Day 238: Understanding the Darker Side of Celiac
May 12, 2008 by leahjorgensen
Sunday, May 11
While I have been having fun over the past few weeks, I have also been feeling like crap. To be honest with myself, my scorecard hasn’t been all that good:
1) I’ve been out 2-3 nights a week, drinking 3-4 drinks a night.
2) I haven’t been careful with my gluten-free diet and have experienced the return of my Celiac disease symptoms, including piercing stomach pain, digestive issues, bloating, swelling, headaches, irritibility, anxiety, and the return of the rash that’s associated with Celiac - dermatitis herpetiformis. Ugh.
3) I’m burning a hole in my pocket, financially, with eating out so much (not to mention the gas of driving around so much!).
4) I haven’t been doing yoga, meditation nor have I been going to church.
5) I’ve started gaining weight again (gradually), as I haven’t worked out hard in over a week - plus the swelling from gluten contamination and extra alcohol consumption
6) And….I’m back to regular use of Claritan-D to combat my congestion, sneezing and watery eyes that are part of my mysterious non-allergic rhinitis (I still believe I have allergies); and, I haven’t taken care of my deviated septum yet.
So…I’m not feeling well, I’m not getting the balance and spirituality that I had been searching for, and I’m not taking great care of myself. I don’t know what happened but something’s got to give.
I thought I’d start with a cup of Yogi brand Detox tea this morning along with a nourishing bowl of gluten-free oatmeal. And I decided it’s time to pledge to myself a return to what I had been working on - finding and creating that much needed balance.
I thought about a conversation I had last night with my friend. I know she must think I am negative. And I am. I don’t mean to be and I certainly don’t want to be. It’s so hard to talk about Celiac disease with people without sounding like a broken record or a head case. The general population doesn’t understand what it’s like to live with this bizarre and trying disease, and how vast and complicated the symptoms are. I have long felt varying degrees of depression, over-sensitivity, brain-fog and anxiety. It affects my relationships. And I haven’t fully understood my symptoms.
I am convinced that I would benefit from therapy. That’s not an easy thing to write in a public blog. But I think it’s important to put the issue out there. It’s a real issue and it no doubt affects so many people already dealing with this disease.
I went online to try to find more information about the relationship with mood disorders and Celiac disease. I found a forum from 2005 which is still relevant. It showed me there are plenty of people dealing with this. It’s a relief, in a way. Because I have felt crazy, at times, not understanding the full breadth of my emotional and mental issues regarding this disease.
I found an interesting report about this very subject, the relationship of gluten and depression (and other mood disorders).
If anything, I’ll be relieved when my friends and family read those links so that they can better understand what I go through. I am making some serious changes now that I am more aware of what’s going on. And that makes me feel better.
I ran across your post while browsing on WordPress and wanted to offer words of encouragement. I know what you are going through - I’m going through it too. I actually did go to therapy for a while, and it did help. Interestingly, and completely by coincidence, my therapist was gluten intolerant. Small world. I think most people with a long-term/lifetime disease such as celiac are going to experience some form of mood disorder at some point. I know a lot of people suffer depression, even mourning, when first diagnosed. Not to mention that the physical effects of the gluten can cause neurological symptoms as well. Fatigue, grogginess (is that a word?), moodiness, etc. There is definitely a strong brain-gut connection. (I believe there is even research out there to show this, I’m not just making it up!)
I hope you start feeling better again. I’m sure you will. It can be a confusing and long process sometimes, but there are a lot of resources out there if you just look and ask.
Best of luck!
Karen
Karen,
Thank you so much for your kind words of encouragement!
It really means a lot to me.
I’m really coming to better understand my symptoms and realize it’s a life-long adjustment.
I benefit from support - and between this blog and reaching out to others with the disease in my area has proven to give me greater perprective and understanding.
It has also been a bonding point with my dad, who was diagnosed a couple of years before me.
I wish you the very best and hope you continue along a balanced, happy, healthy path.
Blessings,
Leah
I was reading about your dealing with celiac disease and about dealing with people that don’t understand what celiac is… I have a wife that is living with celiac disease for more than 30 years…and still some people don’t understand why she has to be carefull…and this year just to make people understand we have made a gluten-free cake longer then 60 meters….and give the cake to “normal”people with words that this cake and the food made without gluten is the only cure for celiac people….and for your sake…be on gluten-free diat…..
Thank you for sharing your struggles openly. I empathize with you. I’ve had celiac disease for years, only knowing I have it for the past three years. I’m tired of the swelling, the aches, and the mood changes. I’m a man, I’m supposed to be thinking about more important things than what’s making my stomach swell up like a balloon. Knowing there are others out there, like yourself, who are also struggling with this disease, somehow does make it easier to cope. Thanks.
Wow. I appreciate all of this feedback. It does feel like a kind of virtual support group. It’s really a challenge to live with Celiac, and in some ways its even more challenging to relate your symptoms and experiences to others. I often feel like a crazy woman when I try to explain what it’s like when I accidentally ingest gluten - the swelling, the rash, all of the above mentioned. But, knowing there are others out there who really “get it”, makes me feel a heck of a lot better.
Thanks for sharing your experiences, for opening up and for reaching out!
I hope you all are managing your Celiac well and are finding bountiful ways to enjoy your gluten-free life!
Many blessings,
Leah
I wanted to make a comment about your allergies. I wonder whether you have noticed any connection between your sinus troubles and your gluten consumption. I suffered from undiagnosable and unbelievably painful sinus disorders for almost twenty years; experimentation has shown me that it is at least 3/4 a reaction to wheat gluten. When I stopped eating wheat, it took about a month for my system to “clear” enough for me to notice a difference.
I don’t have the discipline to maintain a completely gluten free lifestyle, but I’m in much less pain now that I have restricted my intake. Since your body is, quite obviously, gluten sensitive, I wonder whether that might also be a factor in your sinus troubles/allergies.
And incidentally … there are very few people currently living on this earth who wouldn’t benefit from therapy. It’s too bad that there is still such a stigma attached to it … as if people seeking therapy are broken or have failed in some way. The truth is that people who seek therapy are the ones who are determined to succeed and lead fulfilling lives. Therapy is frightening, and it’s hard work; many people don’t have the courage or the internal ethics required to do it. Especially in this disconnected postmodern world, when mentors and teachers are not as common as they once were, the outside perspective and safe space of therapy are essential to personal progress. So … please don’t feel self-conscious about saying you think you’d benefit from it. That’s the most self-celebratory, affirming, and healthy conclusion you could possibly come to.
Hi David,
Once again, thank you for your thoughtful, considerate comments.
Yes, I definitely attribute my sinus issues, on some level, to my Celiac disease. Like you indicated, it’s not easy to follow a strict gluten-free diet and I certainly make my share of mistakes. I’m constantly learning! Sometimes the hard way.
I also need to have my deviated septum corrected - which should significantly minimize the symptoms caused by sinus blockage. I keep putting it off b/c of my health insurance. I’m sure I’ll have to pay a large portion of that bill. Ugh.
Relaxation and meditation really help, too. If I am stressed, I find that my congestion worsens. Allergies are pretty bad out here in Oregon, so, I think it’s natural to react to the usual suspects - tree, plant, flower pollens, etc. Plus, Celiac disease is an autoimmune disease, and your immune system is what sends antibodies to your sinsus areas whenver there’s an allergen, so, I can certainly see the correlation between the two.
Anyway, I am happy to hear you are finding significant improvement with cutting the gluten out of your diet. I really believe diet has so much to do with our overall health - including mental health.
I appreciate your thoughts on therapy. I have always tried to implement my own kind of self-therapy, but it can only go so far. I am still learning about my symptoms with Celiac disease and there are certainly a broad range of struggles. The emotional imbalance is a tough one, for sure. I experience depression and anxiety and often feel bad about it. I’m used to being upbeat, happy and balanced. These imbalances are so challenging and certainly affect my work and my relationships.
Ah, well. Such is life. We have to learn to create the balance as best we can and if we’re lucky, we know when it’s time to ask for some help when we really need it.
I just need a sense of community, I think, a support group - this would really help me to relate to others who share many of my symptoms and experiences - and I think that would be a kind of useful therapy, as well.
Again, I appreciate your kind words and thoughtfulness.
Blessings,
Leah