Celiac Disease Testing...Need Help!

[Lindsay Anne]

Hi,

I recently did a celiac disease panel and also did the genetic testing. I'll get the genetic test results tomorrow. But I'm unsure of what my other blood work means and need help. 

I got weak positives for Anti Tissue Transglutaminase Ab IgG and IgA. 

I got weak positives for Anti Gliadin Antibodies IgG and IgA.

My Anti Endomysial Antibodies IgG were 1:40 of 1:40 titre

My Anti Endomysial Antibodies IgA were 1:10 of 1:10 titre

I have tingling feet and hands. I've suffered from rashes on my hands and sometimes elbows, knees and feet for years. I tested low for Vitamin D and iron levels. I just dealt with a bout of painful canker sores on my tongue and on my inner cheeks and lips. I am always bloated, have gas and have on and off constipation and loose stools. I also have dealt with high prolactin hormone levels for the past 4 years with no tumor. I recently saw research linking high prolactin levels and gluten. I've been taking dostinex for some time. I have also experienced infertility the past 2 years. Auto immune disease runs on both sides of my family. I am dragging ALL the time. I try to take care of myself, exercise, try to get good sleep...and feel I shouldn't be feeling this exhausted all the time. My husband and I cut gluten for 2 years and felt so much better. I have been eating lots of bread and products with gluten the past 3 months due to a cut in our budget. We both feel terrible. 

I have visited the GP, dermatologist, OBGYN, etc. I live outside of my home country and am frustrated dealing with doctors where I now live. I decided to take matters into my own hands by getting my own blood work done. 

Any help would be appreciated. Thank you!

[cyclinglady]

6 hours ago, Lindsay Anne said:

Hi,

I recently did a celiac disease panel and also did the genetic testing. I'll get the genetic test results tomorrow. But I'm unsure of what my other blood work means and need help. 

I got weak positives for Anti Tissue Transglutaminase Ab IgG and IgA. 

I got weak positives for Anti Gliadin Antibodies IgG and IgA.

My Anti Endomysial Antibodies IgG were 1:40 of 1:40 titre

My Anti Endomysial Antibodies IgA were 1:10 of 1:10 titre

I have tingling feet and hands. I've suffered from rashes on my hands and sometimes elbows, knees and feet for years. I tested low for Vitamin D and iron levels. I just dealt with a bout of painful canker sores on my tongue and on my inner cheeks and lips. I am always bloated, have gas and have on and off constipation and loose stools. I also have dealt with high prolactin hormone levels for the past 4 years with no tumor. I recently saw research linking high prolactin levels and gluten. I've been taking dostinex for some time. I have also experienced infertility the past 2 years. Auto immune disease runs on both sides of my family. I am dragging ALL the time. I try to take care of myself, exercise, try to get good sleep...and feel I shouldn't be feeling this exhausted all the time. My husband and I cut gluten for 2 years and felt so much better. I have been eating lots of bread and products with gluten the past 3 months due to a cut in our budget. We both feel terrible. 

I have visited the GP, dermatologist, OBGYN, etc. I live outside of my home country and am frustrated dealing with doctors where I now live. I decided to take matters into my own hands by getting my own blood work done. 

Any help would be appreciated. Thank you!

Weak positives can be attributed to a gluten free diet.  All celiac testing (blood and intestinal biopsies) require you to be on a gluten  diet (8 to 12 weeks blood, 2 to 4 for biopsies).   The genetic test (you can be on a gluten diet) will reveal if you have the chance of developing celiac disease.  Some 30% of the population carries the celiac genes, but only a very few go on to develop Celiac disease. Then...there are a few celiacs that actually have different genes.  A celiac rash can be skin biopsied if fresh (recent).  Read more in our DH section.  

If you have been eating gluten prior to the blood tests for three months, your test results should be valid.  The next step would be to obtain an endoscopy to confirm villi blunting.  If that is not possible, you might just go back to eating gluten free to see if your symptoms resolve again.  Never  eat gluten again if your symptoms resolve which can take months or years.  

Gluten free need not be expensive.  Eat meats, fish, veggies, nuts, beans,  and fruit.  Rice is allowed and is usually inexpensive.  

I wish you well.  

[plumbago]

Hi Lindsey Anne --

This summer, I had sores on my tongue which were horrible. I wrote about it here:

I haven't had any since July. Since June of this year, I haven't really had added sugar, and that has probably helped. I also changed toothpastes to ones that do not have SLS.

Plumbago

20 minutes ago, cyclinglady said:

All celiac testing (blood and intestinal biopsies) require you to be on a gluten free diet

Cycling lady, do you mean a gluten containing diet?

[cyclinglady]

1 minute ago, plumbago said:

Hi Lindsey Anne --

This summer, I had sores on my tongue which were horrible. I wrote about it here:

I haven't had any since July. Since June of this year, I haven't really had added sugar, and that has probably helped. I also changed toothpastes to ones that do not have SLS.

Plumbago

Cycling lady, do you mean a gluten containing diet?

Yikes!   Yes!  I will correct.  Thank you. I am so used to being GLUTEN FREE!

[Lindsay Anne]

Hi Cycling Lady and Plumbago,

Thanks for your responses. Plumbago, I read your past posts and that is exactly how I felt! So sorry you had to go through that. So the lab called me this afternoon with my genetic results. 

Two of the genes were HLA DQA1*05 and HLA DQB1*02. I've been reading about it and saw that these two genes combined gives me a high disposition towards being Celiac. The DQ2.5 allele. 

This makes me feel like I'm not crazy! So I'm not going to go through with the intestinal biopsy. I feel like this is good enough for me to know that gluten just doesn't treat me well, go back to eating gluten free and not cheat in any way in the future. 

 

[cyclinglady]

If you have an opportunity to do the intestinal biopsy, you might reconsider.  Adhering to the diet can be very difficult for some people because they tend to DOUBT their own diagnosis.  As you know, long-term consequences for untreated celiac disease can be bad.  This is a genetic disease and you mentioned the possibility of children.  Of course, you might have Non-Celiac Gluten Intolerance too.  All  the symptoms but no intestinal damage.  

You can go gluten free for life.  My hubby did some 12 years before my own formal diagnosis.  We know that gluten makes him sick and he is strict.  He only deviated from the diet that first year until it because so obvious that gluten was the culprit.  He was under the care of medical doctors who were not celiac-savvy.  But...he will be the first to say that I have had WAY more support from family, friends and medical.  

Just something to think about.