In Denial

[jodikris]

Over the past few years I have hopped on and off of this site. I think I am in denial that I have DH and Celiac. For about a year the Dapsone allowed me to live in this denial with only small break outs now and then. When I came to this site I found support and encouragement but I kept leaving.

This weekend I was in the hospital getting blood transfusions for what they THINK is dapsone related severe anemia. I was away from my family and really started thinking that Celiac could hurt me. I have even avoided the View so I don't have to see Elizabeth talk about it. Anything to avoid the reality that I have this.

My dad has cancer. It's stage 4. I have to run our business on my own. What if I am not here to do all I have to do to keep it going? I guess I am here asking you guys once again to welcome me back and help me deal with this. No one around me gets how this gets me down. They all basically think I just need to eliminate wheat and no problem. It's not that simple for me. I feel so restricted and not normal. Plus I am itching within an inch of my life and look horrible. Any words of wisdom would be greatly appreciated.

Jodi

[zansu]

Welcome back. We're here for you no matter how many times you come and go.

I was highly symptomatic for 6 years. total pain between my ribcage and pelvis. pain to standup, pain every time I used stomach muscles. D every day. when I got the diagnosis and the possibility of making the pain stop, I took it. Yes, the diet is a pain, but not as bad as the physical pain I was in. I will also say that I ate more gluten-free goodies that first year than I had eaten regular goodies in the 2 years before (that was my form of denial). We all have our ways of coping.

You, however, have to look at the long term. If you are celiac, you are damaging your body every day you continue to eat gluten. You have to decide if you want the itch to go away enough to get over the pity party about being different. Your chance of being heatlthy and around to run the business is greater if you take care of your body. Only you can make the choice, only you will bear the consequences. So, buck up (again). We're here for you (every time ).

[ravenwoodglass]

Over the past few years I have hopped on and off of this site. I think I am in denial that I have DH and Celiac. For about a year the Dapsone allowed me to live in this denial with only small break outs now and then. When I came to this site I found support and encouragement but I kept leaving.

This weekend I was in the hospital getting blood transfusions for what they THINK is dapsone related severe anemia. I was away from my family and really started thinking that Celiac could hurt me. I have even avoided the View so I don't have to see Elizabeth talk about it. Anything to avoid the reality that I have this.

My dad has cancer. It's stage 4. I have to run our business on my own. What if I am not here to do all I have to do to keep it going? I guess I am here asking you guys once again to welcome me back and help me deal with this. No one around me gets how this gets me down. They all basically think I just need to eliminate wheat and no problem. It's not that simple for me. I feel so restricted and not normal. Plus I am itching within an inch of my life and look horrible. Any words of wisdom would be greatly appreciated.

Jodi

I am so sorry things are so hard for you right now. I am glad you decided it was time to come back to the gluten free world.

Those of us with DH are only too aware that while the med helps the skin it does nothing for the autoimmune reaction that is occuring in the rest of the body. Too bad most doctors don't know to take that into consideration but it is not something they are taught.

It will take a long time for the antibodies to be completely gone from the skin tissue. Meaning that for many even small amounts of CC will cause a blister or rash. Everyone is an different but for me it took about 2 years before the outbreaks stopped altogether, but I was using gluten containing shampoos and lotion for the first year or so, at least until I found this site. Now I get these miniscule little blisters that are all alone and heal real quickly. The purple spot they leave now fades fast also.

One thing you want to consider doing at first is trying to eat as pure as you can. Unprocessed fresh or single ingredient frozen (like veggies and fruits) will help you to heal the fastest. With everything you have to deal with right now with your Dad's illness you need to try and heal as quickly as you can.

Having celiac is not really all that hard to deal with once you get used to it. It can be restricting if you allow it to be but a lot of folks travel and work quite successfully. The sooner you are rid of this toxin the less chances you have of developing a lot of other problems.

This board has been invaluable to me over the last couple of years, I just wish I had found it sooner. Welcome back and don't be fearful of asking any question you need to. Usually someone will have an answer or be able to guide you to one. One of the best tips I have gotten is to enter the name of a product in a search engine like 'Google' with the word gluten. Often one of the first links will be the companies gluten statement on that product.

Welcome back.

Krista

[dionnek]

Welcome back. I've been here about a year now (wow, time flies!) and would not have been able to stick with this if it wasn't for this forum. Hearing how bad some people got and how much pain they were in has convinced me that the diet is worth it! I am so thankful that I was never too bad off, even though my biopsy showed completely flat villi. I am just so glad they figured out what was wrong with me before it was too late. This diet/disease does change your life, but so will not sticking to the diet, and I think that would be much worse! Good luck.

[blueeyedmanda]

Welcome Back,

You are always welcome here. I was in denial for a few months as well. It comes with the territory. I think you have to hit the ground before you pick yourself up. I know that was what did it for me, I hit my lowest point, from then on out I worked hard and getting better and staying as well as I could.

I think what has kept me going this time, is the support from everyone here, my fiance and his mom. My family lives away so I don't see them often. They are a long distance support as well.

[MySuicidalTurtle]

It sounds like it's time for you to start taking care of yourself, Jodi. Being gluten-free does not have to be limiting. Good luck and I hope you feel better!

Kristina Marie

[bookbabie]

Over the past few years I have hopped on and off of this site. I think I am in denial that I have DH and Celiac.

It is sooo normal to do the denial thing Jodi and to feel deprived sometimes. Let yourself feel bad for a minute then get over it by thinking about someone you know who has a worse health issue or handicap that can't be fixed by a change in eating habits. Let's face it, Americans eat way too many yucky, sticky, empty carb calories, so try to think of yourself as eating healthy, not deprived

[loco-ladi]

Well, I can't say "welcome back" as I haven't met you before, I am however pleased to meet you and am very glad you popped back into our little world...

I have a thought on "normal" however to share with everyone...

Everyones determination of normal differs, my sister did not think it was "normal" for me to want to leave my first husband, my friends don't think its normal that I dont like to drink myself into oblivion I however think it is "normal" to feel happy and healthy and if that means you have fun shopping with us and chatting with us all the better cause around here, "we" are all normal "they" are the oddballs

[jodikris]

Thank you guys all for the support. It's day 3 for me officially gluten free. I am still itching. I am pretty miserable. I was back in the hospital last night feeling really weak and disoriented....they STILL are blaming the dapson. I am kinda confused myself now....

[tarnalberry]

It may take some time to treat the problem - steroids are *serious* drugs.

While I never entirely understood how modifying your diet could be so difficult, just reading through the forum tells me you're not alone in that feeling by a long shot. Not everyone reacts the same way, and remember two things when your 'friends' tell you it's not a big deal:

1) they haven't tried it yet themselves (with the "for life" intention), so they are not talking from experience, but from conjecture

2) regardless of whether or not other people think it's easy, it may not be for you, and your experience is all that matters for you and all that you need to get through right now

Will this diet make you different than other people in this country? Yes, but you already were different. Will this diet have you eating different things from other people? Yes, but you already were eating some things differently. Will this diet inconvenience you more than if you didn't have it? Yes, but there's something else in your life that others might see as an inconvenience that you *like* having in your life.

Point being - it's all relative. And if it's hard... well, you've got support here to help you through it. It does get to be relatively easier. Gluten containing grains aren't essential for life, so this isn't some entirely unnatural process - the only reason it feels that way is societal pressure to conform to a diet that was picked by the masses. Now you get to be smarter than that!

[lcbannon]

I will just say Welcome. I am new to all this, just got lab results last week and have gluten free for about 2 months. I have learned a lot, been angry/depressed about it some, but with all the chronic illness I have in my life it is nice to know I have control over one of them at least. I have been able to find reciepes for many foods I crave. I wish you luck in your trials and sounds like you already know what a great site this is for info and support - hope to see you around more.

[VegasCeliacBuckeye]

As with just about anythig, it gets easier as time goes on and you maintain the diet.

Personally, I was diagnosed over 10 years ago.

I can be downright nasty and sarcastic when people talk ignorantly of my "condition" (this includes my girlfriend's mother).

At some point, you get to the point where you will want what is best for you (not necessarily what is easiest). When you make that decision and start to feel better, then it becomes routine).

I wish you the best and offer any advice I can.

BB

[IWantPopTarts]

Join the club. As you can see by my join date and number of posts that I've frequented this site, but never really contributed. I have been in denial for awhile, but now my health is making me have to come to terms with celiac.

I'm basically starving myself because there are so few foods I will eat and I have issues forcing myself to eat something I don't really like at all. The few things gluten free I do like I've eaten too much of and grown tired of eating them.

Now with the constant headaches, depression and anxieties plus my loss of short term memory sometimes and other symptoms I have no choice, but to try and change my ways. I'm afraid my denial has caused more harm then anything as I've gotten to the point where I eat 1 meal a day and maybe two every other day. I have no energy, I'm feeling bloated. I can

[VioletBlue]

At some point or another we all crave "pop tarts".

I too am having a hard time wrapping my mind around the forever part of this . . . whatever. I can't bring myself to call this a diet. A diet you can go on and off of and all that happens is you gain or loose a few pounds. This isn't about weight, it's about my very life. I know not sticking to a gluten free life could kill me much sooner, maybe take thirty or forty years off my life. But knowing that and saying that doesn't make it easier. I still have days if not weeks where it depresses me. I was diagnosed around the end of last November beginning of December. It's hard sometimes for me to hold onto the knowledge that if I eat that wheat cracker I will be sick. Part of it I think is that I ate those crackers for 44 years of my life without connecting cracker with being ill or dying. 44 years is a lot of habit and memories to overcome. It is hard. If anyone says it's easy I'd question their sanity.

There will be a lot of surprises along the way too. You'll learn a lot about yourself in the process. Can't guarantee it will all be good either You at least owe it to yourself to try. Try gluten free living for six months and see how you feel. There are lots of people here, lots of advice to help you. People, friends, family won't understand. It seems to be rather rare that they ever do get it unless they've been diagnosed themselves. But I figure there are a lot of things about other people I don't understand so it all comes out even in the end. All that matters is that you understand why you're doing it. You have to do it for yourself.

violet

[CMCM]

One thing that really helped me get a handle on this was the idea that just because you COULD eat something doesn't mean you should. Gluten is everywhere, in so many things, so everyone can eat it. But I've really become convinced that NO ONE.....Yes, I said NO ONE should eat gluten. Yet our whole country is stuffed and bloated with gluten, day in and day out. No wonder Americans have so many health issues. If people smoked an amount equivalent to the gluten they eat, they'd soon be in bad shape. If people drank liquor to the extent they eat gluten, they'd be raging alcoholics, all of them. So just because gluten is in so much, and because you can eat it continuously if you want, still doesn't make it good for you.

We should consider ourselves LUCKY to have learned how bad it is....for EVERYONE. And worse for some than for others, obviously!

[loco-ladi]

at the time I am posting this here are my stats for the forum:

Posts: 58

Joined: 12-February 04

Member No.: 804

50 of those are from the last month or so......

the first 8 or so are from when I joined and was asking questions......

from feb 04 until 2 months ago I was arguing with my dr and still have never had a single test done...... I had forgotten my password it had been so long, should have just taken the jump to go gluten free years ago and not wasted my life the way I did. I am grateful that I started weaning myself off gluten back then, I just didn't realize what it was being added to and occationally I would just say to heck with it something will make me sick so why not have that "insert any glutened food name here" then I wont have to worry if I will get ill or not.

We all come to the choice to stick to this diet/lifestyle at some point that is right for each of us, whenever it is then its the right time for us. Some will ucceed better than others but eventually we all will feel better, healthier and help others who will be here.

[jodikris]

I feel the same way ! I went to a nutritionist this morning. She thinks I may have Gluten Ataxia because I have been having what I can only describe as "spells" of weakness where I can't move my arms and head around. I am offically gluten free almost an entire week. It's a big step for me. She also gave me a ton of tips and label reading lessons. She is so nice. I wanted to cry when I left because I felt like she really understood how I felt. I am so anemic right now I am weak all the time. Hopefully the more time that passes the better I will feel.....

Jodi