Not Again..

[Nantzie]

I'm too sad to tell the whole story right now. In a nutshell, my husband said that he doesn't believe in celiac disease and the reason I didn't feel good was because I drank too much soda. As far as Jenny goes, he said that he thinks the reason she wasn't feeling good was because I microwave most of her food, and if I would at least just give her a Flintstone vitamin, she wouldn't have started feeling sick. He said that he doesn't want our kids to be stigmatized in school and be the weird kid over in the corner because they can't eat what everyone else is eating. He says that unless a doctor tells him that she can't eat any gluten for the rest of her life, he's not going to believe it, but then he doesn't want her to get an official diagnosis because he doesn't want her to be stigmatized. He says that he didn't see her having any symptoms, so he doesn't even know why I tested her. When I tell him what her symptoms were, he just ignores me. He doesn't even seem to notice how much better she's looking, acting and feeling.

At this point, I have no choice BUT to go for an official diagnosis, because if he "doesn't believe in it" unless the gluten-free diet comes from a doctor's mouth, what choice do I have? But, she's already been gluten-free for over a week. She caught on right away to the gluten thing and refuses things that have gluten in them and says they'll make her tummy hurt. I can't even stand the thought of giving her gluten so that she can have a biopsy in God knows how many weeks.

I just want to lay down and cry.

I don't know what to do. Should I put her back on gluten? If I need proof of her condition for any reason in the future, this is my only chance to do it.

Nancy

[CarlaB]

My biopsy was negative, but you can see my enterolab results in my sig. I'm wondering if a negative biopsy has to do with the genes that you and I both have. If so, then I definately wouldn't bother with the biopsy for your daughter. Maybe a meeting with that great doc who said dietary response is the most important thing would help. If hubby needs to hear it from a doc, it's worth setting up and appt. Be sure the doc knows your daughter herself doesn't want to eat it because it makes her feel bad. Your husband has a bad case of denial. I went through it myself. It's hard to admit that you or a loved one has a chronic incurable disease. I was more upset that my daughter had it than that I do!

[Green Fingered Gaelic]

I was going to say exactly what Carla said. Except I probably wouldn't have put it so well.

Growing up with this as a kid I never felt like the freak or anything. Also that there are few reasons to argue that gluten should be included in a diet. So hubby don't really have a leg to stand on.

Try to drag him back from his dramatic extreme examples. Also focus him on the consequences.

I'm glad you've noticed results so quickly, but to adhere to a strict longterm diet is a marathon

Finally tho it would be nice to get a doc to back up the theory. It'd give you some concrete to work on.

[CarlaB]

I just thought of something else. The US government has just written some kind of documents on celiac and celiac awareness. National Institute of Health, I think? Anyway, you say your husband doesn't "believe in" celiac? Maybe if he had more info and saw that the US government is concerned about how underdiagnosed it is he would be less able to deny its existence.

[Nantzie]

If you guys hear a big POP, that's just my head exploding.

Today, of course, he was all nice. I'm just so over his extreme (good word) thing. We had some family visits that we had already scheduled, so we went and did that. No drama. I wasn't terribly friendly to him, but I don't think anyone noticed anything, ya know?

So we get home this evening, and after I put the kids to bed I told him I need to go to the store, and does he need anything.

Then he says that he wants to try my diet, so to pick up whatever he can have.

POP!

I mean don't get me wrong, I'm glad he's trying it, and maybe recognizing something in himself, but the roller coaster ride I've been on the last 24 hours has SUCKED.

Another aspect of this is that he has testosterone deficiency, which he takes patches for (kinda like Nicoderm). If he misses a couple of days, he gets like this EVERY DANG TIME. So it's kind of like being glutened. But it's not like he wasn't thinking these things all along. Him not taking his patches just made his edit button malfunction, and he just told me every thing he thought was wrong with me for the last six months. Fun...

I'm so glad tomorrow is Monday and he's going to go to work. I need a break.

I'm going to email him and let him know that if he wants to do the gluten-free diet, it's going to take some advance planning on my part. I don't mind a single bit making him food to take to work, but I need some time to plan it out. So maybe I can talk him into having his "last hurrah" with the gluten food, and commiting to going hardcore gluten-free for at least a month starting on a certain date.

So it's good news.

Nancy

[Green Fingered Gaelic]

Rather than mail him you could just get on with it. If he is aggreeing to roll with the gluten-free diet, it would be diplomatic to ease it in gently rather than sending in the bombers. You could shock him into overreacting again.

Its great that this has worked out for now.

Tis time to get on with tomorrow and forget about yesterday.

Good luck

[CDFAMILY]

Nancy,

I am sure this is hard for your husband to understand. It is hard for all of us because there is still so much the doctors do not know or understand yet.

Maybe have him read this file on gluten sensitive vs celiac disease. This file was developed in Braintalk by some very intellingent people that have done a lot of research. Jcc who put this site together also has double DQ1 subtype 6. She and her daughters were having many neurological problems that were resolved with the gluten free diet.

Here is the site: Open Original Shared Link

Here is the gluten file: Open Original Shared Link

If you have any questions, you can find her on this website until Braintalk 1 comes back in September.

Open Original Shared Link

CDMOM

[Guest nini]

my child is NOT the "weird kid in the corner" she takes her lunch... today it's a taco (how weird is that?) and she goes through the lunch line and gets fresh fruit and milk, and sometimes a veggie if it's plain green beans or corn or broccoli... (I checked with the cafeteria staff to make sure these were not seasoned with anything and are not cross contaminated) For snacks I send her with the gluten-free pretzels, K-toos (which look JUST LIKE Oreos) or other gluten-free cookies, fruit cups, pudding cups, yogurt, Funyons, Cheetos, Fritos, baby carrots, an apple or banana... no one questions her at all. For sandwiches, her bread LOOKS LIKE regular white bread (it's Kinnikinick Italian Tapioca Rice Bread) So she has her peanut butter sandwiches or bologna sandwiches or ham and cheese... on and on...

anyway, I go through rollercoaster emotions a lot with my family and while they are getting better about it, I just have to roll with the flow and ignore them when they act ridiculous. My daughter did not have positive bloodwork, did not have a biopsy but because of her positive dietary response and the fact that she refused to eat any more gluten because it hurt her tummy, was enough to convince her pediatrician that she has it. Remember of all the testing methodologies, Positive dietary response is the most definitive test there is.

[CarlaB]

Positive dietary response is the most definitive test there is.

My ob/gyn is the one who does my yearly blood work now when I'm there for my regular checkup. This is what he said. Dietary response IS clinical proof.

[queenofhearts]

I just thought of something else. The US government has just written some kind of documents on celiac and celiac awareness. National Institute of Health, I think? Anyway, you say your husband doesn't "believe in" celiac? Maybe if he had more info and saw that the US government is concerned about how underdiagnosed it is he would be less able to deny its existence.

Here's the link to the NIH site:

Open Original Shared Link

I'm glad your husband is back on your side, at least for a while. Maybe you could get his gluten-free promise in writing?

[Nantzie]

Thanks guys. I've given so many people that NIH thing. But I don't think I've ever had my husband read it. And thanks for the link to the Braintalk info. I hadn't been active on that board, but I looked up tons of stuff there. I do remember jcc and our similar genetics.

I told my husband this morning that I'd have to plan ahead and maybe he should just take this week and go eat the foods he won't be able to have. At first he said no, he wanted to start it today. But then he remembered it's the last week of the month, and his company brings in food every day for lunches, so he's going to start it next week.

I know what you mean Nini. I never gave a crud about what anyone was eating but me. I don't think most kids, or even most people, do. And I went to jr high and high school with my husband. There was never a time where everyone had a mandatory lunch. There were always kids who brought their own, and I think most kids brought at least a couple days a week. And actually, the school lunches in our schools were so nasty that I don't think many people ate them. (Gray hamburgers anyone?)

Except for one similar freak-out when I first got diagnosed, he's been great about all of this, and even cooks with my gluten-free flours and has me check on ingredients he's not sure about. So this really came out of left field. I'm hoping this is the last I see of this. I think part of it is that it's different when it's your child, and part of is that we found out that both of the kids have two copies of the genes, which means it's floating around in his gene pool too. So the celiac-like symptoms he's been having might actually be (gasp) celiac.

But, like I've said on other threads, gluten is like a drug, and people don't like it when you mess with their drugs...

We'll see what happens. Thanks again everybody.

Nancy

[CarlaB]

You mentioned his hormonal issues. Maybe he was just a bit hormonal. We all get that way sometimes, we just don't think of it with men.

[kabowman]

My husband can get very moody. This morning, he was upset that I was leaving before he was (I am trying to get to work early so I can leave early) but over lunch, he was fine. Tonight, it will probably be back to moody hubby. But, tomorrow morning, he will wake up early, make our eggs (me 2, him 2, youngest son who is 13, 7 eggs), move his car so I can get out, and be all smiles.

The kids even know when to lay low when he gets moody and it is on a cycle, I just haven't been able to track it - maybe I need to start keeping a hubby calendar, similar to a girl calendar.

Also, this all depends on how much his ex-wife bugged him over the day, how much he misses his daughter or how much she makes him misserable because she doesn't want to spend time at our house, how much his boss bugged him today, etc. Very, very moody - BUT, wouldn't trade him for the world - even when he is moody, I get spoiled. When I point out he has been a pig recently, he works on fixing it...

[Nic]

I think also we would all like for our children to not have any type of illness. When my son was first diagnosed my first thought was, "well, what if it is wrong, maybe he is not sick". I knew he was, still gave him the gluten-free diet, but really hoped it was wrong. He has adjusted so well to the diet but I still see that look in his eyes when he is the odd man out because someone unexpectedly popped out something he can't eat but everyone else can. Maybe your husband is just having a hard time accepting that your daughter could end up in a situation where she feels left out. Sometimes I feel as though as parents these thing hurt us more than the kids.

Nicole