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

Consistent Or Progressively Worse....


jajus100

Recommended Posts

jajus100 Apprentice

I was just wondering, before you were diagnosed, did you just continually get sicker. Or... did you have some days when you thought you were actually getting better, only for the stomach problems to come back?


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



Celiac.com Sponsor (A8-M):



ianm Apprentice

I got progressively worse before I knew what the problem was. Fatigue and crippling brain fog were the main problem. I didn't have to many gut problems.

jerseyangel Proficient

I always had a "sensitive stomach" for as far back as I remember but never sought medical treatment. In the spring of '04 (after surgery for gyno. problem) I began to have urgent, frequent D, Severe brain fog and anxiety, tingling in my face, a strange feeling in my forearms and pain in my hands. I also would sometimes wake up with swolen,red joints in my thumb. I was also dizzy and very exhausted all the time with trouble sleeping. As time went on, everything I ate went right through me. Also present were stomach pain, mouth ulcers, and eczema on my eyelid. All of these symptoms were progressive and persistant. I sought help from my GP who refered me to the Gastro. who DX me with celiac disease this past June. I'm 4+ mos. on gluten-free and dairy free and am still taking it one day at a time. I've gotten so much great advice on these boards. (From the Dr. I got an outdated list of gluten-free foods and an appt. in 6 mos.!!) I really don't think I'd have come as far as I have if I haden't found this site.

MySuicidalTurtle Enthusiast

I knew more things made me sicker than ever before and I just figured that everyone had the same problems I did and just thought that was life. After starting the diet I was shocked at how "normal" people weren't sick everyday.

Rachel--24 Collaborator

Before the diet I was progressively getting worse. The only time I'd start to get better was if I was too sick to get out of bed and eat. If I didnt eat I'd start to feel better and of course as soon as I felt good I'd eat and be sick again. Back then EVERYTHING I ate had gluten in it. I lived off gluten which is probably why the first week of the diet I went through major withdrawl. I didnt know it was withdrawl at the time...but after reading about it in "Dangerous Grains" I know its what I went through.

Guest Kalynn
I was just wondering, before you were diagnosed, did you just continually get sicker.  Or...  did you have some days when you thought you were actually getting better, only for the stomach problems to come back?

<{POST_SNAPBACK}>

I am pre-diagnosis as well, and I'm glad you asked that question. I am currently waiting for my tests to come back. For the past four months, it seems like I have good days and bad ones. At one point, when I was feeling much better, really starting to eat well again and had gained a few pounds back, it all hit me again and I lost even more weight.

I am going gluten-free regardless of what the tests show. Up to now no doc has been able to pinpoint what ails me, so I want to know if a gluten-free diet will help. Until then, I am just thankful for the "good" days. :rolleyes:

Carriefaith Enthusiast
I was just wondering, before you were diagnosed, did you just continually get sicker. Or... did you have some days when you thought you were actually getting better, only for the stomach problems to come back?
For me, the first 4-5 months on the diet were quite rough (similar to how I was before going gluten-free) and then I slowly started having some good days and some bad days. I finally started having mostly good days about 12 months into the diet.

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



Celiac.com Sponsor (A8-M):



frenchiemama Collaborator

I've always had a "sensitive" stomach, and I was very depressed as a child/adolescent.

My first really obvious symptoms started when I was about 17 or 18 (around 10 years ago), I started to have very severe stomach pains, indegestion, heartburn, nausea and difficulty eating. That kind of came and went over the past decade.

I also had very bad headaches which were pretty much constant since I was a kid.

Then 2 years ago in May of '03 I started getting DH.

In the 2 months or so right before diagnosis everything that had been fairly constant for several years started going downhill fast.

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. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

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

    • Total Members
      133,318
    • Most Online (within 30 mins)
      7,748

    direne
    Newest Member
    direne
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.