My First Post!
Posted by Mike in Mike's JourneyDec 31st, 2008 | 17 responsesHere is my first(boring) attempt at a video blog. I figured, I’d do it so people would have an idea who I am. I try to explain my history and goals… in a boring, monotone, just woke up sort of way….
I decided to start this blog to help others learn from my personal struggle with Celiac. I am a pizza and beer type of guy, so this transformation is going to be tough. Recently, the celiac symptoms have started catching up to me (not the bathroom type of symptoms, thankfully!).
I encourage you to not only read my blog, but also participate! Please help me learn and offer suggestions; I will frequently ask questions or want feedback…and probably a shoulder to cry on. I would love to have guest writers who offer their experiences or recipes.
I hope we all can learn from this experience!
17 Responses to “My First Post!”
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About Me
I too did not have the bathroom type of symptoms. I had breathing problems! While going through acupuncture school, I had a teacher who was a Naturopath who found that many (certainly not all) of his depressed patients were actually allergic to gluten and THAT was causing their depressive symptoms! Good for you for making the leap to go gluten free. It’s tough, but I’m sure you’ll find it’s worth it over all
Also, some people, once they have a “cleaning period” are able to eat their allergenic food in small amounts without too many problems. Good luck 
Becca: Great info! I think I may have been heading on that path, which is the main reason for my switch. The amount of problems a person can have from an allergy to gluten is endless! This is why it goes undiagnosed and people continue to suffer without knowing the cause.
My GI doctor told me the same thing… if I go “clean” for 6 months, then I should be able to cheat at one meal per week.
Thanks for the comment, I appreciate the input!
You’re very welcome! Feel free to email if you ever have any questions, I know how hard it is to go GF, and I’ve got some GREAT tricks up my sleeve
I think we’ve pretty much come with a solution for every GF dilemma 
Unfortunately, your GI doctor is wrong and clearly doesn’t know much about Celiac or long term impact of cheating on the diet. You might consider seeing a doctor that specializes in Celiac like Gary Gray at the Stanford clinic in California or other researcher, or at least attend a Celiac conference- you will get much better information.
-sea
@Sea
Now that I am more active in researching the Celiac lifestyle, I am finding that research is ever-changing. I am going to get more involved in conferences and associations. Thanks!
Comment to Becca Seitz: Celiac disease is not a problem with an “allergenic food”. It is a genetic condition that does not go away. Symptoms can go away as your body heals, but every time you get even the tiniest amount of gluten the autoimmune destructive process starts again. Celiacs must abstain from all gluten forever! But if you have to have a genetic disease, this is the one to have. Give up gluten, you are cured!
So nice to meet some celiac friends. My main symptom is the shortness of breath & a very low hemaglobin count.I haven’t been able to tolerate the oral iron so am currently getting iron infusions. I’m finding it’s hard to always identify gluten free products as they aren’t always listed.
Any ideas on that??
@Peg
Welcome to the world of reading food labels! You are going to have to know every ingredient of all foods that you eat. If it clearly doesn’t say Gluten-Free on the packaging, then you will have to look through the ingredients. Check out my post on ingredients. When did you start eating gluten free?
2yrs ago but apparently I haven’t been doing a good enough job. I was suprised when I heard chicken broth had gluten in it
and soy sauce.
To Peg –
Peg, I have only been doing this for about two and half months now but I have found that the book “Gluten-Free Grocery Shopping Guide 2008-2009 Edition” has been so helpful. Here is a link to it: http://www.celiac.com/catalog/product_info.php?products_id=802
It lists almost every food you can imagine like chicken broth and soy sauce and lets you know which brands are gluten free. It also lists numerous grocery stores and lists there GF brands. The book is small. It fits in my purse and I take it everywhere.
& To Mike – it is nice to see a blog that isn’t written by a long time Celiac. So many of the forums and blogs seem to be led by patient-experts. Although they say they remember the beginning now that they are familiar with this lifestyle I wonder if they really can access these feelings of powerlessness… or if it is just a running script of “We know. We have all been there. It will take time.” Completely well-intentioned and caring of course. It is very brave of you to do this. Thanks. Jenna
Just found you today when I happened upon “gluten free” bracelets! I think it’s great that you have started this blog (I’ve not done this before!)
I just started a gluten free diet about 3 months ago, even though I knew that I was sensitive to gluten (food sensitivity tests on the advice of my chiropractor/dietician). I am not Celiac, but Gluten Sensitive/Intolerant, but the treatment is the same so we are in the same boat.
It is very hard for me to take the time necessary to pay such close attention to ingredient labels. I am also having difficulty “grilling” wait-staff regarding what I call “a restricted diet”. I don’t like making things hard on anyone, so I hate speaking up for myself… But after being “glutenated” with a scrambled egg order, I’m learning to do it anyway, in spite of the awkward feelings it gives me (no one has been anything but concerned and helpful).
Anyway, thanks for being out there: I’m marking this spot so I can find it again! Loved the song about sprew (sp)!
Hi Mike,
I am a Celiac (diagnosed almost 5 years ago) and each individual’s symptoms are different. One thing my Dr. said to me “You CAN’T cheat on this lifestyle” – it’s NOT a diet – it’s a whole life change!
Believe me I am finally enjoying my “Golden Years” after being in and out of hospitals! It’s getting diagnosed more now, and labels now are saying GF but I still read the labels and don’t buy anything I haven’t checked on the computer.
Thank God for the internet – it has helped me tremendously.Good luck with your life! It’s worth it!
I went gluten-free about a month ago. I have an occasional weakness for chicken tenders
I originally gave up gluten at the suggestion of my chiropractor, because of my back pain. But now I’ve been reading that it also may have something to do with why my depression has been better! Schwing!
Hi! Its great to meet you all. I am self diagnosed, very allergic to gluten. I was very ill and did an elimiation diet, to check for allergys. Scare stuff, I eat gluten after three weeks. very bad reaction, so be carefull if you try this, a good helpful doctor to keep an eye on you is better. I am gluten free for life, and I am meat free, alcohol free, mostly vegan and eating raw foods, such us nuts, fruit, veg. I gave up reading lables, and found out the hard way their not to be trusted. I love making my own almond milk shake, and my body loves drinking this.
one cup of almond ground(powder)
3 cups water, 5 pitted dates chopped. This is almond milk, Keep adding and you have a milk shake. one chopped apple, one banana, chopped stawberry, blend and enjoy. chocolate shake leave out the berries and add carob power a table spoon or two.
Mike, I just found your blog. I have been gluten free for 2 1/2 months now. I know I am gluten intolerant (saliva test). I don’t know if I am celiac. The intolerance caused a whole slew of inflammatory chronic problems (for about 15 years)before we figured out what it was. It also caused anxiety and depression and heart palpitations. The anxiety and depression came along after the ringing in my ears started a year and a half ago. Couldn’t understand why the anxiety was SO bad. It all had to do with the intolerance…even possibly the tinnitus since your nerves can become inflamed also and there are nerves in your inner ear.
I don’t eat out. I take food with me wherever I go. It is very difficult to travel. I have been experimenting with foods/recipes….some good, some not so good. The heart palpitations are what are so frustrating. I have been cross-contaminated 3 times in 2.5 months. It is NOT a pretty sight either. It causes anxiety/depressions/worse palpitations everytime. Also my ferritin levels AND iron saturation levels are borderline anemic and I have shallow breathing. The doc thinks this could be the cause of the palpitations. Not getting enough oxygen in my blood and the heart is working harder.
I have found LaraBars and PranaBars. They are raw food bars. I like them quite a bit. You can find them in a health food store. I have found the LaraBars in Kroger in their health food section.
Also, you can sautee’ yellow squash and yellow onions with a little salt and butter (put a lid on the skillet – medium to medium hi heat). Let it brown a little bit, it just adds flavor. You can add browned ground beef to it too. If you cannot use butter, use extra light olive oil. I have also found some other gluten free products: shampoo, conditioner, soap, facial cleanser/scrub, lotion, chapstick, etc. Let me know if anyone needs to know anything about this.
God bless.
Hi Cheryl – I have been GF since January, so I guess it has been almost 8 mos. I am 32y.o. and have had horrible depression and anxiety since I was 15. I have been on disability for it for the last 5 years – they have called it medication resistant depression. I now call it gluten resistant depression! At the beginning when anyone would see me reading a Celiac book or I would tell them about the diagnosis I would hear the same response of ‘oh, my friend has that and as soon as he/she went GF they immediately felt better – it was like a miracle!’ I have been waiting and waiting for this so called miracle to occur and finally last month it occured to me that (1) I hadn’t had a migraine in 2 weeks (since elementary school they have been a every other day thing at least). But I am so used to them that it didn’t really occur to me that they actually weren’t there; and (2) I realized that although I still can’t always get a deep breath from my anxiety – I have been able to get out of bed and do things and what is this new feeling? Could I be feeling uhhh… normal – if there is a normal!!
But I also have found that the longer I have been GF the few times I have accidentally had gluten the reactions are getting worse each time and lasting longer. The last one was horrible and lasted almost 2 weeks. I am wondering if any deep breathing exercises or visualization exercises have help with the anxiety and heart palpitations? Although maybe they are purely biological for you. I have found that a book by Shakti Gwain called Creative Visualizations has helped me tons. It is short and super easy to read and just gives little exercises to go through to help relax and they are great. Also, Jon Kabat-Zin has a bunch of books and audio exercise cd’s for guided meditation and body scans for deep body relaxation.
Also, I noted in your email that you stated you don’t eat out. I really don’t go out that much either but on occasion it is hard to avoid without being left out of celebrations or big events. One of the largest gluten intolerance groups has a Gluten Free Restaurant Awareness Program and they go in and teach the restaurants about the importance of being GF and how to cook, avoid cross contamination and clean. They will not support a restaurant that does not meet it’s guidelines. You can put in any zip code across the US and get a list of these restaurants. Great for traveling! Here is the link
http://www.glutenfreerestaurants.org/
Here are some other links that I have found really helpful:
Gluten Free Philly – Always has up to date info. on new GF products…
http://glutenfreephilly.blogspot.com/2009/08/news-notes_21.html
Gluten Free Girl – blog by a GF chef and her chef husband – great recipes, photos and stories… Highly recommend the book too. Also, down the righthand side when you scroll down a bit is a list of recommended GF websites to check out.
http://glutenfreegirl.blogspot.com/
You have probably been here already but…
http://www.celiac.com
deals with pretty much anything you could think of dealing with a gluten free diet – not just celiacs disease. I find there safe and unsafe food and ingredients list to be super helpful and thorough
Hope some of this helps. Any suggestions are always welcomed! If anyone else knows of any good sites or blogs I would love to have a heads up…
Wishing you (and everyone else here)and wonderful end of summer.
Jen-
My wife has been gluten free for roughly 3 years. Chicken Fingers was something my wife loved as well. We have a great gluten free chicken finger recipe if you are interested.
I think that living the gluten free lifestyle is an ever evolving adventure. I don’t believe that you ever “truly” become an expert, just more content with the objectives in front of you.
By the way, DeLand Bakeries makes a millet bread that is sold in local Hy-Vee stores. Hy-Vee labels it gluten free because DeLand states their bakery is gluten free most of the time. After eating it for some time, because it is a great alternative, we have come to find out that there is more than likely cross contamination. We have been on the phone with DeLand Bakeries many, many times. Since their story is never consistent and at one time we had someone from DeLand state that they never fully clean their line, there is bound to be some cross contamination. Not good news if you don’t display the classic symptoms of a celiac.
I know this is a new journey for many of you that is both overwhelming and confusing. Hang in there and know that you are doing this for the betterment of your health and life.