"are You Going To Be So Strict About Gf?"

[sashabetty]

Arrgh! So my 2yr old daughter had the tests, blood (inconclusive due to low total IGA) genetic(has one gene) and endo(no visible damage found) but she gets sick and stops gaining weight when she eats gluten. So that is all I need to know for now.

So I told my MIL that we are gluten-free at home, and my daughter is gluten-free everywhere. She likes to have us over for dinner occasionally and babysits my kids 1-2 days a week. And she asks if I am going to be "as strict about being gluten-free" as I was before we pursued testing! The problem is that she has a friend that self-diagnosed as gluten-sensitive but still eats spelt so she thinks I should make similar choices for my daughter. And MILs neighbor was just diagnosed as Celiac through endo and still eats like half a gluten doughnut or whatever and says her children had Celiac but outgrew it. So I am the weirdo that says no spelt no cheating.

To me it's pretty all or nothing, I don't think it's healthy for my daughter to eat "just a little bit" of gluten. Nor do I appreciate when my MIL wants to give my daughter junky sugary treats (but it's gluten-free!) when I would never feed her those foods. And she lives right by a gluten-free restaurant (!) but she won't think of going there with us.

And I am so sick of having the conversation explaining why there is a value in feeding my child in a way that is "socially isolating." I usually just resort to "I am the mom, so too bad if you don't understand" but some people just want to push the issue, and unfortunately I can't avoid my family who are otherwise wonderful.

Anyone share my aggravation?

[darlindeb25]

many of us share that aggravation--now i have a sister who is celiac too and my dad has just been put on a gluten-free diet too---most of our family has been very supportive, at holidays, there is always a variety of things we can have---now my brother gets this look on his face like we are idiots and states----dont even think i will ever do this stupid diet----well, ok jeff, fine for you------what you need to do is find some articles in here that explain the importance of gluten-free for a celiac and that explains what happens to us if we continue to eat gluten--print them and have the non believers read them--i just read about a man they called joey c that toured with Kid Rock---he was celiac and had many complications with his disease too, he died at the age of 26 while taking 60 different medications daily--i havent been able to find out when he became gluten-free or why all the meds, but you can try to explain to your MIL that children dont develop so many of these diseases if they are diagnosed at a young age and that is a big plus for your daughter---keep at it and try not to get so flustrated with them all, it is only bad for your health then--deb

[tarnalberry]

At the end of the day your MIL doesn't have to understand or believe you, she merely needs to respect you. It may be that the time for explanations is over, assuming she's read the appropriate medical literature (perhaps she'd believe the NIH report?).

[FreyaUSA]

Just as people with DH can test gluten sensitive but not have a positive biopsy, other people who test positive only with the IgG anti-gliadan antibodies (thus not receiving the doctor affirmed celiac disease label) can have neurological manifestations of gluten intolerance (I've heard this termed "gluten ataxia" or "gluten neuropathy" in different places.) According to this article (which I found very informative since my father died from this and only at the very end showed any GI problems) "IgG anti-gliadin antibodies have been the best diagnostic marker in the neurological population we have studied." Not the others! I think if your daughter is reacting well to a gluten-free diet, tested positive for IgG, she definitely is sensitive. This is a much less understood/studied area of gluten intolerance, but for me, knowing that just a little gluten is causing damage to my brain and my children's, I am even more adamant about strictly adhering to a gluten-free diet for all of us.

Gluten sensitivity as a neurological illness, by M Hadjivassiliou, R A Gr

[esmey]

My husband was diagnosed celiac this summer and only of late my eldest son, aged 2 and a half was also diagnosed.

My mother in-law, though refuses to belive and still puts gluten in the food. We were at her house this weekend and my husband got very very tierd and had tummy ache afterwards. We asked her if there was gluten in the food and she said she put in a tiny bit of flour. She didn't think it would hurt, if it was only a bit!!

Anyway, I wouln't get frustrated about it, she probably means well she just doesn't understand the damage that a tiny bit of gluten causes.

You need to sit with her and try and make her understand that Gluten free is only for the best for yourself and your child and not for nothing!

[stef-the-kicking-cuty]

Try the Enterolab tests. They are much better than the blood tests and you can be gluten-free for that.

Stef

[mommida]

Give her the information, and ask her why she thinks hurting your child ("a little bit") would be o.k. Spelt is gluten.

We just moved closer to Kid Rock and he is supposed to be owner/part owner of a restaurrant out here. ( All neighborhood gossip) We went to check it out. The chef was wonderful! He came out and worked with us for a safe meal. If anyone is ever out to Ortonville, Mi I reccomend Bullfrog's.

Laura

[gf4life]

Some of the hardest people to convince that the diet needs to be adhered to very strictly are the ones who know about gluten intolerance/celiac disease and think it is no big deal. Before we were diagnosed I only knew of one other person in town who has it. He gets DH really bad, but he won't stick to the diet because he 'doesn't have problems with his digestion". His wife tries to cook gluten-free for him, but he doesn't even try to be gluten-free at all. So she doesn't do it very often. He eats a gluten-free meal maybe once a week. I hesitate to eat at their house, because they don't really understand what it means to be 100% gluten free. They think being partially gluten-free is enough. For me it isn't. It is either 100% or nothing. Even the tiniest amount makes me sick and there is no way I am going to work so hard to be gluten-free and still feel sick all the time because I don't want to eat gluten-free 100% of the time. That is just crazy.

I don't really know what you need to do to get your families to support you. It has taken my MIL almost a year to get used to the idea, and she doesn't even cook for us. We only see them about 6 times a year. They came to our house last month for my son's b-day party and the only sauce I had for their dinner had wheat in it (my husband is NOT gluten-free) so they were dissappointed that we could not eat the same meal as them. She is starting to ask more questions and is more aware of what we can and can't eat. She was also very surprised that the wheat free soy sauce tasted good. My husband is Philippino and his family lives on soy sauce, which of course means we have nothing to eat when we go to their house. They were having a hard time accepting that we couldn't have anything with soy sauce. I had to explain that we can still have soy sauce, but only certain special brands. I actually like the San-J Wheat-Free Tamari better than the old Kikkoman and other brands we used to use. One question my MIL asked my husband last month was "are they still on that diet?" My husband said,"Yes Mom, it's lifelong. They will always have to eat that way." Then she asked me if it was possible her son (my husband) had it. I told her yes because the way the genetics came out he gave some of the genes to the kids which means my in-laws have at least one gene each as well. Of course they aren't at the point yet where they might be willing to get tested. Maybe they would if my husband would get tested himself...

God bless,

Mariann

[MySuicidalTurtle]

Even if she didn't get sick from gluten your family should respect the way you raise your child. If you said no sugar or no meat then that should be that. Your rules. The fact is that a little bit of gluten will make her sick and since she is so small you have set the rule that she can have no gluten. I don't get wy people have issues with others not eating gluten. If she gets older and decideds she doesn't care about being gluten-free thats one thing but she is a child and relies on her faimy to keep her safe. That little bit of gluten isn't keeping her safe and her Grandma needs to understand that its bad. Some people will never get it though.

I hope you resolve this issue!