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Already Had Cancer


pat e

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pat e Rookie

:unsure:

This ia a nightmare diet to follow. I already had thyroid cancer, is my risk even greater for gastrointestinal cancer? I feel you can only live in a bubble to follow this diet. I might as well write my obiturary now, as I feel its impossible to follow a completely gluten free diet.


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tarnalberry Community Regular

Not following the gluten free diet if you have celiac disease does increase your risk for intestinal cancers, nutritional deficiencies, neurologic complications, other autoimmune conditions, and other systemic complications.

The diet can be quite complicated in this world, but once you get past the learning curve, you'll find that it's far from impossible to be gluten-free. The options in eating out or eating processed foods are more limited, but you're only eliminating four of the myriad of naturally gluten free whole foods.

Keep reading the board, and talk about the areas that you're having the most trouble with - this board is full of helpful people who can help you make the diet far, far from impossible.

MySuicidalTurtle Enthusiast

This diet isn't that hard to follow. The only thing you have to do is pre-plan more and shop at some different stores. Honestly, if you give it a shot you'll find it not that bad and not at all like living in a bubble- I know I am not in one.

Viola 1 Rookie
:unsure:

This ia a nightmare diet to follow. I already had thyroid cancer, is my risk even greater for gastrointestinal cancer? I feel you can only live in a bubble to follow this diet. I might as well write my obiturary now, as I feel its impossible to follow a completely gluten free diet.

Hi Pat e;

Welcome to the board. I'm so sorry you've had to go through something like that. I do hope that you have completely recovered.

The diet is certainly confusing and at times depressing when you first start. I think because in the early days we continually say "I can't have that". But as you learn more, things get to be more normal.

If you think about it, a lot of foods like beef stew, chilli, roast chicken, steak etc. is naturally gluten free if you make it at home. You just use corn starch, or potato flour instead of wheat flour for the gravies. A lot of salad dressings are gluten free, etc. You'll find a great deal of stuff in this forum to help you out.

If you keep your diet as strict as possible your chances of gastrointestinal cancer goes down and you can feel a lot healthier.

Ann1231 Enthusiast

I LIKE eating this way! I eat a lot of fruits, vegetables, meats, and even some dark chocolate now and then :) Once I got past my stubbornness of not having "treats" (dinner rolls, occasional cake, etc.), I found that I felt better than I have in many, many years. It's not that hard at all if you stay away from processed foods and eat foods the way nature intended!

blueeyedmanda Community Regular

Hello,

I hope you have done well in your road to recovery as far as the cancer was concerned. I know this whole diet seems overwhelming, it does get better. Once you get into a routine of it everything seems to fall in place. I don't live in bubble and I refuse to. :) Life is too short. I just watch what I am eating and I live my life. I had to give up some of my favorite foods, but I found new favorites. I also found a better way to eat, and I think it has made me feel better all around.

Don't let the diet get you down, it is worth it in the long run. You have found a great place to ask questions, share you concerns, and most importantly vent your frustrations, because we know we have all been there. We care :) So welcome!! Good Luck and if you need anything feel free to ask. Someone will have an answer.

Viola 1 Rookie
I LIKE eating this way! I eat a lot of fruits, vegetables, meats, and even some dark chocolate now and then :) Once I got past my stubbornness of not having "treats" (dinner rolls, occasional cake, etc.), I found that I felt better than I have in many, many years. It's not that hard at all if you stay away from processed foods and eat foods the way nature intended!

But if you are into "treats" there are lots of those around too that are gluten free :P I for one hardly ever pass up a good gluten free ice cream, cakes, chocolate, etc. :lol:


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Ann1231 Enthusiast
But if you are into "treats" there are lots of those around too that are gluten free :P I for one hardly ever pass up a good gluten free ice cream, cakes, chocolate, etc. :lol:

true, true. I haven't acquired a taste for those gluten free treats though. I know a lot of people love 'em! I have to drive about 70 miles to buy them so for me, they're not worth it (my waistline appreciates that too ;))

Carriefaith Enthusiast

I'm really sorry that you had to go throught that :( I have read that people with celiac disease have a 40% increased risk of cancer if they don't follow a 100% gluten-free diet. When following the diet; however, you may be decreasing your chances of cancer, especially if you are increasing your intake of vegetables and fruits.

Yes, the diet seems overwhelming at first, but with time, everything becomes easier. There are many mainstream foods that are safe and eating out is also possible. Here is a link to some recipes: Open Original Shared Link

Viola 1 Rookie

Does anyone know how to direct her to nini newbie kit? That might be really helpful.

debmidge Rising Star
:unsure:

This ia a nightmare diet to follow. I already had thyroid cancer, is my risk even greater for gastrointestinal cancer? I feel you can only live in a bubble to follow this diet. I might as well write my obiturary now, as I feel its impossible to follow a completely gluten free diet.

Yes, quite feels that way...do you have a work situation or some other logisitical situation wherein you are unable to acquire gluten-free foods during work? Do you travel a lot for your job? Do you have other food sensitivities which make being gluten-free harder?

let us know your details and perhaps there's someone on the board who has a solution for you.

Ursa Major Collaborator

Hi Pat, and welcome to this board. Actually, the gluten-free diet might look daunting at the beginning, but it really isn't that hard. I wished it was only gluten I need to eliminate! But for me it is all grains (including rice and corn), all legumes (including soy and peanuts), eggs, all dairy, all nightshades (potatoes, tomatoes, peppers and eggplant), and all foods and other things high in salicylates (almost all herbs, honey, all fruits except peeled pears, most vegetables, all herbal supplements, all personal care products made from natural ingredients, all spices except for sea salt, all oils except for cold-pressed sunflower oil, and I am probably forgetting some things). And you know, it is doable, and I don't feel like my life is over because of all of this.

Just take a deep breath and resolve to stay gluten-free for today. And tomorrow you do the same thing. One day at a time is usually all I can manage or things get too overwhelming.

And yes, Nini's newbie survival kit would help you. Here is the link to Nini's website Open Original Shared Link

Just scroll down to the very bottom, and you'll find the links. That information will help you a great deal in the beginning.

rez Apprentice

I agree w/ Ursa. Be thankful if you only need to elimate gluten. There are sooooooo many yummy gluten free foods. I think you'd be surprised at all the chocolate and candy bars that are gluten free. Chocolate covered raisins and nuts, yogurt, chips, salsa, tacos, chili, and TONS more. HAve a positive attitude and get a good book on the gluten-free diet. IT's all what you make of it. Having a M&M blizzard from Dairy Queen is pretty rough though. :):) Yes, that's gluten free, unless you have a lactose intolerance as a secondary condition like my 8 year old son. He would love to eat ice cream!!!!!!!!!!! Look at the glass as half full, not half empty. Lastly, find a local support group. They will be a lot of help and very understanding. Good luck.

pat e Rookie

;)

Thank you for all your comments and concerns. It made me feel some better.

My question is:

How can I possibly avoid cross-contamination especially if you go out to eat

The other day, I went to Denny's for breakfast with my son who will be going away to college in September.These times are very important to me .

I ordered eggs, and hash browns. I brought gluten free waffles with me and the waitress toasted it for me. Aside from only going to a restaurant that served gluten free food and has equipment reserved for these foods what else can I do? I feel you cannot possibly be gluten free completely.

Another question: has any one developed the diseases associated with celiac disease as intestinal cancers, neuropathy, other diseases etc. This is terriflying to me.

thanks

Viola 1 Rookie
;)

Thank you for all your comments and concerns. It made me feel some better.

My question is:

How can I possibly avoid cross-contamination especially if you go out to eat

The other day, I went to Denny's for breakfast with my son who will be going away to college in September.These times are very important to me .

I ordered eggs, and hash browns. I brought gluten free waffles with me and the waitress toasted it for me. Aside from only going to a restaurant that served gluten free food and has equipment reserved for these foods what else can I do? I feel you cannot possibly be gluten free completely.

Another question: has any one developed the diseases associated with celiac disease as intestinal cancers, neuropathy, other diseases etc. This is terriflying to me.

thanks

We can only do our very best to avoid gluten in this very gluten oriented world. And over the next little while you will learn where the hidden problems lay.

You are right, we can not put our whole lives on hold. But we can learn and do all the normal things are safely as possible.

I have ended up with some joint problems that are not reversable because I went undiagnosed for almost 30 years. However ... I have also become healthier than I had been in all those years. And that is worth the diet!

There are not garentees in this life. We can't say what is going to happen in the future. What we need to do is live as healthy and as happy as we can now. You can still do almost all the things with your wonderful family as you did before. Now it just takes a little more thought and preparation.

So, ask all the questions you need to ask, and we'll do our best to help out :D Try and keep the stress level down by going for lovely long walks, reading your favourite book, or what ever you love to do.

Hang in there, it's worth it :P

Ursa Major Collaborator
;)

How can I possibly avoid cross-contamination especially if you go out to eat

The other day, I went to Denny's for breakfast with my son who will be going away to college in September.These times are very important to me .

I ordered eggs, and hash browns. I brought gluten free waffles with me and the waitress toasted it for me.

Going out to eat and bringing your own waffles sounds fine. BUT just using a regular toaster is not, those are loaded with crumbs. You might want to buy some toaster bags for when you go out. Here is one example. Open Original Shared Link

You can get those from other companies, too. You can put your gluten-free bread, waffles, bagles etc. into those, and safely toast them in a regular toaster that people use who are not gluten-free.

pat e Rookie

How do you handle going to the hospital for tests, etc and are ordered a gluten-free diet.

Is it really gluten free? I heard some people bring their own gluten free food to be sure.

What do some of you do?

tarnalberry Community Regular
How do you handle going to the hospital for tests, etc and are ordered a gluten-free diet.

Is it really gluten free? I heard some people bring their own gluten free food to be sure.

What do some of you do?

You talk to the hospital. They won't always get it right, but sometimes they will. But as you get better, you shouldn't need to be spending much time there. ;)

pat e Rookie

:blink:

How do you plan a vacation (which I desperately need)? I wanted to on a group tour or a cruise? Is is possible.

mamabear Explorer
;)

Thank you for all your comments and concerns. It made me feel some better.

My question is:

How can I possibly avoid cross-contamination especially if you go out to eat

The other day, I went to Denny's for breakfast with my son who will be going away to college in September.These times are very important to me .

I ordered eggs, and hash browns. I brought gluten free waffles with me and the waitress toasted it for me. Aside from only going to a restaurant that served gluten free food and has equipment reserved for these foods what else can I do? I feel you cannot possibly be gluten free completely.

Another question: has any one developed the diseases associated with celiac disease as intestinal cancers, neuropathy, other diseases etc. This is terriflying to me.

thanks

Pat,

First of all, I sympathize with your concerns. I have already had kidney cancer nearly 6 years ago now. Statistically having had one cancer increases the risk of having another one. but if you have now identified a risk factor (celiac) that CAN be controlled, you are blessed!! This is actually a good thing that you KNOW there is something you can do to help your health. I wonder how many families who have a family history of malignancies may actually have gluten sensitivity in their genetics?? Imagine the empowerment of your knowledge, not the frustration of the diet, There are many products in mainstream supermarkets available to us...look in the specialty sections and specialty freezer sections. Involve your local supermarket's manager....ask for products to be stocked.The internet is full of gluten free recipes and this forum's parent website has many,many resources for food and restaurants. It is way easy to get scared and a little paranoid when you deal with this condition, but as so many members have said before me, there are so many of us here to listen and to help.

tarnalberry Community Regular
:blink:

How do you plan a vacation (which I desperately need)? I wanted to on a group tour or a cruise? Is is possible.

Cruises are often already set up to accomodate you. Group tours can be more difficult, but it depends on where you go, and if you can get a hotel that has a small kitchen in it. Hotels with kitchens are the easiest way to go, so you can cook, but you can also just do research ahead of time on restaurants and grocery stores in the area that have things that can keep you well fed.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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