Issues With Helping Others Understand That celiac disease Isn't A Psychosomatic Disease...

[Rachel W.]

Hi, I'm Rachel and I'm new to the forum so I apologize if this topic is similar to others posted.

First a bit of background...I started noticing symptoms in early 2008

I was bloated beyond all imagination, and my stomach was distended to the point that people thought I was pregnant. I had to put lotion on my face four to five times a day just to keep it from flaking. I had rashes, and did I mention painful bloating? Early February of this year my celiac symptoms reached a debilitating point. For three weeks straight I had diarrhea (sorry if TMI) every time I ate, more than once a day usually. I'd heard of celiac disease but was under the impression it was a "quack disease." Those words came back to haunt me lol. I started spending my sleepless nights trying to figure out what in the world was wrong with me, and I found myself on a celiac forum reading about the symptoms of the disease. I had every single symptom but one.

At first I was skeptical, so I stopped eating gluten for a week. Then I started eating it again, and within 12 hours I was living in the bathroom again.

5 weeks ago I gave up gluten for good, and considering my love of Italian food its been surprisingly easy.

Now to the point...

My husband (while loving the gluten free induced weight loss) is skeptical of my problem, chalking it up to a psychosomatic problem. I understand this because ever since becoming gluten-free I've been extremely afraid to eat, and when I do eat I'm afraid it's going to make me sick. I realize I'm probably causing him to not believe me, and my hellish three weeks are laughable to what most people experience before going gluten-free, but I don't know what to do. I understand how he feels, but he does not understand how I feel.

This evening I made supper and didn't realize one of the ingredients contained wheat flour...I was sick within the hour. I also didn't mean for that to rhyme lol

Does anyone else know what I'm talking about? I just want him to realize I'm not making this up. I don't want to be living on the toilet everyday...that's my worst nightmare at this point.

Any advice would be great

[ravenwoodglass]

Hi and welcome. I don't have much time so this will be short. Bring him here and get him to read as much as you can. Also visit the NIH website, they have a Celiac Disease Awareness Campaign going on. You should also consider getting at least blood testing done ASAP and continue on gluten until you do so. I am glad you have had such a great response. You have come to a great place for knowledge and support.

[mysecretcurse]

Hi Rachel!

First of all.. grrrr. It REALLY rubs me the wrong way when I see these post about people husbands or wives not supporting them, not believing them or other things like that (I even remember a post about a womans husband constantly trying to talk her into eating gluten or something like that- WTF!). Your husband should respect and trust you enough to NOT QUESTION your ability to understand whats going on in your own body. I think thats pretty messed up. Im single now but my ex is still one of my best friends, I was with him during the time I figured out I was celiac and he was very supportive of me and helped me in every way I could and Id never accept anything less, so if I were you Id be pretty angry about this. (not trying to upset you, Im just saying, it upset ME reading this.. because I don't think you should have to "help" him understand it's not psychosematic.. he should just believe you!)

I don't get why people would think this is a "quack" disease.. just curious, why did you ever think that???

This is as much a disease as any other disease.. I don't get where that mentality comes from.

Just the other day I was explaining to someone what happens when I was glutened, and all wide eyed, he goes "REALLY? Wow.. I always thought "gluten" was one of those made up new age BS things"... WTF

Tell your hubby to do some research. Tell him he's lucky you aren't divorcing him too. Id be pissed!

[Rachel W.]

Hi and welcome. I don't have much time so this will be short. Bring him here and get him to read as much as you can. Also visit the NIH website, they have a Celiac Disease Awareness Campaign going on. You should also consider getting at least blood testing done ASAP and continue on gluten until you do so. I am glad you have had such a great response. You have come to a great place for knowledge and support.

Thanks so much! I didn't know about the awareness campaign. Yes I was planning on getting blood work done, but the fact that I'll have to eat gluten again makes me nervous, so I'm trying to muster up the courage as ridiculous as that sounds.

Thanks again for your comment

[Rachel W.]

Hi Rachel!

First of all.. grrrr. It REALLY rubs me the wrong way when I see these post about people husbands or wives not supporting them, not believing them or other things like that (I even remember a post about a womans husband constantly trying to talk her into eating gluten or something like that- WTF!). Your husband should respect and trust you enough to NOT QUESTION your ability to understand whats going on in your own body. I think thats pretty messed up. Im single now but my ex is still one of my best friends, I was with him during the time I figured out I was celiac and he was very supportive of me and helped me in every way I could and Id never accept anything less, so if I were you Id be pretty angry about this. (not trying to upset you, Im just saying, it upset ME reading this.. because I don't think you should have to "help" him understand it's not psychosematic.. he should just believe you!)

I don't get why people would think this is a "quack" disease.. just curious, why did you ever think that???

This is as much a disease as any other disease.. I don't get where that mentality comes from.

Just the other day I was explaining to someone what happens when I was glutened, and all wide eyed, he goes "REALLY? Wow.. I always thought "gluten" was one of those made up new age BS things"... WTF

Tell your hubby to do some research. Tell him he's lucky you aren't divorcing him too. Id be pissed!

I'm wondering, what does glutened mean? I've seen it all over the forums and I have an idea, but before I use it in the wrong context I thought I'd ask

As for the husband...well I wrote this post right after eating the supper I mentioned. So I was sick/weak and extremely frustrated because he chalked it up to my fear of eating hidden traces of gluten. Once I explained to him that there was in fact wheat flour in the soup I made, he realized he'd been an ass. So at least that has been resolved.

I thought celiac disease was a quack disease because frankly I was uninformed. The first time I read about it was on a forum trying to argue its lack of legitimate evidence supporting it as a real physical problem. So you might say I got a bad first impression, and obviously no longer view celiacs as I once did.

Thanks so much for your comment and advice

[GFinDC]

I think people tend to dismiss things they don't understand or aren't familiar with. It turns out the world really isn't flat though! I really didn't believe it was possible to be affected by such tiny amounts of gluten at the beginning myself, and I have the disease! So I can understand other people needing some time to adapt their way of thinking.

Oh yeah, glutened means you accidently ate something with gluten in it.

[Tallforagirl]

As for the husband...well I wrote this post right after eating the supper I mentioned. So I was sick/weak and extremely frustrated because he chalked it up to my fear of eating hidden traces of gluten. Once I explained to him that there was in fact wheat flour in the soup I made, he realized he'd been an ass. So at least that has been resolved.

You and your husband will both need time to get used to your new lifestyle. My BF took a while to get used to the idea when I was first diagnosed, because like you I was afraid of eating anything when I didn't know exactly the ingredients. I had no symptoms to speak of, so he couldn't get his head around the idea that one day I was happily eating platefuls of gluten, then the next I was worrying about the smallest crumb.

I agree with Ravenwood glass, it's worth getting the testing done. If nothing else you'll be able to show your husband a piece of paper to prove you have celiac disease!