Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To Board . . .


Guest Rad

Recommended Posts

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,258
    • Most Online (within 30 mins)
      7,748

    Tdodge
    Newest Member
    Tdodge
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • suek54
      Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later.  The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied, no chance if recovery there. But I am in touch with some secondaries, so something to bear in mind. .  Niacin B3 Very interesting too. Must have a good read about that.  Im sure lots of questions will arise as I progress with dermatitis herpetiformis. In the mean time, thanks for your help.
    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.