New, Scared And Sick

[Ursa Major]

Are you being really harsh?? What are the probabilites of these things. I am just curious as some things on celiac is not known.

Actually, I am not being harsh. I just wanted to sort of shock you into understanding the reality of continuing to eat gluten. The probability of those things is very high, and in fact have happened to a great many people here who weren't diagnosed until later in life (including myself).

My mother, who without a doubt had undiagnosed celiac disease is a good example. She died of liver cancer at the age of 66, after being ill and feeling absolutely dreadful for most of her life. Her mother died of stomach cancer when my mother was 20. It is easy to see which side of the family the celiac disease came from!

On the other hand, you can totally avoid all those awful things by simply adhering to a gluten-free diet. Sometimes it is good to see what can happen to wake up and realize that it could be much worse!

[FlourShopGirl]

Amy's makes the dairy-free, gluten-free pizza and I didn't care for it. It wasn't horrible but wasn't great. She makes other products that are good.

It's all about finding out what you can eat. I think I am going dairy-free now because of the suggestions on here and I was just getting used to gluten. Gluten can be overwhelming but just like anything you get a hang for it.

Plus, a couple recipe books could be a God-send. I'm going to get a Gluten-free Casein-free one soon. :^)

[cmom]

I eat Amy's gluten-free pizza and add my own toppings: onion, peppers, pepperoni. Mix and match with whatever you like. It turns out pretty tasty!!!

[psipsina]

I eat Amy's gluten-free pizza and add my own toppings: onion, peppers, pepperoni. Mix and match with whatever you like. It turns out pretty tasty!!!

She also makes a Gluten-free Casein-free lasagna and ziti bowl that rock. . . both are vegetarian too I'm a medstudent so I totally understand the frustration of not having convienience food at my fingertips. All of my school friends live on nothing but pizza delivery in the last week before an exam and I have moments where I wish I could do that too. But if you learn some things that can be kept in your freezer like the amys and you cook up some extras every time you do cook for leftovers . .. it can be done. Its all about making it into habit and finding the new gluten-free foods that you enjoy so much that you don't feel deprived. Another fun idea is to make PB&J or egg sandwiches on the gluten free waffles (I use van's but there are a few different brands). Thats always super fast too. And I always make massive amounts of stir fry or fried rice (with my gluten-free soy sauce) and then eat off it for a few days lol. Tortillas and salsa is a great fast snack. These are some of my staples when I'm in cram mode.

[itchygirl]

I eat Amy's gluten-free pizza and add my own toppings: onion, peppers, pepperoni. Mix and match with whatever you like. It turns out pretty tasty!!!

Agree totally....The Amy's is not bad if you doctor it up some. If you live near whole foods you can try their pizza shells, I like them better if you put plenty of olive oil on them so they will crisp up a little, you can also put a lot of parmasian cheese on the bottom before you heat it and let that add a crispiness if they are too soft for you. Its a matter of experimenting.Now if somebody left me alone in a room with their a ton of Whole Food's almond scones I would come out weighing 400lbs and the room would be empty . I'm the same way with Pamela's peanut butter cookies. And I just got a case of them from Amazon, somebody pass the rice milk...

Kraft cheese and those Blue Diamond pecan crackers, now there is a snack!

Eating gluten free will save your life, and it can taste good. I feel like I've tried a lot of foods I never would've tried. Like avacado. Before I got diagnosed I never ate avacado, or coconut. Now I eat Jennies macaroons (healthy fat and fiber) every day for breakfast. They are better than pop tarts.

[ellen123]

Hello everyone,

First, thank you all for this great site. I've learned so much already, and every time I look for something, I find the answer. I'm also new to this, self-diagnosed and gluten-free for about a month. I've already experienced dramatic improvement in the one symptom that originally drove me to do the research (peripheral neuropathy for about a year) and, more amazingly, dramatic improvement in a second symptom that I never even expected to resolve: severe, chronic neck pain, that I've suffered from for over 20 years! After a week of gluten-free eating, my feet were feeling better, and I suddenly realized that for the first time in my memory, my neck felt almost 100% better! Amazing!

So here are my 2 questions: (1) is it really possible that I could have experienced such tremendous improvement in such a short period of time, or is this some figment of my imagination or reverse hypochondria? and (2) more important: unlike the other newbie on this forum, I have no problem whatsoever with giving up gluten -- It's a small price to pay for the relief I'm experiencing. (So New, Scared and Sick, I hope you're reading this.) My question concerns accidental ingestion of gluten, and whether it's to be expected that my symptoms come back fast and furious -- even worse than they were before. During this past month since I've been on a gluten-free diet, I accidentally ate some gluten (only learning afterward, through this site, what I did wrong), and the resurgence of my symptoms was as dramatic as my initial improvement -- at times even worse than it was before. For example, the first time I accidentally had gluten (Trader Joe's hummus, maybe?), my neck hurt so badly I couldn't turn my head for 2 days, and I got a rash of itchy spider-bite-like bumps -- something I have had on and off for the past year, but never connected to anything in particular. Last week it happened again (miso soup with tofu and/or green tea at a Japanese restaurant?). This time my neck was fine, but I broke out in the rash again, and now it's been 3 days and the rash is still here and covers more of my body than the last time. So new friends out there, is this how it's gonna be? Every time I eat something wrong by mistake, I'm going to have symptoms worse than they ever were before I started this? Are my symptoms likely to grow exponentially? Is this because I'm getting sensitized or de-sensitized or something?

Sorry to be so long-winded. I'm feeling both extremely hopeful, and also worried that maybe it's not just gluten that's playing games with me. Anyone have any words of wisdom? Thanks.

[fatcat11188]

Today I got my biopsy results. I have Celiac for real- no more chances of a different diagnoses with other testing (blood, looking through the endoscopy and the biopsies ALL prove it) He said not to have dairy, not even if i take lactaid. Then he says (I have a appointment on next Tuesday) that he wants to take more blood as the endoscopy shows that I may have Crohnes disease IN ADDITION TO CELIAC. I was like WHOAH- way to much information! I mean really. i think I really want to throw up now. He then continued to lecture me over the phone that I am a adult and that I need to start living a gluten free life- I had told him that I had gluten but not on purpose - solely on accident. I think he was very rude on the phone.

Has anyone been told they may have Crohnes disease too?? HELP Please- Im scared.

[mushroom]

[

<quote>

So here are my 2 questions: (1) is it really possible that I could have experienced such tremendous improvement in such a short period of time, or is this some figment of my imagination or reverse hypochondria? and (2) more important: unlike the other newbie on this forum, I have no problem whatsoever with giving up gluten -- It's a small price to pay for the relief I'm experiencing. (So New, Scared and Sick, I hope you're reading this.) My question concerns accidental ingestion of gluten, and whether it's to be expected that my symptoms come back fast and furious -- even worse than they were before. During this past month since I've been on a gluten-free diet, I accidentally ate some gluten (only learning afterward, through this site, what I did wrong), and the resurgence of my symptoms was as dramatic as my initial improvement -- at times even worse than it was before. For example, the first time I accidentally had gluten (Trader Joe's hummus, maybe?), my neck hurt so badly I couldn't turn my head for 2 days, and I got a rash of itchy spider-bite-like bumps -- something I have had on and off for the past year, but never connected to anything in particular. Last week it happened again (miso soup with tofu and/or green tea at a Japanese restaurant?). This time my neck was fine, but I broke out in the rash again, and now it's been 3 days and the rash is still here and covers more of my body than the last time. So new friends out there, is this how it's gonna be? Every time I eat something wrong by mistake, I'm going to have symptoms worse than they ever were before I started this? Are my symptoms likely to grow exponentially? Is this because I'm getting sensitized or de-sensitized or something?<quote>

The answers from my experience are yes, and yes. I experienced wonderful relief after the first month, only to have tumbled off a cliff again. I have had rashes and itchiness and hives from seemingly nowhere that I never had before, and am giving up more things. Once you get rid of the gluten other nasties say, well, I can cause you problems too, so what are you going to do about me. I have pretty much decided my other main problem is soy, and the problem with soy is that when food processors remove the gluten they dump in a bunch of soy instead. So out with my gluten free cookies, my fake ice cream, no more chocolate . My diet is starting to look more and more paleo, although there is a wonderful gluten free bakery in town that does not use soy at all. I bought 2 kilos of their flour mix (rice, tapioca and potato), and if I ever recover some of the energy I have lost, hello home-made chocolate brownies.

If I get accidentally glutened or soyed the reactions are far worse than anything I ever had while I was eating merrily away and giving myself psoriatic arthritis and who knows what else. I also have the stiff neck problems (better today after two days soy-free), had this humongous ugly rash on my face for three weeks, and for the last week total weakness and exhaustion. But I am sure it will all be worth it in the end once we work through it

Neroli

[dksart]

Yep, what she said.

My symptoms were 70% gone in the first few days, almost completely within a month.

Now, 2 1/2 years later, when I get glutened the symptoms hit me hard and fast. Some are worse than they ever were before, some are new. That lasts from 3-7 days or more if it hits my immune system and I get sick.

[fatcat11188]

Does anyone know about Crohnes disease in addition to celiac? And were you told by the doctor it was a possibility after when he called to give you the endoscopy results?

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