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

Frightened

Karagirl

By Karagirl
in Coping with Celiac Disease

Recommended Posts

Karagirl Newbie
Karagirl
Posted

Hello, thank you for reading this.

Friday night I slipped on ice on the top of stairs on my deck, and landed hard, sideways-bouncing down 4 steps. I am only 35 years old...and the moment I stopped hitting my backside on those steps I knew I was in trouble. An E.R. visit revealed I had fractured my pelvis. I hit those steps hard, so hard my skin indented and is still indented around a massive swollen butt. I am not a large person. 5'7" and 130 pounds. 6 months ago I was found to be vitamin d deficient. That combined with the history of celiac (diagnosed in 2004) I mentioned/ asked my endocrinologist if I needed a test for osteoporosis (I have also had a hysterectomy at the age of 29) and she just looked at me and said it wasn't necessary.

Now, I am thinking, that I should have pushed much harder.

I just started seeing an orthopedic doctor last wednesday, due to needing help strengthening my left side after suffering a lacunar infarct in Nov. of 2004. This fracture on my right side is leaving me a bit disabled.

Celiac is a serious, life threatening, possibly disabilitating disease. Are there any doctors out there that truly understand this disease and all its ramifications?

I am only 35, and I am strong---but my body is really taking a beating. I don't know what to do anymore as far as being wise about being as healthy as I can be. I am gluten free, but went so long misdiagnosed, that I am afraid it has shortened my life.

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

Celiac.com Sponsor (A8-M):


Dennis wayne Newbie
Dennis wayne
Posted
Hello, thank you for reading this.

Friday night I slipped on ice on the top of stairs on my deck, and landed hard, sideways-bouncing down 4 steps. I am only 35 years old...and the moment I stopped hitting my backside on those steps I knew I was in trouble. An E.R. visit revealed I had fractured my pelvis. I hit those steps hard, so hard my skin indented and is still indented around a massive swollen butt. I am not a large person. 5'7" and 130 pounds. 6 months ago I was found to be vitamin d deficient. That combined with the history of celiac (diagnosed in 2004) I mentioned/ asked my endocrinologist if I needed a test for osteoporosis (I have also had a hysterectomy at the age of 29) and she just looked at me and said it wasn't necessary.

Now, I am thinking, that I should have pushed much harder.

I just started seeing an orthopedic doctor last wednesday, due to needing help strengthening my left side after suffering a lacunar infarct in Nov. of 2004. This fracture on my right side is leaving me a bit disabled.

Celiac is a serious, life threatening, possibly disabilitating disease. Are there any doctors out there that truly understand this disease and all its ramifications?

I am only 35, and I am strong---but my body is really taking a beating. I don't know what to do anymore as far as being wise about being as healthy as I can be. I am gluten free, but went so long misdiagnosed, that I am afraid it has shortened my life.

i am frightened too. malnutrition for so long. three broken ribs in the last year with very little pressure at the time the incidents. i haven't been healing as well as i thought i would very little weight put on. i still have a lot of nerve ataxia even when i'm not contaminated. i don't have any stamina to speak of yet. psychologically it is wearing me down. i'm still blaming myself for all my shortcomings. the light at the end of the tunnel doesn't seem to be getting any brighter. but someone wrote that it gets harder before it gets easier i didn't understand it then but i think i do now. i know the body will repair itself eventually, i just hope that being undiagnosed for sooo long hasn't left me with irreparable damage. keep your chin up it's all can do good luck :D

kbtoyssni Contributor
kbtoyssni
Posted

I feel that I'm the one who has to do all the research on the ramifications of the disease so I can make sure I'm getting the right treatment. Most people your age wouldn't need a test for osteoporosis, but for a celiac I'd recommend it. You're young enough that you may be able to reverse some of the symptoms.

dbmamaz Explorer
dbmamaz
Posted

I dont have anything really to add, but I just want to say that its so much easier to be scared and down and even feel hopeless when you are sick or injured. You will feel better when this is behind you. Do get pushier w your doctor, bring a freind if it helps, or find a new doctor you feel more comfortable with. You cant look back you and only move forward and do your best to take care of yourself.

babysteps Contributor
babysteps
Posted

although time consuming, sometimes taking a more direct role in your own healthcare is often helpful from the sense of control alone, much less from the (hopefully) more targeted care that should result.

Some drs are open to being educated - if so, gathering a few studies could help. Another approach is to network via local celiac group and/or friends - just tell everyone you talk to that you're celiac & looking for an informed dr. If you have any friends who are nurses (or other healthcare professionals) they often have great insights, too.

Also, for some tests, you can get them yourself w/o Dr referral - IF you have the $ or time to hassle insurance directly for coverage - in our town last week a for-profit company offered 4 "wellness" tests for I believe $120 total, one was a bone density test (via ultrasound? at the ankle). They did this at a local church. [company was Lifeline Screening, the appointment # was 877 547 1583]

Hope you feel better soon and heal quickly!

itchygirl Newbie
itchygirl
Posted

I had a spinal compression fracture (at 40) from osteo before being diagnosed.

Ursa Major Collaborator
Ursa Major
Posted

Kara, that sounds like a pretty bad fall, and you might have broken your pelvis even if you didn't have celiac disease.

I broke my ankle six years ago by just going over on it when stepping on the edge of a driveway. But I had a bone density scan done two years ago, and my bones are strong and healthy. So, I can't blame my fractured ankle on celiac disease. My problem is very weak ankles and wrists.

If you have a scan and it shows osteopenia or even osteoporosis, DON'T let the doctor talk you into taking those drugs that are supposed to make your bones denser. They are big trouble. Not only are they very hard on the liver (needing monitoring), but they stop your bones from renewing themselves. Which makes them look denser on scans, but older bone cells are more brittle. And the worst thing is, that those drugs have been shown to sometimes cause necrosis of the jawbone! Which is VERY frightening for the people who get it and disfiguring, too.

At your age you could arrest osteoporosis by taking vitamin D, magnesium and calcium and avoiding gluten. In fact, it may even completely reverse. But as I said, you don't necessarily have a problem with osteo yet.

Dennis, are you still consuming dairy and soy? Those could cause some of your ongoing problems. Also, have you been tested for deficiencies? You should have that done as soon as possible, so you know where you stand nutritionally, and know where to supplement.

How long have you been gluten-free?

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      132,393
    • Most Online (within 30 mins)
      7,748
    HeckelCrazy
    Newest Member
    HeckelCrazy
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.