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Feeling Worse Before Feeling Better -

Emme999

By Emme999
in Coping with Celiac Disease

Recommended Posts

Emme999 Enthusiast
Emme999
Posted

Hello. There's a thread currently running about feeling worse before feeling better - but I think that's more concerned with the "typical" GI symptoms associated with celiac disease. I want to know if it's the same for emotional struggles. Does anyone have any experience with this? I'm really interested in hearing from people who have had their most significant symptoms related to depression / bi-polar / anxiety.

I'm having a really rough time :( I've been gluten-free for about 3 weeks now and I'm wondering if the emotional stuff takes as long to calm down as the bowel stuff. Three to nine months?

I am taking a lot of vitamins, eating right, etc. But I just feel really unconnected and sad.

Please post if you can.

- Michelle :(

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tarnalberry Community Regular
tarnalberry
Posted

Oh, I'd definitely say that the emotional stuff - both organic and situational - takes a while. It can be a habit to be depressed as well (I say this from my experience) and habits take a while to get out of. Not to mention the added psychological stressors of the diet, and you've got a tough mix.

ianm Apprentice
ianm
Posted

I went through a period of severe depression after going gluten-free. I'm not sure if it was diet related or the fact that I wasted the first 36 years of my life on something that was so easy to fix. You have been through a lot of stress in a short period of time and it may just take time for you to recover both physically and mentally. Change is always difficult even when it will ultimately be for the better. What does not kill you does make you stronger. If I can do this then anybody can.

Emme999 Enthusiast
Emme999
Posted
  • Author

Thanks for being so understanding guys. It means a lot.

Ianm -

How long did your depression last after you were gluten-free?

Tiffany -

I don't think this is habit-style depression (though I know what you mean). It's more of a quick kick to the floor type of depression. I'll be fine one day and then *bam!* - I start saying that "please don't make me wake up" prayer. It doesn't seem to last for long, but it's pretty intense. Scares me. I am wondering if I am getting glutened accidentally and that's triggering it or if it's just that I'm not well enough yet to be strong. :unsure:

I don't know what's going on. Thanks for your support though. If you have any more insight I'd love to hear it.

- Michelle

hsd1203 Newbie
hsd1203
Posted

Michelle,

that type of depression is what I get when I have been glutened, and I hate it because it comes out of nowhere and makes me think my life is terrible. I don't understand it but that's what happens. Its what keeps me most honest on this diet because really I can handle some stomach pain but won't risk the depression. Just thought I'd let you know that you might not be the only one. And keep taking the vitamins cause they seem to help.

Heather

Emme999 Enthusiast
Emme999
Posted
  • Author

Thanks Heather!

ianm Apprentice
ianm
Posted
Ianm -

How long did your depression last after you were gluten-free?

It was about 4 weeks and then faded over about 6 weeks. I think it was a combination of physical and psyclogical reason.

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skbird Contributor
skbird
Posted

Hi Michelle -

That's exactly the kind of depression I had last month after getting glutened (though it's still hard for me to believe I got glutened in that circumstance and now I'm paranoid about all restaurants except sushi). I went from 0-60 in moments it seemed and was droopy and my eyes were constantly tearing up all the time for a good 36 hours. It was horrible and the only thing that kept me from believing I was totally crazy (because I sure did think it!) was the response I got on this board, including your's. So know that other's have felt that way and it is likely just a part of healing. You could even be getting a bit of gluten as it is, and that would throw you.

I had bad IBS last week and hadn't eaten at a restaurant but now I think it's because I have been making my lunch (salad) at work in the break room, right in front of the toaster oven, and might have gotten bagel crumbs in it. I swear, sometimes I think I need to be clubbed over the head. From now on I am going to diligently wipe down the work counter before making food in there. I even use my own cutting board and knife now! Sigh.

I'm sorry to hear you are going through this especially with how exciting it is for you to finally know what's been at the heart of so many health issues for you. Hang in there and you will get through it. Know that I, too, know exactly what it feels like to be there and that if you can wait it out, you will get past it.

Big hugs!

Stephanie

Emme999 Enthusiast
Emme999
Posted
  • Author

Stephanie -

Thanks for your input! I remember your rough time - and that's part of what made me wonder if I'd been "glutened" - I'm glad you are feeling better now! :) I am also feeling much better now, and wondering if I just need to be more careful. I'm kind of confused about this whole thing though - what is "residual intestinal damage depression" and what is "just glutened! depression" ? I don't know if I'm still dealing with periodic episodes from the first of the two or if I am getting glutened! :unsure: Geez!

After you first went gluten-free - how long was it for you before you felt like a normal person? Was it pretty instantaneous - except for the accidental glutenings?

I am feeling pretty normal/happy most of the time - but about once a week I am getting slammed. Is that part of the normal healing thing or am I getting gluten from somewhere?

This is so freakin' complicated!!! :angry:

Please offer any info you can!

Thanks,

- Michelle :wub:

skbird Contributor
skbird
Posted

Hi Michelle -

Glad you are feeling better. Maybe remember that feeling for next time - I know I am.

I can't really remember what all happened right away. I had been on a low carb diet at first and felt so great after the first week - the first week though I had horrible withdrawl feelings. Also major cravings. After a while I reintroduced a bunch of whole grains and while I didn't immediately have reactions, I started to after a while. Finally I started connecting the two things and would start to avoid wheat but not the others. It was last fall I dropped all gluten and felt lighter and mellower pretty quickly. I probably still got gluten on occasion the first couple of months but the first time I remember knowing I was going to be in trouble was the time I went to Chinese food and realized I couldn't have the soy sauce. I had some dishes anyway, and had a severe migraine by midnight.

It's sort of like I felt a little better for going gluten free but it wasn't night and day. And as time passed I would feel better overall but I get the pitfall of getting sick from being glutened about once a month or so now and it's pretty extreme.

One thing that has for a fact improved is I can ride my bike to work every day and not be a wreck. I only live a mile away and it's level ground but even last spring (2004) if I rode two days in a row to work I would be so exhausted that I would have to call in sick. I would hurt all over. Last week I rode my bike to work every day and one night I even worked out aggressively on my treadmill. Then over the weekend I went to the fair and rode some crazy rides and on Monday I was on a 6 hour canoe trip and I was still doing pretty well on Tuesday. That would have put me in the hospital or something before! So my endurance is coming back to me which is really cool.

I'm disappointed about the gluten reactions I've had - seem like setbacks, but am glad about my energy returning and generally better attitude about things.

I don't know if this helps - I don't think I'm a poster child for going gluten free but I definitely think it's right for me.

Stephanie

printmaker81 Rookie
printmaker81
Posted

Michelle~

I think we were both diagnosed about the same time with celiac disease judging from your other posts, so I don't really have any words of wisdom. However, I have sort of been going through the same thing. When I first got diagnosed, I felt like jumping up and saying "Whee...I'm not just a hypochondriac!" Then I got bummed after reading a lot about the disease and the diet (It didn't help that my family and I were in Kansas at my brother's graduation the weekend after diagnosis and everyone was eating cake and ice cream....all weekend). The first couple of weeks weren't too bad, I was really resolved to stick to the diet and glad to be on the road to feeling better. Since then however, I've really been going back and forth. One day I feel fine, the next I can't stop crying. All in all, it seems like the healing stage is pretty stressful (new diet, dr's bills, tests, family, etc.) and embedded with physical ups and downs. Even when I am sticking to the diet I can feel worse or better from day to day, not to mention how I feel with the accidental gluttening. It only makes sense that we would have emotional ups and downs too. I imagine our body chemistries are undergoing a bit of a change, so emotions have no stable ground.

I suffered from PTSD and boughts of depression way before I ever physically felt bad from celiac disease, so the new diet/lifestyle and the adjusting period with my own dips into the blues is a little nerve-racking. Especially when it seems like you are the only one out there dealing with this.

I think right now, too, it is so tough to stay positive because I am trying so hard to stay on the diet and have been doing so for a while now (over a month), and I still really don't feel noticeably better. At least we have this forum, so it's easier to see that it takes time and it is a struggle. I don't think anyone on this forum would say they had a really easy time in the beginning, even people who have no history of being depressed.

In the end I can only say what the other posters have already said: Hang in there, and we know how you feel (at least we can relate). And by the way, thanks for posting this topic because now I feel better about my emotional ups and downs in the last few weeks. It's harder to admit to the emotional complications of the diet than the physical ones.

Heather

blueshift Apprentice
blueshift
Posted

Michele,

I'd say that I have been gluten-free the same amount of time and I have to confess that I didn't quite understand what depression really meant until it hit..I thought maybe it was something like Cub fans feel every fall.

If you pick up V.S. Ramachandran's "Brief Tour of Consciousness" you can peer into the inner workings of the brain..He also has a book called 'Phantoms in the Brain"..Both are treasures and nothing out there comes near them..

As for depression he points out correctly that humans make emotional judgements on everything that is seen, including colors..During depression we no longer feel the meaning of the colors changing, like dawn and dusk ..It's not that you feel like committing suicide, it is like feeling that it wouldn't matter if you did or if someone did threaten your life..Locking the door to the house doesn't make sense to me during those moments..

Lately I have pinpointed olive oil as a possible trigger...too much of it anyway. I tend to put a lot in the wok when I stir fry and had a reaction to it the other day, feeling that depression coming..I downed lots of cold water and ate raws the rest of the afternoon and after an orange it seemed to digress quite a bit.

As far as any socializing skills are concerned, I was fortunate enough to arrange my life in response to some very good inputs at a precise time in my life so that I could deal with situations a lot better than others luck has imposed upon them. celiac disease is just another puzzle that I get to solve to compliment my science hobbies which are a partial outgrowth from those skills.

marycubs Rookie
marycubs
Posted

Michelle -

As the other posters state - you are not alone. I too have the depression as a symptom of my celiac disease (and maybe it's not just from celiac disease - I have had other stresses on my life as of late). But I feel that I would not have hit such a low depression if it weren't for the other issues going on in my body. For me part of the issue was I felt I couldn't control my own body pre-diagnosis. Now, I'm back in the drivers seat to feeling better. I have noticed some improvement since gluten-free for one month - but it is up and down each day.

I remember a year ago when I went into my doctor and I was feeling *down* - a relationship had just ended badly - but I had already been complaining of anemia, significant fatigue, and digestive problems for several months. Once the Doc saw me cry he labeled me depressed and put me on anti-depressants. He felt my health problems were 'stress' related - the anemia was just from being a pre-menopausal woman - he recommended exercise to help the fatigue. I remember saying to him - which comes first, feeling depressed resulting in your health going down the toilet (ha ! joke!) or feeling lousy every day and therefore becoming depressed ?

It's all related - Well, needless to say I have changed doctors and my first appt with the new dr. is Friday - I hope that she knows something about Celiac. If she doesn't I have info to share !

And Heather - YES - I agree with the Cubs remark ! ;)

Mary

marycubs Rookie
marycubs
Posted

Oops - my cubs fan remark was meant for blueshift !

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