Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

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

celiac without anemia b12

  • Please log in to reply

36 replies to this topic

#16 CaliSparrow

 
CaliSparrow

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 250 posts
 

Posted 22 March 2014 - 05:05 PM

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!
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

Celiac.com Sponsor:

#17 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 04:53 AM

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.

 

http://www.celiac.co...ewbie-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...


  • 0

#18 NoGlutenCooties

 
NoGlutenCooties

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 763 posts
 

Posted 27 March 2014 - 05:17 AM

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.


  • 1

Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#19 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 05:24 AM

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?


  • 0

#20 GF Lover

 
GF Lover

    Melanoma Warrior

  • Moderators
  • PipPipPipPipPipPip
  • 1,705 posts
 

Posted 27 March 2014 - 05:30 AM

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


  • 0

HAVE A SUPER SHINY DAY

 

LTES gem 2014

*BiPolar, Major Depression, Anxiety *Hypothyroidism, *Celiac

*Metastatic Melanoma, *Immunotherapy Mitigated Vitiligo, *General Insanity

"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

gingerbread-man-smiley-emoticon.gif


#21 NoGlutenCooties

 
NoGlutenCooties

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 763 posts
 

Posted 27 March 2014 - 05:32 AM

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.


  • 0

Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013


#22 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 05:36 AM

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.

 

http://www.celiac.co...ewbie-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. 


  • 0

#23 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 27 March 2014 - 06:00 AM

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?


  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#24 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 08:41 AM

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?


  • 0

#25 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 27 March 2014 - 11:52 AM

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.


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#26 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 01:23 PM

OK, here ait se 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?

 

I just knew it!!! That she did not ordered the correct tests! I assume EMA is missing right?!

I dontk know, I am so tires and dont know I

 

 

I just knew it, that she ordered wrong tests.EMA is missing right?There is no range on the actusl sheet for celiac..Is it worth it to go back on gluten?I fed up with all this crap.... :( I think I will go with gluten free diet and will see how it goes.What do You think?

 

And the liver are all fine. ALT range - 21-72 but I heard that it should be low.No?


  • 0

#27 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 27 March 2014 - 02:11 PM

I just knew it, that she ordered wrong tests.EMA is missing right?There is no range on the actusl sheet for celiac..Is it worth it to go back on gluten?I fed up with all this crap.... :( I think I will go with gluten free diet and will see how it goes.What do You think?

 

And the liver are all fine. ALT range - 21-72 but I heard that it should be low.No?

 

yep...liver is fine -- I forgot general ranges and just wanted to check.

 

The challenge is up to you.  I'll tell you that if you continue to improve it may become even more difficult to complete a gluten challenge.

 

FWIW - if you think you'll want to be tested, do it now.

 

Is there a celiac support group where you live?  It may help you find a good choice in GI docs that have training/experience with Celiac Disease and NCGS.

 

Hang in there :)

 

edited to add -- many labs do not run the EMA-IgA unless the tTG is positive.  Let us know if you need the complete list of celiac antibody tests -- I think we may have already given it to you -- if not, let us know.


Edited by GottaSki, 27 March 2014 - 02:14 PM.

  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#28 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 02:27 PM

yep...liver is fine -- I forgot general ranges and just wanted to check.

 

The challenge is up to you.  I'll tell you that if you continue to improve it may become even more difficult to complete a gluten challenge.

 

FWIW - if you think you'll want to be tested, do it now.

 

Is there a celiac support group where you live?  It may help you find a good choice in GI docs that have training/experience with Celiac Disease and NCGS.

 

Hang in there :)

 

edited to add -- many labs do not run the EMA-IgA unless the tTG is positive.  Let us know if you need the complete list of celiac antibody tests -- I think we may have already given it to you -- if not, let us know.

 

I am in Ireland and can not afford tests.This was covered by my medical card (medical insurance)... I looked online that  TTG ranges from 00 to to 2.9 as far as I remeber. However, could it be possible that because I am not the bigest bread lover so myantibodies were low? I ate tons of gluten fro about 3 weeks prior testing.. I also found that I am lactose intolerant or casein not sure, but its the same anyway.. 


  • 0

#29 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 27 March 2014 - 02:45 PM

I am in Ireland and can not afford tests.This was covered by my medical card (medical insurance)... I looked online that  TTG ranges from 00 to to 2.9 as far as I remeber. However, could it be possible that because I am not the bigest bread lover so myantibodies were low? I ate tons of gluten fro about 3 weeks prior testing.. I also found that I am lactose intolerant or casein not sure, but its the same anyway.. 

 

Gotcha! 

 

By the way...that lactose intolerance can be a result of celiac as well.  If you aren't going to be tested soon -- I strongly suggest you remove all gluten for six months and then trial lactose/casein to see if you can tolerate it.  Regardless of the dairy deal -- since you have symptoms consistent with celiac or ncgs and you had some improvement since you removed gluten -- six months gluten-free should give you the answers you are looking for. -- at least "unofficially" ;)


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#30 captainjacksparrow

 
captainjacksparrow

    New Community Member

  • Advanced Members
  • Pip
  • 18 posts
 

Posted 27 March 2014 - 02:50 PM

Thank You all for your help! I will stick with gluten-free or maybe evdn Paleo diet and will keep You informed! Will come back in few weeks just to let You know how I am doing. Cheers!!!:)


  • 0





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: