I Need Advice And Support

[Sandi]

I have been celiac for 4 years

I never stuck to the diet, I know I am and was wrong.

I have a very stressful life and food is my comfort

(I am trying very hard to change that thinking now)

Any way in the past I was able to cheat occ and stick to the diet and all

Now I am finding I cant cheat at all

When I cheat I am in total body pain, it hurts to sit, lay etc

amoung other things.

But i am still having problems

I am afraid to eat, so mostly i eat plain lettuce and eggs

and a occ. Ice coffee

Before I was getting the tingling on my feet area and all

now thats almost gone, but I feel my skin on arms are slightly burning, i am not in pain, but I know its there

I am cutting out milk as much as I can

do I have to cut eggs too??

I am allergic to many fruits and some nuts

and now the glutin and maybe eggs

I guess being depressed doesnt help

I just want to feel better

thank you

sandi

[Lisa]

I have been celiac for 4 years

I never stuck to the diet, I know I am and was wrong.

I have a very stressful life and food is my comfort

(I am trying very hard to change that thinking now)

Any way in the past I was able to cheat occ and stick to the diet and all

Now I am finding I cant cheat at all

When I cheat I am in total body pain, it hurts to sit, lay etc

amoung other things.

But i am still having problems

I am afraid to eat, so mostly i eat plain lettuce and eggs

and a occ. Ice coffee

Before I was getting the tingling on my feet area and all

now thats almost gone, but I feel my skin on arms are slightly burning, i am not in pain, but I know its there

I am cutting out milk as much as I can

do I have to cut eggs too??

I am allergic to many fruits and some nuts

and now the glutin and maybe eggs

I guess being depressed doesnt help

I just want to feel better

thank you

sandi

Sandi:

I am sorry that you are feeling so bad. I would recommend that you go back to the basic diet of meats, seafood, rice, potatoes, fresh veggies and the fruit that you can tolerate. You NEED to have a balanced diet and lettuce and eggs won't do it. Depression can also be a gluten related issue.

The reason that many of us are so diligent with the diet is specifically because of the long term damage of gluten poisoning. There are so many here that have been inflicted with very serious irreversible conditions due to Celiac. Please take this seriously and we will help you thought it.

Stick around here for a while and read the post. I am sure that it will help you a great deal. This is a great place to fall and as well a great place for a new beginning. It's all in your hands.

You have an open door here anytime.

[sansglutengrl]

Sandi,

First of all - forgive yourself for your mistakes. Mamagoose is right, it's something that you definitely need to start taking very seriously. So keep that in mind, and also know that the past is the past and there's nothing you can do about what's been done, so there's no sense in feeling bad about it. Also, food can still be a comfort for you when you're gluten free, I promise! Tell us what your favorite comfort foods are and we'll help you imitate them. I thought I would never be able to live without pasta and macaroni and cheese - and now because of this board, I don't have to! It's overwhelming, but you can do it. And trust us, you'll feel much much better and get even more comfort from your food.

As for how to make yourself feel better now; I have a hard time with eggs when my tummy is upset whether it's from gluten or anything else. Also, I have been gluten free for a little over a year and I can just now tolerate greens without having the big D - they can also be hard on the digestive track. You may come to find that you need to cut out all dairy, but usually you can add it back in eventually. For now, try eating some things that are really simple.

My absolute favorite thing is to eat rice with just a little butter and some plain chicken when I'm glutened, it fills you up, has a comforting taste, and it sits well in an upset tummy. Rice Cakes and peanut butter for lunch or a snack is great too.

And I also get really really depressed when I'm glutened, so take heart - we know how you feel and we can promise it will get better!

-sansglutengrl

[Guest KG in FL]

I have been celiac for 4 years

I never stuck to the diet, I know I am and was wrong.

I have a very stressful life and food is my comfort

(I am trying very hard to change that thinking now)

Any way in the past I was able to cheat occ and stick to the diet and all

Now I am finding I cant cheat at all

When I cheat I am in total body pain, it hurts to sit, lay etc

amoung other things.

But i am still having problems

I am afraid to eat, so mostly i eat plain lettuce and eggs

and a occ. Ice coffee

Before I was getting the tingling on my feet area and all

now thats almost gone, but I feel my skin on arms are slightly burning, i am not in pain, but I know its there

I am cutting out milk as much as I can

do I have to cut eggs too??

I am allergic to many fruits and some nuts

and now the glutin and maybe eggs

I guess being depressed doesnt help

I just want to feel better

thank you

sandi

I "cheated" at first on the diet. I learned the hard way, I cannot do that. Like you said. I cheated and I was "OK"? But then everything went BAD!! The arm and leg tingleing went into numbness. Very difficult to funtion. And painful eventually. This is actually neurological although someone else more knowledgable could verify or clarify this. The burning!! My legs feel like fire! This was one of my first symtoms, which of course was not diagnosable. (Good word, huh?) The stomach gets worse. The total body pain feels like a truck is rolling over my body and I really am only exagerating slightly here! The joint pain, the bone ache. Ughh!! I'll bet you are going through what I went through. Cheating became something I cannot do. I didn't want it to work that way, but it did! And I was raised NOT to be very disiplined about anything! It was hard but it became a question of life, or no life. I previously didn't like to cook unless I was "in the mood" which was sometimes, sometimes not. No worries.

The depression, I was told I was depressed. But now I know (although it still is something of an issue to figure out) I was unhappy because I felt so TERRIBLE!! The gluten does things to our brains (laymen's terms here) where I do believe the delicate chemical balance is effected? Someone smart could chime in here!

But you are not alone, I think I sounded like you about 2 years ago. You'll figure it out. Keep reading. Keep trying. No one's life is perfect, you have a somewhat unique challenge. But really, it will just come down to keeping that sneaky little amount of gluten, away from your body. There are worse fates!! But I do understand what you mean when it's hard to deal with. Keep your chin up and overcome. You are not alone.

[wowzer]

I had that burning the first couple of weeks when I went gluten free. I also noticed that once I went gluten free, I became more sensitive to gluten. Come to find out I was using a lip gloss that wasnt' gluten free. Dont' forget to check your lotion, soap, cosmetics, etc. Also check medications that you are on. It turned out I was on one they couldn't guarantee was gluten free, so I quit taking it. I hope that you feel better soon.

[holdthegluten]

Think of your condition as a disorder, not a food alllergy. If you were a diabetic would you not take your insulin? Treat it seriously and things will get easier. Food will become less important and cravings will ease up tremendously. Be positive and we are here to help. Everyone knows how you are feeling and we sympathize. God Bless You.

[Sandi]

Thank you everyone for answering my post. I am getting so I am afraid to eat. Then today I weighted my self and I weight 330, I don't feel I weight that much, I eat to deal with my emotions and Its been getting worse sense my husband died and my youngest now is causing problems and that is stressful but in the end I know that's no excuse.

So I want to stick to the diet and lose weight and be a happier person.

Right now what worried me is my arms feel like they are burning after I eat. I did the blood glucose this am and it was 111 so I really don't want to be a diabetic and add that to this mix

The burning feeling is new about 5 days now.

I noticed it was getting worse eating eggs/ cream. Its not the tingling I get in my legs when I cheat on the gluten. I guess I never thought the cheats were that bad, and I could play with the diet. My Dr. Still doesn't consider me a celiac.

I cannot eat many fruits, and nuts and gluten and maybe eggs/castin/dairy

I am going to order the endolabs tests today I think, do you all think its a good idea?

I don't know what to eat for B/fast, I know I have to lose weight so with all this going on I don't know if i can do it.

But I have been almost 95% gluten free for a week, I haven't cheated knowingly

But my diet has been limited

eggs for B/fast and lunch and a piece of meat and a plain veggie for supper

Fridays is Chinese food night for my family and last Friday I ordered brown rice and steamed snow peas and mixed it with butter. Was that OK?

I hate to be winning to you all, but I am frustrated, in pain and don't know what to do next

Thank you for reading this

sandi

[Sandi]

ok I order these tests

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

* Itemized Costs and Insurance Codes:

Anticasein IgA (CPT 83520) $ 0

Quantitative fecal fat (CPT 82710) $ 70

PCR Amplification (CPT 83898) $ 30

DNA Isolation (CPT 83890) $ 30

DNA Separation (CPT 83894) $ 30

Probe Identification (CPT 83896) $ 30

Molecular Identification and Interpretation (CPT 83912) $ 10

Antigliadin IgA (CPT 83520) $ 99

Antitissue transglutaminase IgA (CPT 83520) $ 70

Egg Sensitivity Stool Test

* Itemized Costs and Insurance Codes:

Antiovalbumin IgA (CPT 83520) $ 99

now do I try to go dairy/casin free now

or wait till I take the test

I know it wont matter about the gluton but will it matter with the casin and dairy???

Is there anything else I should be doing?

thank you

sandi

[Ed-G]

I have been celiac for 4 years

I never stuck to the diet, I know I am and was wrong.

I have a very stressful life and food is my comfort

(I am trying very hard to change that thinking now)

Any way in the past I was able to cheat occ and stick to the diet and all

Now I am finding I cant cheat at all

When I cheat I am in total body pain, it hurts to sit, lay etc

amoung other things.

But i am still having problems

I am afraid to eat, so mostly i eat plain lettuce and eggs

and a occ. Ice coffee

Before I was getting the tingling on my feet area and all

now thats almost gone, but I feel my skin on arms are slightly burning, i am not in pain, but I know its there

I am cutting out milk as much as I can

do I have to cut eggs too??

I am allergic to many fruits and some nuts

and now the glutin and maybe eggs

I guess being depressed doesnt help

I just want to feel better

thank you

sandi

Sandi,

I've been there. I was dx'd as celiac when I was 1 or 2, and was put of an elimination diet (what they had way back in the Stone Age), and was for a while was down to bananas and cottage cheese. However, the same foods were reintroduced back into my diet. That's right, the very same foods that were causing the problems in the first place. And I ate them -- a lot. Spaghetti, mac and cheese, cake, just about everything. But I did complain (loudly) about regular bread and absolutely refused to eat it. And I was all skin and bones too (the "classic" celiac look) along with constipation, diahrrea, gas, and little red pimples all over my sides and back. (I still have some of those.) And I had the belief that celiac was something that you you grew out of. I know better now.

I don't know how you are with eggs and dairy, but they are are certainly are gluten-free. I do know that your digestive system may be so badly damaged you may have to stay of them for a while. I do recommend trying Tinkyada pasta if you want some comfort food. It's 100% rice flour. And when I was a bachelor I taught myself to stir fry. That way I could control what I put into my meals. And if eggs are ok, why not an omelet for breakfast?

There are also more knowledgeable people here that can help too. I do hope you feel better. And I'm sure you will lose the weight in time if you stick to the gluten-free diet. Good luck, and God bless.

Ed in MD

[Betty in Texas]

once you stay on the diet get all the gluten out of your system the depression will fade away it did't take me about two weeks and the crying stop. My comfort foods are Pistachio and Pineapple delight it is so easy to make take it to a party and it is all eaten : Box of sugar free instant Pistachio pudding: can of crused pineapple bag of small marshmellows : tub of sugar free coolwipp don't mix the pudding just dump it all in a bowl and stir you can't stop eating my stomach likes it. try it you like it you can also put you favorit nut in it . Hope you start to feel better all so M & M make you feel better

[loco-ladi]

Can you believe even in this day and age, I had a student engineer a couple trips ago who has a daughter diag'd with celiac, the doctor told him "she will grow out of it" he told me that I went off on the doctor, sai dude you better change that way of thinking real fast she will not grow out of it read ... (named off a few books etc).... and said his daughters health depended on him knowing what this really meant. We had a long conversation afterwards, wish i could have answered all his questions, but at least he is going to do more research himself not just take the dr word for it now!

[sallyterpsichore]

I still feel awful a good portion of the time and I've been strictly gluten, dairy, and soy-free since last November. I know if I wasn't motivated by the pain and depression of eating these things, I probably wouldn't stick with the diet. It's amazing what a motivator pain can be! I still have depression on occasion, which is strange, because that is a new symptom this year, but there are some other possible causes of that. I still think something I'm eating is causing it, but what I'm getting at is that not all of us heal at the same rate. I'm still struggling along every day and have had baby steps toward success, but still have to fight sickness everyday. My guess is that the pain will motivate you to cut all of these foods out and you sort of just have to feed back in different things (milk, soy, or whatever isn't proven to make you react) one at a time and see what your body does. It's certainly no fun, but it'd be nice to find out you could eat something you didn't realize was safe!

Hang in there and keep posting!

-Sally

[Sandi]

Its day 4 I think of being almost gluten free!~

If I had gluten, It was when I didnt know it.

Its day 3 of dairy and casin free!

Its hard and I have to put more thought inbuying the food and preparing it,

something I am not used to.

Fast and easy was my name, I dont like cooking and in the summer even worse.

I still have pain in my bones and thumb and stomach and other stuff

but i can see it lessening

When does the tired leave and depression!

Hope everyone has a good day

sandi

[Ed-G]

Can you believe even in this day and age, I had a student engineer a couple trips ago who has a daughter diag'd with celiac, the doctor told him "she will grow out of it" he told me that I went off on the doctor, sai dude you better change that way of thinking real fast she will not grow out of it read ... (named off a few books etc).... and said his daughters health depended on him knowing what this really meant. We had a long conversation afterwards, wish i could have answered all his questions, but at least he is going to do more research himself not just take the dr word for it now!

Hoo boy! Is that 1960's thinking I hear? My parents heard that when I was a kid.

Ed in MD

[Sandi]

if I cheated, it wasn't intentionaly

But I haven't eaten alot, almost scared to

but at least one meal if not 2 for the last 2 days

I had 2 rice cakes, and about a inch of hebrew national salami

and a plain hamburger

but now i am having the runs, where before Dx it was the opp.

What am i doing Wrong?

I had some fruit too

I have been trying to take away dairy and casin as when I eat it my arms feel like its burning

sandi

[Murph]

If u have a good store near u breakfast can be one of many good gluten-free cereals, w/ soymilk or ricemilk. (At least one ricemilk isn't gluten-free tho - I think RiceDream. Not sure whether every soymilk is gluten-free, but I think all I've checked were). I once saw an interview w/ Billy Bob Thornton where he said how much he loves Puffins Honey Rice cereal w/ Vanilla Silk soymilk. (Not all Puffins are gluten-free btw)

Good luck - most of us have been where u are - it seems overwhelming at first but gets much MUCH easier.