the results?

[GottaSki]

  On 3/27/2014 at 4:41 PM, captainjacksparrow said:

OK, here are my results (they seem very good to me):

 

U/E+CREAT

urea - 6.5

sodium - 144

potassium - 4.4

creatinine - 88

 

 

LFT (Liver function test from serum)

bilirubin - 12

ALT (GPT) - 22

alkaline phosphatase - 81

gamma GT - 17 

 

GLUCOSE

4.3

 

VITAMIN B12 SERUM

523

 

ESR 

2

 

FULL BLOOD COUNT

WBC - 7.4

RBC - 5.27

haemoglobin - 15.8

PCV - 0.461

MCV - 87.5

MCH - 29.9

MCHC - 34.2

Red Cell Distribution Width - 13.1

plateletes - 177

PCV - 8.1

lymphocites - 3.20

monocytes - 0.70

neuthrophils - 3.2

eosinophils - 0.20

basophils - 0.00

 

THYROID FUNCTION 

FREE T4 - 14.3

TSH - 2.72

anti-TPO Ab: 2.72 - negative 28

tTG ANTIBODY 0.4 negative

 

It is probably anxiety and stress related. However I been like this since my early early childhood... Anti anxiety meds and antidepressants does not help..

 

What do You think about the results?

 

You are right...what was run looks pretty good.  It's hard to know what they mean for sure without ranges -- not all labs use the same ranges.

 

To save you some tying -- what was the range for ALT in the liver section and the range of the tTG Antibody?

 

Not to bum you out...but you did not have sufficient celiac blood work to know anything with any degree of certainty.

 

The one tTG test you had means very little without the Total Serum IgA - if it was an IgA based test -- not clear from your list.

 

You've already removed gluten for some time -- so it is up to you when/if you want to proceed with proper celiac testing.