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

Introducing Myself

byrmanson

Recommended Posts

byrmanson Rookie
byrmanson
Posted

Hello, I am a 28y.o. F on the East Coast. I am a mental health therapist working under an MD that seems aware of the link between gluten sensitivity/celiac and mental/emotional conditions. He was the one who ordered tests for me when I kept complaining of "lack of energy" and "focus problems."

I have recently received a positive result on the gene test and am trying to make sense of the other results... not sure antibodies showed up? Unfortunately, I haven't gotten any firm answers from any doctors I've spoken with (all friends who I don't think wanted to admit that they didn't know what the numbers really meant). I am considering redoing things with introlab and would appreciate any feedback from folks who've ordered tests there. I would be happy to share my results if anyone could help interpret them as well?

Additionally, I am pretty sure that my mother and brother are affected by gluten senstivity and am weeding through all the information with them as well. Looking forward to this site being of help and support.

Thanks in advance. Any feedback?

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

Celiac.com Sponsor (A8-M):


BRUMI1968 Collaborator
BRUMI1968
Posted

Welcome! It's great that you work for a health care provider aware of Celiac Disease. I've told my therapist (he has Celiac too) that anyone with anxiety disorder should be tested. I really believe that. I have had zero panic attacks since going gluten free (well, except when I get glutened...)

Anyway, hope the board will be of help to you; I know it was for me, especially at the beginning. Glad to have you! :rolleyes:

Ridgewalker Contributor
Ridgewalker
Posted
I have recently received a positive result on the gene test and am trying to make sense of the other results... not sure antibodies showed up? Unfortunately, I haven't gotten any firm answers from any doctors I've spoken with (all friends who I don't think wanted to admit that they didn't know what the numbers really meant). I am considering redoing things with introlab and would appreciate any feedback from folks who've ordered tests there. I would be happy to share my results if anyone could help interpret them as well?

Welcome to the board! This is the best place to learn about Celiac and gluten intolerance.

The doctor that ordered the tests don't know what the results mean either?

I think that if you post your results on the "Pre-diagnosis, Testing" forum, that people should be able to tell you what they probably mean.

Good luck!

ruthla Contributor
ruthla
Posted

Hello, I'm Ruth. I have Fibromyalgia and somebody on another board suggested that I might feel better if I avoided grains and dairy.

I tried going off just wheat a few months ago but didn't see much improvement. Then I tried going compeltely gluten free for a few weeks and eventually gave into temptation before seeing any real results.

About a week ago, I had pizza and birthday cake at my son's birthday party, and felt completely awful afterwards- but I couldn't tell if it was from the dairy, the wheat, the total carbs (I've been on a low carb diet since July) or a combination of the three. I was just sick of missing out on foods other people can eat and felt like I wasn't doing a good job avoiding wheat anyway, so I figured there wouldn't be any further harm. I was wrong.

I don't think I have Celiac Disease, but I do think that my body will benefit from a gluten-free diet. I'm just kind of at a loss about how to proceed. Should I get my kids off gluten to minimize the risks of cross contamination? Should I not handle wheat dough so I don't absorb any gluten through cuts in my skin?

Also, are there any other Orthodox Jews on this board? I'm really not sure how to proceed with things like challah on Shabbos, can I say the Birchas Hamazon after a meal if I didn't consume any bread- and other related religious questions.

nutralady2001 Newbie
nutralady2001
Posted

Hi Ruth I just googled Jewish + gluten free and came up with these links you can probably find heaps more if you do the same. Hope these help!

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

happygirl Collaborator
happygirl
Posted
Hello, I am a 28y.o. F on the East Coast. I am a mental health therapist working under an MD that seems aware of the link between gluten sensitivity/celiac and mental/emotional conditions. He was the one who ordered tests for me when I kept complaining of "lack of energy" and "focus problems."

I have recently received a positive result on the gene test and am trying to make sense of the other results... not sure antibodies showed up? Unfortunately, I haven't gotten any firm answers from any doctors I've spoken with (all friends who I don't think wanted to admit that they didn't know what the numbers really meant). I am considering redoing things with introlab and would appreciate any feedback from folks who've ordered tests there. I would be happy to share my results if anyone could help interpret them as well?

Additionally, I am pretty sure that my mother and brother are affected by gluten senstivity and am weeding through all the information with them as well. Looking forward to this site being of help and support.

Thanks in advance. Any feedback?

What were the tests that were run, the results, and the reference range?

CarlaB Enthusiast
CarlaB
Posted
Hello, I am a 28y.o. F on the East Coast. I am a mental health therapist working under an MD that seems aware of the link between gluten sensitivity/celiac and mental/emotional conditions. He was the one who ordered tests for me when I kept complaining of "lack of energy" and "focus problems."

I have recently received a positive result on the gene test and am trying to make sense of the other results... not sure antibodies showed up? Unfortunately, I haven't gotten any firm answers from any doctors I've spoken with (all friends who I don't think wanted to admit that they didn't know what the numbers really meant). I am considering redoing things with introlab and would appreciate any feedback from folks who've ordered tests there. I would be happy to share my results if anyone could help interpret them as well?

Additionally, I am pretty sure that my mother and brother are affected by gluten senstivity and am weeding through all the information with them as well. Looking forward to this site being of help and support.

Thanks in advance. Any feedback?

I would post your blood results here as many here are able to read them.

Enterolab can tell you if there's an immune reaction to gluten, but not whether you have celiac disease. Is there a difference? For some of us, yes. My reaction to gluten was temporary due to another infection and leaky gut.

If your blood tests weren't accurate, I would get them redone ... the whole celiac panel, not just the IgA ... before you start the gluten-free diet. Then you can start the gluten-free diet to see if it is a help. Enterolab will not be able to tell you anything a trial of the diet can't tell you.

Thirty percent of the population has celiac genes ... one percent has celiac, so just because you have the genes does not mean you have the disease.

If the celiac tests come out negative, you might want to check this out as there is also a strong connection with neuro/psych/cognitive issues and you live in an endemic area. Open Original Shared Link

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

Celiac.com Sponsor (A8-M):


byrmanson Rookie
byrmanson
Posted
  • Author

I posted them under the pre-diagnosis and testing section. Would certainly appreciate your feedback!

happygirl Collaborator
happygirl
Posted

I would request that your doctor do the full Celiac blood panel. You only had part of it done.

AGA IgA

AGA IgG

tTG IgA (which you had)

EMA IgA

IgA

byrmanson Rookie
byrmanson
Posted
  • Author

Many requested that I post my results. If you were one of them, can you please help me read these? Here's a copy of the post I put in test results / pre-diagnosis, Am I reading this right?

______________________________________________________________________________

I got some tests run from a local lab. The doctor that ordered them hasn't explained a darn thing and just told me to do the gluten diet. But I think these tests are negative, so why do the diet (I am anyway). I have two doctor friends that told me to do the diet too... but I can't understand their rationale from these tests? Where are the antibodies?

Here's what I got back. I have also had a doctor tell me not to trust the lab normals, and that if I'm on the low end or high end of the normals that it could still be a problem? So what good are these test then?

I do believe I'm gluten senstive (self-diagnosed) regardless of these numbers as my research and my diet experiments have all supported the possibility. But, this seems to be a great forum for trustworthy input. PLEASE tell me what you've heard or what you see in these results?

I read these to say:

(1) that I am positive for a gene causing celiac, (2) but am normal for T-transglut IGA (test result 1), and (3) have normal Immunoglobulins. Also looks like (4) possibly low iron and (5) low Vit D but not outside the lab normals? The lab normals are confusing me, and my research has made me conclude that these tests may not have picked up a sensitivity ... perhaps there are other tests too that would be more helpful?

HELP! HELP! HELP!

IRON

Ferritin = 28 (normal 10-291)

Immunoglobulins

IgA 135 (Normals 70-400) [these normals look wierd to me to have such a range???]

Celiac Disease HLA DQ Association

DQ2 POSITIVE

DQA1 NEGATIVE

Vitamins

Vitamin D, 25 OH = 49.5

(normals 32-100)

Serology

T-transglut IGA 1 (Normals 0-3)

T-transglut IGA

Neg: 0-3

Weak Pos: 4-10

Pos: >10

byrmanson Rookie
byrmanson
Posted
  • Author

My results:

Any input?

IRON

Ferritin = 28 (normal 10-291)

Immunoglobulins

IgA 135 (Normals 70-400) [these normals look wierd to me to have such a range???]

Celiac Disease HLA DQ Association

DQ2 POSITIVE

DQA1 NEGATIVE

Vitamins

Vitamin D, 25 OH = 49.5

(normals 32-100)

Serology

T-transglut IGA 1 (Normals 0-3)

T-transglut IGA

Neg: 0-3

Weak Pos: 4-10

Pos: >10

byrmanson Rookie
byrmanson
Posted
  • Author

My results:

IRON

Ferritin = 28 (normal 10-291)

Immunoglobulins

IgA 135 (Normals 70-400) [these normals look wierd to me to have such a range???]

Celiac Disease HLA DQ Association

DQ2 POSITIVE

DQA1 NEGATIVE

Vitamins

Vitamin D, 25 OH = 49.5

(normals 32-100)

Serology

T-transglut IGA 1 (Normals 0-3)

T-transglut IGA

Neg: 0-3

Weak Pos: 4-10

Pos: >10

Input?

byrmanson Rookie
byrmanson
Posted
  • Author

Thansk for asking! Would love your input...

IRON

Ferritin = 28 (normal 10-291)

Immunoglobulins

IgA 135 (Normals 70-400) [these normals look wierd to me to have such a range???]

Celiac Disease HLA DQ Association

DQ2 POSITIVE

DQA1 NEGATIVE

Vitamins

Vitamin D, 25 OH = 49.5

(normals 32-100)

Serology

T-transglut IGA 1 (Normals 0-3)

T-transglut IGA

Neg: 0-3

Weak Pos: 4-10

Pos: >10

byrmanson Rookie
byrmanson
Posted
  • Author

Posted them as a reply to my original message. Will you take a look?

CarlaB Enthusiast
CarlaB
Posted

Your IgA shows that you are in the normal range, thus not reacting to gluten. However, as Happygirl said, they did not run the complete test. From what you've had run so far, it does not look like a gluten issue, but you really need the rest of the testing to be sure.

Please check out the link to another thread that I posted in my previous post .... it is another thing for you to check out.

byrmanson Rookie
byrmanson
Posted
  • Author

A response on the numbers..... THANK YOU!!!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Seabeemee
      - Seabeemee replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

      Thanks for your reply Trents…most appreciated. I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population? Also, I found what you said about N...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    3. JoJo0611
      - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks.
    4. trents
      - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But...
    5. Seabeemee
      - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Labs ? Awaiting in person follow up with my GI

      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea). I also have been diagnosed with GERD and some associated issues hence the endoscopy. ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748
    AmynDevyn
    Newest Member
    AmynDevyn
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Seabeemee
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      Thanks for your reply Trents…most appreciated.  I am unfamiliar with celiac labs terminology so I wanted to know if the presence of HLA variants (DA:101, DA:105, DQB1:0301 and DQB1:0501) that the labs detected had any merit in predisposing one to be more sensitive to gluten/carbs than the general population?  Also,  I found what you said about NCGS very interesting and I appreciate you mentioning that.  I’ve worked hard to research and advocate for myself with my Hematologist and now with a new GI, since my bowel surgery and to maintain my Vitamin B12 health concurrent with keeping my levels of Iron in the optimal range. I’ve been tested for SIBO (do not have it), biopsy showed negative for HPylori, and have had Fecal studies done (nothing showed up) and I understand how a loss of a large amount of bowel could be highly impacting re: SIBO, malabsorption and motility issues. So I’ve managed pretty well diet and elimination-wise until just recently. That said, this new problem with extreme bloating, distention and upper girth, NAFLD just occured over the last 4 months so it is new for me and I thought celiac might be a possible issue. I’ll probably just continue on in this less gluten/carbs seem to be better for me and see how reintroducing certain foods go.  Thanks again.    
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Yeast extract

      By JoJo0611 · Posted

      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Labs ? Awaiting in person follow up with my GI

      By trents · Posted

      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      Labs ? Awaiting in person follow up with my GI

      By Seabeemee · Posted

      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
×
×
  • 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.