Depressed...

[Agee]

Hey there -

After months of hideous stomach cramping and constant diarrhea (actually, for the past 7-8 years I've had constant diarrhea but this was worse than before) I finally figured out that I have a sensitivity to wheat. I don't know exactly what it is because I haven't seen a doctor but I responded immediately to going gluten-free and every time I've had an accidental slip I have had terrible reactions.

Other symptoms (?): leg cramping, low energy, cravings for glutenous foods, hunger, and bloating and oh yeah, a little itchy, painful rash on my rear end that doctors have been telling me for 5 years is a fungal infection (eeuw).

Anyway, I am feeling a little depressed about the whole thing. I know there is a problem and I know that this is the solution. My husband wants me to go see a doctor and get a "real" diagnosis. I'm not adverse to this but it bugs me that he won't accept that I have this problem without an expert telling me. Also, I am overweight by about 40 lbs and in everything you read or hear it says that celiacs are wasted looking so everyone I've told gives me a look like I'm crazy. I actually have tried really hard to lose weight in the past but nothing happens - I guess the only bright side in this is that I'm thinking I might lose weight once my gut gets back in order.

The thing that is bugging me the most is that I have always prided myself on not being a picky eater and very low maintenance in that regard - but all of a sudden I have to scrutinize everything, call people before I go to their house to see what we're eating, and read every label there is. I cannot believe how many things contain soy sauce or modified food starch. It's hugely annoying! Also, I have 2 very picky children at home and it was already a struggle figuring out what we could eat that they would eat and wouldn't be hot dogs and mac and cheese every night. AARRRGGGH!

I could go on and on about it - I'm sure this is a common stage of figuring this all out, but I needed to vent. I'm also thinking the easiest way to get a diagnosis is to get my rash looked at in regards to DH - because I'm sure that's what it is. Not too keen on a biopsy and don't have the $ for enterolab. No doubt the dr. can do blood tests, though what will I say to people if they come back negative?

Agee

p.s. I will try to be less negative in the future. I think this is magnified by the fact that it's my birthday, my husband is working, and I have to make my own birthday cake as well as cook my own b-day dinner and my mother, trying to be helpful, made tofu with spelt coating (she's a vegetarian, another complication to this whole thing) the other night and I've been sick for 2 days b/c of it...

[Guest imsohungry]

Hi there and welcome to the forums!

Your frustrations are similar to what many of us experience. Please vent all you need to! I didn't see your post as negative, but you just sound frustrated, and that is totally reasonable and allowed here

I'm sorry to hear that you see your husband as being a little apathetic to your needs. Could he just be concerned that something else is the matter? Perhaps he is not doubting you, but he is wanting to make sure that you get all of the treatment that you need. I obviously don't know your whole situation, but that is just a thought I had.

I wish you luck as you continue to seek a healthy life, gluten-free.

Take Care. Much hugs. -Julie

[darlindeb25]

hi agee and i must add here---i think there are just as many overweight celiacs as underweight---i was overweight for years, still am somewhat, but i lost 60# after going gluten-free--because of our inability to absorb vitamins properly, some of our bodies react differently then others and it just happens that some of us gain weight--my boyfriend could not understand how i kept the weight on while eating so little---keep your chin up and yes--gluten is everywhere and its hard to always find it--after over 3 years, i still make mistakes--welcome here, deb

[Seosamh]

Hi Agee,

I don't want to insult the medical profession--or maybe I do just a little--I think you should trust your gut! I did not for decades and instead listened to MDs tell me all sorts of things (such as that I was anorexic even though I ate and ate). Once I went off gluten, I knew it was the right thing for me. Months later medical science "proved" that I have celiac disease, but really only confirmed that gluten and I don't mix well.

Also, don't believe the weight thing about celiacs--many are underweight but nowhere near everybody. No symptoms are identical. I went for a long time with an underworking and then a not-working thyroid--and was not diagnosed with hypothyroidism because I only weighed 145 and am nearly 6 foot.

Listen to MDs but don't think they have the final word on your health--you do. It is something I'm still learning.

best

Seosamh

[Agee]

Thanks for the replies, everyone. Frustrated was definitely the word to describe me when I posted the other day. I'm glad you all have been so welcoming - I've been talking about this a little to my friends but I'm really self-concious about being a one-subject kind of person around them. So it helps to have people to talk to who are in the same boat.

On the plus side, at my regular grocery store yesterday I found tons of gluten-free products and different kinds of flours. I live in a somewhat rural area and I thought I was going to have to drive a half hour to a WholeFoods (and pay their high prices) to find your basic gluten-free stuff. I'm really trying to stick to whole foods (I mean non-processed foods, not the store!) anyway but it's good to have a few pasta/bread type options now and then.

In retrospect, I think my husband is just trying to help me get to the bottom of this. Eating gluten-free is really difficult and I think he wants to spare me from it if at all possible. The main thing I've had to wrap my head around has been that I can't really eat out/get take-out as much as we used to. We're used to picking something up for dinner 2x a week or so because we have 2 small children, we both work and we have so much going on. I've yet to find any take-out type restaurants that would offer a reasonable alternative for me. Chinese, pizza, Japanese express, Subway, etc. are all out. Add to this my husband has started a 2nd business and literally has worked for 6 weeks straight (minus Thanksgiving) which has been fairly stressful. Sooo - I just have to be a better home manager, I guess.

Oh - and I figured out why I was so sick the 2 days after Thanksgiving. There was spelt on the tofu, which was obviously an issue, but my mom figured out that the pie she had made, which had a "wheat-free" crust, was NOT gluten free. It was largely rye flour. Gah. She felt really badly about it, but live and learn, I guess. It helped me confirm that gluten really is my problem. Next year we are having TURKEY and potatoes and green beans, like regular folk. I will cook it so I will know what is in it.

Thanks for the welcome, everyone. I *really* appreciate it.

Agee

[Deby]

I am one of those overweight celiacs. I lost weight when I first developed celiac disease. I went from a size 9 to a size 2. I still have some of the clothing I wore and it wouldn't even fit my daughter. After years of going undiagnosed and feeling lousy (I would actually have a gag response and almost vomit at the smell of cooking pasta) I started to regain weight. I have a theory now that sugar was one of the few things my body could digest. I started to crave sweets and any food that would convert to sugar in my stomach. I never had any energy and wasn't getting any vitamin nutrient out of my food, so my activity plummeted. While I used to be very athletic and think nothing of a 20 mile hike, I could hardly get up off the couch. Hence weight gain.

I don't know if any of this sounds familiar.

By the time I self diagnosed myself, I felt like I was dying. My husband was sure I had cancer. I don't think I will ever be normal. BTW, I did see a doctor when my symptoms first came up (or out, to be grossly blunt!) but the doctor explained my experience as a bad kidney. (Since I'd just had surgery for a kidney defect)

So I think trusting your gut is a good idea. Besides what harm can be done by following a gluten-free diet? But there is great harm by not following the gluten-free diet if you indeed do have celiac disease.

[Agee]

In regards to being overweight -

I actually am pretty active (I run 15-20 mi./week), so lethargy caused by lack of energy isn't really a problem. Or maybe I should say that before going gluten-free I was able to keep my energy up by snacking all day long and drinking coffee continuously - well, at least I used to be able to keep my energy up. The 2-3 months before going gluten-free I felt a steady drop in energy and was not able to finish a race in November - after training for 6 months and feeling less and less fit as I went on. I still soldiered on my 15-20 miles/week, however. Unlike a lot of celiacs who have no energy, I don't think it's been inactivity that's caused my current weight. Before going gluten-free I ate A LOT. And even though it went through me quickly it obviously wasn't going through me quickly enough.

Since starting gluten-free I've cut way back on coffee and have noticed that I am not constantly hungry and tired as I used to be. I eat until I'm full and I don't have the urge to stuff more in after reaching fullness. It's a strange and wonderful feeling.

The only time I've lost weight in the past 5 years was when I was doing locarb, but then I lost like 1/4 lb./week being perfectly religious on the diet, and that's not much if you know anyone who normally does a LC diet. I did feel great doing LC - I had tons of energy and looked good even though I wasn't losing much weight. I quit doing LC b/c I was trying to get pregnant. Stupid! Since I also thinking my recurrent miscarriages were caused by gluten. My theory is that for the first time in a while (this was when I didn't have acute symptoms like I've had the past several months) I was not eating gluten and therefore my body was absorbing all the calories and nutrients I needed through my food. Hence, no weight loss.

So - long and confusing but I'm seconding what several of you have said.

Agee

[gypsyfey]

I went gluten free about six months ago. My boyfriend had been diagnosed about 8 yrs ago, and the more he talked about celiac the more symptoms I recognised. I had also been low carb for awhile and realised that I felt much better when all I was eating was meat eggs and cheese. As far as eating out goes, BBQ (sauce on the side) nachos, even subway makes salads. There are really lots of choices. Because we have 3 celiacs and 3 normal eaters I sometimes run into a problem with dinner, but a few chicken breats or hamburgers on the Foreman usually save the day. Good luck, and don't let yourself get overwhelmed!!!