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SMDBill

Member Since 24 Oct 2012
Offline Last Active Dec 10 2012 04:23 AM
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#835683 I Feel Like I Am Going To Die....:(

Posted by SMDBill on 10 November 2012 - 04:45 PM

Harsh reality is you have a debilitating disease if left untreated and you are allowing it to win. The simple answer is it's just food. Period. Eat the right stuff and feel better or continue on that path to worse health, possibly cancerous later. And it does NOT have to be expensive. I eat fruit, nuts and some candy (M&M's for a small snack) every day during the day instead of big meals. It's portable and just makes the day easy. I eat throughout the day that way. You can have many cereals for breakfast, eggs, bacon, sausage, gluten-free pancakes, fruit. For lunch, deli meats (not processed) but there are also processed that are gluten-free (Carl Budding I believe is one), gluten-free bread (Udi's white is good!) but it's a bit expensive, potato chips (Lay's is gluten-free and I think Frito's are too), leftovers from dinner, salad with gluten-free dressing (tons of them are naturally gluten-free), peanut butters (many are gluten-free naturally), jelly. For dinners any meat is fine, fish, chicken, shrimp, lobster, and on and on. Every vegetable is ok that I can think of. Apple sauce, gluten-free noodles from Target or other stores for spaghetti, spaghetti sauces are usually gluten-free, and the list just keeps going. Tons of candy bars are already gluten-free.

Don't fall for the gluten free hype. Many foods just don't have it anyway. Those that do often have easy alternatives. But yes, you do have to give up some foods. No alternative to that and if you don't, especially long term, you could lose your life to food. Why gamble? Why pay that price and stay bedridden all day? Why let the kids and hubby suffer because you aren't doing what you need to do to manage YOUR disease? They can help. Let them. Teach them and teach yourself. Take the bull by the horns, take charge of your body and your diet, and make the changes. Make them your teammates to stand guard when you have to eat out or shop for food. You need their support and they need you. Be a family and get everyone on board with you.

I hope you can fix this. Right now it's a mess and nobody deserves it to be that way, including husband and family. You owe yourself better than continuing to eat foods that are poisonous to your body. It's not that difficult to protect yourself and let your body heal, but failing to put it all into trying is just setting yourself up for far worse problems later when your body turns on you and deteriorates to its end. Many prayers for your recovery.
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#834934 Newly Self-Diagnosed - Get Tested! My Story...

Posted by SMDBill on 07 November 2012 - 05:09 AM

I posted some of this elsewhere, but this is for those newly self-diagnosed or suspecting they have celiac due to improper or incomplete testing by their doctor. I self diagnosed 2 months ago and have been gluten-free ever since. One glutening a couple weeks ago...brutal. I decided to setup an appointment with a gastro and find out just what my situation really is. That appointment was late Monday afternoon and he had me in my procedure (EGD, bone density test, tons of blood work, etc.) the next morning. He wanted accurate test results so since I was gluten-free already he wanted biopsies and other work asap to baseline me and get me on the road to recovery.

I do not yet have the blood work results or bone density information yet. However, many people on the board ask similar questions regarding whether or not an endoscopy will show any signs of celiac if someone is already gluten-free. Short answer is YES! Although I do not know how long the healing time is for the intestine, my endoscopy results, although not back yet for the biopsies, showed visible villi damage in the intestine. I also have stomach lining damage from daily ibuprofen use for the celiac-induced headaches I no longer suffer from since being gluten-free.

If you doubt getting answers, please don't. It is worth the effort to go through all the testing even if you are gluten-free. Perhaps that's not the case for long-term gluten-free people, but if you've only recently gone gluten-free I'd recommend discussing it with your gastro and getting his/her insight into it. Mine happened to be highly experienced with celiac and left no test out of the list so it's important you find the right doc with the right experience and ability to test you properly.

One interesting note: my gastro has been practicing for 35+ years. In his first 15 years he had exactly 2 cases of celiac. He stated that statistically there should only be 400 cases of celiac in the US, but that we actually have between 3-4 million and possibly many more than that. He has gone from one every few years to now diagnosing a new case every 2 weeks. Don't doubt yourself...go get tested. It's worth the time and you may be surprised at what they find and the insight they give you from a medical perspective. I feel blessed to have such a wonderful gastroenterologist and I wish everyone similar luck finding a great doctor to fully diagnose your condition, and more importantly to get all of your vitamin, bone and other issues under control at the same time.
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#834780 Tested Today!

Posted by SMDBill on 06 November 2012 - 10:57 AM

I have self diagnosed myself as celiac, but I wanted an accurate diagnosis and follow-on plan to know if I have bone, vitamin and other issues that need attention. Yesterday was my first appointment with my gastro and he was wonderful! We went over all my symptoms, including skin condition that I think used to be DH. Since I am now gluten-free he was unable to look at my skin and see signs of celiac, but he probed me with lots of questions and fully agreed that I sound as if I am celiac. It was 5pm last night and he was already setting me up for full celiac panel, bone density test and EGD...all scheduled for today.

The doc wanted to get my tests run asap since I'm already gluten free. He concurred that gluten-free was the right thing for me and he wanted every test run to baseline the disease for me and document all my levels. This morning I called his cell phone and he had already arranged the EGD, bone density test and all the blood work (taken during IV insertion before the EGD). I went into the EGD hoping he'd find something that would provide evidence of damage. Boy was I in for a surprise.

The EGD showed signs of damage in my stomach and intestine. He took 6 biopsies, all from spots he showed me were already inflamed and damaged. He diagnosed part of the problem as duodenitis. In my stomach he identified a problem as erosive gastritis, most likely the result of long-term ibuprofen use (daily headaches for years due to celiac). He prescribed medication to help with the inflamation and infection. From the pictures he took in my stomach and intestine, he is pleased he got valuable information and headed off more serious problems in the process.

I won't know anything concrete until Wednesday next week, but he is certain it will all point to celiac from the test results. He already believes all the symptoms do so now it's a matter of putting it all together and planning a path to better health by fixing any deficiencies in proteins, vitamins/minerals, thyroid issues, liver enzymes or whatever else could come back abnormal. With a family history (5 generations) of hypothyroidism or hyperthyroidism I'm a bit worried, but I have not displayed symptoms of either yet. All of this testing will also identify thyroid issues that I may not be aware of, but for now I have fingers crossed that it's normal.

I'll post back once I have official information from the tests and whatever plan we work out for me to follow beyond my current supplements and gluten-free diet. The stomach issues are a bit worrying, but I caused those myself so I know who to blame :)

Thank you to everyone on the gluten-free forum! What a great place to come, discuss issues, help others and learn so much.
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#834366 Skin Rash And Gluten?

Posted by SMDBill on 04 November 2012 - 02:43 PM

Without knowing what you were tested for exactly and how you were tested, a negative isn't necessarily a negative. I'd think if you began to notice even slight changes after being gluten-free, re-introducing it could certainly cause reactions. I had nearly all my symptoms disappear within the first week so there's no reason to think you couldn't feel those symptoms after the same period and then changing back to gluten.

I'd suggest going gluten-free for a longer period of time if you believe you saw improvement while gluten-free. Worst case, you will eat food without gluten without harming your body at all.
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#832934 Chronic Sinusitis

Posted by SMDBill on 28 October 2012 - 11:32 AM

I do not have chronic sinusitis, although I have had a few bouts in the last few years. However, I had constant drainage that made me clear my throat constantly. I developed a few throat and sinus infections that were only killed by strong antibiotics. All my life I've been susceptible to strep throat, but not sure if that mattered back then that I now have celiac.

After about 4 days being gluten free I noticed I hardly had to clear my throat at all and the morning sinus drainage/blockage has minimized. When I got glutened a week ago my sinuses started to act up again and I was clearning my throat a lot. Those symptoms have since settled back down and the drainage is minimal. I'm guessing if you are gluten intolerant or have celiac, the sinus issue will change or disappear once you know and go gluten-free.

Are you gluten-free right now? If not it may be a good idea to see your gastro and get tested for celiac before going gluten-free. Going gluten-free will give you answers but it'd be best to find those answers after knowing the root cause.
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#832336 What Symptoms Have Been Alleviated For You Since Becoming Gluten Free?

Posted by SMDBill on 25 October 2012 - 05:30 AM

Hello all!

I've, essentially, diagnosed myself with a gluten intolerance (via elimination diet) and have some concerns about symptom alleviation. I've been gluten free for about 1.5 months, aside from accidentally consuming it once and then again to see if I had a reaction. I definitely did. I know that it can take months for inflammation to go away, and for things to start healing. Right now, I'm having some discomfort in my lower colon area; my naturopathic doctor believes this to be inflammation from the gluten. Anyhow, I'm interested to know, what changed for you after you went gluten free? Did you have more energy? lose weight? gain weight? healthier skin and hair? more regular bowel movements? get rid of depression? any bloating? How long did it take to see changes? What symptoms have not gone away? Did being an un-diagnosed celiac for a long period of time cause any one to have any permanent, un-healable damage or other diseases or syndromes? You guys are a wonderful community, and appreciate all of your advice and shared experiences. Have a blessed day.

I'm 6 weeks into being gluten-free.

More energy? Absolutely

Lose weight? 11 lbs so far and not trying besides just eating healthier and stopped consuming so much sugar via sweet tea and coffee. Mostly drinking water and I treat myself to 1 cup of coffee each morning, chocolate milk (lactaid) once per evening and orange juice whenever I want some.

Skin? I had bumps on my feet, psoriasis like itching on my scalp in one spot and really rough heels and elbows. All of it cleared up within a week or two and my heels are almost soft again, elbows are completely soft. Head is free of itching.

Regular? OMG yes. No more D and the occasional C is mostly probably from supplements.

Depression? I wasn't depressed, but my disposition changed for the good. I don't fight much with my wife anymore :)

Bloating? Only the one time I got glutened and it was horrible

Changes? It took 2 days and I felt like a new person, better than I had felt in more than 10 years.

Symptoms? I do not know of any symptoms that didn't go away. My headaches are gone. I no longer take ibuprofen daily and I haven't had a migraine since going gluten-free. My skin is improved. I had sinus drainage constantly before going gluten-free and I had to clear my throat almost every minute while upright. That's gone but came back when I got glutened. I have energy like I'm 20 years old again. I don't get fatigued as easily. My muscle strength has returned, the tingling in my arms and hands is gone. There are probably more symptoms I'm not recalling, but it's been like a miracle for me being gluten-free.

All the horror stories of people saying how hard it is to be gluten-free just haven't materialized. Sure, I gave up a ton and I can attest to the "celiac sucks" claims. I want bread, grains and other products of grains, but I know how it feels when I do. I refuse. I changed my diet, I eat better than ever in my life, I take supplements to get what I'm missing and I feel great as a result. My body tells me how it's doing and I just keep feeding it. I'm losing weight the right way by eating healthy food and burning more than I take in. I feel so good and I'm blessed to have answers to years of problems. I see food as a challenge I can overcome and I refuse to give in to temptations of foods like pizza or cookies. I find alternatives without gluten when I have urges or I find something else to help settle those urges. I'm not perfect, but I'm winning! (Wow, almost sounded like Charlie Sheen!! haha)

Best of luck to you...and many days without gluten!
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#832332 Fear Of Food

Posted by SMDBill on 25 October 2012 - 05:10 AM

Although new to celiac for the last 6 weeks, I was not eating in the beginning. I couldn't find things to satisfy me so I ended up, without consciously doing it, eating far less than I should. I quickly turned that around by something I read online. It described the condition of fearing food and equating food to fuel. Without that fuel we'll worsen our condition and we won't have the energy to enjoy life. I refused to give up just because my food choices changed so I adjusted to more fruits and other foods naturally free of gluten. I eat all day, but it's nuts, fruit and other things. I don't eat a daytime meal until dinner, but I refuse to stop eating. I keep putting small amounts of fuel in my body to give it the energy to fight this nasty disease. Without that energy, the disease wins.

I'm sure it's difficult to change your personal perception, especially when the driver is psychological. I get those jolts of fear around different situations, especially eating out. In the end, I refuse to lose and I just try to make the best choice I can in the situation I'm in, but it always includes eating something (even if I have to stop somewhere different after I leave the situation just to make sure I eat).

Your body is a furnace and it produces heat. You can't make heat without fuel and food is that fuel. The vitamins and other supplements are also fuel you're not getting completely from food. It's all important and you win the battle when you take in enough fuel to make it through the day. If you burn what goes in, nothing is wasted and no weight is gained...and you win! Your body is the only one you have...denying the body of energy will only make things worse and deteriorate muscle, teeth, hair, energy, bones, etc. It's important and I hope you can work through it with your therapist to get on the road to the best health possible, even if it's tough and trust is hard to give at meal time. I just hope you don't let the disease and your mind be overcome by those scary choices you're forced to make each day.
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#832320 Orthorexia. Might Apply To Some Of Us.

Posted by SMDBill on 25 October 2012 - 04:39 AM

I'm new to celiac, but it sounds to me as if lumping certain groups into the theory makes the theory more plausible. The problem is that there are groups of people who must live that way and then there is everyone else. We have no choice but be selective about every single situation we put ourselves into. How long will we be there? Can I go that long without eating if the foods are potentially unsafe? Should I eat in advance? What are they serving? Do they have gluten-free foods? Do they have veggies or fruits available?

It's difficult to believe someone could consider it a disorder when we calculate our every meal, bite, ingredient, condiment, etc. We have no choice and my last 3 days of misery from glutening are exactly why we do so. One bad move and we're the ones who suffer. To me it's a lifetime strategy I have to follow, with me as the aggressor, or I suffer the consequences of my lack of attention, concern or knowledge.

I do believe there are disorders of all types. When you're forced into a situation your reaction is out of need. When you choose your situation, that may lead to your disorder. Very different in my eyes. I live how I live because I have no alternative.
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#832316 My Journey..where To Go From Here..

Posted by SMDBill on 25 October 2012 - 03:15 AM

I really can feel your pain and as I read your post I couldn't help but think of how much your situation mirrored mine, particularly your symptoms. It started to be noticeable with the pain and bloating, feeling like I couldn't possibly stretch internally any further. From the outside I looked normal, but my insides were telling me otherwise. The stool issue is another clue to it all.

It's wonderful that you were tested and your specialist is leaning toward celiac as your diagnosis. But, diagnosed correctly or not, your diet will tell the real story. If you stick to being gluten-free and adjust how you live, as well as how those around you live - how they prepare meals, how they choose where to eat, etc. - you may find relief faster than you imagine. Mine took only 2 days to feel better than I have felt since I was in my 20s. I'm now 43 and have been gluten-free for 6 weeks. In 2 days I felt like a new person...that's the biggest clue to the problem. Like you, no pain medication, antacid or other product could touch it. Headaches daily, sinus drainage constantly, skin issues, fatigue, oily stools, extremes from D to C. It was awful and it sounds like your situation is as well.

Since I just found out I had it, my first fear was holiday meals. I was so self conscious and afraid to question anyone's meal preparation outside my home. We have a wonderful family dinner at every holiday and many are at my in-laws' house. My MIL is an awesome cook and I just didn't want to be part of anything that would make her change those meals we have been enjoying all these years. However, my health had to come first so we talked it out. She was so open and caring and agreed to make sure she used gluten-free flours to make gravy, gluten-free broths, a special dish for me because I can no longer have dressing or rolls, gluten-free dessert. We had planned to have a trial run dinner in advance and I'm not sure if we'll get to or not, but it was so great of her to offer. Maybe you'll have similar concern in your family because our loved ones really do care enough to keep us safe. It's hard, especially for them because they don't know all the things we worry about with cross contamination, from something as small as using the same utensil in 2 cooking dishes that could carry gluten from an unsafe food to what should be a safe one. Dish washing is another concern, as is keeping flour out of the air and off of our foods. Countertops, cutting boards, knives...they're all scary to us but non-celiac people would never give them a second thought outside of meat/poultry concerns.

I know you're 20 and don't feel comfortable having to ask questions and speak out, but you really do need to. You can discuss with them your medical condition and explain the things that can harm you. Most likely they will start thinking of that meal they plan to prepare and could start asking questions themselves, leaving you to not feel like the "bad guy" for talking about it. If you're genuine and just present your situation as an awareness thing for them, switching gears into questions about those dinners may be easier than you think. You're not insulting anyone by asking about ingredients or preparation methods...your health depends on it. Nobody will ever take it as seriously as you do so it is important that you adjust a bit and get comfortable asking relatives, friends and restaurant workers about anything that concerns you. It's not fun to explain it over and over to new people, but it's necessary to protect you and give yourself time to heal. Otherwise you'll lay at home in pain, as I have for the last 3 days, due to a contamination or ingredient issue. Once you go through that, which you probably will but I hope for you that you never do, there will be a change of heart and asking won't be difficult if it protects you from days of pain.

Best of luck. And about that food. I started my first week by buying up equivalent foods to what I normally ate. Not only is that extremely expensive, few of them really satisfy those cravings because it's so difficult to match the taste of what you know already. I just eat my gluten-free lunch meats without bread, hamburgers without bun (cut up like meatloaf and dipped in ketchup!!), more fruits, eggs, potatoes, corn, green beans, sweet potatoes and other yummies. I make dinner my best meal of the day and I eat fruits, nuts, candy (need the sugar), jello, fruit cups and pudding during the day. I eat a lot still, but none of it is junk like before. A side benefit is I have lost 11 pounds without being hungry and I'm eating healthier than ever before. I stopped buying those expensive gluten-free foods and just found foods that naturally don't have it. Kix cereal, Rice Chex (many varieties are gluten-free), lunch meats gluten-free (many already are), etc. It's not hard, but it is an adjustment. Take care!
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