Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Just Did Elimination Diet - Are These Symptoms Indicative Of Ncgi?


SiandAshs Mom

Recommended Posts

SiandAshs Mom Apprentice

Hi all. I had the attg iga blood test run (it's the only celiac blood test available here unfortunately). It came back completely negative. I eliminated gluten for 3 months anyway and was feeling really good. Not perfect, but much better than before.

A few days ago I added gluten back in. I ate a lot of gluten over the course of two days. I felt okay afterward but did notice some stomach pain - nothing really bad. Yesterday I felt really weepy and depressed and then before I went to bed I felt like I got hit with the flu. I had/have a headache and feel completely weak and tired.

Could this all be from gluten? Is it normal to feel okay for a couple days and then get hit hard with symptoms at that point? My doctor believes there is absolutely nothing wrong with me so it's hard for me to figure out what the heck is going on with all these vague but debilitating symptoms! Thanks for your thoughts and advice :)

 

ETA - I also felt like I had a sore throat and that a cold is coming on... could that be from gluten as well? It hasn't progressed into a cold at this point...


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Well, you may have a cold coming on with a sore throat, but the other symptoms you described sound like celiac disease. celiac disease is an autoimmune disorder -- not an allergy. It can take a while for your body to ramp up. Everyone has a different response. Hope you feel better soon!

SiandAshs Mom Apprentice

Well, you may have a cold coming on with a sore throat, but the other symptoms you described sound like celiac disease. celiac disease is an autoimmune disorder -- not an allergy. It can take a while for your body to ramp up. Everyone has a different response. Hope you feel better soon!

Thanks so much. Yeah, I could just be getting a cold. Who knows! It's weird though - It doesn't feel like a sore throat now. I can drink and eat without the pain that typically comes with a sore throat. My neck/glands feel tender and swollen though. I will keep up with a food diary to see what I can determine.

 

Can these symptoms be brought on by non-celiac gluten sensitivity? My attg iga blood test was very negative so my doc doesn't believe I have celiac...

BlessedMommy Rising Star

Where do you live?

 

In the U.S. it's possible for people to order bloodwork on their own from a private lab and self pay if their doctor refuses to order it.

SiandAshs Mom Apprentice

Where do you live?

 

In the U.S. it's possible for people to order bloodwork on their own from a private lab and self pay if their doctor refuses to order it.

Ugh, I wish I could! I am in Alberta, Canada. The attg iga is the only test here. I could pay $300+ for the antigliadin iga and igg tests from a naturopath but can't really justify it (especially since it isn't the most accurate test). If I travelled to the U.S. could I pay for tests while I'm there? We just noticed that my 5 year old's teeth are crumbling (plus he has lots of digestive/behaviour issues) but his attg iga was a big fat negative as well. I would love more tests for him...

BlessedMommy Rising Star

Absolutely you could order bloodwork while down in the U.S.

 

Open Original Shared Link

SiandAshs Mom Apprentice

Absolutely you could order bloodwork while down in the U.S.

 

Open Original Shared Link

Awesome! Thanks very much!


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

There's an AI condition called Hashimoto's thyroiditis which is associated with celiac disease.  It is an autoimmune attack on the thyroid.  People with it can have throat swelling and pain.  Just something to consider.  They test for it by checking TPO antibodies.

SiandAshs Mom Apprentice

There's an AI condition called Hashimoto's thyroiditis which is associated with celiac disease.  It is an autoimmune attack on the thyroid.  People with it can have throat swelling and pain.  Just something to consider.  They test for it by checking TPO antibodies.

Thanks so much. I did have a TSH test come back (what I consider) high. But since it was within the labs 'normal' range my doctor won't run any more thyroid tests. I may have to shop around for a better doctor! LOL. I appreciate the advice and I will look into it further. Is hashimoto's genetic? I have family members diagnosed with hypothyroid but I don't think they were tested specifically for the antibodies...

NoWhammies Newbie

The thing with Hashimoto's is it often doesn't show up in the TSH, or it shows up as being high normal or even within normal limits. It really depends on what the thyroid is doing when they test. It took years for me to get my Hashimoto's diagnosed. I had to ask for a T3 test, which is where it ultimately showed up. Can you self refer to an endocrinologist in Canada? If so, that might be the way to go to determine thyroid disease.

SMRI Collaborator

Your symptoms could just be hormonal too.  If not eating gluten makes you feel better, then don't eat it.  You don't need a diagnosis to change your diet.  If your TSH is in the normal range, it's normal.  What was your reading and what was the range given by the lab?  Yes, the emotional issues can be associated with Celiac but it's really uncommon not to have some digestive issues if you have other "symptoms".  As for your child's teeth..what does your dentist say?

ravenwoodglass Mentor

It is possible you have NCGI but it is also possible you are celiac. Did your doctor run a total IGA test? If your total IGA is low that will cause a false negative. Your symptom cascade is a lot like mine. In my case it will be 3 or 4 days before the D hits but don't know if that will happen with you. It is IMHO significant that you were feeling alot better off gluten and then saw your symptoms return soon after you added gluten back in.

It would be a good idea to get your child evaluated further if you can. 

I hope you can get some answers soon for both of you. 

SiandAshs Mom Apprentice

Your symptoms could just be hormonal too.  If not eating gluten makes you feel better, then don't eat it.  You don't need a diagnosis to change your diet.  If your TSH is in the normal range, it's normal.  What was your reading and what was the range given by the lab?  Yes, the emotional issues can be associated with Celiac but it's really uncommon not to have some digestive issues if you have other "symptoms".  As for your child's teeth..what does your dentist say?

 

Yes it could definitely be hormonal. I just don't know. I would be fine eating gluten free without a diagnosis but I think gluten may be an issue for my kids and my family has been pretty unsupportive of any dietary changes because doctors say they're fine. If there is an issue, it would be great to actually have a doctor help - I know a diagnosis just might not be possible though. My TSH was 3.19 (lab normal range was up to 4). The American Association of Clinical Endocrinologists have said people over 3.0 should be considered for treatment (Open Original Shared Link). At any rate, I thought it would warrant some further blood tests... We have a dentist appointment for my son next week so we're just waiting to hear what the she says.

It is possible you have NCGI but it is also possible you are celiac. Did your doctor run a total IGA test? If your total IGA is low that will cause a false negative. Your symptom cascade is a lot like mine. In my case it will be 3 or 4 days before the D hits but don't know if that will happen with you. It is IMHO significant that you were feeling alot better off gluten and then saw your symptoms return soon after you added gluten back in.

It would be a good idea to get your child evaluated further if you can. 

I hope you can get some answers soon for both of you. 

Yes, he did order the total IGA. It was totally normal. I suppose I will just stay off gluten and reap the benefits :). Thanks for your response.

GFinDC Veteran

Thanks so much. I did have a TSH test come back (what I consider) high. But since it was within the labs 'normal' range my doctor won't run any more thyroid tests. I may have to shop around for a better doctor! LOL. I appreciate the advice and I will look into it further. Is hashimoto's genetic? I have family members diagnosed with hypothyroid but I don't think they were tested specifically for the antibodies...

 

Hi,

 

They probably won't find Hashimoto's except by testing for the TPO antibodies.  There may be a genetic link for Hashimoto's.  A number of people on the forum have reported having  Hashimoto's as well as celiac disease.  The linked wiki article has more info.  I thought of it because you mentioned throat irritation after eating gluten.  The TPO antibodies test isn't a standard test they give thyroid patients from my understanding.  It's something that has to be requested.  Hashimoto's is more common in women than men.

 

Open Original Shared Link

 

Here's another thread discussing Hashimoto's and some other stuff.  Has some discussion of thyroid testing in it.

 

https://www.celiac.com/forums/topic/108888-hormones-hashis-and-celiac-how-does-this-all-work-together/

SiandAshs Mom Apprentice

Hi,

 

They probably won't find Hashimoto's except by testing for the TPO antibodies.  There may be a genetic link for Hashimoto's.  A number of people on the forum have reported having  Hashimoto's as well as celiac disease.  The linked wiki article has more info.  I thought of it because you mentioned throat irritation after eating gluten.  The TPO antibodies test isn't a standard test they give thyroid patients from my understanding.  It's something that has to be requested.  Hashimoto's is more common in women than men.

 

Open Original Shared Link

 

Here's another thread discussing Hashimoto's and some other stuff.  Has some discussion of thyroid testing in it.

 

https://www.celiac.com/forums/topic/108888-hormones-hashis-and-celiac-how-does-this-all-work-together/

Thank you for the info! I will give it a good thorough read when my kids are in bed tonight :)

  • 1 year later...
SiandAshs Mom Apprentice

Just posting a recap of new happenings this last year - I would love some more advice. I personally have had more blood work done (while travelling in the USA). All blood work is negative.

tTg IgA - negative (completely - nothing even registered)

gliadin IgA - negative (pretty much completely)

gliadin IgA - negative (completely)

DGP IgA - negative (6 and 0-19 is negative)

DGP IgG - negative (2 and 0-19 is negative)

I have stubborn iron deficiency anemia that is slowly slowly increasing as I take supplements every day. I have a lactose intolerance (I believe my kids do too) but seem fine with small amounts of dairy. I struggle with depression and anxiety and have raynaud's (just in my feet though). Doctor ran autoimmune blood tests because of the raynaud's but they all came back negative.

My menstrual cycles are crazy heavy (doc believes this is the cause of anemia and that makes sense). I have been on birth control for quite a while now to control this - practically no bleeding for a long time but the past 2 months my flow has been crazy heavy again, even on the BC (sorry for the overshare). For the few months I was gluten-free my cycle almost completely normalized... 

Like I said previously, I would be fine being gluten free just for myself but my kids have issues and I am having a hard time getting support to change their diets. 
My 2 oldest had the tTg IgA ran - both negative. My oldest has a rash on his elbows that *could* be DH but I don't know for sure if it is. His allergist said she thought is was psoriasis. He also has strong environmental allergies, cold urticaria, chronic loose stools, and mood issues. 

My other son has chronic constipation that leads to encopresis as soon as we stop laxatives. He has eczema, complains of growing pains frequently, and says his stomach hurts a lot (allergist wanted us to try an elimination/addition diet with gluten and dairy as it's not a IgE allergy or celiac according to blood). He frequently seems tired but has diagnosed airway/sleep issues, so that is probably why. He has crumbling baby teeth but the dentist didn't seem concerned since he'll lose those teeth anyway... 

 

So my question is this... Is it worth pushing for an endoscopy for any of us? My doc doesn't want to send me for one as all bloodwork was negative (I get that - he doesn't want to send someone for a procedure unnecessarily). I just have this nagging feeling that it is actually celiac. I'm not sure why I feel that way - it could just be anxiety... I know some docs send patients for endoscopy even if bloodwork is negative but would that apply to me? I would love some opinions. Thanks!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    2. - fritz2 replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    3. - Tuba1971 replied to Pat B's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      FDA says that most drugs are gluten-free???

    4. - PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      NCGS Diagnosis

    5. - Viroval replied to Nicbent35's topic in Related Issues & Disorders
      13

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,756
    • Most Online (within 30 mins)
      7,748

    Rob14
    Newest Member
    Rob14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative. gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative. TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range. tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range. immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient. Here is a primer explaining the various tests that can be used to diagnose celiac disease: Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).
    • fritz2
      I'm 70, had gut issues my whole life.  15 years ago my grandchild was diagnosed with celiac.  Since I had a constant either constipation or diarrhea and what the doctors thought was fibromyalgia and other issues I decided to see what happens if I quit gluten.  I got a lot better.  BTW, 30 years ago I had head & neck cancer, the radiation destroyed my thyroid.  I suffer from chronic fatigue and have to take synthroid. A few months ago, I bought a bottle of Ice water, I was thirsty and all they had at the motel was this.  It said sugar free and had a bunch of vitamins.  I couldn't read the fine print so I thought it's safe, so I bought several bottles (it had sucralose and maltodextrin in it).  I thought one per day would be ok and it absolutely was delicious.  In the meantime, my wife found some links and bratwurst for breakfast, we didn't know it had wheat in it and we picked up a half gallon of her favorite ice cream and unknown to us they had changed the formula and added wheat.  I had several meals and several bottles before I realized something was wrong.  Did all the sugar add to the issue?   In a day, I wasn't feeling well, my joints started swelling.  In a couple days, I thought sure I had gout in both hands.  In three days, I needed help to stand up or sit down, the pain was extreme.  I went to the emergency room.  They took blood and gave me cholchistine to alleviate the gout, it did nothing.  I didn't get a report on the test.  The next week the doctor ordered more blood tests and it's all acronyms but a couple items on celiac were listed as high.  The nurse I asked about the report had no clue and the RA was negative.  This has been ongoing for over a month and only now am I able to use my hands, but it's painful. Under the Celiac labs headline it says:  endomys-Negat gliaiga-  5 gliaigg-  1 TRANGLUA -3 tranigg-  8  (high) immaqnt-  160 Rheumatoid factor <12 Thyroid stimulating hormone: 2.81 Does anyone know what this means?
    • Tuba1971
      I had been glutened from somewhere since I pretty much make all my food from scratch. I had to have an endoscopy which should gluten damage, had blood work which also indicated high gluten. 4 years ago when I had these tests my gluten levels were all in good alignment. It comes down to my levothyroxin accord brand that must have gluten in it. I switched to synthroid 3 weeks ago and have been doing much better and am able to sleep at night again.
    • PA Painter
      That somes it up. It is worth mentioning GliadinX does not reduce symptoms for me at all. I also react to banana, avacado, cabbage, Oatmeal, and pecans among other things. If anyone else out there is like me, I had to eliminate gluten and all processed food before I could start to heal. I wish I had know this a long time ago. Thanks for the acknowledgement.
    • Viroval
      Thanks for sharing this detailed explanation. It’s really helpful to understand the differences between celiac disease and gluten sensitivity. I had no idea that gluten withdrawal could feel similar to addiction, and it’s great to have that context when considering how it affects people. It’s also good to know how important it is to continue eating gluten for accurate testing. I’ll keep all of this in mind!
×
×
  • Create New...