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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.