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Coming Out Of The Flour-Bin...


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6 replies to this topic

#1 MrAtari

 
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Posted 12 December 2011 - 05:46 PM

I guess I have a variety of things running through my head, least of which concerning forum edicate (though I will make the attempt). So I'll just start at the beginning, and hope I am recieved with a little more compassion than the rest of the people I've encountered in life.

I was diagnosed a few years ago now, I want to say January of 2010. So fairly recent. I'll admit here and now, I thought going gluten free was no big deal. That Celiacs disease, in my head, was the silliest thing I could have ever imagined, let alone find out existed. Joke is on me apparently.

Don't be insalted, these were just my first impressions. I was upset and angry, and quite frankly still am. I only have myself to blame however, as I didn't take thise disease seriously in the beginning as maybe (most of you) you have. I thought it was a simple solution, that maybe even miniscule doses (such as contaminates or chemicals) were fairly laughable. Again the joke was on me.

Doctors are nice people, but they can't tell you everything if you don't ask the right questions. They pretty much say you are screwed with this thing now, and that's their job. I understand that. I'll tell you this - I wish I had not been a cocky idiot. Wish that they had more immediate information and support to give (locally) than a simple photo-copied pamphlet of a generalized gluten-free diet. No wonder I treated it like a joke, their method of treating the patient wasn't much better. But hey, that's all they could do right? So I walked forward in the dark.

To whomever reads this, yes, I am an angry Celiac. I'll tell you what though, I only have myself to blame. I was given resources countless times and ignored them. I thought it was as simple as "avoid bread and preservatives" (which btw turns out to be a LOT of things) ... which I did happily for a while. Soon I discovered how limited my diet was, or, what I was limiting my diet to, to be precise.

Say for example, I am the type of person that can eat the same thing for a week straight with very little complaint. Later on I found myself craving (MADLY) for my old dietary habbits. I miss the Subway, McDonalds, any mom-and-pop dinner. I'm a lover of the sandwitch, and I hope I'll find something satifying one day. (I do love Udies Bagles however...Great for Burgers..)

Back to the point, I limited my diet severely to the few types of foods that I knew were safe. This in my experience turned out to be a GIAGANTIC MISTAKE. Variety is important, just as any new discovery is. Some things are hard to do, and looking more inward at myself (lol) this happens to be cooking. Some of the recipes I've found seem so...gormet...It's fairly intimidating to a person like me, that is not the experimental type.

Yeah I'm a big dummy, but even dummies are celiac w/DH. I'm sure most could figure that out by now. Maybe it just takes me a while to "warm up" to things, this disease being one of them. Just today I found out about hygene (soaps, detergents, etc.) and for once after a shower my skin didn't flake off. Feels nice.

So I'm gunna wrap this up. I found this forum here, and it has more information than any generalized Celiac site I've been too so far (then again, I do have a short attention span. STOP JUDGING!) so I wanted to say hello. It has been a very large help for me, regarding personal hygene. Hopefuly more in the future. Apparently I need new cookware as I have been cross-contaminating myself. Just another new thing I learned, and am thankful to learn.

So to everyone here, thank you. My name's Adam, and I hope my (bitter) personality isn't too off-setting.
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#2 Marilyn R

 
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Posted 12 December 2011 - 06:44 PM

Hi Adam,

Welcome to the forum. All of us learn more here than anywhere else, I think.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 Di2011

 
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Posted 13 December 2011 - 02:42 AM

Hi Adam,
I hope gluten free works for you. I was pretty crazy/incomprehensible in my early days of gluten problems so hope you will continue to post like I did - reluctantly. Posting problems/questions issues one at a time was my lesson.
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#4 GFinDC

 
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Posted 13 December 2011 - 02:14 PM

Welcome to you Adam. We all learn at our own pace, even if we are in the came classroom. No biggie, the goal is the same to learn how to eat a healthy gluten-free diet. Since you mentioned DH, you might want to check out the Dermatitis herpetiformis section of the board. And the recipe section might help to. Try a search on snack ideas or breakfast idess. Not everything is complicated to cook. :) Hello crock pot!
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#5 deltron80

 
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Posted 22 December 2011 - 11:37 PM

welcome to the rest of your life
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#6 Roda

 
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Posted 22 December 2011 - 11:56 PM

Welcome MrAtari(Adam)! How to deal with celiac disease is a big learning curve. It's unfortunate that a lot of doctors tell you that you have celiac and send you on your way with not much resources. I had a month from when my blood work was positive till I had my scope that I scoured for information(I had been doing research prior on my thyroid disorder and anemia when celiac kept coming up so I asked to be tested).

My endocrinologist, the doctor who order the blood tests, wanted me to consult with a GI and go off wheat. Boy I'm glad I did know to stay eating normal until I had my scope/biopsy. I didn't know though I didn't have a complete celiac panel. I still got my answer though. After I had my biopsy the path report was pretty conclusive for celiac but my GI gave me the option to stay eating normal and recheck blood work in 3 months or go on the diet. Again, I feel fortunate that I was "lurking" around this site for awhile and knew what I needed to do. Then I decided to consult with a dietatician..I knew more than she did and even found mistakes in the information pamplets she was handing out! Frustrating.

Like I said before I was greatful I had found this resource beforehand. None of the people I consulted with had a great grasp on the whole picture of living gluten free. I feel bad for people who only get partial information.

Again welcome. This can be a great site for information.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#7 xjrosie

 
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Posted 10 January 2012 - 06:45 PM

Welcome.

I'm pretty new to the forums too, and this whole thing is very distressing; I totally agree with you there.

But, now it's been two year. No point in beating yourself up about what is in the past. Move on and proactively get involved in finding the resources (obviously you are, because you're here!).

I don't have Celiac, but my daughter does, and she's T1 diabetic too. What a PITA!! I did mention to my best friend the other night that I think I might have it, and he asked why. I said, "How often and how long have I been complaining about stomach aches, tiredness, depression, and general achiness?" His answer was daily, for years. So I'm getting tested. I'm nervous.

But at least it's not the end of the world. I can honestly say that the food offerings for Celiacs has practicaly quadrupled just in the six months that I've been dealing with it with my daughter.

I've found pizza places with GOOD gluten-free pizza. Chain restaurants are now catching on. I even saw a Chex commercial last week that was solely about the five flavors of cereal that are gluten-free. So it won't be long before the food we need to eat is very mainstream.

Don't let it defeat you. It's going to get better, or at least you'll get more used to it, right?

I've only been here a couple days, and the people here aren't afraid to answer questions straight-up or even pm you with additional resources. It's been great, so come back more!
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