In the process of being diagnosed...

[camprunner 0]

Background:

I was tested for Celiac Disease a year ago at my request. Honestly, I don't know how valid the results are. I had been on a gluten free diet for almost a month and a half but off for about 10 days before the test. But I was a little leary of eating gluten at that point and so not consuming it everyday and certainly not in heavy amounts. I have Hashimotos and upon going on a gluten free diet, those antibodies decreased a significant amount. My husband says we are not going to try the blood test again because he can't take 3-6 weeks of me gluten loading and I'm not sure I can either.

I have been on a gluten free diet now for the most part for 3 months and see a huge difference. My brainfog is gone , I have energy, less moodswings, less acne, and I suddenly get extremely painful constipation when I eat gluten that I didn't notice before. However I wasn't regular before going gluten free either; just wasn't in pain and therefore did not care. I have always had eczema and haven't noticed any at all since I have been on a gluten free diet but we have also made other changes in the last few years that are supposed to help such as a water softener, etc. My mother and brother show a lot of the symptoms of Celiac disease including constant D, lactose intolerance, and ADHD symptoms (brother is on an insane amount of medication for this). My dad shows a lot of the neurological signs of Gluten Intolerance and is lactose intolerant. He goes off of gluten when eating at home and is back on when eating at restaurants and can tell a huge difference though he just thinks is because grains of any kind are bad for EVERYBODY. In addition, autoimmune diseases have occurred on both sides of the family including RA, Lupus, a rare autoimmune liver disease, myasthenia gravis, chronic blood clotting, chronic bronchitis (was told autoimmunie related), etc.

When my youngest daughter was a baby, the doctor wanted to test for IGA Deficiency because she was very small (from birth and still is) and got sick frequently. After doing research, I couldn't see where knowing would make a difference and declined. She had some things as a baby that made us think about the possibility of being Celiac but appears fine now.

So, I am probably going to get the gene test done by enterolab to test for non Celiac Gluten Intolerance just for peace of mind.

So... if a person is IGA deficienty, are their IGA levels just a flat zero or could it be very low?

My blood results were:

Tissue Transglutaminase Ab, IgA 0.1 Normal <7 U/ml

Gliadin Peptide Ab, IgG 2.9 Normal < 7 U/ml

Gliadin Peptide Ab, IgA .5 Normal < 7 U/ml

I have a great doctor who I'm sure would have looked into IgA deficiency if she thought it was a possibility but I just thought I'd check since you guys seem to know so much.

Thanks in advance.

[mushroom 1,209]

The test that should be run in conjunction with the other tests is total serum IGA. If this is deficient it will throw the other results off. Also, the results are not valid because you had not been consuming enough gluten at the time.

With your family history I think having the genetic testing for both you and your daughter is a good idea. Is your daughter gluten free? If not, you could have the full blood panel run on her:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

This will give you a better idea of where you are at as a family. It is highly likely that your daughter has the same problem you do, whether diagnosable celiac or non-celiac gluten intolerlance..

[Jestgar 716]

I just want to point out that there are no identified "Celiac genes". You can be tested for HLA haplotype of which certain ones are associated with celiac disease, but not causal.

[camprunner 0]

Thanks for the responses! While my daughter is not gluten free, she isn't getting a ton of it either. We don't have a lot of breads in the house for my sake. Sometimes, my husband will cook with gluten for the three of them and I'll have a substitute that kind of goes with what they are having but it happens less and less. So I don't know if the tests will be that much better for her.

I have thought about doing Enterolabs complete panel but already have negative results, I'm not sure it would be worth it with the negative blood tests.

[lizard00 33]

I am IgA deficient. For the lab my doctor used, the normal range was somewhere around 88-200 or something like that. My number was 19. So, it was pretty safe to say that my low number obviously had a negative effect on my test results. My GI did a gene test on me to determine what my risk was, and we went from there. For me, the genetic test was very helpful, but it may not be for everyone. He really wanted to do an endo, but I had been gluten-free for 6 months and was doing remarkably better, so we couldn't come to an agreement on that