Celiac blood test

[mg12061]

I'm so glad to see this forum so active now! My daughter has been Gluten free for almost 3 years now.I have been extremely careful about ehr diet. Last week ehr GI doc tested her celaic numbers and they were still a bit high. 31 I believe. From what I was told when she was first tested (and it was 150) normal was below 20. So it's not exactly normal. He wasn't concerned but I do wonder about this. Does anyone know exactly what his means? Doesn this mean she has been still getting gluten over an extended time? Does it mean she may have just gotten some before the test? Is it "normal" to still be a little high after 3 years? I don't know what mroe I can do as far as being careful. It's really hard since manufacturers lable things Gluten free yet they are manufactured in plants and sometimes on the same machinery as gluten products. I try to stick wiht whole foods and certified GF but there are just some things that I have to have faith in and use. Very confusing... She has other issues with ehr tummy so I never know if she got glutened or if it's her other problems. She ahs down syndorme so her communication of these things is difficult.
Mary Grace

[GFStephanie]

Some celiacs are sensitive to lower levels of gluten than others. Some need gluten free households and some can't eat processed GF foods. I am one of the more "super sensitive" celiacs around and so is my son. You can take measures to keep her more gluten free by taking extra measures. It becomes a balancing act between managing symptoms, and deciding how much trouble you are willing to take. With your communication problems that will make it a lot more difficult to decide. We took more and more precautions as time went on. I think that we started with checking all our toiletries, then making our household gluten free, then avoiding corn and soy, than dairy, then all processed grains. At that point I bought all my grains whole and sorted and washed them carefully before eating. These days we take even more precautions, but you have a long time and a lot of things to try before you might want to go there. I'm guessing that someone here has a nicely written set of things to try.

I don't think that you can tell from the test if it is ongoing gluten, more time needed, or a one time contamination. I would go by symptoms.

Do you have a gluten free household? If not, things manufactured in a shared facility would be about equivalent to food prepared in your house, I would think. In our case, I think that the contamination that happened in our shared household was worse than contamination that we got from shared facilities. My husband left too many crumbs.

[aklap]

You might try removing all grains and processed foods.

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Only registered and activated users can see links., Click Here To Register... 2013 Feb 28;13:40. doi: 10.1186/1471-230X-13-40.
Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.

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Source

Division of Pediatric Gastroenterology and Nutrition, Johns Hopkins University School of Medicine, 600 North Wolfe Street, Brady 320, Baltimore, MD, USA. jhollon1@jhmi.edu

Abstract

BACKGROUND:

Patients with persistent symptoms and/or villous atrophy despite strict adherence to a gluten-free diet (GFD) have non-responsive celiac disease (NRCD). A subset of these patients has refractory celiac disease (RCD), yet some NRCD patients may simply be reacting to gluten cross-contamination. Here we describe the effects of a 3-6 month diet of whole, unprocessed foods, termed the Gluten Contamination Elimination Diet (GCED), on NRCD. We aim to demonstrate that this diet reclassifies the majority of patients thought to have RCD type 1 (RCD1).
METHODS:

We reviewed the records of all GFD-adherent NRCD patients cared for in our celiac center from 2005-2011 who were documented to have started the GCED. Response to the GCED was defined as being asymptomatic after the diet, with normal villous architecture on repeat biopsy, if performed.
RESULTS:

Prior to the GCED, all patients were interviewed by an experienced dietitian and no sources of hidden gluten ingestion were identified. 17 patients completed the GCED; 15 were female (88%). Median age at start of the GCED was 42 years (range 6-73). Fourteen patients (82%) responded to the GCED. Six patients met criteria for RCD prior to the GCED; 5 (83%) were asymptomatic after the GCED and no longer meet RCD criteria. Of the 14 patients who responded to the GCED, 11 (79%) successfully returned to a traditional GFD without resurgence of symptoms.
CONCLUSIONS:

The GCED may be an effective therapeutic option for GFD-adherent NRCD patients. Response to this diet identifies a subgroup of patients, previously classified as RCD1, that is not truly refractory to dietary treatment. Preventing an inaccurate diagnosis of RCD1 avoids immunotherapy. Most patients are able to return to a traditional GFD without return of symptoms.

[aklap]

Here's a more detailed explanation...

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Justin R Hollon^{Only registered and activated users can see links., Click Here To Register...*}, Pamela A Cureton^{Only registered and activated users can see links., Click Here To Register...,Only registered and activated users can see links., Click Here To Register...}, Margaret L Martin^{Only registered and activated users can see links., Click Here To Register...}, Elaine L Leonard Puppa^{Only registered and activated users can see links., Click Here To Register...} andAlessio Fasano^{Only registered and activated users can see links., Click Here To Register...}



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[annelb]

That is great you have been able to bring down the test from 150 to 31. That certainly shows you have greatly reduced her exposure to gluten. As Al and Stephanie say, it may be time to take the another step.

Another article that may be of interest is the small study done showing that a high percentage of grains and flours that might appear to be GF but are not labeled GF are contaminated with wheat. This makes a strong case for using only those products with a GF label. Only registered and activated users can see links., Click Here To Register...

I agree with Stephanie, some people are more sensitive than others.

Anne

[jcc]

I think it probably does mean she is still getting some gluten somewhere. It could be a small continuing exposure or it might have been a one time thing shortly before the test.

Is she on any prescription medications and have you tried to verify those are gluten free? Does she use any over the counter medications?

Take a week or two and scrutinize everything she eats or even handles... do you have pets and might she be handling gluten containing dog or cat food? Does she spend time outside the home, and are you sure those places are doing a good job keeping the environment clean, etc. If you don't find any obvious answer, just do your best to be careful and ask for a retest in 3 months. It must be frustrating to be doing everything right and have the blood test still show up positive. Although, as Anne mentioned... it is certainly a huge improvement!

[mg12061]

Thank you everyone for all the great information! YOu've all geven ne sone thigns to check out. I did find that there's a cracker that she likes to eat that says GF but is not labled Certified Gluten free. I try to stick to things certified gluten free. I've been very careful about preperations I use a clean plate to cut everything never lay anything on our counter top. I use seperate pans for her cooking, seperate containers to store things, always clean silverware. seperate mayonaise butter etc. (squeeze bottles when i can). I've checkerd her medications and toothpaste but not her soap and shampoo ( I will). I think that she has become more sensative over the past year. I make so much of her food myself. I reallya t this point can not go by symptoms because as I said she has some GI problems (which have been helped with surgery) and bladder/kidney problems (which she will have surgery for over the summer). the biggest problem is the communication/speech and language issues she has. She can tell me a lot but not details. She can say her belly hurts but not what kind of pain. I will check out some of the websites and some of her beauty products etc. Thank you again for all your help. Any other ideas are certainly welcome!
Mary Grace

[aklap]

Checking shampoo, soaps, cosmetic, etc usually requires a decoder ring [not as easy as food when it comes to label reading]. Maybe this will help...

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[Newtothis]

I am Celiac and any trace of gluten or wheat causes me trouble. Yep... right down to cosmetics, lotions, soaps,shampoo, conditioner, medications, etc....

I am very very sensitive to any cross contamination and have only 2 restaurants I can go to without getting sick because they understand what gluten is.

[mg12061]

Thank you for all your responses. I've read some of the articles. I have been trying to be even more aware of food preperation for Kathleen and trying to stick to "certified Gluten Free" products. I've researched some products further only to find out that they are either made on the same machinery or plant with gluten containing products, even though they say gluten free. This ahs been the most confusing thing for me. It says gluten free but may not be good enough for her sensitivity. I found a cracker and a BBQ sauce that she eats that I really thought was gluten free but they are made on the same machinery as other gluten products. Did I mention I was happy to see this forum "active" again?
Mary Grace

[Razzle0]

And some are even sensitive to airborne gluten - myself included. So for example, if I go to someone's house and they have cooked wheat pasta within the previous 48 hours, I will get a gluten reaction.

In-store bakeries are a big danger zone for me, too, as is the bread aisle. Used to enjoy walking down that aisle sniffing the aroma of the bread (I used to make my own wheat bread before going GF), but then one time I did this and bam! I had a gluten reaction right there in the store (ugh!)!

I guess this is the long way of saying that cross-contamination or gluten exposure can come from airborne sources, too.

Take care,

-Razzle
Gluten Sensitivity, GF since 2005
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