I Also Need Help With Test Results!

[Laura5999]

I am a 26 year old female who up until now, possibly, has been completely healthy. My mother was diagnosed with celiac about six months ago, and she was not diagnosed until her symptoms were very severe. I have learned a lot about the disease and the gluten-free lifestyle since then, but I am very "stuck" as to what I should do next regarding my own testing.

I began having a rash very similar to DH about a year ago--I thought I was having a reaction to perfume or something in lotions, etc. In the last six months, however it has gotten worse and I have not been able to find answers for it.

Given the strong family hx, and my rash, I got the Celiac antibody panel done last month. These are the results:

TTG IGA 4

Gliadin IGA 28

Immunoglobin A 193 (65-421 MG/DL)

The ranges for the TTG IGA and Gliadin IGA are 20 and below are negative; 20-30 weak positive; 30+ moderate to strong positive.

I am VERY concerend about the Gliadin IGA results. However, my general practice doctor had the nurse called me to tell me I had nothing to worry about! At this point it seems like my body is manufacturing the Gliadin antibodies, but perhaps I don't have intestinal damage yet? I am wondering what kind of specialist to see next--and I have been considering going gluten free, but it seems like the rash can take a long time to subside even after gluten-iodine dieting, and if I become gluten free, testing could produce false-negatives.

Thank you anyone who can give me a little guidance because my doctor doesn't seem to have much knowledge on this topic.

[ravenwoodglass]

It sounds like your doctor isn't really knowledgable about celiac. Since you have a rash that may be DH you could go to a derm who is knowledgeable about DH and ask for a biopsy letting the doctor know you came back positive on the celiac panel. They need to biopsy beside the rash not the rash itself and they need to be looking for DH.

If you are going to persue an endoscopy stay on gluten until that is done. If you are not going to persue further testing then get started on the diet. False positives are extremely rare if not nonexistant while false negatives are quite common. You have positive blood work and some doctors would diagnose with that but apparently your doctor doesn't think your positive enough yet. IMHO it is better to go gluten free now rather than continuing to damage your system long enough for your blood tests to move into the strongly positive range.

[Laura5999]

Thank you for your advice. I do think I am going to pursue a skin biopsy. My hope is that this will further confirm the DH. After the biopsy I am going to go gluten free--I've already started cutting some out and done things like switch from NSAID pain relievers and iodized salt to see if it relieves the skin reaction. I am a little scared, as I love things like pasta and bread, etc. But it's good to know there are so many individuals who do so well with this, and I am glad I have a great mother with celiac to help me with the transition!

Again--thanks!

[ravenwoodglass]

Thank you for your advice. I do think I am going to pursue a skin biopsy. My hope is that this will further confirm the DH. After the biopsy I am going to go gluten free--I've already started cutting some out and done things like switch from NSAID pain relievers and iodized salt to see if it relieves the skin reaction. I am a little scared, as I love things like pasta and bread, etc. But it's good to know there are so many individuals who do so well with this, and I am glad I have a great mother with celiac to help me with the transition!

Again--thanks!

You'll still be able to have pasta and bread. There are quite a few different kinds and you will find ones that you like. Having a Mom who has already gone through the changes will help a great deal.

Hopefully you will be feeling much better soon.

[hsmomof6]

Ravenwoodglass is right, positive IGA added to your family history and symptoms is pretty telling. I had a Celiac panel and the only positive test was the AGA IGA (it was over 60). The NP at the GI office told me I was negative for Celiac, but had some immune problem. I took the results to my PCP and she diagnosed me Celiac positive with the IGA and symptoms. My PCP happens to be Celiac herself, so she was much more knowledgeable about it. She said that the GI NP was not very knowledgeable about Celiac test results. My doctor, thankfully, didn't want me to do a biopsy because I would have had to go back on gluten (I had gone gluten-free right after the test results because of my own research) and she didn't feel the need to put me through that to get a biopsy that might or might not tell us what the blood test and symptoms had already shown to be true.