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Not Getting Better At All, Help?


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#1 rdawn

 
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Posted 01 March 2004 - 08:21 PM

:angry:

I am new to this site and, although I am reading lhere ike a madwoman, I am still finding myself somewhat unsure what to do. I struggle with two conditions, celiac disease and insulin resistance. I have been diagnosed with both of them within the last three months, so my world has been totally and completely turned upside down! I have absolutely no idea what to eat anymore, and have found myself just not eating at all to avoid the problem. I was diagnosed with celiac after having a month of severe, severe, can't leave the house, missed a month of work, do I have to wear special underwear at my age, diarrhea and stomach upset (after having 28 years of a "sensitive stomach", as we all in my family called it; after all the blood tests, colonoscopies, upper GIs, biopsies, blah, blah, this is my diagnosis. I have gone as absolutely strictly gluten free as I can know, tackled this with more resolve than I think I have anything else in my life, and I am still stomach sick, not as often, but still pretty much most of the time instead of all of the time. I am trying to eat strictly organic foods, strictly gluten free foods, and low carb foods, and frankly feel like all I am left with to eat is boiled chicken and lettuce (while my fiance noshes on ice cream and pizza and egg rolls and everything else I can't eat anymore). I live in a small rural town with very limited food resources, so I can't buy a lot of the gluten free products available unless I do so over the Internet, which is very expensive. I thought Atkins or some other low carb diet that I am supposed to eat for the insulin problems would fit in really well with my celiac, and when I was first diagnosed I thought "oh good, this will force me to eat low carb". Instead, I'm finding that even the "safe" low carb foods that I thought I could buy and eat have gluten hiding in them, and the only "certified" gluten free foods besides meat and fruits/veggies are all pretty high carbohydrate foods. To top it all off, I'm getting married in a month and found myself weeping hysterically the other day because I cannot eat the food at my own reception and I cannot even have a piece of my own wedding cake (it's my first marriage and I always dreamed about the whole shebang!). My confusion/fear/frustration has gotten so bad that I am going to the dr. in two days to request antidepressants b/c I just don't feel like I can deal with all of this. Does anyone have any suggestions for me as to how to reconcile my two diets and not feel like a bunny rabbit nibbling on lettuce and celery for the rest of my life? I feel very "joyless" to say the least. I used to get a great deal of joy out of food and now I feel like food is my enemy no matter what I do, it's either wheat or carbs, and I loathe the thought of trying to find something to eat, so instead I just stop eating at all.

After reading a lot of the postings on this site, I am thinking this may be just what I need to get through this, and would welcome any thoughts/suggestions. Thank you all in advance!
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#2 gf4life

 
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Posted 01 March 2004 - 09:41 PM

rdawn,

My heart goes out to you. Pretty much all of us here at this site know how you feel and have gone through similar situations. I would like to address a few things, but first I want to ask you this. Have you conscidered that your insulin problem could have been caused by the Celiac? I am not saying to go Carb Crazy, but you may be able to tolerate a few more carbs while eating gluten free, and still keep your insulin within a safe range. See some people get diabetes from having Celiac. And once they are gluten free they find their diabetes pretty much goes away. I'm not saying this will happen for you, but it could.

Now I also would like to know if you are eating dairy products? This can cause stomach upset in most Celiacs when they first go gluten free. Most can't digest lactose(milk sugar) and some can't digest casein (a milk protein). It might be worth it to skip all dairy products for a while. I know, less food options, but you might just feel better.

As for the food at your wedding. You need to speak to the caterer. They should be able to fix you a gluten free meal, even if it is not possible to change the whole wedding to gluten free. it is your wedding and you should be able to be happy and eat well. The same goes for the cake. You can have a small gluten free cake made for you and your husband-to-be to share, and the main cake can go to the guests. Most icings are gluten free, so if the bakery won't make a gluten free cake, ask if they will decorate one that you can make and it will match the rest of the cake, but keep it separate, so it won't get contaminated. There are many cake mixes that you can buy (online, it is woth the expense for you wedding) and they are pretty good. But I suggest you ask some advice on how to cook them before attempting since you wouldn't want to have your cake turn out like my last gluten-free cake disaster! It was nasty. Whatever you do, do NOT follow the directions on the package!

Now, it is very normal to feel depressed. We all have to grieve for our old way of life, but do not let it rule you. It might be easier if your fiance was a bit more considerate about eating gluten filled foods in from of you, but my husband does the same to me. He keeps wanting pizza for dinner! Fortunately for me he has recently gone on a healthfood trip (he calls it a diet, but he is eating constantly, at least it is healthy food and he is looking thinner) and is not eating "junk food" anymore, and finances are pretty tight so no eating out (which is very hard for me to do safely anyhow) so it is getting a bit easier. I do get myself some meal replacement bars online and a few other goodies, since I have to eat and I have to have something available for when I have some cravings for sweet, chewy, crunchy, chocolate, etc. and I also live in a small town where there are very limiled amounts of gluten free anything. I have been experimenting with some gluten-free baking and tonight I think my loaf of bread came out good, but I haven't cut into it yet. :rolleyes: Still keeping my fingers crossed...

I am glad you are here on this message board. It has been a real blessing to me. I have learned a lot here, and I have offered a lot of advice. I find that in helping others, we help ourselves. Sometimes we need more help, and sometimes we have more to give. So it may just be your time to get as much support as you can. You will get it here, you just have to ask.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#3 gf4life

 
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Posted 01 March 2004 - 09:47 PM

Oh, I forgot to mention that Atkins Advantage Bars are supposed to be gluten-free. Look for the following flavors:

Creamy Lemon Chiffon
Creamy Berry Cheesecake
Almond Brownie
Banana Colada
Chocolate Coconut
Chocolate Macadamia Nut
Chunky Peanut Butter
Chocloate Raspberry

And being Atkins they should be low carb.

Mariann :)
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#4 judy04

 
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Posted 01 March 2004 - 11:01 PM

rdawn,

I understand what you are going through. The first few months are the
worst. my advice to you is to take a deep breath and calm down, things will
get better, I promise.

You need to eat very simply, such as chicken, rice, and veggies(keep them simple, like celery, peas, green beans). I also eat pork chops, mashed potatoes, and again
a simple vegetable. Another dish I liked was chicken baked with rice and Pace
Picante sauce, the recipe is on the bottle and it is gluten-free.

Another reason that could cause you to be sick could be dairy intolerance,
almost everyone has this in the beginning. This is the hard part because these
were some of my favorite foods, milk,cheese, yogurt, eggs, and ice cream.
I do sometimes make an omelet with egg whites,green peppers, onions or
scallions.

Please try to avoid eating "gassy foods for a while like broccoli, cauliflower.

Just try to remember that your intestines are very "raw " right now so try not to abuse them, stay away from fast foods as it is easy for cross contamination
to occur.

My last piece of advice is to keep a journal, write down all of your meals, if you
have it written down, it will be easy to figure out what caused the reaction.

Hope this helps a little.
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#5 wclemens

 
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Posted 01 March 2004 - 11:26 PM

rdawn, I know just how you feel. I also did not get to eat any of my wedding cake, nor most of the catered food, however, be assured that your joy that day will far outweigh any diagnosis of Celiac and any food restrictions you have.

I have had Celiac for 51 years (though no one knew that was what was causing my severe Asthma until years later). My mom also had diabetes, and my father died of colon cancer.

SIMPLIFY your life. Look up at the sunshine. Smell the clean air. Take a deep breath and thank God for your family, lifelong friends, and your fiance. Do you work? Be grateful that you have a supportive group of people around you, who really LOVE you, no matter what.

Now, each step you take in getting your diet under control will help your mental well-being and your emotional health. Ignore the clock as much as possible today.

Here are five simple steps toward excellent health.

1. Narrow your diet down today to meats and low carb vegetables that you know you can tolerate. Eat only those when you get hungry, any time during 23 hours of the day or night. Eat as much as you want of these. Totally eliminate anything from your diet that contains milk, dairy, casein, whey, egg whites, or yeast.

2. One hour of your choosing (6:00 p.m. dinner is good) eat or drink any meat, fruit, vegetable, nut, seed, or food that you are certain will not bother you. You can include soy yogurt too. You should stay away from anything containing milk, dairy, casein, whey, egg whites or yeast. Eat and drink to your heart's content. Do not go over 60 minutes. Use the recipe below to create a cookie or cake for that one hour meal, and ice your dessert with the recipe listed. Eat until you are totally full. The more you eat the better.

3. All day and all night, drink as much of these sodas, or water, or herb teas as you like: Diet Rite Raspberry soda, Diet Caffeine Free Dr. Pepper, A&W Diet Root Beer, Canfield's Diet Chocolate soda (don't eat any other chocolate product however).

4. Get as much interaction with people, exercise, fresh air, and sleep as you can.

Here is the dessert recipe:
In a bowl mix together:

1 cube Imperial Margarine
2 egg yolks (throw away the white part of the egg)
1 cup white granulated sugar or brown sugar
1 teaspoon vanilla

Add: Enough Almond Meal to make a cookie dough, or less to make a cake.
Stir it all together, and drop onto a well-greased cookie sheet, or put into a well- greased cake pan. Cook at 300-325 degrees until the cookies or cake are firm.

Remove from the pan and separate the cookies, or remove the cake when cool.

Butter Cream Frosting: One-half cube Imperial Margarine, enough powdered sugar make the frosting the consistency you like. Stir well. It's fun. Ice your cookies or cake with this. Eat as much of this as you want during your one hour.

5. Think as many good thoughts as you can today. Remember the dreams for living that you had as a child. Thank God for all the wonderful things He has done for you, and all the wonderful people you have met. Kiss a baby, hug a child, pet a dog, do a few things that make you really happy today. Smell the flowers, look at the clouds, visit a friend in the hospital, help someone who seems helpless, etc., be aware of what is going on with people around you. Watch and listen.

rdawn, let me know soon how your first day, second day, third day living this way went. Keep picturing you and your husband on your wedding day, with all your favorite family members and friends present. Good luck! Welda
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#6 YankeeDB

 
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Posted 02 March 2004 - 07:44 AM

It might be good to consult a professional dietitian, even if you have to talk to him/her by phone. Your situation sounds fairly complicated and knowledgable guidance from specialists would be well worth it. Perhaps your insurance would cover it--doesn't hurt to ask. Best wishes! :)
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#7 Guest_gillian502_*

 
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Posted 02 March 2004 - 12:57 PM

I felt terrible on this diet, unlike most people, for the first several months I was on it. Things got so much worse before they got better. Now, after 6 months gluten-free, I do not have the stomach pain I was having during those first few months, though I still do have abdominal bloating and some and abdominal pain. I also suffer with the "sick stomach" feeling you mentioned, and taking a PPI has helped me with that.

Are you in actual pain, or just nauseated and having soft stools? Do you feel eating this way is upsetting your whole system? If so, I wanted to let you know you are not alone, it's a rarity to feel worse after going gluten-free, but I certainly did, and it happens.

I agree your best food options at this point are a piece of meat, a simple veggie, some potatoes or yams, maybe some applesauce, hot rice cereal is good for breakfast, and some simple non-acidic fruits such as pears, melon, apples, and others that won't bother your stomach. If you're having too much diarrhea and it's exhausting you, there are a few simple, easy to tolerate medications that the GI doc can prescribe that will slow down your system a little. No real harm in trying them, anyway. (And I'm usually against medication, but we all need a little help from time to time, can't do it all on our own!)

Good luck, and feel better!
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#8 rdawn

 
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Posted 02 March 2004 - 04:46 PM

Wow, what an amazing outpouring of support! I truly, truly appreciate it and think that I have gotten a really good boost. I just felt so unfocused and unsure, and your suggestions have been really helpful. I'm in a significantly better mood than I was yesterday, that's for sure. One question I have, tho, about the lactose intolerance thing. I have absolutely no, and I mean no access to any type of soy cheeses, dairy, etc. I have one store in town that has two aisles of "health food" and that's about it. Would taking Lactaid pills help with this since I'm not sure how well I'll be able to totally and completely avoid dairy right now? I just want to know if I can take something if I end up at a restaurant or something and the only gluten free things they have involve dairy?

Once again, thank you so much, all! It just appears that this whole thing is a "journey" that I'm just at the rocky beginning of, and it sure does help to have others along the way with me :D
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#9 Guest_Libbyk_*

 
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Posted 03 March 2004 - 09:20 AM

Rdawan-
I don't really have any advice, except to say that it is criminal you can't eat you own wedding cake! I am new, and go through little "mourning" moments, and one of mine was when it occured to me I couldn't have a weeking cake. I am no where close to getting married! Can you re-negotiate the menu with the caterer so YOU can eat? It is YOUR day after all, not a whiny guest who wanted a roll.

Anyhow, good luck. I hope that growing villi and the outpouring of support you can find here get you through.

Libby
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#10 judy04

 
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Posted 03 March 2004 - 10:10 PM

rdawn,

About the Lactaid question, You have to be completely off any
dairy products for 2 weeks before you can take the Lactaid
tablets. If I were you I would stay away from dairy as long as you
can. I've been off dairy for a couple of months and I tried to reintroduce
them but I started to get a reaction. My reaction to milk is "brain fog"
and my eyes burn. You might also introduce soy very slowly, lots
of people are allergic to it. I tried soy cheese one night and 2 hours later
I had the" itchies" all over.I know these restrictions are hard, but I have to keep
focused on getting well and feeling good again, I'm not there yet but
I am getting better every day. Hope you are feeling better, try making
blueberry pancakes with gluten-free flour, they are delicious...
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judy


gluten-free since 11/03, neg biopsy, IGA elevated




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