Newly tested, got the results 2 days before Christmas!

[OzFam815 0]

Hello all!

I am brand new here and am not sure if I am technically diagnosed since I only have the blood tests back (they came in just before the holidays and I have not been able to get scheduled to meet with anyone for follow up tests). Anyway, I am 34 am a veteran. I mention that part only because it plays in a bit. I have had "broken guts" for years - since my first deployment in 2002. When I was given a new primary doctor with the VA (my old one retired), she was looking at my records and realized I had been diagnosed with IBS during that deployment (I had no idea). Fast forward to earlier this month and she said some of the things in my charts were not adding up so she wanted to eliminate celiac as the cause. I didn't think anything of it until the call where she said the celiac panel was positive and I needed to come back in in January for some follow ups as well as to meet with the nutritionist. I don't remember much else from the call as all I could concentrate on was the whole "Positive Results" thing. Anyway, because it is the VA, I was able to do an information request online and see the actual results. The only problem is I have no idea what it is actually saying. I have tried looking online and it is just as confusing - it felt like I was running in circles. 

So, here are the results. Can anyone talk me through what they mean? I will definitely be following up as soon as possible but I am feeling really unprepared for dealing with the VA on this.

 

Name: RETICULIN IGA AB - Result: 1:160 High - Reference: (Neg: ,1:2.5)

Name: ENDOMYSIAL IGA ANTIBODY - Result: High - Reference (Negative)

Name: GLIADIN IGA AB - Result: 85 High - Reference: (0-19)

Name: Gliadin Ab IgG - Result: 33 High - Reference: (0-19)

Name: TRANSGLUTAMINASE IGA AB - Result: >100 High - Reference: (0-3)

 

Ideas? Thanks in advance!

Respectfully,

Oz

Edited December 27, 2016 by OzFam815

[kareng 2,318]

Those look really positive -welcome to the Club!  You might want to check to see if they are going to do a biopsy/endoscopy.  If they are -DO NOT stop eating gluten.

[GFinDC 857]

Hi Oz,

The results are showing the measurements for levels of antibodies to gliaden, the protein in wheat.  There are several types of antibodies they test.  If you look to the right side of the text lines the reference is the normal, not a problem reading range.   It seems all your results are high/positive.  Are you sure you still have guts left in there?  Just kidding. 

Your immune system has decided that any time you eat gluten it is going to go on the attack and destroy your gut lining and the gluten that is anywhere near there.  The 2nd part of testing is an endoscopy to take 4 to 6 biopsy samples for microscopic examination.  They check the biopsy samples to confirm damage to the gut lining (villi) characteristic of celiac disease.

The immune system is pretty powerful and doesn't give up on a fight quickly/  So the immune attack can continue for weeks to months.  One of the common problems with celiac is lactose intolerance.  Lactose (milk sugar) is digested by an enzyme made by the villi (gut lining).  So with the villi gone or damaged we can't digest the lactose and the funny little bacteria that inhabit our guts go wild.  You could ask your doctor if it's ok to stop eating dairy now.  That might relieve some of your symptoms.

You do need to keep eating gluten until the testing is completed.  Around a half slice of wheat bread is enough to keep the damage going for testing.  Gluten  (as meant in celiac) is the protein in wheat, rye, barley and for 10% or more of us, oats.

Welcome to the forum and do read the Newbie 101 thread in the Coping With section.  It has some tips for getting started.  A good way to begin eating gluten-free is to concentrate on whole foods you cook yourself at home.  Skip the processed foods and eat meats, veggies, nuts, eggs, maybe some fruit.  If you do buy packaged foods look for a short ingredient list of say 3 things.  Don't eat out for a while.   Recovery form celiac damage can take 6 months to a year and a half or more.  Celiac can cause malabsorption of nutrients.  You could ask your doctor to test you for vitamin and mineral deficiencies also.

[OzFam815 0]

Thanks for the replies! So I heard back from the doc and she doesn't want to run the biopsy "because of the potential adverse side effects". She said the level of the test results is high enough for a diagnosis and she's worried about the existing damage getting any worse. Does that sound right? She did have me go back in for a complete metabolic and nutritional panels (did that this afternoon).  

Also, both of my kids were tested this morning for TBC, thyroid and celiac panels. The TBC and thyroids have come back good for both but not the celiac as that one takes longer.

Interesting to note, we went to Red Robin yesterday for dinner and told them I was brand new to this whole thing. They were AMAZING and explained not only the whole process they do for celiacs but showed me their menu and walked be through how to order from it. I managed to avoid gluten for the entire day (first time ever) and was shocked at the differences. I will spare you some of the more fun details but lets just say I was worried because I thought my food wasn't digesting when my husband explained that digestion does not mean pain. That was when I realized that for the first time in my life, I was not in pain 30 min after eating. I almost cried (happy tears). 

More to follow once we know the kids results!

OZ

[gluten-free girl 67 3]

Hi Oz. So glad to hear you felt good after eating at Red Robin. Just keep in mind you have to be really careful when eating out, people don't understand Celiac disease the majority of the time. See my post about being glutened on Christmas. The best thing about finding out is now you will feel better. I feel best when I eat at home and cook my own food, it's the safest way to eat. Fast food in general is not safe. For example Taco Bell's tacos have gluten in the meat. You would be surprised. So be careful and do research before eating out. I was diagnosed 6 years ago, and I am more and more sensitive to gluten if I accidentally eat it when going out. I end up vomiting for hours. Not fun. Welcome to the club! 

[Gemini 871]

Hello Oz......you do not need a biopsy with a panel like that!  Mine was the same so I was also diagnosed with just the blood work. It's great that you have a doctor who has some common sense about testing and who also did vitamin panels to check for deficiencies. What your blood panel shows is that you are reacting to the gluten you are eating (the Gliadin AB testing) and there is damage to your intestinal tract (the transglutaminase IgA).  With a strict gluten free diet, you'll do fine in the long run. It's such a huge relief to finally know what is making you so miserable after eating food.......I know how that feels!

As for eating out, do so cautiously in the beginning, only when you have to.  Give your gut time to heal.  This website can be a big help:  http://www.findmeglutenfree.com/  It will give a listing, by city, of restaurants that have been vetted by other Celiac's.  You can read their reviews and decide what works best for you.  But I would try to avoid eating out until your antibody levels are back in the normal range.  I went on a trip shortly after being diagnosed and had to go because I would have lost a lot of money. I just ate plainly and very carefully and did not have a problem but it can be tricky until you learn the ropes.  FYI....I never, ever eat fast food. Not only do I not like it anyway, there is just too much risk eating in that kind of establishment. 

Welcome to the club! 

[squirmingitch 696]

Hello Oz & welcome to the club! I must admit I'm sitting here with my jaw on the floor that a VA doc actually caught your celiac & knew how to test for it. The VA missed my hubs' celiac for ohhhhhhhhh 20 years despite us constantly pushing for more testing. We had no idea about celiac, we just knew there was more to his problems than being hypothyroid and blowing everything else off. I'm really thrilled that somewhere out there in VA land, someone knows what they're talking about.

You can consider yourself technically diagnosed now. Wonderful that you're getting the kids tested. All first degree relatives (siblings, parents, kids) need to be tested every 2 years in the absence of symptoms and immediately if symptoms present. They have to have been eating gluten every day for 12 weeks prior to blood testing.