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Coming Out Of The Flour-Bin...


MrAtari

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MrAtari Newbie

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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Marilyn R Community Regular

Hi Adam,

Welcome to the forum. All of us learn more here than anywhere else, I think.

Di2011 Enthusiast

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.

GFinDC Veteran

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!

  • 2 weeks later...
deltron80 Rookie

welcome to the rest of your life

Roda Rising Star

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.

  • 3 weeks later...
xjrosie Apprentice

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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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