Newbie Here - Negative Blood Work

[Colinsmom]

Hello to all! First of all I want to say that this is a really great board with lots of excellent info! I just got my blood work back and it was negative with very low numbers. I had really thought I was on to something and now I am disappointed that I don't have an answer. I just don't think I have the willpower to try the gluten-free diet and stick to it without a definitive diagnosis. One question did come to mind when I thought about what might alter my test results. I take Plaquenil 400 mg. and Prednisone 5 mg. every day. Would this have a bearing on the results? I take these meds for Lupus and Sjogren's Syndrome and I also have Hashimoto's Thyroiditis and an everpresent itchy rash (which was biopsied previously and negative for DH). My symptoms are as follows: chronic constipation, severe bloating and abdominal distention, frequent gas, fatigue, gum disease, osteopenia, GERD and post-nasal drip. I have had these symptoms for a while, but they got a lot worse after the birth of my son 2 years ago. If anyone has any insights for me, all comments would be appreciated. Thanks for reading my story!

[ShayFL]

What did they test?? Did they only do IgA antibodies?? Did they test your total IgA to see if you are deficient (therefore making the IgA tests invalid). Did they test IgG??

Have you had genetic testing for Celiac?

Biopsy?

I had neg blood, neg genetics for Celiac, but positive response to the diet. I have 2 gluten intolerance genes through Enterolab.

[leadmeastray88]

Hello to all! First of all I want to say that this is a really great board with lots of excellent info! I just got my blood work back and it was negative with very low numbers. I had really thought I was on to something and now I am disappointed that I don't have an answer. I just don't think I have the willpower to try the gluten-free diet and stick to it without a definitive diagnosis. One question did come to mind when I thought about what might alter my test results. I take Plaquenil 400 mg. and Prednisone 5 mg. every day. Would this have a bearing on the results? I take these meds for Lupus and Sjogren's Syndrome and I also have Hashimoto's Thyroiditis and an everpresent itchy rash (which was biopsied previously and negative for DH). My symptoms are as follows: chronic constipation, severe bloating and abdominal distention, frequent gas, fatigue, gum disease, osteopenia, GERD and post-nasal drip. I have had these symptoms for a while, but they got a lot worse after the birth of my son 2 years ago. If anyone has any insights for me, all comments would be appreciated. Thanks for reading my story!

Hi there!

First off, I'll mention that my story is a lot like yours. I also thought I was on to something since I haven't been feeling well following a traumatic abdominal surgery 2 years ago, and like you, I had negative bloodwork as well.

Once you've been here awhile ypu'll notice that many people who get diagnosed with Celiac have negative bloodwork, and then have a positive biopsy. What blood tests did you get done? If you only got IgA, they could be inconclusive because about 30% of Celiacs are IgA deficient, and therefore you'd need a total IgA serum panel done instead. I, however, have an ignorant surgeon who refused to do any further testing and said "I'm too young for scopes", so I'm trying the gluten free diet right now.

I also notice you have other autoimmune diseases. Having one autoimmune disease predisposes you to another, I'm sure you're aware.

Many of your symptoms could definitely be attributed to Celiac, however the problem is they are also attributed to other gastro conditions.

I encourage you to keep digging though - and don't give up. If you want answers, you need to demand that blood test and/or a scope, but you need to be eating gluten.

Hope this helps, hang in there!

-Kim

[Amyleigh0007]

I also had negative bloodwork. It's very frustrating. My symptoms also got worse with the birth of my daughter 11 months ago. My doctor blew me off when the test came back negative so I am seeing an allergist next month to be tested for food allergies. I do believe that if I don't have full blown Celiac then I do have gluten intolerance, wheat allergy, or something like that. I have been on a gluten free diet for a few months now and I do feel better. Try the diet and if it works then you might have gluten intolerance which would not show up on a Celiac test. You could also get tested for wheat allergy.

[Colinsmom]

Thank you all for your kind responses! My lab results were as follows:

Endomysial Antibodies IgA - Negative

Gliadin IgG - 1.4

Gliadin IgA - 1.8

Tissue Transglutaminase AB IgA - 0.1

Tissue Transglutaminase AB IgG - 3.1

The scale used was 0.0 - 30.0 = negative. Have I had all the correct tests? I have not had genetic testing or a biopsy. I think it would be hard for me to get a biopsy now since I've had the negative bloodwork. I have had allergy testing for a variety of items, including wheat, and all were negative. I am thinking about trying the diet for a week to see what happens. Is that long enough to feel a difference?

[leadmeastray88]

I am thinking about trying the diet for a week to see what happens. Is that long enough to feel a difference?

No, it's not.

I'll have been on the diet for 2 weeks next Tuesday and I am actually feeling the same, if not a little worse. The only reason I did this was because my surgeon REFUSED to scope me!

If you can stand to wait for the biopsy then you should! You can't get it if you're gluten free because then you risk getting a false negative.

[ABSoderberg]

I too have had negative blood work. My sister was diagnosed after she had pancreatitis a few years ago. She had to have a scope and the Dr kind of stumbled across it. I then went to her Dr who did every test imaginable for a gastro Doc to do. With all ruled out, he said that must be what it is. I have felt better but not great. This all happened a few years ago. I am unsure if I am eating something or doing something wrong! I guess that it is just trial and error!