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New To Board . . .

Guest Rad

By Guest Rad
in Coping with Celiac Disease

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Guest Rad
Guest Rad
Posted

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
Guest nini
Posted

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
Guest gfinnebraska
Posted

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
minibabe
Posted

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
kevsmom
Posted

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
jerseyangel
Posted

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
Canadian Karen
Posted

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
lizzy
Posted

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
Guest Rad
Posted

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
tarnalberry
Posted

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

bknutson Apprentice
bknutson
Posted

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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    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thanks so much! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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