Recovering But Anxious

[~alex~]

Hi, I was diagnosed with Celiac disease a little over 6 months ago by blood tests and an endoscopy/biopsy. My fianc

[Worriedwife]

Alex,

It's good to hear from you. I've read several of your fiance's postings, and have follewed some of your progress. It's good to hear from you personally, and I'm glad to hear that you're feeling better!

I would think that it's natural to feel this way. I can't speak personally, as it is my husband that has Celiac, but it seems reasonable to have this sort of reaction. No one should have to deal with this sort of transition alone. If you can, give the psychologist a try, you might fell better, and that's the whole point IMHO.

[jerseyangel]

Hi Alex, and welcome to the board! I'm so glad you decided to join up.

I've followed your story through Ryan--and let me say, what a lovely, thoughtful, caring man he is. Now, I'm just so hpppy to be "meeting" you, too!

I also suffer from anxiety. It was much worse before I was diagnosed. I used to get panic attacks--thankfully, I haven't had one since starting the diet.

Please don't feel you shouldn't have these feelings--especially considering what you've been through, both physically and emotionally. Feelings of depression and anxiety are actually very real symptoms of Celiac, too.

It does take time for this to improve--I was sick for years before being diagnosed, and it took a good 18 months or so before I realized considerable improvement with the anxiety.

Maybe it would help for you to speak to someone, as your doctor suggested. That could help you cope as you are healing. Please, please, don't feel guilty for your feelings--they are yours, valid and completely understandable It's great that you have such a supportive family--that will be a huge help to you.

Don't hesitate to ask any questions that come up for you--that's what we're here for. As I told Ryan, you can also contact me anytime

[Lisa]

It's nice to meet you Alex. You are so blessed to have such wonderful people surrounding you, especially your devoted Ryan.

You have had a tough year and it will take some time to recover and not look around for another brick to fall. I really do understand how your feel. I have had many tragedies in my life and I know the feeling. It is quite natural.

Confidence and time will heal you. We are so glad that you are doing much better.

[melmak5]

I was lucky to be seeing a psychologist throughout my medical ailments and testing process. (I had two immediate family members who have been very ill)

It was the hardest thing I have ever done, walking through the door. Harder than all of these tests, pain and not knowing.

My therapist was the first, and only person for a long time, who didn't think all of this was in my head. (or just related to stress)

It took me a long time to open up and really get to the heart of what I was feeling, but quite honestly, I believe working with her is one of the reasons I kept pressing doctors and didn't just give up.

You may not have the same experience, and it may take a few different people to find someone you work well with, and it honestly might not be what you need, but I cannot speak more highly of it.

Feel free to PM me if you would like. If you are in/around Boston, I can also give you her name. (she has at least 2 other clients who have celiac, so she has a clue as to whats going on)

[Elaine40]

Hi Alex,

I have been very anxious since my unofficial diagnosis and going gluten free. I went through an initial phase of feeling very depressed about the major dietary changes, the more shopping, more cooking, more preparation and much less eating out thing. I also had a lot of anxiety about being glutened because I had a stomach bug this winter and I felt like I was going to die (I thought I had gotten glutened but then the rest of the family started to come down with the same thing), and then a couple instances where I may have gotten glutened and felt extremely unwell. I've read some of the glutening incidents people have posted about and frankly, it scares the bejeepers out of me.

However, a lot of my anxiety also stems from the fact that I have been misdiagnosed for so long that I have neurologic issues and fatigue issues.

I do see a therapist and it has helped me immensely.

In short, I think it is totally normal to feel depressed and anxious about being told you have a life-altering and potentially debilitating disease. I HIGHLY recommend therapy even if you just go for a few months and get your feelings about this out.

I want to say that you typed that you shouldn't feel this way because you have a good support system, but that's not the case at all. We all have feelings and this IS a big deal. My 17 year old is in the process of being tested for it and she is having a lot of rage, denial, anxiety issues about it as well.

Good luck to you.

[narnian]

Alex,

I am also new to this forum and can directly relate to what you are dealing with. I was diagnosed in April through blood tests and an endoscopy/biopsy. I, like you, am dealing with anxiety. I am surrounded by a very caring circle of friends and family and have battled the thoughts of: I shouldn't feel this way; I'm doing so much better; I have people who love me supporting me, learning about celiac with me, listening to me; I need to be tougher, have thicker skin about it. It's helpful to know that others are experiencing similar feelings. I have debated about seeing a psychologist, but have not taken any action. Reading your post makes me want to consider the idea more seriously.

Thanks for sharing. It helps to know that others are experiencing similar feelings.

Lori

[GFhopeful]

Yes, I have never had anxiety in my life until now. I am recently diagnosed and actually the anxiety has let up ALOT as my body is feeling better. I think that when you are ill, your whole system is whacky - I was so surprised at how terrible the feeling of anxiety is and can't believe some people deal with this for many years. Anyway, I haven't pursued any therapy as I do feel alot less anxious the better my body feels - but this is my experience. If any anxiety continues, I would defnitely consider a psychologist/counselor. I too have a great family and support but can't explain where this anxiety comes from except that I am recovering from being very ill. HOpe you continue to recover and build up strength in both body and mind

[~alex~]

Thank you all for your kind words of support and understanding. I know Celiac is actually pretty common but not knowing anyone who has it made me feel a bit lonely at times. So it is wonderful to hear from people who have been/are in my shoes.

Just as an aside, you are all very right about Ryan. He has been the biggest support and I don't know how I could have made it without him. My heart aches for anyone who has to go through something like this alone.

Lori, I'm glad what I said resonated with you. It's really difficult to admit that you're having a hard time emotionally but as I'm learning it's a relief to get it all off your chest.

So many thanks to all for responding to my post with such kindness. I think I have gotten myself into a sadness/anxiety - guilt cycle that I can't seem to find my way out of. As many of you said, I think it might be in my best interest to talk to the psychologist to help me get past this. I don't want to live my life always looking around the corner for the next life-altering thing to happen. My Celiac disease just seemed to come on so suddenly and unexpectedly that its hard not to worry about something similar happening in the future.

Thank you,

Alex

[brendygirl]

Yes, I think anxiety can be correlated to celiac. I've seen in many sources that it takes a good three years to get a handle on the gluten free diet. I have ear problems (fluid, vertigo, etc.) and I can't get to the ear specialist until Sept., so I researched online and learned that an episode I experienced might be triggered by stress and one of the treatments is anxiety medication!

I was thinking, I'm off work now, how can I have that much stress? But then, when I was at the grocery store struggling to remember which juice I can buy, I realized my stomach was in knots. I think the fear of getting glutened gives me anxiety. I can't wait to see the ear doctor about it. Realizing that I could lose my hearing due to anxiety means I really have to do something about it. It's good to remember that anxiety and stress are the cause of many physical ailments...

[Di-gfree]

Hmm, I have hearing problems, too (diagnosed as otosclerosis), plus tinnitus. That started when I was around 20 years old - about the same time I started having panic attacks and anxiety. I was diagnosed with celiac in my early thirties, and I had high hopes that a gluten-free diet would put an end to the anxiety. Unfortunately, for me, it didn't; and it's been ~12/13 years now (I'm not sure of the exact date of my diagnosis as I was a little in shock and very depressed). If you can believe, anxiety has made it very difficult for me to even ask certain questions from my doctor - I'll have to ask him for a specific date next time.

A couple of months ago I really regressed, for some reason; and one thing I did at that time (for chronic constipation) was to up my intake of cal-mag. One good side effect of that was I found the cal-mag made me feel more relaxed than I've felt in a long time. Unfortunately, I started having problems with just about everything I ate, so one of things I did was stop all supplements as an experiment. I actually now feel better off of the supplements; but I find my anxiety level has risen again. I'm going to go back to taking the cal-mag again to see if it helps, or worsens, my overall condition, and go from there. Incidently, I did try anti-anxiety/panic attack medication over 10 years ago, and didn't like the way it made me feel. I later found out the doctor hadn't prescribed one of the newer types of medication that apparently have less bad side effects - but I haven't tried the newer ones, yet. I don't really like to be on medication, so I'm kind of stubborn that way; but I'll never say never.

It's really been interesting to read that so many other people have so many of the same symptoms as I have. I know how difficult it is to live with anxiety, and I wish I had a cure-all answer for you. Just out of curiosity - does anxiety cause anyone here to not want to go out much? I hate to admit it, but I'm even afraid to go to a hairdresser to get my hair cut (my anxiety, plus I wear a hearing aid which I would have to take out, and then I wouldn't be able to hear...). I've been cutting my own hair for a few years now, that's how bad my anxiety gets!