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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
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
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