Just Diagnosec- Still In Denial And Depression Period!

[sharps45]

I just found out last week that I have celiac, though I have suspected for a while. Both my father and older sister had it. I didn't have any classic symptoms, just a very bad reaction when eating oats. Wheat products merely gave me disgusting gas.

My doctor told me to go ahead and eat anything that didn't give me gas! After reading though these forums I've decided that was bad advice. Anyway, I'm to the point of looking through every food we have and seeing what I can and can't eat. I have a cupboard full of Rice Chex, Rice Krispies, and Kix that I now can't eat. I live in a small town, and none of the stores here carry any kind of specialty flours for me to try, so I guess it's a trip to the big city to get some supplies.

I keep trying to be positive about all of this (remember the story of the guy with no shoes?), but it's difficult. The biggest problem (for me) is that physically I feel fine, so the mental part of getting motivated is hard for me. I know that sounds whiny, and I should be thankful that I don't have more problems. I also don't know a soul that has this disease, as my father and sister have both passed away, and neither of them really followed the gluten free diet very closely anyway.

My question is- From reading in these forums, you would think that gluten is a form of sarin nerve gas- any little drop will do me in. With no professional help to turn to, I have to know if I really need a separate toaster, and if I cook fries in the same oil I've cooked scones in it will hurt me?

I'm not looking to cheat, just to know some limits.

Any helpful ideas on motivation would be appreciated, and if anyone wnts to call me a crybaby, that's fine too.

[Mickide]

You are not a crybaby! I felt the same way!

As far as the flours go, don't go out and buy a bunch of flours until you get a cookbook. I bought a bunch of stuff then found a fantastic cookbook that uses almost only corn starch and potatoe starch(which you can find at almost any grocery store). I prefer these recipes to the ones with rice flour. I figure I am eatting enough rice anyways, with the rice bread, rice crackers, rice pasta

Hang in there, it really does get better. I would sit in front of the computer on this forum crying I was so overwhelmed. I feel great, like what I eat, adjusted. It is just a still a little tough here and there, and wonder how the holiday will be this year but plan on having a gluten-free baking party for christmas cookies I'm in texas, want to come

[DingoGirl]

You're not a crybaby, at all. Welcome to the forum.

Nearly all of us got all of our information about how to eat and live form this forum - it's a lifesaver, so you don't need any local professional help, which is good.

You can eat naturally gluten-free just by shopping in your local grocery store if you stick to a mainly pure diet - meats, chicken, fish, beans, fresh/frozen veggies, fruits, corn tortillas and plain corn chips w/ salsa, cheeses, yogurts, nuts, etc. When you get the hang of that, you can venture to the big city once in a while for some gluten-free flours or baking mixes. Is there a Trader Joe's in the big city? They now have so many wonderful gluten-free items (pancakes, waffles, granola (pricey, though , lots of other stuff). Whole Foods is great but also quite expensive. There are, however, some good cereals, and I"ll stock up on a few boxes when they go on sale (Nature's Path Mesa Sunrise and also Corn Flakes).

You might need to re-think your eating to one of more of a whole foods diet....food in its purest form (no chemicals, fewer processed foods, etc) and you will feel fabulous, not just now, but for the rest of yoru life. You sound young, so there's probably not been much damage to this point - but it can get SO much worse - believe me. I wasn't diagnosed until my mid-forties, and Celiac didn't manifest in my intestines until the last 4 - 5 years before diagnosis - but it hit me afflicted me mentally, my whole life, and it was hell to live through. If I'd removed gluten in my youth or in my twenties, life would not had been stripped away for me as it has been (HAD been )

Most processed gluten-free food is quite expensive and doesn't last long, and most bread is expensive and terrible - I now make my own from a recipe on this forum:

Open Original Shared Link

Ask any questions you like, people are very helpful here.

and you, you will go through a grieving process for a while - very normal.

[sharps45]

Thanks so much for the replies. I'm glad I sound young, but I'm 47! I'd figured on going slow with the scratch recipies. The meats and poultry are no problem, but I've never liked green leafy vegetables, and any fruits with citric acids in them affect me just like oats. I'm hoping that once I get gluten free, and things settle down, I can return to eating fruit, 'cause I miss them alot. I guess when you have no choice you do what you have to. Thanks again for the kind thoughts!

[gfpaperdoll]

There is hope for fruit!!!! I used to be allergic to all citrus fruits. Now I can eat oranges!!!! I tell you I gladly give up any bread product for oranges!!!! It takes a bit though before you can add them in. I would wait at least a year... depending on how sick you are...

Oh Joy, I can also eat pineapple now!! I love to get a carton of fresh pineapple at the store. I eat it with salad!!! or just plain with other fruit & nuts!

I have not added back grapefruit. I am too scared too try, Last time I ate a grapefruit I was sick for at least two weeks!!!

I have been gluten-free for 3+ years, & gluten lite for 10 years before that (thought I had a wheat allergy), I knew I was allergic to oats & barley since I was 25 years old. I am 60 now... & healthier by the day !!!

[mftnchn]

Welcome to the board.

Just to prepare you, you might feel worse after going gluten-free. That happened to me. Also some get more sensitive to gluten and to other things. Not trying to scare you, just to prepare you since you are not too symptomatic right now. Hang in there, maybe you will find out other things that get better that you were just living with and ignoring!

Hang in there, it gets easier. I have gradually found great alternatives to favorite foods, so that it feels less and less like I am losing out.

[buffettbride]

My husband and I often talk about how much harder for an adult to be dx Celiac than a child, because kids have their parents watching over every spoonful of food to make sure it is safe!

I completely understand the denial--I still go through phases when I think there is no way in the world my daughter could have a lifelong disease--one that if she doesn't manage closely, it could kill her. However, I am extremely thankful for an early diagnosis because I can only imagine how sick she would be had we not figured it out last May.

My best advice for staying gluten-free when you don't like veggies (although the mom in me says to eat them anyway!) is stick with simple foods you DO love that are naturally gluten free. If steak makes you happy, then eat steak! As long as potatoes aren't a problem for you, you can be a steak and potatoes guy!

When my daughter is in the dumps about the food, I make her some fried potatoes. It is the ultimate comfort food and isn't a gluten-free substitude. Now, not exactly HEALTHY of course, but it sure does the trick.

We have really scaled down on the gluten-free substitute foods and stick with a few basics she enjoys such as Glutino pretzels, Midel choc chip cookies, and Enjoy Life snickerdoodles.

[VioletBlue]

I was diagnosed last December. There are still days now when it gets to me. I said something obscene to the TV last night when a commercial came on. It was one of those burger place commercials that shows the fluffy bun. This one claimed their whatever was healthier. Yeah, right. I hate those commercials. Hate pizza commercials too, LOL.

But overall I cope. I eat mostly whole foods, very little grains. I keep a gluten free baking mix around and make muffins or cookies with it occasionally, but I've given up on bread. Amazingly, life does go on without bread, and life is worth living without it. I would not have believed that just a few years ago.

It's a give and take process. You have to find out what works for you, and what you can live with. I can live without bread though it grieves me, but I compensate in other ways. As someone else suggested, eat what you like that is gluten free. It may not be a balanced diet, but it beats eating nothing, or eating something with gluten in it. Find a way to bring food that makes you happy and is gluten free into your life.

I used to love to bake bread. Now I don't see the point. It takes a dozen or so expensive ingredients to wind up with a loaf of bread that has a shelf life of a day and doesn't taste like wheat bread. So I bought an ice cream maker and channeled all that bread baking enthusiasm into making gourmet ice cream. And I grew enough tomatoes this year to can a whole bunch of salsa. I've taken up canning with a passion. It's another channel for the energy and enthusiasm.

It helps to be open to the options. At one point I sat down and make two lists. One list of everything I could not eat in every possible variation I could think of. I am allergic to corn and sunflower and a list of other stuff, so it wasn't just gluten on the list. Then I made a list of everything I COULD eat, whether I'd ever eaten it or liked to eat it. Of course the list of what I could eat was huge compared to the list of what I couldn't eat. That got me to start experimenting with foods I maybe hadn't tried before, or had often. The process brought a whole lot of other foods into my life, some that I now love. Every time I feel confined by what I can't eat, I try and bring something new into my diet.

Everyone copes differently. And it takes time. A lot of what people eat and how they eat is habit. You're creating a new habit in your life. I read somewhere it takes 21 days to break a habit or create a new one. Be patient and forgiving with yourself and try and focus on the positive. Hard I know, but it beats the alternatives.

Violet

[sharps45]

I don't know if this is part of the denial or not, but should I get a biopsy done? All I've had is the blood scan, and my dr said it showed 'mostly' positive. I have read others in these forums who have the results and numbers, but I don't. Should I get them and compare? Plus, this is the same dr who suggested I go ahead and eat anything that didn't cause symptoms! Please, some advice from you experts. thanks for everything

[buffettbride]

I don't know if this is part of the denial or not, but should I get a biopsy done? All I've had is the blood scan, and my dr said it showed 'mostly' positive. I have read others in these forums who have the results and numbers, but I don't. Should I get them and compare? Plus, this is the same dr who suggested I go ahead and eat anything that didn't cause symptoms! Please, some advice from you experts. thanks for everything

There are a few schools of thought about this.

If a medical diagnosis is very important to you, then I would do the biopsy. As for blood tests, there are many false negatives, but not false positives--and make sure you understand the tests that were run (others here are probably better than me to tell you what is good/bad/ugly when it comes to the blood tests). The biopsy with the blood tests would give you that "gold standard" diagnosis you might have heard people mention. The benefit to this is you might qualify for medical studies related to celiac or other benefits. One con is that private health insurance can be hard to get and/or expensive for celiacs, so that might be an issue as well. I think back to when my daughter was diagnosed and I'm not sure I would have 100% confidence about gluten-free without the medical diagnosis, but that is just me. In my daughter's case, they only mildly suspected celiac after her endoscopy and THEN ordered the blood tests, which came back overwhelmingly (100 for her TTGs) positive for celiac.

If a medical diagnosis isn't as important to you as simply feeling well, then just go on the gluten-free diet as if you did receive the medical diagnosis. If gluten-free makes you feel better, then there is your answer. There are other tests you can do, such as with Enterolab to find out if you have the genes for celiac to maybe substantiate any of the mental roadblocks, but it really comes down to if gluten-free makes you well again. If it does, then the notion of a medical diagnosis isn't all that important.

[sharps45]

I'm having my doctor fax me the results of my blood work. I'll check then out as shown in other posts, and then make the decision. From reading here, the biopsy isn't a big deal (but then, my wife had her esophagus stretched by one of our local drs to aid in swallowing and he tore the tissue, didn't say anything, and she almost bled out). Thanks for the info.