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Guest Rad

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Guest Rad

Have been reading your message board for the past day, and joined last night. Was diagnosed in Nov. 2005, and gluten free since. Feel like I've learned more from you folks than my doctors. Found out I also have the malabsorption issue, along w/ osteoporsis. Not a lot of energy right now and have gained 10 lbs. the past 2 1/2 months. Prior to stress fracture in Sept., and getting sick in October was riding my bicycle 8 miles or walking 2-5 miles daily. Now don't feel like going to the gym, and am not feeling real socialable. Actually my real estate career is on hold -- again the energy thing. I know that this too shall pass and bright days are ahead. Again thanks for all your informative, as well as supportive posts.

Dianna


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Guest nini

Welcome to the board! And who better to learn about this new way of life than from people who live it every day? Dr.s really don't know enough about this yet... there are some that do get it, but they are very rare and you are very lucky if you get a Dr. that is educated enough about this.

Feel free to ask ANY questions here... no question is too stupid or too gross or too whatever! LOL!

Guest gfinnebraska

Welcome Rad! Let us know if you have any questions, etc. I hope you get your energy back soon!! :)

I had surgery over Christmas and can not walk on my treadmill for 6 weeks. That is killing me!!! I know what it feels like to be active and then not be able to. It isn't fun... feel better soon! :)

minibabe Contributor

Welcome to the board! Everyone on here is so wonderful and understanding, its like and online family :D It is really an amazing support group. Good luck

Amanda NY

kevsmom Contributor

Welcome! I know everyone on the board will be here to support you. There are so many people that have put in a lot of time to investigate all kinds of issues. When you have questions, feel free to ask them, someone is bound to have the answer.

Cindy

jerseyangel Proficient

Hi Rad--welcome in! Glad you found us here. These boards and these people have been such a help to me since I stumbled on this site shortly after I was Dx. I can relate to the lack of energy--and I also gained 10 lbs. in the first 2 months. Currently, at 7 months, my energy level is better and I've begun exercising again. It'll get better! :)

Canadian Karen Community Regular

Hi Rad!

Welcome to the board! If you have been reading through the site, perhaps you have already figured out that there is no topic we shy away from, no question that seems to gross to ask.....

Welcome!

Karen


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lizzy Apprentice

welcome dianna i hope you find all the help on here it will take time but things will get better. i have been gluten free for 3 months and i feel so much more alive than i did 3 months ago. they are some wonderful people on here who can answer your questions. liz

Guest Rad

Thank you for making me feel at home! Think I'm going to like, and learn a lot from this board!

Forced myself to get out of the house today, AND feel so much better for it ! ! Went to the gym and rode the stationary bicycle 5 miles in 30 minutes; that's really slow for me. Usually I do 10 miles in 30 minutes, but realize my energy level is "temporarily" on the back burner, and eventually I'll be back to my old self. Can't force it, but on the other hand need to do my best not to wimp out.

Following gym, went to a Pastel Society meeting. The past couple of weeks haven't felt like getting out and that's not like me. An old art teacher of mine was instructing the group today about painting night scenes. The room was packed with 100 people because of her reputation. Realized how much I had learned from her. Have been a member of this society four years now, and am finally noticing a core group of friends are developing.

While on the way home from the meeting stopped by a food co-op that is usually out of the way. What a treat to find serveral of the suggestions you folks have suggested on this this Board. Felt like a kid at Christmas. All products are listed as Gluten Free. Cereals: EnviroKidz Gorilla Munch, Health Valley Rice Crunch-Ems, and Nature's Path Mesa Sunrise. Picked up Kinnikinnick cinnamon buns, and Bionaturae pasta. Also found Cascade Fresh yogurt to labeled gluten-free. A box of Arrowhead Mills brownie mix found its way into my basket, as well as Ener-G egg replacer (a product Bette Hagman uses a lot in her cook-books). Do have a question about a San-J soy sauce. It says Wheat Free, but it doesn't say Gluten Free. And if I recall, have seen on this Board where that doesn't necessarily mean gluten-free. The ingredients are: water, soybeans, salt, and alcohol. Now that I've typed it out; is it the alcohol I should be concerned about?

Let me sing praises again regarding JUICING. With the malabsorption issue, just think it can't help but to drink fresh vegetable juice. It is SO refreshing ! ! !

Dianna

tarnalberry Community Regular

Welcome to the board! It is full of fabulously helpful people. :-)

bknutson Apprentice

Hey Rad

Just want you to know that the people on this board long befor I came along are great and wonderful people.. I dont get to get on here very often because I am always at work or have my grandkids but when I have they have always helped me. Beverly sent me 80 pages of stuff once and it was a life saver. And then I was about to just quit and just be in pain cause I felt like an idiot cause my memory is so bad and they all jumped on here and encouraged me to hang in there and they would help me. It is like have twenty or more best friends right there when you need them most who really understand. And it doesnt matter how personel the question we have all had it or done it so just ask. These are great people and I love them all even though I dont get to talk to them much. So you make sure you do. Good luck. And it will get better.

Barb

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    • 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 
    • marion wheaton
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    • Scott Adams
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