I think I might have celiac disease?

[KristinaM]

Hi! Little bit of background: 

I am 27 years old female, for a few years Now I have Been suffering from constipation/diarrhoea, bloating and sometimes stomach pains. My skin itches, I also get hives. I am IgA deficient, have Been treated for hyperthyroidism for 3.5 years, I constantly have low iron and low vitamin D levels. Also, the last blood test showed elevated levels of bilirubin. I did some digging online and this might all be connected with celiac disease

My doctor only did tTG-IgA test for celiac, which can be falsely negative in IgA deficient people. However he just said that I dont have celiac and thats it. 

Please help. What next screening I should ask for? I read that a good blood test for IgA deficient people is tTG-IgG but it seems labs in Canada dont do this test? They only do IgG-DGP, which is suitable for patients up to 36 months of age.... At least I could not find tTG-IgG on their website. Should I request to be seen by gastroenterologist? Anyone here IgA deficient? What did you do? Do you know a good doctor in Vancouver? 

I was thinking to go for all these tests back to Europe (I am not canadian citizen) but it would just be too much hassle, I am hoping to get some results here.

[Scott Adams]

Welcome to the forum! Your symptoms certainly sound consistent with celiac disease, so I can see how you found your way here.

This article lays out blood test procedures, including those for IgA deficient people:

 Hopefully you can get re-tested if that was not taken into account.

[cyclinglady]

Go for the DGP IgG test.  It is applicable to anyone.  

I test positive to only the DGP IgA (am not IgA deficient) and never to the TTG (IgA and IgG), EMA IgA and DGP IgG.  I am old!  I have had the complete panel repeated many times, so it is not a fluke.  Know too that about 10% of celiacs are seronegative.  In that case, push to see a GI who can go directly to an endoscopy to obtain biopsies.  

How IgA deficient are you?  The result has to be pretty close to zero for the celiac IgA tests not to work.  The Immunoglobulin A test is just a control test when used for celiac disease testing.   It has nothing to do really with determining if you are Immunoglobulin A deficient.  Does that make sense?  

Hives? Those could be related to your thyroid.  I assume you have elevated thyroid antibodies?  Do you have Graves?  I get hives,  chronic, all-over-my-body hives, that last six months.  My allergist thinks they are related to my Hashimoto’s Thyroiditis.   I think they are just plain autoimmune.  When my autoimmune is flaring, my hives erupt daily.   I have Celiac Disease, Hashimoto’s and Autoimmune Gastritis.  So, my goal is never to flare!  

Edited May 22, 2020 by cyclinglady

[KristinaM]

Scott, thank you, that sounds about right - my endocrinologist from back home is recommending the same blood test. 

@cyclinglady I was diagnosed as IgA deficient by immunologist long time ago - maybe when I was 10-12 years old, I used to be a kid with repetitive colds and flus. Unfortunately I don't know the levels. The blood test I recently have done only says "the internal control on the BioPlex assay indicates that total IgA is deficient in this patient".

I have Graves, yes, however my hives sounds different than yours - I get them on like two-three spots (different parts of my body) at the same time, they are super itchy, it burns and then it goes away in like 20 minutes, this usually happens multiple times during a day.

I think I will have to push further to get test for other antibodies and maybe see a gastroenterologist. also, I definitely want to get more broad liver tests done to make sure the higher elevations of bilirubin are not cause by something more serious. 

It just seems too many things are happening to me which are connected with celiac disease.   

 

 

 

[GFinDC]

People with celiac disease can sometimes have increased liver test results.  That usually goes away after some time on the gluten-free diet though.  IgA deficiency is more common in people with celiac disease.

You might want to ask for a Hashimoto's Thyroiditis test also.  Hashimoto's Thyroiditis can cause Graves like symptoms at times.

 

[cyclinglady]

GFInDC was right that many celiacs have elevated liver tests and those typically resolve when celiac disease goes into remission (via the gluten free diet).  However, when you have one autoimmune disorder, you can develop more.  Autoimmune Hepatitis is always a possibility.  

My hives erupted every afternoon like clockwork.  They would start with a tummy ache, then my head would itch and the hives erupted down to my arms, legs, feet, and abdomen.  They were extremely itchy.  The itching was kept to minimum after my allergist prescribed a cocktail of antihistamines, but it did not stop the hives from erupting.   As time went on and my immune calmed down, my hives went away.  They have not appeared in two years.  I hope they never return!  

[Lori Peach]

On 5/22/2020 at 3:52 PM, KristinaM said:

Hi! Little bit of background: 

I am 27 years old female, for a few years Now I have Been suffering from constipation/diarrhoea, bloating and sometimes stomach pains. My skin itches, I also get hives. I am IgA deficient, have Been treated for hyperthyroidism for 3.5 years, I constantly have low iron and low vitamin D levels. Also, the last blood test showed elevated levels of bilirubin. I did some digging online and this might all be connected with celiac disease

My doctor only did tTG-IgA test for celiac, which can be falsely negative in IgA deficient people. However he just said that I dont have celiac and thats it. 

Please help. What next screening I should ask for? I read that a good blood test for IgA deficient people is tTG-IgG but it seems labs in Canada dont do this test? They only do IgG-DGP, which is suitable for patients up to 36 months of age.... At least I could not find tTG-IgG on their website. Should I request to be seen by gastroenterologist? Anyone here IgA deficient? What did you do? Do you know a good doctor in Vancouver? 

I was thinking to go for all these tests back to Europe (I am not canadian citizen) but it would just be too much hassle, I am hoping to get some results here.

I would immediately go gluten free. It will save you a lot of misery. I am 53 and never have been diagnosed with celiac even tho:

Quit period 36

Calcium deficiency

Iron deficiency 

Vitamin D Deficiency 

I have diverticula and stage 1 osteoporosis. I am gluten free since april 23 and am not ever going to stop. It isn't easy but it is worth it. Go non gmo, organic and eat lots of vegetables and organic meats. Celiac prevents your body from taking in nutrients. If I would have known at 26 I would be so much healthier. Please take care.