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

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

We've all been there.

 

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

flowerqueen Community Regular

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

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

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

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

  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

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

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

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

This is kind of fun:

Open Original Shared Link

bololgreen Newbie

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

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.