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Newly Diagnosed And Depressed About It All
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For the last several years I have delt with stomach pain, nausea, vomiting, and increased fatigue. I spent most of the time being told I was "fine", "stressed", or "trying to do to much without rest" by doctors. Recently I received a call on a Saturday from my doctor who re-evaluated my upper endoscopy and colonoscopy (spelling) results. When he did he noticed that part of my small intestine had errosions in it and that I was displaying all symptoms of Celiac Disease. He told me that he felt confident enough to say that he was 99% sure that I did have celiac disease but that a blood test would need to be done in order to 100% diagnose the celiac disease.

Immediately I looked up Celiac and found that I had all the symptoms minus seizures that were associate with celiac disease, including a itchy rash composed of small bumps all over my arms, legs, back, and stomach. My doctor initially thought that these were grass mite bites prescribed a steroid and prescription strength benedryl and sent me on my way. I have become overwelmed with what I can eat/can't eat, why am I so fatigued, pain in my stomach, the pain of the bumps, and the depression of what did I do to cause this. I have always considered myself a semi healthy eater. Other than brussell sprouts there is not a vegetable I don't eat, likewise with fruit. I prefered a salad over a cheeseburger and while I could probably exercise a little more I was never unactive by any means.

I guess what I am wanting to know is does this get easier? Will there be a time when I go to the grocery store and I am not constantly looking up every food on my phone and crying because it seems like nothing I used to buy is gluten free. I have eaten quite a bit of cottage cheese and fruit because I know that those items are safe. It just seems so overwhelming and I don't know what to do. Any help or words of wisdom would be greatly appreciated!

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Thank God your Dr. finally figured it out! And now you will get better!

Think fresh meat, chicken, fish, vegetables, nuts, seeds, and forget the packaged goods for best results. I did use dairy in the beginning and ignored the advice not to eat dairy. Later I regretted that decision...several months later I realized dairy was not OK for me. Most newly diagnosed cannot tolerate dairy because the tips of the villi produce the enzyme for digesting dairy and they have been eroded by Celiac often. You may be ok for a while with it...but later you may start reacting. For now...choose one salty treat and one sweet treat...gluten free of course...and otherwise stay only in the meat and produce sections...

Reading labels becomes a lifestyle.

Healing takes time.

Fresh meat and vegetables and fruit are best.

Packaged goods are not only expensive but they offer very little nutrition.

Having said that...I couldn't have lived without Snickers and Cheetos in the beginning. This was my salty and my sweet snack. The rest of the time I cooked whole foods.

So happy you found out! And I hope you heal really fast!

Oh, and Udi's bread is the only one I will eat...and only occasionally.

Take a deep breath! Lot's of recipes and helpful people here. Welcome to feeling better.

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Hi Ashley, and welcome to the forum!

Yes, omg the diet gets easier! Shopping gets easier.

Do use the seaarch engine on the forum (upper left) to learn about cross contamination (cc) if you haven't already.

As for grocery shopping, it will be difficult at first, but then you learn to go to just the aisles that have the stuff you need (whole foods, like meat and fish and vegetables).

Kettle brand salt and pepper potato chips are great if you feel like cruising down the snack section. If you can tolerate corn, most corn chips are gluten-free (including Fritos, last time I checked, but that's been awhile.)

Try to focus on what you can have vs. what you can't, and that you have a disease but it's a disease you can control with what you eat, which is pretty cool, vs. what most people have to contend with who have autoimmune diseases.

It takes awhile to feel better, but I think you'll be happy in the long run that it is "only" celiac disease.

When you're ready, it also pays to check out health and beauty products.

Good luck!

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Hi Ashley, and welcome to the forum!

Yes, omg the diet gets easier! Shopping gets easier.

Do use the seaarch engine on the forum (upper left) to learn about cross contamination (cc) if you haven't already.

As for grocery shopping, it will be difficult at first, but then you learn to go to just the aisles that have the stuff you need (whole foods, like meat and fish and vegetables).

Kettle brand salt and pepper potato chips are great if you feel like cruising down the snack section. If you can tolerate corn, most corn chips are gluten-free (including Fritos, last time I checked, but that's been awhile.)

Try to focus on what you can have vs. what you can't, and that you have a disease but it's a disease you can control with what you eat, which is pretty cool, vs. what most people have to contend with who have autoimmune diseases.

It takes awhile to feel better, but I think you'll be happy in the long run that it is "only" celiac disease.

When you're ready, it also pays to check out health and beauty products.

Good luck!

I agree. I was diagnosed 1yr, 2 months ago. I had a huge pity party for myself, but then realized that being handed the answer to a lifetime of pain and discomfort, was something to celebrate.

Instead of getting down on what you think you can't eat, get excited at what you can! Still all the fresh veggies and fruits, tasty unprocessed meats, eggs. You will get to discover new grains! Like Quinoa. You can still eat rice, potato, rice noodles/wraps. Anything fresh and wholesome is now your ticket for relief and fullness.

Try a tasty stirfry, with fresh garlic, ginger and some hot chile's. You don't need a sauce, and when you aren't feeling so overwhelmed, then go do some more grocery sleuthing.

Baby steps. Like grilled broccoli, with olive oil and sea salt as a side dish for a beautiful bbq'd steak and mashed potato's.

You can do this, focus on the small things, the staples, and everything else will come in time.

Also, depending on where you live, some natural food stores offer tours(free) and will highlight sections in the stores that will have what you need. Nature's Emporium is huge for that up here in Canada. Gluten free signs clearly marked in every aisle.

Keep it whole and fresh!

Good luck and know you are not alone. All of us were where you are right now.

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Congratulations on getting a diagnosis! Now you have some answers, and on a strict gluten free diet your health will improve.

I'm newly diagnosed too, and the grocery store really brings on feelings of overwhelm and great sadness. I'm sure with time we'll know what to get and can breeze through?

Stay to the outer parameter(other than the bakery) for healthy fruits and veggies, meats, and dairy(once you're allowed to have it).

Do take vitamin suppliments, fish oil, D3 that are gluten free.

I have been reading everything I can find on the topic, and if you have damage to the intestine, raw veggies are harder to digest at first. Eat them cooked or steamed until you heal. Dairy is diogested from an enzyme in the small intestine, so if you have damage you won't digest it. Hold off on it for now.

Try to focus on what you CAN have, rather than what you can't.

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So sorry it's been so hard! *hugs*

And yeah, it's hard in the beginning, because there is so much information that you don't know and it's something that you HAVE to deal with every day now. But really, it's like anything else new: starting a new job, having a baby, moving to a new city. You'll be bombarded with new information constantly, and it'll feel like you'll never figure it out. And then you'll remember some things, and then more, and figure out even more, and eventually, you'll have it all down pat, knowing what you can eat and can't, knowing what brands are good and what aren't, skimming through labels like it's nothing. It really does get easier, but ...yeah, it sucks for the first couple of weeks to months, usually.

BUT...there's one thing you get right now that you wouldn't get with everything else new: you'll be feeling BETTER at the same time. It is amazing how much easier all this new stuff is when suddenly, you're not nauseated and miserable and exhausted all the time.

I found out I had lots of other foods I couldn't eat, too (dairy, soy, potatoes, eggs...sugarcane and coffee. :huh: ) I dropped SO much food from my diet. If you'd told me it was going to happen ahead of time, I would have been crying like a baby. And instead, when I was eating crappier food (still trying to figure out how to cook without all those other ingredients at the time), and had less choices, and SHOULD have been depressed as all heck. That was the time I was feeling energized and upbeat and so awake and aware of the world for the first time in YEARS that even with all the foods I was missing, I was still feeling SO much better.

It's weird, but it works out like that for a lot of us. Hard to feel too bad about the diet when you start feeling so much BETTER. But you have to GET to that better part before it really hits.

I would second the idea of looking up how to avoid gluten cross contamination. I know of one gal recently who went gluten free but wasn't avoiding cross contamination, and she still couldn't get better until she did. Might as well start off strong, even if it's hard, and get better faster, yeah? :-)

Good luck! Hope that your recovery is smooth and fast!

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One other thing I wanted to add is that what you're going through is perfectly normal. I started crying the first couple of times I went to the grocery store. And probably the first times I went shopping, I left with less than 10 items because I felt so overwhelmed from reading labels and worrying.

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    • Hi Aly and welcome You may want to repost this in a new thread, that way more people will see it and can advise you.  I think you would be much better off getting the celiac test now, if you stay off gluten you will need to go back on it and that can be much harder. That said, loads of your symptoms look like they could be gluten related.  I had a persistent 'trapped nerve' for instance under my eye which would twitch like crazy. Since I went gluten-free doesn't happen any more.  Best of luck! Matt
    • Your scalp sounds like seborrheic dermatitis. I have that and although its better after going gluten-free its very persistent. The dermatologist recommended Nizoral shampoo for it and it does help. I think dairy has a big part to play with skin problems, for me at least. 
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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