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Anyone With An Unsupportive Spouse / Family Members / Friends?
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I've just been so fatigued lately, and it's so hard to even think straight. It's even affecting my speech. I've always had a little bit of a stammer, but now I sometimes struggle to even come up with the word I want to say. I just draw a blank!

This hits the nail on the head for me -- that's exactly what I went through for most of my life, like clockwork, every afternoon.

Anyway, I think the board tends to act protectively of disrespected celiacs, which is very sweet of everyone, but a little tricky when it's about someone you love. I hope your husband has started to learn a little bit about this disease and see how serious it is since you first posted. It does sound ridiculous the first time you hear of it. I know I've jumped on a lot of quick-fix solutions in my search to not feel sick all the time, and my husband considered most of the ludicrous, and they were. (Like, the kitchen looked like a science lab sometimes.) But he caught on that this was different, probably because he's type 1 diabetic and knows how serious autoimmune stuff is. Without that experience, it can take a little while to get on board.

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I'm also getting my hearing check, because I've had awful tinnitus for the past year or two. I just wish I could have some "peace and quiet".

There's a variety of things that can cause ringing in the ears and not everyone is the same. Mine finally went away when I went off all grains and sugar. I currently allow a little grain and a little sugar but I have to be very careful or the ringing comes back.

It is not always easy not getting support especially from a spouse. When I was first diagnosed it was not by tests, it was by a doc who decided to call it celiac based on symptoms, going off wheat and then going back on and getting terribly sick. So husband would tell people "we weren't sure it was celiac, that maybe my system just needs time to heal."

After reading so much about how bad wheat is for you I convinced my teen daughter to go off and my husband even gave it a try. My daughter noticed a difference, said she felt so much better. Husband said it made no difference to him and went back to his gluten stuffing. I still have a hard time watching him fill his mouth and plate with gluten as I truly it is bad for people in general.

I used to tell everyone my story and I used to hard about wheat but I have finally gave up, people don't want to hear it, they don't want to try it and they don't think it applies to them. One of my last straws was with my husband not that long ago. He said, "I am sure glad I don't have issues with wheat." I didn't do well with that statement. I really don't think he gave a real good honest try so how would he know and that was the last for me to talk about gluten.

My friends have been great, my daughters wonderful.

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My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.

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Listen to your body, first. Now as to the hubby...mine was so unsupportive in the beginning (yours sounds like mine) but the longer I stayed gluten free, the more he cared (guess he realized how sick it made me when I had no trouble passing up my favorites and he started researching cross contamination and telling me about). Fully supportive now, although he says he would never let his body win like that. I just said it must not make you sick enough. Extremely supportive since anaphylactic reaction (testing for allergy Jan11, had neg celiac blood panel before going gluten free) Wednesday and ending up in ER unable to breath when reaction started the normal gluten exposure way.

So long story, short. Give him time, hold your ground and follow what the doctor and your body tells you. No one has to give permission for gluten free lifestyle except you.

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My husband is my rock. Is it possible to be too supportive? If so, that is him. He is hyper alert and aware and does everything he possibly can to protect me. Our families, though not everyone "gets" it, are extremely supportive so I am very fortunate and grateful. When my husband eats gluten it is at work when I am absent, then he is careful not to kiss me until he brushes his teeth.

Awwww he sounds just like my hubby. I don't know what I'd do if he wasn't supportive.

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Awwww he sounds just like my hubby. I don't know what I'd do if he wasn't supportive.

That's so great to hear. It certainly makes things easier to bear and deal with! :wub:

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hi Guys.

Just so you know--

the original poster, Menquet

has not been active on the board since July 2011

and may not see your responses to her.

But you can still talk with each other, of course. :)

Just wanted you to know (in case she does not reply to your helpful responses).

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
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    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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