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Five Months Gluten Free -- No Improvement

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Posted 22 March 2011 - 07:26 AM

I'll admit to being a bit confused and frustrated by my celiac diagnosis five months ago. First, I got tested on my 50th birthday physical exam. My doctor says my antibodies are quite high (I'd share them, but I don't know which numbers are most significant), so there doesn't seem to be any question that I've got celiac disease. Yet, while I read here and elsewhere over and over of people rejoicing at how dramatically better they feel after just one week or one month gluten-free (or conversely of eating gluten and becoming immediately symptomatic), the five months I have spent avoiding gluten have brought absolutely no discernible benefit or change at all to my life. I don't feel better -- or worse -- at all.

Then again, it's not at all clear what needs improving. Yes, I have a few minor symptoms which might -- or might not -- be connected with celiac: I have some psoriasis and I have occasional leg cramps -- but so do large numbers of people; I also might (or might not -- there's no way to compare) have especially tight muscles -- but a lot of middle-aged people have achey muscles. Of course, the lists I've read of the possible symptoms of celiac are no help: they are so encylopedic that pretty much ANYTHING can be seen as a symptom. (And that makes me wonder: is celiac then like fibromyalgia or chronic fatigue, which probably have some real physical issues at their core, but which because of strong [cultlike?] advocacy communities, keep expanding the definitions to the point where anything and everything is a "symptom..."?)

I guess my confusion comes from the fact that I was already in such a good state of health to begin with. In fact, I remember saying to my doctor at my physical that I didn't know age 50 would be so good or still feel so young and vital. I exercise daily, love vegetables, cook and eat my own fresh foods 5x week, abhor most "fast food," and in general avoid pre-packaged and preserved foods. (Partly because it's healthy, but mainly because that's what I actually like best.) And I have never really cared for wheat products anyway (which btw is why I asked for the celiac test), so I have tended to avoid the pizza, pasta, bread, sandwiches and burgers that so tempt others; I would usually only eat such things to be social, or if I had few other options (such as travelling).

The good news is that such things are not difficult for me to give up. It's not even that hard to give up the occasional cookies or cake. (But--damn--I had only just begun to really like beer!) And let me stress that for five months I have been very rigid about my gluten-free diet, avoiding any exposure. I have cleared out multiple grocery bags of food from my pantry, and mail-ordered incredibly expensive gluten-free versions of staples.

So I'm baffled. None of my experience seems anything like what I read on this site and on others. And this wouldn't matter too much, except for the fact that, after five months of strict adherence to this "no results" diet, I find myself growing seriously depressed. Partly, I know, this is because of the challenges faced by everyone on this forum. Having lived my life avoiding bread and pasta, I naturally centered my diet on Asian foods. I have of course purchased expensive gluten-free soy sauce, hoisin, etc. (but apparently no fermented black bean paste!) to cook with at home, but I never realized how much the once-a-week carryout from the Vietnamese/Chinese place and twice-a-month meals at my favorite East Asian restaurants added to my overall quality of life.

But my depression is not so much about the food per se as it is about the narrow, crabbed way it seems I must lead my life now, forsaking much of the discovery and serendipity which always brought me the most joy in life. Let me explain: I'm a foodie living in one of the most exciting young U.S. foodie cities, full of new music and restaurants and breweries and art galleries, and I write for two food blogs. Correct that: wrote. I haven't written a word since my diagnosis; it's too painful. What once brought me joy -- trying out new things, being part of the foodie community (which also correlates strongly with the new music, art communities) -- is now a subject that brings only pain and despair. My very favorite thing in the whole world was to walk into some hole-in-the-wall ethnic restaurant and order something I could not identify, had never previously tasted. To now review only bland, inauthentic chain restaurants or "gluten free" foods would be like... being a blind art critic who writes reviews based solely on how the canvas of a painting feels, or a disabled architecture critic in a land without handicapped access, who can only look on the exterior of buildings from afar without ever getting near them.

It's not giving up particular foods or tastes which is the problem. It's giving up... openness to life. It's not ever being able to just hang out with others and go where they go, exploring new tastes, sights and sounds. I realize now that being part of this foodie/art/music community -- and the prospect of "foodie" travel abroad (now also impossible) -- was how I was keeping myself young. I know that there are still other possibilities for new experience in life. But before my diagnosis, I felt a very young, vibrant, energetic 50. Now, after five months of this gluten-free, results-free diet, I just feel old and tired, and I care less and less about things.

Sorry to sound so bitter and self-pitying, when I know that all of you deal with the same sort of thing. I've avoided writing for a long time because I was afraid it would come out this way. I'm normally a low-maintenance self-starter who is quite happy with setting my sights on the long run. But it's getting harder and harder to keep this up with such negatives and no clear positives. Any advice?
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Posted 22 March 2011 - 07:51 AM

Ugh. I do know how you feel. One of my biggest fears/frustration has been travel while being gluten-free. I don't know that I've conquered it just yet. But I'm still working on it. For one, there are many foods that are gluten free naturally, and plenty of restaurants who make you food that is gluten free. I eat mainly at Mexican, Thai, and Japanese restaurants. So that isn't off the menu for you. You just have to order carefully and communicate clearly. I often seek places that are very open to their customers needs and speak English clearly. But that aside...

You need to find something else that excites you, plain and simple. You must grieve this, too. You are a true foodie (I'm dating a foodie, so I do know you creatures!), but there are other elements of you that you have yet to explore because you have spent a lot of passion on food. As hard as it is, you must discover your other passions. Because these will give you your life back. I promise -- it really does work. But it is hard, it requires change, and yes, it requires that you deal with your grief over the change. And you are entitled to grieve and be angry and bitter and complain and whine to your heart's content, until you decide that you are through with that, and then you will be able to move on. I hope that makes sense.

I don't feel deprived by food when I stay at home, or even when I eat out locally, as I know where I can go. So you may want to start working through foreign menus, or local menus, and finding out what is safe for you. Perhaps you could start doing local reviews on restaurants that are most focused on customer service, especially those who will work with the gluten free. I eat wonderful gluten free meals -- Italian, Thai, Mexican, etc. Truly delicious. But I've spent time researching, calling and asking, stopping in, etc. But that may also be too close to home for you, and perhaps you need a complete break from food and focus on something else. And don't be discouraged by travel. It can be done -- it just takes extra care. Just like someone who is physically challenged must face the extra planning, so must we. And ours is a good deal easier, as I can always carry food in my bag. And I know -- that is not always a comfort. But it is as it is. And it doesn't need to stop you.

My thoughts are with you. I know this is tough, especially when you don't have any recovery to speak of. Just limitations...but perhaps you can see the limitations as their own adventure. And you will figure this out.
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)



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Posted 22 March 2011 - 08:02 AM

I feel the same way I know how you feel even before if I was depressed I'd just eat my fave food and feel better. I know that sounds bad but I loved food and trying new things. Now even the gluten free more expensive not as good tasting food makes me sick. Like you social aspect of life is revovled around food I find. For bdays we go to a resturant and club or party and they order pizza and I'm just watching them or going to a wedding I know exactly how you feel sometimes I get so depressed too from the frustration and just cry. No one else in my fam has this whenever my nephew gets food I used to love I get so upset I'm 26 and feel the same way.* Hugs*i guess it just takes time to get used to. It makes u appreciate the little things in life that we take for granted. It will get better for us just takes time.
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Posted 22 March 2011 - 08:05 AM

You are neither bitter, nor self-pitying! You have every right to be sad, pissed off, and frustrated. You must be in a bit of shock.

This is a life-altering diagnosis, for sure. For some like me, we are relieved to hear the diagnosis because we had so many awful, perplexing & painful symptoms and as much as the diet is "different", it is an answer and a chance to get well. I do not like having any restrictions placed on my life either, so I get what you are saying. But I look at gluten-free life as "healing". Do I "like" it? NOPE. I am not there yet. I am still too sick to be joyous about this whole thing, but I am seeing results and this gives me hope.

You may not "notice anything" but your intestines are healing and that is necessary for you to continue having a happy, relatively healthy life!

My experience is not the same as someone like you with virtually silent symptoms, who must now alter her life and her passions to fit the diet and wonder why she has to live this way when she felt "pretty good" until some doctor told her otherwise.

I am sure you are mourning the loss of being able to eat & drink whatever you want. And to explore new food sensations. THAT part, I totally empathize with as I was a major foodie and a bit of a gourmet chef and my hubby and I traveled and enjoyed all kinds of foods and cultures. Now, I have little energy and muscle strength to do any of that.

I guess you have already thought about this....but could you taste and blog about gluten-free living?? It would be fun and serve a great audience? If you live in a major city, there must be a few gluten-free joints around! Just a thought!

I suspect you are having some depression and this is pretty par for the course with this diagnosis. Is there anyone you can share this with? Of course, we are all here for you....

The person I met on here who has had the most similar experience as you is love2travel. She is a big foodie, had no gastro symptoms whatsoever and was equally surprised to have found out she was a celiac...perhaps she will see this post...or maybe you can send her a PM?

Sorry you are having a hard time. I feel for you. Hope things turn around for you soon.
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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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Posted 22 March 2011 - 12:02 PM

This diet is a hard enough lifestyle change when you are feeling tremendous relief from it, so I can imagine your frustration when you do not notice the benefit you are receiving from it. You have my sympathies and understanding. It is funny how many of us who were once foodies end up in this boat. I had not eaten any "fast" food for 25 years before I became convinced that I had to eat gluten free and was always experimenting with new cuisines (belonged to a gourmet dining group and we used to have ethnically themed dinners). So if food has been a focus of your experience, rather than just stuffing down another hamburger and fries, it is exceptionally ironic. And yes, do grieve the loss, it is very real.

As others have pointed out, your challenge (and we are often presented with new challenges just when we think we have everything under control) is to find new challenge and meaning in life, a new focus. You write extremely well - maybe you can find a different topic for your writing. Or perhaps take up photography and photograph the food you used to write about. Write a travel column on travelling gluten free. There has to be ways to utilize your life-learned skills in a way other than consuming the food that you now cannot have. With gluten free becoming more and more in demand, as the diagnosis becomes real for physicians the demand is there. Just look at the travel thread on here. And you would be assisting more of us to travel confidently by sussing out how to do it.

I do wish you all the best as you try to put meaning back into your life which right now you feel has disintegrated around you. As time goes by and the wound is not so raw, I am sure you will do this. But rest assured we all know what you are going through.
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Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
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Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
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Posted 22 March 2011 - 02:33 PM

I am so touched by what you wrote. I have entered the same grieving process that you are describing. I just couldn't possibly have written it as well as you did. I want to be care-free and loved going into new places to eat with friends and being able to talk about the food we were eating. Now I eat very plain and simple. That can no longer be part of my life without a lot of scrutiny on my part and I don't want that. So I socialize and drink but eat at home.

The other issue, that you don't feel a lot of relief of symptoms, is probably because you were only minimally "poisoned" by gluten. You largely had eliminated it from your diet and thereby you likely saved yourself, albeit accidentally, from the more serious maladies, autoimmune diseases, and many other things that happened to our bodies for those of us who regularly ate gluten at every meal. You are ahead of the curve. Less healing to do. For that you can be grateful, but the lifestyle change is daunting. I'm still adjusting to it too. Thank you for expressing yourself so well. I found it most helpful to me since I have been feeling much the same way. Let's hope it gets easier.
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Posted 22 March 2011 - 02:38 PM

I've been mostly away the last few days so have lots to catch up on! So sorry to hear of your experience. It IS really, really hard, especially when you love food so darned much! I can sympathize with you. As IrishEyes mentioned, I had no symptoms at all, either - found out I had celiac through screening as my sister was gluten intolerant. My doctor was shocked, my husband and family were shocked and I was STUNNED beyond belief. One of my first thoughts was, "But this can't be - I am too passionate about food and cooking for this. Why could it not have been someone else?" That was six weeks ago. I do not feel any different at this point, either, and know I was accidentally glutened twice and nothing happened.

I've gone through times of questioning things including my diagnosis. In fact, I still sometimes wonder if it is indeed possible I could have celiac although I know it is indeed a fact.

Food is so much of what my life is about. I teach cooking classes and test recipes for a few major magazines and publications. My husband and I travel all over Euorpe to food destinations. My pantry is filled with exceptionally exciting ingredients most people have never heard of. My culinary book collection exceeds 500 volumes. When I am not cooking I am reading about it or dreaming about it. It is ALWAYS on my mind. I lovingly tend my 100+ spices, many of which are very hard to find and exotic. I've truffle hunted, stomped on grapes and picked olives in Europe. We travel thousands of miles for food. We actually own a house in Europe, too, so travel there when we can. I'd love to go to NOMA (have the book) but wonder about the gluten-free thing.

I imagine it is extra hard for you as you live in a foodie city and just knowing that it is out there must drive you crazy. I totally get that. Thankfully the higher-end restaurants seem to be more knowledgable about gluten-free and cross contamination issues. We recently had a 6-course tasting menu (I called about it in advance) and with our steak tartare I had rice crackers instead of crostini. Not the same thing, of course, but the chef understood my passion and tried hard to make a memorable meal for me.

BUT after the shock wore off I thought that I could turn this into a positive thing by teaching gluten-free classes. I have one lined up for next week on Marinades, Rubs and Brines (naturally gluten-free anyway). At home it is far easier to make the right choices because YOU are in control. Eating out, however, SUCKS. We have ZERO gluten-free places in town so this weekend drove three hours to have a foodie weekend. Which is a huge thing because I have a major back injury that calls me excruciating pain, trouble sitting, standing and so on. Anyway, I made a decision to take control and not let this control me. Celiac disease does NOT define me. I simply will not allow it to.

It is amazing how well a person can eat and cook passionately while gluten-free. Sure, there are many times where I wish I could have that grilled ciabatta bread or cannoli or unctuous pasta. I used to (well, still do) cook and bake everything from scratch. And I mean almost everything. We have only a few cans of tomato paste and molasses, stuff like that, but everything else is made by me lovingly. I toast and grind my own spices for blends, make my condiments, preserves, vanilla, etc. Yesterday I made lovely red pesto and fabulous BBQ sauces and rubs.

Sounds like you need to get your passion back. Order a few culinary books from Amazon or whatever and get back into it. I wouldn't recommend any gluten-free cookbooks, though, as it is discouraging to see that most recipes are gluten-free naturally, anyway! Maybe a few gluten-free baking books (i.e. Blackbird Cafe and CIA are my favourites).

So, each morning I make the conscious effort not to be WOE IS ME but wow - look what I can make that is simply amazing! Although I have no symptoms I refuse to cheat whatsoever. I'm also starting to volunteer at a shelter for battered women when my back allows it and teach them about shopping and cooking. How lucky am I to be able to do that???!! You can take your passion and really use it in unexpected ways. :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.



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Posted 26 March 2011 - 03:42 AM

I am very busy and so only have time at the moment to say thanks so much for all of your replies. I am touched and impressed by such supportive, articulate responses.
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