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

Having A Hard Time..

Lalasarah2727

Recommended Posts

Lalasarah2727 Newbie
Lalasarah2727
Posted

I'm having a really rough day today and my new found diagnoses of Celiac Disease has not been an easy one to cope with alone.. I just kinda need someone to talk to, maybe some advice if anyone else has felt this way at first? Anything will help.. Thanks!

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

We've all been there.

 

Its one of the good things about this forum. :)

flowerqueen Community Regular
flowerqueen
Posted

Hi! Yes I know what you mean. It's a lot to get your head around at first isn't it. Also it can make you feel isolated unless you know where to look. Is there anything in particular you need help with? There is also a chat room on here too - although I've not used it as most of the people I talk to on here are in another time zone (I'm in the UK).

I try to visit this forum often, so if there's anything I can help with, let me know. There are a lot if really nice people on here all helping one another out, so there's always someone around to offer advice. :-)

bartfull Rising Star
bartfull
Posted

Have you read the Newbie 101 thread? That'll help with the nuts and bolts part of this. For the emotional side, you just have to allow yourself the time and space to grieve. You will no doubt feel like throwing your hands in the air, you will no doubt cry, you will most likely have a few meltdowns in the grocery stores.

 

And then it will get better. First of all, you will start feeling better which will make it easier to cope, plus you will become a pro at reading labels EVERY TIME, so you will be less likely to get hit. And you will learn how to cook gluten-free meals that taste every bit as good as the gluteny foods you used to eat.

 

Then you will decide to venture out into the world of restaurants. That will present a slew of new problems. For now, I suggest you avoid restaurants altoghether. Explain to your friends and family that you need to only eat things that you have prepared for yourself, and hope they accept that gracefully. If you're lucky, you might find a restaurant or two in your area that can be trusted, and your family and friends will meet you at those places. And they WON'T mind if you bring your own food to their houses when it's time for socializing.

 

But for now, just concentrate on getting the diet right, and don't feel guilty for the emotional upset you are feeling right now. We have all been through it, and it DOES get better. :)

Juanitahoy Rookie
Juanitahoy
Posted

I have been gluten-free for around 18 months, and it is now to the point where I don't think about it 100% of the time anymore. I have gotten in a decent routine, and am pretty comfortable with it.

That being said, I was glutened today with an amount larger than ever before and got scared and felt really alone. It was awful.

I had gotten away from the site, and this made me realize how much we need each other in this community. Also, I found two gluten-free women in my local whole foods market who put me on the right path.

It's not always easy, but I promise you, it's worth it. Hang in there!

notme Experienced
notme
Posted

one day at a time.  try to concentrate on the positive side - (i always tell my kids:  if it's a BIG wall, poke holes in it first to make it easier to knock down.  plus you can see to the other side)  

 

this is a great place to vent and ask questions  :)  welcome to the club you never wanted to join lolz

Ciel121 Apprentice
Ciel121
Posted

  The emotional side can be difficult. I know many Celiacs and those gluten-sensitive tend to have depression and anxiety connected to gluten as well. I have been gluten-free for 4 years and was doing so well, but recently I have struggled as well. Someome mentioned meltdowns at grocery stores...ha ha. I definitely think it's important to take one day at a time. My advice is be extra careful and don't get glutenized because that is just so upsetting. I have a list of companies that I have called and verified that their products are gluten-free and not contaminated. I also think there are these amazing little victories like finding a great new gluten-free bakery. I recently found a coffee substitute because I have not had coffee for 10 years. Now I'm so thrilled, everyone thinks I'm strange because I'm so happy over one little thing like having a gluten-free coffee substitute, but to me I know it's a little victory that matters so much.

   I recently found a support group in my area and that really, really helps when others are going throught the same thing and know what you're talking about. It gets better the more you learn and once you make gluten-free habits. I'm still learning too. 

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

Celiac.com Sponsor (A8-M):


notme Experienced
notme
Posted

Now I'm so thrilled, everyone thinks I'm strange because I'm so happy over one little thing like having a gluten-free coffee substitute, but to me I know it's a little victory that matters so much.

 

right - people must think i'm nutty when i'm dancing around in the store because i found gluten-free egg noodles hahaha! :D

Lalasarah2727 Newbie
Lalasarah2727
Posted
  • Author

Thanks everyone! I'm also 7 months pregnant and that doesn't help either. I'm just tired and hungry and tired of being hungry lol! It's tough being on an extremely tight budget with all this too. Does anyone know of any programs that help?

kareng Grand Master
kareng
Posted

Do you qualify for WIC? That would help you get healthy foods.

This is kind of fun:

Open Original Shared Link

bololgreen Newbie
bololgreen
Posted

I, too, am newly diagnosed (4 weeks ago).  I am so glad to read the posts - I feel 'normal.'  I have been a little down lately because my entire world is about food these days.  Reading your posts help - glad to have found this forum.

Lalasarah2727 Newbie
Lalasarah2727
Posted
  • Author

I also appreciate all the input on this page. It is such a relief to be able to talk to others going through the same things!

nvsmom Community Regular
nvsmom
Posted

Those first few weeks are really tough. I went through a withdrawal of sorts and felt extremely tired, headachey and cranky for about 2 weeks. After that first month milestone, it starts getting easier.  Hang in there, and come to vent any time.  :)

GottaSki Mentor
GottaSki
Posted

Welcome! Yes...I well remember those first weeks and months - you have had excellent advice from everyone - do make sure you take advantage of the UoChicago Care Pack that KarenG posted.

Hang in there - it definately gets better :)

Nikki2777 Community Regular
Nikki2777
Posted

People told me there's a mourning period for the old you, and all she could eat, and they were right.  I'm about 7 weeks in now, and I'm mostly adjusted.  I've found plenty I can eat and while I miss some of my old things, I've found others I might never have discovered had I not gone Gluten Free.  It is tough on a budget though, I'd recommend not trying to replace all your old foods (those 'fake' baked goods are expensive), but try and stick with whole foods -- fruits, vegetables, etc.  Good luck!  Once you start to feel better, it will be worth it.

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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless...
    2. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      32

      My journey is it gluten or fiber?

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system?
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      High TTG-IgG and Normal TTG-IgA

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note:...
    5. Scott Adams
      0

      Homemade Gluten-Free Egg Drop Soup

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,842
    • Most Online (within 30 mins)
      7,748
    aetherwax
    Newest Member
    aetherwax
    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

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I made it through the holiday w/o being glutened. I had my brother cook with gluten-free breadcrumbs and I didn't get sick. I baked cookies with gluten-free flour and had dry ingredients for cookies in ziplock bag. I also made gluten cookies as well and guess I did good washing to avoid CC. My wife also went to a french bakery and bought a gluten-free flourless chocolate cake dedicated gluten-free it was out of this world. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What do you mean it would not allow any celiac to eat gluten again. I think if this helps cross contamination when eating out at a non dedicated gluten-free restaurant this would be nice not to encounter the pains. But is their a daily enzyme to take to help strengthen the digestive system? 
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
    • GlorietaKaro
      Am I nuts?

      By GlorietaKaro · Posted

      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
×
×
  • 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.