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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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    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
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