New and Naive.

[Daisy44]

Hi all!

 

I'm new to this forum, new to Celiac's and very naive about it all.

I have been ill for 6+ years. Last month I was finally diagnosed with Hashimoto's. The doc was concerned about my constipation and ran the EMA and it came back at 1:80 (range 1:5). I've not had any gastro issues other than constipation and heartburn. Putting me on Synthroid solved the heartburn. I am on several meds which have a side effect of constipation. The doc suggested the GH diet for a trial.

I've now been 3 week gluten-free and nothing has changed. I have a chronic headache that is just as bad as ever (seeing 3rd neuro next week) and I have experienced more bloating and have gas. I hardly ever have gas and this is causing chest pains. I've read you can have the rash dermatitis herpetiformis (DH) and not show gastro symptoms. I believe I've had that rash at times, most recently a few years ago. It is very mild.

In the past week I've begun having a hive like, prickling rash. It's all new. I tried to isolate what is different and the only thing I can come up with is soy. Lots of soy in processed gluten-free foods.

Question: How likely is it that the Hashimoto's gave me a false positive? I'm 49, never had any gastro issues other than the ones I have now. Could it be just the rash and if I maintain low amts of gluten I'll be ok?

I have enough to handle in my life with the Hashi's never mind trying to change life long eating habits overnight. I have no issue with going gluten-free in a lot of areas, but some areas are just brutal!

Thanks in advance for any help.

Daisy

 

[cyclinglady]

Daisy,

I am so sorry that you are sick!  Your doctor........what can I say?  You should ask for a complete celiac panel since you have what seems like one positive.  I would get copies  all of your lab tests.  You should completely rule out celiac disease before going gluten free.  I had Hashimoto's for the past 20 years.  It often goes hand-in-hand with celiac disease (not to mention other autoimune disorders).  

The EMA is usually not the first test recommended by celiac experts and that includes the American  and British Gastroentology organizations!  Time for a GI referral as your doctor does not sound celiac savvy.  

Here are the celiac tests:

 

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA 

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

 

-endoscopic biopsy - make sure at least 6 samples are taken

 

You have to be consuming gluten for the tests to be accurrate!  Like 8 to 12 weeks.  So you might want to consider eating gluten daily if you want a diagnosis.  

 

(Source: NVSMOM -- ?)

 

Welcome to the forum and let us know how it goes! 

 

 

[cyclinglady]

Your question?  This link to the University of Chicago says it all.  Read the entire website.  They are one of the leading researchers in the US.  

 

http://www.cureceliacdisease.org/archives/faq/what-is-an-ema-blood-test

[Daisy44]

Thank you so much for the information! The list of tests is great and I will see if my doc will run them. My primary is my doc for a lot of things as he gives a hoot, is very helpful, and will run most of the tests I request. 

[nvsmom]

Chances of Hashi's causing a false positive ttG IgA is less than 5%. The tTG IgA (tissue transglutaminase) is very similar to the EMA IgA, but the EMA IgA tends to detect more advanced disease.  In fact, many doctors will not run the EMA IgA untila after a patient has had a positive tTG IgA.

I have Hashi's too. My EMA was normal inside of a year gluten-free, although my tTg IgA took longer to become normal. After 3+ years gluten-free, my tests are all very normal.  

It's probably celiac disease.  

Welcome to our board. Good luck with the doctor.  Here's more info on the tests: Open Original Shared Link