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

[SiandAshs Mom]

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...

[cyclinglady]

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]

  On 10/7/2014 at 8:23 PM, cyclinglady said:

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]

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]

  On 10/7/2014 at 8:51 PM, BlessedMommy said:

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]

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

 

Open Original Shared Link

[SiandAshs Mom]

  On 10/7/2014 at 9:19 PM, BlessedMommy said:

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

 

Open Original Shared Link

Awesome! Thanks very much!

[GFinDC]

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]

  On 10/7/2014 at 10:50 PM, GFinDC said:

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]

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]

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]

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]

  On 10/8/2014 at 8:55 AM, SMRI said:

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.

  On 10/8/2014 at 10:29 AM, ravenwoodglass said:

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]

  On 10/7/2014 at 11:08 PM, Si & Ash said:

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]

  On 10/8/2014 at 11:10 PM, GFinDC said:

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

[SiandAshs Mom]

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!