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

Seeing Every Doc In Town! Fractures,osteopenia...need Answers!


southgin13

Recommended Posts

southgin13 Newbie

Hello!!!

I am hoping to gain some wisdom from all of you guys who know more than I do!!! I have always known that food is not my friend...forever I thought it was just greasy food, fried foods so I stayed away from them as a teenager. They made my stomach hurt and my skin itch. Then in my twenties I realized through a food elimination process that it was gluten!! So I just stopped eating it.

 

-Spring forward to my thirties now and 4 foot fractures this year...sent me for a dexa scan...osteopenia -2.4...ummm that's awesome! 

 

-Tons of labs show what it isn't: all of these were good....thyroid, parathyroid, kidneys,liver, cholesterol levels, hormone levels...all good! Yea! so....what is it???

 

-Vitamin D is a little low even though I have been on doses of that and Calcium for the past 6 months due to non-healing fractures in my feet. Podiatrist, Endocrinologist and Primary Care Docs all said it is low vitamin D  but not low enough to have caused the osteopenia...so....???

 

-Also in the past year I have realized that DAIRY hurts my stomach.  And now SEAFOOD (anaphylaxtic reaction) is my enemy as well....ARRGHH!!!

 

-So now I am on calcium, vitamin D  and not allowed to jog or run until answers are found. Don't want more broken bones!!!

But no one knows why I keep taking vitamins and my bones look the way they do on a scan.

 

-Primary Doc did a celiac blood test and then found out out I haven't eaten gluten on purpose for 5 years so...that was negative anyway.

 

---Basically I am just searching for answers other than "Please,take this med for your bones",  To which I say "um no thank you, I want to know what caused it instead!!" Or "Here is a pill for your depression"..."um no!"

 

-Just this week I tried "gluten free oatmeal" yesterday ....never been sicker...violent D...(sorry gross but true) and horribly itchy skin...and today worse cramps ever...felt like someone was pinching me from the inside! and still itching myself like crazy!!!

 

-Tired, sore,grouchy,headaches,LOTS of stomach issues, itchy, bumpy skin, depression,osteopenia,low vitamins.....GEEZ!!! I feel like I am going crazy and a little like a hypochondriac!!!! ;-( 

 

Anyone got any thoughts? Who do I see next?

 

I know it's long folks but aren't intros always long?? ;-) Any advice is appreciated!!!

Thanks for reading!!!

 

 

 


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

sorry  your  are  having a  hard time  .....I really have no  answers  but have  you looked  into  the  low  histamine  diet  and or   both & fodmaps  along with  gluten free?

cyclinglady Grand Master

You think you have been gluten free, but really? Here is Newbie 101, a link to thread in this forum. It offers tips and discuses cross contamination. You may be getting gluten, but not enough to raise antibodies to show on a blood test (assuming you took the complete celiac blood panel).

https://www.celiac.com/forums/topic/91878-newbie-info-101/

My doc told me that once you have fractures you technically have osteoporosis! And my mother had a fracture from falling (she does not have celiac disease). She took almost a year to heal. Found out that smoking impedes bone healing. Do you smoke?

Finally, other things cause intestinal damage which can lead to malabsorption. Foods like milk or drugs. You might want to research that theory.

Good luck and I hope you are feeling better soon. When I fractured my back (doing nothing) it was awful, so I can sympathize. You can heal! Do not give up!

1desperateladysaved Proficient

I am into natural medicine and my first wonder is maybe your body doesn't tolerate calcium?   I would make sure that it is really doing you good and not harm.   I just found out by using NAET that my body was allergic to calcium.  I am trying to get desensitized.  All of your list of symptoms in my family history.  Mom is on a lot of calcium, but her bones strength isn't good.

bartfull Rising Star

You need vitamin D to absorb calcium, but you also need MAGNESIUM to absorb vitamin D. Open Original Shared Link

 

I take 4,000 units of D3 (it's better than D2), plus a pill that has 1,000 mg of calcium, 500 mg of magnesium, and 5 mg. of zinc.

southgin13 Newbie

Thanks guys!

No, I don't smoke or use any medications of any kind. Except for Benadryl if I accidentally get seafood in my system.

 

As for vitamins: I am on 2,500 of vitamin D3 and 1,200 of Calcium and a supplement of vitamin K and Magnesium.

 

I am just tired of feeling like I am sick all of the time, stomach issues, itchy skin, and catching every cold and sooooo tired of not being able to jog/run!!

 

Just don't know what to try next! Waiting on Gastro appointment.

 

But not sure if it's even a good idea I feel like I am wasting money left and right! 

Solandra Rookie

I know listening to doctors and taking pills can seem scary, but I'd follow your doctor's advice, at least for the pills for your bones that they want you to take. I'd see what the gastro has to say, too, and get whatever other tests you can to at least cover your bases and hopefully get some answers. I'm sorry you're dealing with all of this!
 


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



Celiac.com Sponsor (A8-M):



julissa Explorer

sorry you are going through this. as far as why do conditions happen to us, do we ever really know? I take meds for my bones, I would scare me more not to and have more of a risk of breaks. 

 

hope you get to the bottom of this. 

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

    2. - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

    4. - cristiana replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,440
    • Most Online (within 30 mins)
      7,748

    Lillian Steele
    Newest Member
    Lillian Steele
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
    • deanna1ynne
      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
    • cristiana
      Thanks for this Russ, and good to see that it is fortified. I spend too much time looking for M&S gluten-free Iced Spiced Buns to have ever noticed this! That's interesting, Scott.  Have manufacturers ever said why that should be the case?  
×
×
  • 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.