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How do you feel normal?

Babybop

By Babybop
in Coping with Celiac Disease

Recommended Posts

Babybop Newbie
Babybop
Posted

Hi everyone, new Celiac here.

I was officially diagnosed almost a month ago when my biopsy results came back positive. Funny story, my mom took it harder than me. In fact, she actually yelled at the poor PA saying, "You mean my daughter can't eat a slice of regular cake for the rest of her life?!" Anyone else I tell I get the sympathy head tilt, and the "I'm so sorry".

Part of me feels like saying, "Don't have sympathy for me, I'm not dying!" but at the same time, I realize that it is a big deal. This is the rest of my life. Even typing this, I'm home in bed because I must have eaten something bad yesterday and my stomach will not shut up (it churns ridiculously loudly when I've been glutened) and I feel like a ball of acid is in my throat.

I'm lucky because my coworkers are so understanding and sweet, and I have a great support system, it's just... I don't know. I don't feel like I can be normal anymore. I don't even know what I ate yesterday that made me sick today! I've seen a lot of people on this board say they go dairy free to help with nausea, and I probably should go dairy free because of that. Just the thought of being gluten-free and dairy-free freaks me out because what will I eat, ever?

I'm 22, and it feels like all people my age want to do is go out to eat, go drink, etc. and everything is built around eating junk. Now, I'm already a picky eater to begin with (my OCD really comes out when it comes to food - if something is the wrong temperature, my brain will not let me eat it, even if it tastes good, I'll gag) and now I'm literally scared to eat a lot of times because I don't want to go back to how debilitatingly nauseous I was before going gluten-free. I'm going to New York with my family soon, and I'm anxious because all we'll eat is restaurant food and I don't want to get sick on vacation!

I don't have anyone close to me who has Celiac (well... that we know of) and I figured I should finally reach out for support from people who actually understand what I'm going through. So here's my question: How do you feel normal in this "foodie" world when you feel like you can't eat anything?

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gilligan Enthusiast
gilligan
Posted

You may get better advice from others, but you know what?  It's only celiac, and it's only food.  It calls for some changes in your lifestyle, but it's only food!  It's far, far better than cancer, heart disease, ms, Parkinson's, diabetes, cerebral palsy, and the list goes on.  It's only a lifestyle change, and it's only food.  It took me a good long while to feel healthy again, and quite often, I didn't think it would happen, but it did and I feel great!  There were some problems along the way, but they subsided, and now celiac is second nature.  With a positive attitude, you'll get through this.  If you have the resources to make an appointment with a dietician, I encourage you to do so.  I trained with one for about 4 or 5 sessions.  Once I began healing inside (a 2 yr. process), I gained back the badly needed 20 lbs. I lost and the foods that I couldn't tolerate - sugars, caffeine, dairy, raw fruits and veggies.  I can eat anything but gluten now.  Gluten free is a piece of cake compared to what I had to give up for awhile. Always carry something with you to eat, such as a piece of fruit, crackers, breakfast bar), and you can eat out with your friends anytime you like.  It's the friendships and experiences that are important, not the food.  It's only food!  It's boring, but stick to a very simple diet until you feel better.  This may take some time.  My only other advice is to be wary of bloggers on Facebook.  There is so much misinformation on these that it will make your head spin.  Stick with what the dietician teaches you, what you learn on here (even when something might be incorrect, there's seasoned people on here that will set it straight), and find a couple good books.  Ask your dr or dietician for some recommendations. The book written by Jules Sheppard started me on the right track - lots of good information for a beginner without all the crap advice.  And, yes, you will be able to eat cake again.  In the past month, I've made a fabulous gluten-free clementine chocolate cake, cinnamon roll cupcakes, and an angel food cake.  

Gemini Experienced
Gemini
Posted

Babybop.........how you mentally face the gluten free diet is key to recovery and attitude.  I promise you, you will feel totally normal once you master the diet and feel comfortable with the change.  It really is not hard at all....just inconvenient at times.  You can travel without fear but it will take more planning for you to eat safely.  You may also be surprised to learn that the OCD you mention suffering from can be related to Celiac and with time, it may completely go away.  Really!

First off, your mother and you need to read the Newbie 101 thread to start.  Essential for the newly diagnosed and those who live with you.  For books to read on learning to live as a Celiac.......

Open Original Shared Link  This is written by a dietician who also has Celiac herself.  There will be a learning curve but you seem very smart so should have no problem.  If you have any questions, we are here to help.

As for that trip to NY, are you going to NYC?  If so, you are in luck. NYC is one of the very best places to find safe, delicious gluten free food. Here is a good website to help you find safe food wherever you go......

Open Original Shared Link  I can also offer more restaurants for NYC if that is where you are going.

Hang in there!  You will be fine in the long run and learn how to manage the social aspect of things, such as going out with your friends.  You may want to look into a support group in your area to help with the adjustment and to share your recovery to make it easier.  :)

GFinDC Veteran
GFinDC
Posted

Hi BabyBop,

Going gluten-free may seem a little  overwhelming at first.  But in time that will pass as you learn and adapt.  It is easy to make mistakes on the gluten-free diet at first.  So it does help to start by avoiding restaurants and instead mostly eating food you cook yourself.  Carrying nuts, fruits, and snacks around is a good idea, especially on a trip.

Many restaurants have a gluten-free menu these days, although you may have to ask for it.  Some gluten-free beers are available, and ciders.  Wines are generally ok too.

It might be easier to skip dairy for a while.  Celiac damages the ability to produce lactase enzyme in the gut.  After you are gluten-free awhile that may go away.   Lactaid pills may help.

Recovery and normal bowel function can take months.  Avoiding cross-contamination is worthwhile as the immune reaction takes some weeks to months to taper off after exposure.

gluten-free is a great diet for your health though.  You will probably eat much better quality food than most people your age.

Welcome to the forum! :)

  • 1 month later...
Babybop Newbie
Babybop
Posted
  • Author

Thank you for your responses :)

I go through periods of feeling absolutely overwhelmed by all of this to thinking it's totally normal to me. I'm only 2 and a half months in (it feels SO MUCH LONGER though) so I'm sure by the end of this year I'll stop having my little freak outs.

Gilligan, thanks for the tip - I'll definitely beware of FB and other bloggers. I've been sticking to books (and this board) to get the info...

Thanks for the Find Me Gluten Free link, Gemini. That saved us in New York. The app was able to find us and just tell us where gluten free food was. I actually had some amazing gluten free food there! The only time I got glutened was at the airport coming home - and that was my fault for just grabbing food without thinking about it.

And thanks for the welcome and the support GFinDC.

These boards have really helped me out - I don't know what I would have done these past couple months without them.

 

Gemini Experienced
Gemini
Posted

Oh...........NYC is awash with fantastic gluten-free places to eat so I would recommend any Celiac going there without fear.  I am glad you had a good time!  Hang in there, baby!  You'll be fine and adjust like the rest of us did. Until then, feel free to have a little freak out now and again.  Get that frustration out!  ;)

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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