I Don't Want Celiacs Anymore

[justjess22]

I am very new to this site. I usually lurk for longer to get a feel for the place before I post, but I'm too upset right now to do that. I just need help and support, I guess, and I don't know what else to do.

 

I was diagnosed with celiacs (blood test only) when I was 16. My brother was an infant and very sick. He was diagnosed with a blood test as well, and transformed into a healthy baby. It was actually his pediatrician who suggested I be tested as well. I had gone to the doctor's appointment for him and I just looked so sick that the pediatrician strongly suggested I be checked. Later, my younger sister was also diagnosed with a blood test.

 

I went cold turkey gluten-free-- immediately. I followed it religiously for years and felt much better. Then, I studied abroad in college. I actually lived on a ship for four months, as in on the ocean, away from land for days or weeks at a time. When the ship did make port, it was in a foreign country from Ghana to Mauritius to Viet Nam. Food supply on the ship was limited and I don't have to tell you that gluten-free wasn't exactly easy to come by in some places I went. Long story short: I dropped the gluten-free diet.

 

I have never fully returned to it. For three years I have been half-assing it. I tell myself different things. "I'm not that sensitive. I was never fully diagnosed. I don't feel that bad. Avoiding it sometimes is enough."

 

I began seeing a new doctor recently and asked to be re-tested. Again, just a blood test confirms high levels of antibodies. My doctor handed me the diagnosis and sent me away within three minutes. Nothing was mentioned of an endoscopy.

 

But right now, I am so angry. My pity-party is in full swing (I am sobbing as I write this). I don't want this. I don't want to live worrying about every single thing that ever comes near my mouth. I don't want to never taste my favorite foods again (yeah of course there are gluten-free options, easier to find every day. But they aren't even close to being the same). I'm a broke college kid and can't afford much food to begin with (gluten-free replacements are expensive, and so is plain meat, and fresh produce).

 

I don't think I can do this.... I really don't. I can't handle this now on top of everything else. I don't know what to do.

[CajunChic]

I hear ya! I'm almost a year and a half gluten-free and am completely SICK of thinking about it, talking about it, and paying for it. However, when I think of the diseases I can get if I'm not diligent, it puts me in my "grateful to have an answer" mood. We're talking diabetes, thyroid disease, arthritis, CANCER to name a few! Imagine celiac and other diseases to deal with, as many celiacs do deal with others.

I'd certainly rather deal with a diet before activating more diseases. Maybe ask your parents for help with making meals to take with you since you have celiac siblings. Look for a support group in your area. My favorite coping method: prayer! I believe God gives us all different issues to deal with to make us better people. I know it's my Christian view, but it's what gets me through.

You can do this. Think of your health 5, 10, 20 years down the road. It gets better.

[Waitingindreams]

Hi there, and welcome to the forum. You definitely came to the right place - there are tons of people on here that are willing to help you ease into this transition. It does get easier with time. Check out the Newbie 101 forum.

 

We all know how you feel. Although I feel so much better since going gluten free, in my case - going gluten free wasn't enough. Now I have to avoid all grains and other foods that I am sensitive to, like soy. Before being diagnosed, I was getting progressively worse. I didn't look or feel like myself. I developed embarrassing skin issues (rosacea, seb. dermatitis) I gained about 60 pounds in 2 months,(and went up about 4 pant sizes) and suddenly I couldn't stay awake. On top of that, I was having dizzy spells and I never really felt fully *there*. 

 

Now, I am doing and feeling much better. My skin is clearing up, my energy levels are improving. My hair looks and feels healthier. I've learned so much about food and how to take care of my body that I don't even miss eating the way I used to. The only thing that was so great about it was the ease and convenience. 

 

I never used to cook, but now I am getting creative and trying out a bunch of recipes. It is completely overwhelming and I am still overwhelmed, but then I remember how far I've come and how sick I used to be. I am happy I actually pay attention to what is going in my mouth - we absolutely should! They put a lot of unnecessary crap in our food. 

 

As for eating gluten free being expensive, it's really not! I buy bagged lettuce (a lot of times S&S does a buy 1 get 1 deal) you can grab some cucumbers or other vegetables you like. They have tons of gluten free salad dressings, or you can just use olive and vinegar. I add a can of black beans for protein (throw them in a bowl and microwave them - good with salad, or on rice) You can find gluten free chips (a lot of tostitos chips are gluten free - Fritos are, for example. And as far as junk food goes, Fritos aren't terrible - they only have 3 ingredients) and salsa for quick snacks. Grab peanut butter and some gluten free crackers (or apples)

 

Produce really isn't expensive. Of course it depends on the store, but I can usually grab 3 cucumbers for under a dollar. You can definitely do this. You have to do this - we have to do this. We are all in the same boat. 

 

I miss feeling more 'normal' (being able to eat whatever I want, etc) but at the same time - I didn't even feel normal then becasue I always had "stomach issues" that eventually developed into more. I'd rather be healthy eating my zucchini pasta than sick eating pizza. Btw though, some gluten free pizzas really are fantastic. Same with gluten free mozzarella sticks..and I've tried a gluten free calzone that is amazing.

 

Another quick gluten-free meal (I make these for my bf and he's not gluten-free - he loves them) is to make "grilled cheese pizza" using gluten free bread. gluten-free bread is a little pricier, but if you freeze it you can make it last for a long time and it's definitely worth the cost. Just mix gluten free sauce (Barilla and Prego both have gluten-free sauce) with shredded cheese, and butter the bread as normal. I couldn't eat it because I am currently on the world's strictest diet, but I can't wait to try it. 

 

^And I agree with the post above me. It definitely does get better. I have come so far this past year. Looking forward to making more progress.

[mamaw]

hello & welcome

celiac   is  a  hard  disease  to swallow for many. but  it is  what  it is  so  at  some  point  you  will have to bite  the bullet  &  go back to being  gluten-free 100% of the  time  24/7   for  life...   celiac  is  not  just  a  diet  it  truly is a lifestyle change.. ANd  NO ONE  Wants  to  have  it...You did  it  before  & you  can  do it  again.....it  is  much  easier  now  to live  a  healthy happy gluten-free  life with  many  restaurants, & gluten-free  food  available....you  actually did it  when it  was  much harder  to  find  gluten-free  so  you  must  train your  brain to do it  again... the  brain  plays  tricks on  our  thinking  so  get  out  of your  head......

Waitingdreams  is  a perfect  example  of  how  one  can  make  changes  in  their  life...she  came  in  at  the  bottom of the  pit (so to  speak) &  has  listened  & learned by trial & error  until  she got  it. Her  rewards of  hard work & challenges have  paid  off  & now  she to  sees  light  at the  end  of a LONG road....she   is  willing  to give it all she  got  & then some....

It is  natural to feel  sad ,& blue   but  once  you  get  rid  of that  baggage  &  get a game plan in place  you to  will be  able  to defeat  a  big dragon in your  life.. You  will get  great satisfaction  in knowing  how  strong  you really are  & how  happy & healthy  you will  be....

Don't  fight  it  until  another  autoimmune  creeps  in on you  or  even  worse  a  cancer......

This is  one  of the  easiest  diseases  to  control without  chemo,  deadly drugs, or  being  connected to some  machine  for  hours/days....we  just  need  to  be special & eat  special food... can't  get  much  easier...you make the  choice  which  disease  you would  choose!

You CAN  do  this  &   you now  have a  team  of  celiac who  are  onboard  with you to  give  you any help  you  need.. Just  ask

 

hugs

[SMRI]

Well, you can choose to not go gluten-free and just feel cruddy for the rest of your life?  Yes, I miss things, donuts, I really want a good donuts, but I don't want to spend 2 days in the bathroom just to have that donuts either.  There is a adjustment period and you just have to go through a second one.  Eating gluten-free at home is not difficult, there are plenty of options that are just regular, every day foods.  Eating out, yes, that is an issue and even at places that are good for Celiac's, you take a risk.  I am just getting over a bad glutening from a restaurant I've been to several time that was always good in the past, now I won't go there again.  I guess if I had to pick, I'd rather have Celiac than Diabetes.

[nvsmom]

(hugs)

Yeah. It is not fair.  We just have to go with the hand we are dealt and make the best of it because it isn't going to change. Try to remind yourself that it could be worse - much worse. Celiac isn't great but it is doable. 

 

Stock up on some cheap gluten-free treats (chips, cookies, whatever) and when you cook, make extras and freeze it so you have food on hand.  Same goes for baking.  Make it easier on yourself by planning ahead as much as possible.  It is a pain, but health is worth it.

 

Go gluten-free. Now. Give away the gluten.  Treat yourself right.  (hugs)

[C-Girl]

Justjess22: you lived on a boat and sailed the world! You're adventurous! Embrace this as another challenge. You can do it, you've already proven it. Just think about how your little brother was transformed from sickly to healthy, and keep that image in your mind. It's very important that you heal now and stay gluten free, because the older you get, the longer it will take you to heal.

You are strong enough to do this. You can do this.

[beth01]

I'm in my late thirties and wish I could go back to my early twenties and find out I had Celiac. Yes it's hard, but so is being sick too often. I would give anything to have the time back I've missed with my kids the last year due to feeling like total s$#&, and this is gluten free after years of not. Yes it sucks, but it is better than the alternative. Have your pity party but then throw on the big person panties and get your diet in check. You'll thank yourself later, trust me.

[Azenka]

The worst glutening symptom for me is depression. It's a b%$@# because of course, when it happens, I want to not care about my diet too. And it takes a while for me to feel better afterwards too. And because mood is so subjective anyways, I don't even know necessarily if I've been glutened or I just feel like crap for other things. It's hard because it sabotages me into eating things that I know I will react in some way shape or form to (even if it's all supposedly gluten free), which of course just makes it all worse...these cycles.

 

Don't fool yourself by thinking you don't have it just because you haven't had an endoscopy; ultimately it's an auto-immune disease, and intestinal damage is just 1 facet of it. Skin issues, nerve issues, intestinal issues...The very fact that you have antibodies in your bloodstream should be raising alarm bells in your head. Auto-immune antibodies-your body is damaging itself.

 

It's not a struggle if it just IS. I can only follow this diet because it just IS. That's why things like dairy, and chocolate, and processed meats, mango, and all these other foods I know I shouldn't have, I fail and sometimes indulge in. Because to me those're foods where 'Well, this is the reaction I get to it, is it worth it?' 

But not if it's gluten. I can easily avoid things that have gluten because I know that whatever damage happens to me, I'm damaging myself in serious ways that, to me, are subversive.

 

It's a mindset, being gluten free. If I had to struggle everyday and overcome urges to eat gluten everyday, I could not do it. But I don't think of it that way. For instance, when I moved in with my current partner, me telling him our kitchen MUST be gluten free, he, in the throes of newfound love, did it no questions. He also wanted to be 100% gluten free himself so we wouldn't have to worry about hands and kisses etc, which meant being as gluten free and as careful as I am. He'd come home and tell me about times when he considered getting something to eat on the way home that had gluten, and then he'd be proud of himself for resisting the urge. Which is great and all, but I bluntly told him that if I had that attitude towards it, I would fail sometimes. It cannot be a struggle for me. It must be an acceptance. I do not pass by restaurants and consider eating at them. I do not imagine it. I do not allow myself to float the idea of eating foods I should not have. This, I firmly believe, is the difference between me successfully living versus being disabled. 

 

If you do not go all or nothing, you are floating the idea of it, allowing yourself to listen to cravings, and if, as it is with me, gluten affects you mentally, you are completely sabotaging your will by occasionally indulging. It's not an indulgence, you're poisoning yourself.