Gluten Sensitivity Or Celiac

[kvanrens1]

My daughter, adopted from China, is DQ7 and DQ9. She has a host of digestive and growth issues (see my signature) and has been through extensive medical testing for everything from cystic fibrosis, H. Pylori, celiac disease, etc.

Her celiac blood panel (not full) was negative 3 years ago and her endoscopy came back negative last Fall. Her pediatric GI doc labeled her with "functional abdominal pain" but I disagreed due to her chronic gastritis, pancreatic insufficiency, and failure to thrive diagnosis.

Based on the enterolab results, we put her on a gluten free diet in March. So many of her digestive issues have resolved by being gluten free including her pancreatic insufficiency (retested in July and all normal). The principal at her school commented yesterday at how healthy my daughter looks now. Her hair is thicker. She no longer gets ulcers in her mouth. Her tummy troubles have vastly improved. She feels and looks so much better.

We know due to the positive response to the diet that she is at a minimum gluten sensitive. My concern is her response to cross contamination. For example, a month ago we ate at PF Changs and ordered off the gluten free menu. We have done this three times in the past with no trouble. My son and I shared the dishes with her (I am careful about eating utensils etc.). Within 3 hours of eating, she had D so bad that she did not make it to the toilet (had to clean up floor and clothes - very embarrassing for an 8 year old). Son and I had no trouble with the meal. I am assuming that the food was cross contaminated. Over the past couple of weeks, she has complained more of stomach aches (2 really bad and around 5 minor) and the only thing that has changed in her diet was that I was sending the snack size rick cakes (quaker oats - savory) every day. There are no gluten ingredients and no warning of cross contamination so assumed they were safe. After racking my brain trying to figure out what could be the cause, I read here that some people have had problems with these rice snacks due to cross contamination issues so I did not send any with her this week and guess what no more stomach aches.

I know her chances of having celiac disease is very, very small but is it common for these very sensitive reactions for gluten sensitivity? I am still trying to wrap my mind around the reactions for celiac disease to gluten sensitivity.

[gatita]

I feel for your daughter!

I hope someone with more scientific knowledge than I comes along to answer this.

For what it's worth, my doctor did not want to do an endocopy on me because my duodenum is very inflamed and ulcered. But because of certain blood tests and an elimination trial, my diagnosis is "probably" celiac and at the very least severely gluten sensitive... since the treatment is the same, we left it at that.

All of this is by way of saying I am extremely gluten sensitive and in fact, suffered greatly after a recent dinner at PF Changs As you say, probably cross contamination.

So I do believe gluten sensitivity can show symptoms as severe as celiac, but maybe others around here know more about this.

[ravenwoodglass]

Even though she tested negative she could still be celiac but even if she is what they term 'gluten sensitive' she could still be that sensitive to CC.

I am a double DQ9 and didn't show up in blood work even when close to death. I was finally firmly diagnosed celiac. I am very, very sensitive to cross contamination.

In addition to the possible CC issues at her age they may be using unsafe items in arts and crafts at school. Things like play doh and finger paints and glues can be an issue. May not be a problem for her but I make sure to wear non-latex gloves when working with any of that stuff.

Glad to hear she has been doing well on the diet. Hopefully it won't take to long for her to recover from this incident.

[kvanrens1]

Thank you both for your comments. It is hard, for me, to understand the way gluten could cause so many health issues for her and to be without a "medical" diagnosis. She is in a small school and they have been fantastic with working with us. This school only goes to sixth grade and I do wonder what we will do when she goes to a larger school. I feel like at some point we will have to have something in writing from a doctor to allow her food accommodations at school.

I do need to remind her to wash hands after art at school. I have checked our art supplies at home.

We also found out the hard way that she has to scrub her hands after feeding her hamsters. The second or third ingredient in the hamster food is wheat. It is everywhere.

It's funny. After doing this for six months, I walk through the grocery store and all I see now is GLUTEN.

[GottaSki]

Should there come a time that you need a diagnosis/medical note I suggest you look for a gastroenterologist that specializes in Celiac Disease. Whether your daughter has Celiac Disease or Non-Celiac Gluten Intolerance (NCGI), they should be able to help you get the documentation you need.

Personally, I think it is quite possible that your daughter does indeed have Celiac Disease - negatives do happen - especially in children. She did not have the full celiac blood panel and if the GI was not experienced with celiac biopsies they often do not take enough samples.

Some doctors will diagnose by dietary response alone. If needed seek an expert in the field.

Best wishes for continued healing for your daughter

[Takala]

Last winter I found out that the reason I was slowly getting symptoms again (at that point 8 years in) was that I was reacting to gluten free flours milled in the same facility with oats. Buh- bye Bob's Red Mill brand for me, hello feeling a lot better. I also had to stop using the almonds I was buying in bulk from one store, because they are run in the same facility as wheat products. And I was getting sensitive and subtly reacting to a lot of things like certain artificial sweeteners, which is more likely my reacting to some of the fillers they bulk them out with. Latest mystery solved was I shouldn't boil rice noodles in iodized salt with dextrose, which is a starch derived product.

No official diagnosis either, and in earlier years posting here, I had a bit of a time convincing anyone that some of us are sensitive to cosmetic residues. And I had so many things wrong with me, and all these doctors missed it. What matters is that at least now we can try to help each other avoid the stuff !

[ravenwoodglass]

Thank you both for your comments. It is hard, for me, to understand the way gluten could cause so many health issues for her and to be without a "medical" diagnosis. She is in a small school and they have been fantastic with working with us. This school only goes to sixth grade and I do wonder what we will do when she goes to a larger school. I feel like at some point we will have to have something in writing from a doctor to allow her food accommodations at school.

I do need to remind her to wash hands after art at school. I have checked our art supplies at home.

We also found out the hard way that she has to scrub her hands after feeding her hamsters. The second or third ingredient in the hamster food is wheat. It is everywhere.

It's funny. After doing this for six months, I walk through the grocery store and all I see now is GLUTEN.

If she has been ill and has improved greatly on the diet your ped may give you the documentation you will need without having to take her to a GI. The ped has seen her issues and will see them resolve on the diet and be sure to mention the reactions she suffers when glutened. Since celiac is really not solely a GI disorder it is not just a GI that can give the 'diagnosis'.

It might be a good idea to look for a wheat free hamster food. Even though she is washing well after feeding and handling the little guy she may still be breathing in the dust which is not a good thing. Make a post in the products section of the board for suggestions as this problem has come up before and there maybe folks on the board that can tell you what brand to use.

[MitziG]

I would not consider her chance of celiac small at all. She has the genes. She has symptomms. She has a positive response to a gluten-free diet. She is a celiac.

Blood tests in young children are not great at catching celiac disease (even worse when they don't run a full panel!)

It is probably the rice cakes- guessing they were cc with oats, which would not have to be labeled. Most oats are cc with wheat.

As for PF Changs...could be anything. Sadly, the risk with eating out is a big one, and those who have severe reactions like your daughter often opt to just stop taking that risk!