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

Introduction

statedrone

By statedrone
in Coping with Celiac Disease

Recommended Posts

statedrone Newbie
statedrone
Posted

Since I have posted a couple of times I should introduce myself. I am 36, and I was diagnosed with celiac disease August 17, 2006. I had to make my own diagnoses and then force the doctor to give me the test.

I guess I should start at the middle (the beginning would just bore you all). In 1999 I had gall bladder surgery, and after the surgery is when all of this started: gas, diarrhea, weakness, etc.). I went back to the doctor, and after seeing 2 specialists I was told I had IBS. I was given medicine and sent along my merry way. Only problem is, the medicine didn’t work. I felt worse. So I quit taking the medicine.

In 2001 I had a tubal, then in 2004 I started having gynecological problems (at least that is what I and the doctors thought) I was having SEVERE cramping, pain, nausea, etc.. Six months later I have a hysterectomy, the pain continues. I was about to give up. I just learned to live with it, thought it was stress.

Then in 2005 my sister got real sick. She went down to 79 pounds and was put in the hospital. She had the same symptoms. They had no idea what was wrong with her. Finally after about 4 months they diagnosed celiac. She is still way underweight (and is having a lot more problems than I am). However, we saw hope, we knew what was wrong and that is half the battle.

I went back to the doctor and suggested that it may be what I had. Basically told Celiac rare, blah, blah, blah. Then this year I dropped 70 pounds in three months, had diarrhea 14/15 times a day, still they said it was IBS. I FORCED them to give me a biopsy. It came back positive. The following week, I lost my job due to missed work. (They didn’t put that down as the official reason on paper, but was told that in person).

So now I am out of work and looking, and trying to get a handle on this disease. In some respects I am lucky, in that I was aware of what celiac disease was, and knew some of the lingo, and diet basics. But when it is YOU and not a family member your whole perspective changes. I felt like I had re-learn everything, I was a baby again, taking my first steps. My sister had her kids tested and one of them is positive. I have another niece that tested positive. So we are one big happy celiac disease family. The whole family has been great including my husband and mother-in-law. They are all supportive, and go out of their way to ensure we are not left out of events, and make sure that everything we eat is gluten free. It is amazing. I honestly didn’t think they had it in them. My brothers and sisters love to argue. So this is refreshing.

Well enough of blathering off at the mouth. Thought since I had started to post, the polite thing to do was introduce myself.

I also just wanted to say I have gotten some great information on here, so thank all of you.

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi, and thanks for telling us a little about yourself. Well, when will the doctors ever understand that IBS is a bunch of symptoms, that have a cause, not a valid diagnosis in itself? It is so frustrating. I am very glad you figured it out, and made them diagnose you accurately.

I hope you feel better soon, and find a better job, with a more compasionate boss.

Guest nini
Guest nini
Posted

welcome to this crazy bunch! thanks for the intro.

jerseyangel Proficient
jerseyangel
Posted

Hi and welcome to the board--we already "met" on my painful gas thread :lol: I guess that's a fitting welcome to our world :D

I'm very glad that you got everything figured out and demanded the testing you knew you needed. Like Ursula said--they all too often label us with IBS and don't bother to find the underlying cause for our illness.

Having a supportive family is also a big plus! I'm glad you found us :)

CarlaB Enthusiast
CarlaB
Posted

Welcome! Thank you for sharing your story.

Guhlia Rising Star
Guhlia
Posted

Welcome welcome welcome!!!

AndreaB Contributor
AndreaB
Posted

Welcome and thanks for sharing. :)

I'm glad you had the foresight and push to seek a diagnosis. It's a BIG plus to have your family behind you too. Great to hear!

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

Celiac.com Sponsor (A8-M):


TinkerbellSwt Collaborator
TinkerbellSwt
Posted

Welcome to the board. Feel free to ask any questions you need to.. :)

happygirl Collaborator
happygirl
Posted

Welcome to the board! And thanks for sharing...we have all come such a long road to where we are. We are just happy to at least have everyone here for support. I am so happy you have a supportive family---I do, as well, and it makes all the difference. :)

Again, welcome---and let us know what we can do. :P

SchnauzerMom Rookie
SchnauzerMom
Posted

Welcome! I'm new here too. My doctor told me I had IBS too. Going gluten free is the only thing that helped it.

tarnalberry Community Regular
tarnalberry
Posted

welcome to the group. I'm sorry it was so tough to get to your dx, but glad you finally know what it is!

mamaw Community Regular
mamaw
Posted

Welcome

It sounds like you already have a good handle on this. And it is so refreshing to hear that family members are understanding & also getting checked -out to see if they also have problems. The parents are so lucky that they found out early enough to make a positive change for their life.I wish I could get my family on the bandwagon!!! Four of us so far & I know there are several others but they will not even consider getting tested....

You know the old saying: you can lead a horse to water but you can't make him drink...............that's my family

blessings

mamaw

Gamecreature Rookie
Gamecreature
Posted

Oddly enough my story began much like yours with gallbladder surgery and a year's worth of scopes, medicines that didn't do anything, weight loss and fatigue. We tested my daughter for it, but it came back negative. Nevertheless, she seems to be responding well to the gluten-free diet so we may stick with it.

Fortunately my doctor suggested testing me for Celiac, or probably would have suggested it myself. Healing takes a long time, but it beats the alternative, doesn't it?

statedrone Newbie
statedrone
Posted
  • Author

I just wanted to say thank you everyone for your words of encouragement. As I stated earlier, I have learned so much. Everyday I call my sister with another tidbit about celiac I learned here. Thank you all.

Archived

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

Go to topic listing

  • 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. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,470
    • Most Online (within 30 mins)
      7,748
    Elkay008
    Newest Member
    Elkay008
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.