6 Month Post Diagnosis Lab Work Still Elevated?

[jenn42]

My 12 year old daughter just had her 6 month lab work done after being diagnosed with Celiac in March 2012. Her levels are still high. She's feeling MUCH better on the gluten-free diet and hasn't had any stomach aches, headaches and she is tolerating stress much easier. Why are the levels still high and should I be concerned even if she's feeling 100%???

[GottaSki]

Hi Jenn-

Which levels are high? Have the numbers come down from her original tests? It can take time for all antibodies to get down to normal ranges. Did her DGP IgA or IgG come down? DGP is often the first to rise with gluten ingestion and first to fall with gluten withdrawal.

I'd think that if her health has improved drastically, you are doing a great job removing gluten from her life. Has she had any instance of symptoms from accidental glutening or cross contamination. If your daughter doesn't have obvious reactions, all you can do is be a gluten-free compliant as possible and test every six months to watch for the numbers to come down.

[jenn42]

Please forgive me, after 6 months I'm still learning all this.

Her Gliadin Antibody IGG , which I'm assuming is the DGP was 7 and now it's 8, the DGP IGA was 4 and now it's 7, (went up a little)? Both were "in range"??

The TTG IGG was 13, now it's 8, TTG IGA was 6, now it's 7.

Hopefully that makes sense to you. The G.I. doctor was concerned they were not coming down and going up a little. She asked me to see a Nutritionist. I'm really not wanting to do that. I have done so much research that I feel with no symptoms we don't need to go that route. My Pediatrician said no worries, as long as she's not having any symptoms.

I appreciate your imput on this.

Thanks again,

Jenn

Hi Jenn-

Which levels are high? Have the numbers come down from her original tests? It can take time for all antibodies to get down to normal ranges. Did her DGP IgA or IgG come down? DGP is often the first to rise with gluten ingestion and first to fall with gluten withdrawal.

I'd think that if her health has improved drastically, you are doing a great job removing gluten from her life. Has she had any instance of symptoms from accidental glutening or cross contamination. If your daughter doesn't have obvious reactions, all you can do is be a gluten-free compliant as possible and test every six months to watch for the numbers to come down.

[GottaSki]

No apologies ever needed here...most of us learn about about Celiac Disease as we go - I had no clue what celiac was prior to my own diagnosis.

All of your daughter's tests are within normal range which is good. I haven't heard of numbers going up after removing gluten, but that certainly doesn't mean they can't. I also agree that if you are researching and your daughter's symptoms have improved you don't necessarily need to see a nutritionist. There are members that have found them very helpful - it depends on the nutritionist - I saw one after I was gluten-free for one month and she did not tell me anything that I hadn't already learned, so for me it was a disappointment and was not covered by my insurance.

I think I'd focus on making sure you have removed all sources of gluten and cross-contamination. Perhaps she is getting minute quantities somewhere that is enough to trigger the immune system, but not enough to cause symptoms. She's 12 - so I'll ask - is it possible she is eating something with her friends or at school that either has gluten or is prepared in a gluten containing kitchen?

It can be very tough to get all sources of gluten out - it takes time.

Patience helps too - perhaps her results will come down by the next check.

In case you are curious:

AGA (Gliadin Antibody) - tests for antibodies in the blood created in reaction to one of the proteins found in gluten

DGP (Diamated Gliadin Peptide) - tests for antibodies in the blood created in reaction to the peptides specific to gliadin (during digestion gliadin proteins are broken down into smaller units called peptides).

From what I've read the DGP is more sensitive and thought to be the first to react to gluten - again I don't know if the small amount your daughter's went up is significant or not - personally I think it's a little too early to know.

[jenn42]

Thank you so much for your information. It's been very helpful. Yes, I'm sure she's getting some kind of cross contamination. Matter of fact I'm positive. Our kitchen at home isn't completely gluten-free. I'm still in the process of getting it that way. We really try by keeping one counter for gluten only!! The rest of the kitchen is all gluten-free. Hopefully bread crumbs are cleaned up??

I will have to say, I have never been a "cook", so this is a little challenging for me to find things gluten-free that our family will like and that I can cook to taste good. We did eat out quite a bit and conveniece food was always in our pantry. That has changed dramatically. I am cooking more and have found great gluten-free recipe's on Pinterest and several gluten-free cook books. My daugher is and always has been a wonderful eater, fruits, veggies, yogurt, and more, so this transition has been easier for her than if I had a picky eater. My 15 year old son is different. He is a very picky eater and we have turned his world upside down with no convenience food. He's adjusting well though. So, slight cross contamination in our home is definitely a problem I'm sure.

She is a very determined/strong willed child and she knows what she can and can't do. I feel confident that she's folllowing her diet when she's not at home. She doesn't want to feel that sick ever again...is what she's told me. She has downloaded all the gluten-free apps on her i-touch so she can be refer to them for gluten-free information. We are very proud of her. So, it looks like I need to do some more cooking/baking and work on a gluten-free kitchen in hopes that her antibodies get back to normal.

Thanks again for all your help.

Take Care,

Jenn

No apologies ever needed here...most of us learn about about Celiac Disease as we go - I had no clue what celiac was prior to my own diagnosis.

All of your daughter's tests are within normal range which is good. I haven't heard of numbers going up after removing gluten, but that certainly doesn't mean they can't. I also agree that if you are researching and your daughter's symptoms have improved you don't necessarily need to see a nutritionist. There are members that have found them very helpful - it depends on the nutritionist - I saw one after I was gluten-free for one month and she did not tell me anything that I hadn't already learned, so for me it was a disappointment and was not covered by my insurance.

I think I'd focus on making sure you have removed all sources of gluten and cross-contamination. Perhaps she is getting minute quantities somewhere that is enough to trigger the immune system, but not enough to cause symptoms. She's 12 - so I'll ask - is it possible she is eating something with her friends or at school that either has gluten or is prepared in a gluten containing kitchen?

It can be very tough to get all sources of gluten out - it takes time.

Patience helps too - perhaps her results will come down by the next check.

In case you are curious:

AGA (Gliadin Antibody) - tests for antibodies in the blood created in reaction to one of the proteins found in gluten

DGP (Diamated Gliadin Peptide) - tests for antibodies in the blood created in reaction to the peptides specific to gliadin (during digestion gliadin proteins are broken down into smaller units called peptides).

From what I've read the DGP is more sensitive and thought to be the first to react to gluten - again I don't know if the small amount your daughter's went up is significant or not - personally I think it's a little too early to know.