Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

It Keeps Getting Worse

jaimek

By jaimek
in Related Issues & Disorders

Recommended Posts

jaimek Enthusiast
jaimek
Posted

Well, I was diagnosed with Celiac about one month ago and was very upset at first, but I have actually gotten used to the diet. The only thing that really bothers me is going out to eat. It is very difficult to go to normal restaurants anymore so I just stick with Outback and PF Changs. I was doing so well, but today I just got diagnosed with Osteopenia. I am only 26 years old :( On top of getting those results today, my office had a huge St. Patty's Day party and I could not eat a single thing. Needless to say I am really depressed and things just seem to be getting worse instead of better. Guess I just needed to write about my day since it has been one of those days when you just want to sit in the corner and cry. Was anyone else diagnosed with osteopenia? Is it possible to make a full bone recovery from this?? Any advise anyone can give me would be appreciated. It is so hard to be optimistic at this point.

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

Celiac.com Sponsor (A8-M):


GFdoc Apprentice
GFdoc
Posted

Hi - I also was diagnosed with osteopenia ( which just means bone thinning - not as bad as osteoporosis). I was 39 when I was diagnosed (I just turned 40 -2 months ago). I've been taking calcium supplements for almost 20 years since I never liked milk and became lactose intolerant in my 20s (perhaps the first sign of celiac disease?)

The good news is that now we can heal our intestines by going on the gluten-free diet, and eventually start absorbing calcium again. Your doctor will probably want to repeat the bone density scan in a year or two to see if anything has changed. There are osteoporosis drugs out there that help reverse bone loss - we may not need them if our diet significantly improves our calcium absorbtion.

Don't be down about this - think of it as a blessing... we have been given a chance to correct what's wrong with our bodies...before it's too late!

P.S. another added plus (if you look at it the right way)...now I can walk past all the unhealthy junk food at parties and not give in to my pathetic will-power. It's no longer a question of extra calories--I think of it as medical neccessity!

SteveW Rookie
SteveW
Posted

I know how you feel. I'm a 34 year old male and I was told I have osteopenia. Not the greatest news, could be worse, but not something anyone would want at such an early age. Had to sit in the Womans Imaging Center for my scan <_< , that was fun.

My GI put me on Fosamax for a little while until my body responds to the diet which it hasn't yet.

I also became Lactose intolerant in my early 20s-except for an occasional pizza I never ate dairy.

Guest shar4
Guest shar4
Posted

I feel for you, I was diagnosed with Osteoporosis when I was 41 or 42, before I was diagnosed with celiac disease. I have been taking calcium supplements, but haven't had a bone density done this year yet.

Blessings.

Wish Newbie
Wish
Posted

Hi there!

I totally understand where you're coming from! I'm 20 yrs old and was diagnosed with Celiac disease last May, and then back in February I was diagnosed with osteoporosis. At first I was pretty upset b/c it sucks to be in college and have the backbone of a 65 year-old woman (this is how my doctor described the bone thinning). I had to have the DEXA scan itself at the Geriatric center of a nearby hospital, right across from the Alzheimer's research unit, which wasn't exactly making me feel very young and carefree!

Here's the way I've been looking at things to help myself feel a little bit better about the situation: Osteoporosis doesn't develop overnight, so I figure I've had it for years and have just been living in ignorant bliss. It's not really a "new" diagnosis b/c the problem has been there for awhile...the diagnosis has just been a form of empowerment because it has exposed the problem and given me a definite motivator to work harder to incorporate calcium into my diet. According to my doctor, your bone mass doesn't peak until age 30, so bone loss tends to be pretty much reversible until then. Based on that information, there's lots of hope for both of us :-). Plus, you have the added benefit of having caught the bone loss before it reached full-blown osteoporosis, so reversal of the thinning is even more favorable.

I'm not taking any osteoporosis drugs at the moment due to another medical condition, but I have found some pretty tasty dietary sources of calcium, including:

1) Enjoy life foods Cinnamon crunch or Very Berry granola cereal (www.enjoylifefoods.com)

2) Pacific Foods Almond Milk or Hazelnut Milk

3) Kozy shack pudding (cinnamon raisin rice pudding, tapioca pudding, rice pudding, dulce de leche, etc.)

4) ANDI bars (Vanilla and chocolate shake-can be ordered at www.autismndi.com)

There's also Ensure, which is calcium fortified as well, although not everyone is a fan.

I hope some of this helped. Feel free to e-mail me if you want to talk to another Celiac w/bad bones :-).

~wish

Guest gillian502
Guest gillian502
Posted

I'm a 30 year old female and was diagnosed with osteopenia last year. My dr. said it was mild enough to just take calcium and vit. D twice daily, no fancy drugs were needed at this time. I don't see it as a big deal simply because it is rather reversible. If you take your vitamins and/or drugs, your bones do strengthen and you can reverse this. I've had a much, much, harder time handling the emotional and physical affects of the celiac disease itself.

oreyes Newbie
oreyes
Posted

Hi All............ :)

To you that have been diagnosed with osteoporosis don't get too down on yourselves. Granted, it's not something that will cure itself but there are many things you can do to slow the progression. Weight bearing exercise is one of the best------just simple walking.

I was diagnosed six years ago and started on Fosamax which I take once a week. Daily I consume 1500mg of calcium by taking Viactiv three times a day. It comes in chocolate and mocha (my favorite) and several other flavors and is gluten-free. It's just like having an after dinner mint after each meal. Other calcium rich foods are yogurt, cheese dark green vegetables, salmon and tofu. I don't dislike milk but as an adult, I'm just not a milk drinker.

I had a bone density scan last week and had almost a 6% improvement in my hips and spine mass so I guesss some of this is working. I'm sure not being diagnosed with celiac until three years ago didn't help my absorption rate of calcium but I'm pleased that I'm maintaining and not loosing more mass.

Good luck to all of you...............Judy

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

Celiac.com Sponsor (A8-M):


jaimek Enthusiast
jaimek
Posted
  • Author

Thank you all so much for your replies. You have really helped to make me feel better about all of this. It is nice to know that the bone loss is reversible and I am now taking Viactiv 3 times a day and I love it. Its like having an after dinner snack (just like Judy said). Wish- thanks for your suggestions on the calcium rich foods that are good. i am going to have to try some of them. I know that if I follow the diet and exercise that I will get better, this whole thing is just a big slap in the face all at once. Just hard to have all of this diagnosed after being care-free and eating/doing whatever I wanted for the past 26 years. I do feel lucky that this was all caught early because I realize that it can only get worse if not taken care of. So, I am grateful for that and I am also very grateful for this board cause it gets me through the hard times :)

outthere39 Rookie
outthere39
Posted

To the 26 year old

Man, I understand your blues. I am 25 and foud out last year that I have celiac disease. There is really something to be said to feel like you are in the prime of your life, then to find out this. The parties, the social gatherings, St. Patty's day was a rough one for me too. Usually, I would have been heading down to the local brewery to get my hands on some green ale. I have generally not enjoyed the holidays at all. I removed myself last year from them because I did not want to spoil them with my "problem." As I time passes on, I am really serious about the whole idea of if you want me, then you need to accept my celiac. Good luck and remember we are all battling the blues with you.

Richard B)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748
    Kris46
    Newest Member
    Kris46
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...