Too Much To Think About!

[Izzy-24]

Hiya guys,

I was diagnosed with celiac two weeks ago and have been trying to be off the gluten ever since (easier said than done!) I licked an envelope the other day and had some chewing gum, all things you do without thinking! Im the sort of person who will stick to something when really put my mind to it and because i want to get rid of all my symptoms i will definately stick to it. Its just hard to know how far you need to go. I dont want to get obsessed about touching things etc! But are things like dish cloths really capable of setting you back with your diet? There just seems to be too many things to think about and im finding it abit much in that area!!! Not feeling any better after two weeks off the gluten, is this normal or is this a sign im getting glutened somehow?! My main symptoms are very low iron stores, very pale face with big black eyes, angular cheilitis, dia..., extreme fatigue, depression and anxiety etc Will my pale face and black eyes get better from being off the gluten? I hate looking at my face because of my eyes (they are so dark). Has anyone else had these things improve? Would really appreciate talking to people going through the same thing!! No one seems to understand if havnt got it! Get wound up having to keep explaining why im doing what i am!

Izz xxx

[scotty]

Hiya guys,

I was diagnosed with celiac two weeks ago and have been trying to be off the gluten ever since (easier said than done!) I licked an envelope the other day and had some chewing gum, all things you do without thinking! Im the sort of person who will stick to something when really put my mind to it and because i want to get rid of all my symptoms i will definately stick to it. Its just hard to know how far you need to go. I dont want to get obsessed about touching things etc! But are things like dish cloths really capable of setting you back with your diet? There just seems to be too many things to think about and im finding it abit much in that area!!! Not feeling any better after two weeks off the gluten, is this normal or is this a sign im getting glutened somehow?! My main symptoms are very low iron stores, very pale face with big black eyes, angular cheilitis, dia..., extreme fatigue, depression and anxiety etc Will my pale face and black eyes get better from being off the gluten? I hate looking at my face because of my eyes (they are so dark). Has anyone else had these things improve? Would really appreciate talking to people going through the same thing!! No one seems to understand if havnt got it! Get wound up having to keep explaining why im doing what i am!

Izz xxx

your already heading in the right direction. i dont think any celiac wants to look themselves in the mirror. i think the worst thing about living is being trapped...your not going to wake into any other outlet to this place; there is no way around being you here. on that note, YES, be obsessive, be absolutely terrified of that which will be your kryptonite, your achilles, cuz on the other hand your a superhero, a warrior,

besides now you get all new things that are all yours. no one can play with your toys anymore. and trust me no one wants to trade lunches...but while they are eating pizza--you will be eating spinach-follow me

[kenlove]

HI,

For me its been 18 months, I think, since diagnoses. It just takes time not only to start feeling better but also to get used to it and establish new routines. IN my first month I got sick and couldnt figure it out either asI was being so good about things.

It was the licking the envelop thing that was doing me in. Now I had a real excuse for not paying bills!

3 or 4 months form know you wont recognize yourself and be thankful for the amount of energy that you now have.

good luck!

Ken

Hiya guys,

I was diagnosed with celiac two weeks ago and have been trying to be off the gluten ever since (easier said than done!) I licked an envelope the other day and had some chewing gum, all things you do without thinking! Im the sort of person who will stick to something when really put my mind to it and because i want to get rid of all my symptoms i will definately stick to it. Its just hard to know how far you need to go. I dont want to get obsessed about touching things etc! But are things like dish cloths really capable of setting you back with your diet? There just seems to be too many things to think about and im finding it abit much in that area!!! Not feeling any better after two weeks off the gluten, is this normal or is this a sign im getting glutened somehow?! My main symptoms are very low iron stores, very pale face with big black eyes, angular cheilitis, dia..., extreme fatigue, depression and anxiety etc Will my pale face and black eyes get better from being off the gluten? I hate looking at my face because of my eyes (they are so dark). Has anyone else had these things improve? Would really appreciate talking to people going through the same thing!! No one seems to understand if havnt got it! Get wound up having to keep explaining why im doing what i am!

Izz xxx

[imsohungry]

You made a statement that makes me think you'll hang through this:

"Im the sort of person who will stick to something when really put my mind to it and because i want to get rid of all my symptoms i will definately stick to it."

You will get the hang of being gluten-free, and it won't happen overnight. Don't be too hard on yourself. We all slip up occasionally. (i.e. we think we read all the ingredients carefully, only to find that the chips we just ate contain barley or rye or wheat). Or a product that used to be gluten-free has changed ingredients and we throw it in the cart at the store without reading.

My symptoms are different from yours, and everyone feels better/heals at a different pace. I do the best I can to stay gluten-free, and the rest I leave to God.

Example: The other day I ate a bowl of gluten-free granola cereal (it was a new, unopened box). Well, I got to the bottom of the bowl and there was a dead bug floating in my rice milk.

My point: When I purchased the cereal, I confirmed it was gluten-free but didn't specify I wanted it bug free ...so as hard as we try, there will be the unintended slip-ups. Good luck to you and welcome!

-Julie

[AliB]

I'm working my way through all these posts picking up information and reading experiences etc. I have not yet been diagnosed as Celiac but judging by my symptoms would not be at all surprised at a positive diagnosis. As much as I would like to I can't go gluten-free until the blood test is done next week.

Izzy, I was thinking about you saying that you have been gluten-free for 2 weeks yet do not feel any better yet. I understand that it can take some time for the body to adjust, but perhaps it is possible that your problems are also compounded by reactions to other things like dairy, corn, even salicylates etc. in vegetables. So I would think then that it would be good to try the gluten-free for a month or so and if then there is no benefit, look to eliminate other food types to see if it makes any difference, or even cut to the chase and just do the elimination diet then watch reactions when other foods are re-introduced.

When the Immune system is compromised it can often be sensitive to many different things not just one, unfortunately.

[ravenwoodglass]

I had to smile when I read the response about mirrors- my DS asked me a bit ago why all my mirrors are hung to high for anyone to see themselves in. My face aged 20 years in the last 5 of my diagnosis and that combined with oozing DH sores made me really not like mirrors. I didn't realize I had prevented anyone else from seeing in them though.

Hang in there, it has only been two weeks and it took many, many years of subclinical illness for many of us to get to the point where anyone had a light go off and think of celiac.

It will take a bit but before you know it you will really like the person you are seeing in the mirror. One thing that will help you immensely at first would be cutting out dairy, do it for just a couple of months and then add it back in carefully using hard cheeses like cheddar and yogurt. Do not sub soy milk for regualr milk at first go with something like Pacific Foods rice milk, one of the few that don't use barley, almond milk or some such. The reason for eliminating dairy is because the same villi that produce the enzyme you need to digest it are the villi that are damaged by gluten. Most can add it back in after they heal. I would concentrate on the gluten and the dairy for right now, it can take some time to heal, if after at least two months on the diet you are still not better then explore the possibility of other intolerances.

A for sure sublingual B12 will help a great deal with your energy levels. Most have at least one form of sugar alcohol in them and if you don't like to consume them I recently discovered that Royal Jelly has a lot of B12 and is also absorbed through mucous membranes and not in the gut.

There is a lot to learn but it is doable. Don't forget also that you are most likely going through withdrawl which may make you a bit more 'moody' than usual, this will pass. Read all you can here and hang in there. It will only get better from here.

[Worriedtodeath]

The first time I went gluten free unknowing - Phase 1 of the Aitkens diet- I felt HORRIBLE!!!!! THe absolute worst case of flu is what it felt like. It lasted for about 3, 4 days. And happened about a week -10 days into the diet. I hung in there because I wanted to lose weight and then one morning I woke up and felt 100% wonderful!!!! Best I had ever felt in years. Not knowing about gluten, I began to add in carbs (read wheat) and felt like crap again. Now this time it was only like a day.

Fast forward 10 years and my 19 month old is horribly sick. We did the biopsy and it came back negative for Celiac disease but she's lactose intolerant. Now, after a few days trial, we know she can't handle wheat for sure. (one dr says it subclinical Celiac, gi says it's an allergy)

I took myself, and all 3 kids off of gluten. One boy the oldest had withdrawals (right now in week 2 of gluten-free) and feels and looks like crap. the other has not been phased at all. Both boys and I have been off of gluten 14 days. I have no joint pain at all !!!! NONE!!! I can get out of bed without gritting my teeth and taking it slow and easy hoping it won't hurt to stretch out my leg or touch my feet to the floor. The oldest says his tummy doesn't hurt all the time (something he didn't know until he went gluten free) and the middle boy suddenly is eating everything in sight and he hasn't had an appettie in months. THe baby is also suddenly eating and has dropped to one or two somewhat firm movements a day instead of several diapers of mush. No one has run to the bathroom and we have not had all of us trying to use the bathroom at the same time in about a week.

Now both boys complain whenever they eat cheese or drink milk of their tummies hurting. Again, something we didn't know because their stomaches felt bad all the time. Today, we are all going diary free along with the baby and hopefully that will help.

All 4 of us have in just a couple of weeks had the dark circles fade or diappear all together. No one asked my children if they were tired today and normally my kids look like they haven't slept in days (along with me) The middle son had really thin looking skin that was really pale and he is normal looking today to the point that people have made comments about how much better he looks what did we do ??. I've lost 10 lbs and don't have my clothes get tighter by lunch time anymore and my eyes are nowhere near as dark.

So there is hope!! It will get better. Take the list that one of the people here made and follow that. I haven't put them into the computer yet but I do have 2 weeks of meals planned out. I don't think we have been glutened but we haven't hit a 100% yet to know. I did make a shopping list on index cards of unsafe and safe ingredients that I pulled from here. I could email that to you. we are just doing simple foods and today I bought gluten free cookies, pizza crust mix, and bought gluten-free pancakes/waffle mix because the kids need a little more in their diet than just veggies/fruit/ and meat. I bought a ton of fruit last week and they ate almost everything but the grapefruits and they have never eaten much fruit. So I decided to add some more to their diet.

And the baby responded the fastest, then the middle child, and then oldest. I am definitely dragging way behind them though the stiff joint/pain left pretty quick. THe rest of it is taking a bit longer than the kids. So I think how long you have been sick plays a part in how fast you recover.

HTH

Stacie

And I am OBESSED with gluten (but I might have been a little OCD before anyhow). i cleaned the kitchen including the toaster oven, can opener, and use tinfoil on everything and I have eradicted every known, suspected, and imagined piece of gluten and possible hiding places in the house including under the couch and the cushions. And then scrubbed that spot or appliance or tool until it looked new. And I have banned anyone bringing it in. I just couldn't stand the thought that it might be laying around somewhere.