I have a sneaking suspicion that DD2 might have a gluten sensitivity. However, she tested negative for all allergies including wheat. I have heard some gluten-free folks say that gluten sensitivity doesn't show up on an allergy test, but I am having trouble understanding why it wouldn't. Can someone clarify this? Also, could anyone say if the following is in line with possible gluten sensitivity symptoms:
DD2 is going to be 8 in March and she weaned at age 2.5.
1. Though she was my chubbiest baby, she is now quite skinny: 52" and 51lbs and she has become skinny pretty fast in the past 4 years or so. This is despite a hearty appetite and whole organic foods being made readily available to her.
2. She has nummular eczema that gets worse in the winter and *sort of* responds to topical treatment with calendula cream and some rx Elidel for flare ups, but if we don't apply lotion twice/day to her entire body she has flare ups. Also it has gotten steadily worse every year for the past 4 years, encompassing more of her body each year. This year even her beautiful face was affected.
3. She has HORRIBLE smelling gas. I mean HORRIBLE!! And it's nearly constant! We are a vegan family and so yes, we do eat a lot of beans and things like that but her gas is by far more offensive than any of the other family members' and it seems it's non-stop! The gas is sometimes better if we keep up with giving her acidophilus pills but it's never really what I think is normal.
4. She has had "phantom" stomach pains from time to time. She doesn't seem to complain about them as much as she used to but I could never ascertain the cause.
My situation is complicated by the fact that I am divorced and share custody of her with her dad. I would simply put her on an elimination diet to see if her symptoms improved but her stepmom doesn't think it's practical to be both vegan and gluten free (her dad and stepmom are not vegan or vegetarian but up til now have agreed to respect her diet choices). I know that vegan and gluten free can be done but I don't think they want to be inconvenienced and would rather she sacraficed her veganness, because it's not a "necessity" like an allergy or intolerance. But being vegan is important to her at this point. She really doesn't want to eat non-vegan foods and feels very strongly about being vegan. I feel it's wrong to impose non-vegan foods on her when this is her philosophy and when I know it's possible to be gluten free and vegan. Is there any way to tell, short of an elimination diet, to tell if she may have a gluten sensitivity? Also any advice on how I could approach her dad and stepmom about how to respect her convictions while accommodating an elimination diet?
There are several branched of immunity. That is why wheat does/doesn't show up on different teats.
A wheat ALLERGY would show up on an IgE allergy test (skin prick test or RAST blood test). These are the ones people can have anaphylactic reactions to.
A sensitivity is IgG mediated.
Then there are autoimmune things like Celiac which have to do with other branches.
That said, the "gold standard" is an elimination diet because all these tests are not particularly accurate. So no, a vegan and GF diet may not be ideal but maybe see if they'll go along with it to see for 4-6 weeks? That would be the true test.
Also look up Dr. Fasano's research on wheat allergies, gluten sensitivities and Celiac. It may help explain things more.
Here's some of his work.
Thank you! your response and the paper clarify a lot. DD's symptoms seem to be more in line with gluten sensitivity rather than celiac, and if that is the case the paper seems to imply we would see improvement pretty rapidly on an elimination diet. That might be enough to help convince them of giving it a try. I think it might also help if I preemptively scoped out where gluten free vegan products could easily be found locally. Being able to buy staples like noodles, bread and tortillas that hold similar nutritional value might address their concerns for convenience and adequate nutrition. Our local food co-op carries some gluten free items but the breads either seem devoid of vitamins and/or contain eggs and/or taste gross (I've sampled a few here and there). Whole foods might have more of a selection but I don't think they shop there too often. Might have to see what our regular grocery stores have...just thinking out loud...
Do you have Trader Joe's? They have a lot of the staples we use there (pasta and sauce, corn tortillas).
We do have Trader Joe's. I haven't been there in a while though, because they are literally just down the street from the food co-op and I tend to shop there more. I'll have to check out Trader Joe's; as I remember their prices were usually way more reasonable than Whole Foods
I just posted this for someone else, so I'm copying this for you too. I think it's worthwhile to test to be sure you can rule out Celiac Disease. If she does have CD, everyone--schools, ex-husbands, etc. MUST respect your DD's need for a GF life!
Here's my post from earlier tonight to another person figuring out the gluten dilemma:
We have had some recent experience with this. First, in my opinion, do not go off gluten until you test. No one told me that--not even the parents of the two cousins with true diagnosed Celiac Disease. We are in the midst of a chaos of testing and diagnoses because we went off gluten before we tested.
All that said, the tests are relatively easy and inexpensive ($27 without insurance for the Celiac panel and for us $2.70 with insurance). And, if you test negative for Celiac and still want to go off gluten (which I also agree with) then you don't mess up any tests (you need to be on gluten to test accurately).
Here's our chaos, for what it's worth:
DD1: Did not suspect anything. Left her on gluten. Tested for Celiac Disease because suspected DD2 might have an issue. DD1 tests positive for Celiac Disease.
DD2: Struggled with misc. complaints, primarily itching and "growing" pains. Took her off gluten. Problems resolved. Put back on "light gluten" to test. DD2 test negative for Celiac Disease. (This is confusing...so now I have to decide if she is off gluten forever or just "light gluten", etc.).
DH: Since this seems to be a genetic disease from his side, do both genetic and Celiac Panel. He tests negative on all.
Me: I went "light gluten" as I weaned DD2 off gluten. Had some major embarassing incidents (ahem, pooping in my running tights on a 5 mile run--gross!--after eating a piece of toast after having had no gluten in my system for awhile). Tested myself on genetics (I have both Celiac Disease genes) and I tested negative for Celiac Disease.
Sound confusing? It is. Test first and then pull yourselves off!
Tough on extended families? Yep. My Mom gently asks if we're GF yet every time she wants to hand out Oreos. (We're not yet--we're deciding on whether or not we biopsy).
Best book to read: Celiac Disease b y Green and Jones
Sites to scour: celiac.org especially the handouts http://www.celiac.org/images/stories/PDF/are-you-the-one.pdf
Net/Net: Don't go off gluten until you do the tests. Then, based on results* decide if it is a LIFESTYLE/PREFERENCE choice or a LIFE/DEATH choice. I purposely made this in all caps. If you have Celiac Disease, the only way to manage the disease and not get really sick or die from related illnesses is to stay off gluten 100% forever. (DD1 will likely have to be GF forever). If you decide gluten is just plain bad news that is fine too. (This is likely for me--I have no desire to repeat my running disaster ever again. I have the genes to develop CD and my body does better without gluten--less bloating/flatulence, etc.).
*Note: a positive test on the Celiac Panel generally means CD is highly likely. A negative test on a Celiac Panel is less reliable.
Hope this helps.
Thinking of you!
And, GF isn't that hard or that bad!