Seeing Problems That Aren't There...!

[BabsV]

So, I'm 2.5 months post-diagnosis...slowly feeling a little better...but I've spent a huge amount of time trying to gather information and I think I might be stuck in a rut of seeing problems where there probably isn't a problem.

For example, I had this strange slightly red patch of skin on the side of my neck. It came and went...didn't blister or itch, just felt irritated. I was thinking maybe it was some sort of food allergy or reaction to shampoo/lotion...Scouring my food diary didn't help establish any sort of pattern linked to food. Changed shampoo/lotion/soap. Was stressing about it until I noticed a couple days ago that it is in the exact location where my hairbrush sometimes brushes my neck while I am curling my hair under while drying it. Well duh. I've been more careful the last couple of days and miraculously the irritated skin has gone away. Head. Desk. *THUNK*

Yes, I am presenting this in a humorous manner but it made me realized that I was sick long enough prior to my diagnosis that I don't know how to trust my body at this point. Does that make sense? I feel some days that my whole system is out of whack and while I can intellectually tell myself it will take time to sort out and get back on track, anyone have tips on how to deal with it day-by-day and not just let yourself be overwhelmed?

[IrishHeart]

Been there /done that

Because it takes so long for some of us to start responding to the gluten-free diet, it is frustrating and often, we think "Oh I must be reacting to this food, that lotion, this toothpaste.... or the air...."

You are still healing. Things will be up, down and all-around for months.

Sorry. It is what it is. I'm nearly 10 months in and STILL have symptoms I am dealing with and I am ultra-careful. My doctor said "Be patient. You've been malnourished for years and it will take some time to recover." I do not like that answer, but it's better than being sick and not knowing why for so long.

The people who miraculously healed in a few weeks or a month?---not the norm. Some folks take 6 mos. to 2 years.

Stick to the gluten-free diet, drink a lot of water, take probiotics, vitamins, exercise if you can and try to remain calm. Stressing over this---that is just detrimental.

Hang in there and try to relax. Can you do yoga? walk? Listen to music? have a massage? epsom salt bath? anything to soothe your body? It's been on hyper-overdrive and is learning to re-boot itself. The central nervous system is greatly impacted by celiac and so, you are understandably feeling a little "off"....I was the same way the first few months and now, I can sleep almost 5 hours straight and not feel like I am jumping out of my skin...something that was impossible for nearly 4 years before I was DXed.

It gets better, I promise!

[pricklypear1971]

I remind myself I could "function" on gluten (ok, not WELL, and not at the end...) and didn't panic at every red spot or tummy upset while on gluten. And there's no reason to start now (okay, there's a slight reason...,).

I just take a deep breath and move on.

Most days I can (much easier to do now OFF gluten).

But don't get me started on bm's!!! Oh geez, the shock of having more than 1 per day without being "sick" is still a stumbling block for me. I'm still amazed that every urge to go past the first one isn't D.

[heatherjane]

You're only 2.5 months into this. Some people feel 100% better immediately, but others (like me) can take quite a while before they start seeing results. The best thing you can do is just be very diligient about avoiding gluten, but try not to over-analyze. Not every ailment has to do with celiac or food allergies, but if you're experiencing a consistent issue over a long period of time, then get it checked out.

Basically, you just have to take this disesase one step, one day at a time until it's old hat. Otherwise, it will needlessly take over your life. You're better than you were on day one, and you have a lifetime to get it sorted out. Keeping that in mind helps me when I'm feeling overwhelmed.

Hang in there.

[BabsV]

Thanks for the responses. Nice to know I'm not alone. I am better than I was before starting the gluten free diet and my lack of patience gets me in trouble...since I feel a bit better I want to feel ALL better now! I need to get over that, I know. After being so sick that I was mostly stuck at home for months I need to work at getting out and about more, since when I'm a bit busier/social I seem to stress less. Am getting my exercise thanks to the dog and have bartered with a friend who's a massage therapist to get weekly hour-long massages (she received all the gluten containing food that was in my kitchen plus all the kitchen utensils, etc. I had to replace!) Intellectually I know I'm in the early healing stages but that lack of patience thing...*sigh* Baby steps, this is going to take baby steps.

[IrishHeart]

Thanks for the responses. Nice to know I'm not alone. I am better than I was before starting the gluten free diet and my lack of patience gets me in trouble...since I feel a bit better I want to feel ALL better now! I need to get over that, I know. After being so sick that I was mostly stuck at home for months I need to work at getting out and about more, since when I'm a bit busier/social I seem to stress less. Am getting my exercise thanks to the dog and have bartered with a friend who's a massage therapist to get weekly hour-long massages (she received all the gluten containing food that was in my kitchen plus all the kitchen utensils, etc. I had to replace!) Intellectually I know I'm in the early healing stages but that lack of patience thing...*sigh* Baby steps, this is going to take baby steps.

You cannot imagine how many times I have to tell myself this, too.."baby steps". My doctor was emphatic about how long it took me to get this way and how it will take to reverse it...yah, yah, I get it; I just do not like it! ...I told myself that I am not unlike someone who has been imprisoned and starved and it will take years to recover. There is no magic bullet to speed it up. The body is essentially "re-booting" itself.

I am very impatient as I am in constant joint/bone/muscle/nerve pain. Exercising is VERY difficult and tricky and I work with a physical therapist and a neuromuscular massage therapist. My muscles took a huge hit. For a while, I thought I'd be crippled for life. But I make small strides all the time. So, while the GI issues are better and the brain fog is clearing out, I still battle that and trying NOT to stress while in 24/7 pain (and unable to take ANY meds whatsoever!)

It is a mystery as to how I stay sane and do not swan dive off the nearest cliff A sense of humor miraculously keeps me going--and my supportive, patient and very sweet husband! I just want my life back. I know you do, too.

ONE THING THAT REALLY HELPS ME SEE THAT HEALING IS HAPPENING? I HAVE A LIST (3 pages!) OF all OF MY SYMPTOMS AND ONCE A MONTH, I CHECK OFF THE ONES THAT HAVE IMPROVED OR DISAPPEARED. It's very encouraging!

Just take ONE day at a time, nourish your body and know that healing is taking place. Best wishes!

[josh052980]

My best advice is this; DON'T LOSE HOPE! I'm about 7 months in, and I still, even as I'm writing this, have issues here and there. Once I was gluten free for about 4 months I got to where I was having a week, or even 2 straight where I had no symptoms, but then suddenly would feel it again. There's up's and down's, you just can't let the downs get to you too much. Trust me, it may not seem it now, but there will be a point where the down points don't last, and the high points dominate. Just hang in there and try not to worry about things too much, that could make things worse for you.

[mbrookes]

It is so easy to blame every little "off" feeling on gluten. I remember about a year ago I thought I was reacting to bourbon. Well, I was, but it was the amount...not the ingredients. Cut back, no problem.

We have to remember to use common sense. Not everything is related to gluten. Even very healthy "normal" people have bad days and get stomach upsets.

I have been gluten free for almost four years and I feel great most of the time.

[Jai]

SO good to read this! I've become a hypocondriac (no idea how to spell that!). Some things have been real and terrified me thinking that something else was wrong and some things I think I'm bringing on myself with all the anxiety. Right now, when I'm being logical I know that I feel fine, my only symptoms are caused by my own anxiety about not feeling well!

I figure that each good day that goes by I get a little more confidence in my body....

[Bubba's Mom]

I've felt like there's something really wrong with me. My GI and PCP told me that I should eat gluten-free and I'll feel fine. I don't feel fine. It's been about 3.5 monhs for me.

I still get gallbladder-like pains, tingling in my right shoulder blade and burp ups after eating. I know I'm not eating gluten, but those symptoms remain.

Most of the time I don't feel hungry, but force myself to eat something for the nourishment and so I can take my suppliments with a bit of food in my tummy.

I swear some days..I feel like I'm just slowly dying rather than healing.

[IrishHeart]

SO good to read this! I've become a hypocondriac (no idea how to spell that!). Some things have been real and terrified me thinking that something else was wrong and some things I think I'm bringing on myself with all the anxiety. Right now, when I'm being logical I know that I feel fine, my only symptoms are caused by my own anxiety about not feeling well!

I figure that each good day that goes by I get a little more confidence in my body....

Anxiety is understandable, given the fact that many of us have been ill for so long, sometimes having our symptoms scoffed at --or worse, ignored--by doctors. Getting a handle on the anxiety is a good idea because stress only causes wear and tear on the adrenal glands and digestive tract. I was in stress-mode from gluten for 4 years pre-diagnosis and I tried to do anything I could to reduce that stress as it impacted my sleep and my well-being so much. I went from doctor to doctor, no one knew what was wrong with me --and that just added to the anxiety even more. So, as I researched my symptoms (and I had dozens, I am not kidding) and looked for help, I took a stress-reduction class and learned yoga. Yoga--crazy, considering the horrible pain I am in--but, hey, I'll try anything to get well! So many doctors tried to tell me it was "just stress" or "hormones" or "grief' (my Dad had just died) but I KNEW it was something else keeping me ill. I just kept fighting for answers and it made me very stressed, of course. Unfortunately, the gluten I was was still ingesting(as I did not know that I was a celiac yet) kept that hyper-alert, revved up sensation going, no matter what I tried. I was a restless insomniac--a total mess.

Off gluten, healing, knowing I saved my own life---well, you can believe THAT has reduced my stress level from a "nutjob 10" to a much calmer 4...

BUT IT TOOK ME OVER 6 MONTHS FOR REAL HEALING TO START...YOU Have to be PATIENT. I KNOW it is difficult, but it will come and it will be amazing when it does. You guys may heal faster. Everyone is different. Just HANG in there!!

Do something you love, exercise, call a friend, go out and walk, meditate, get a pet---heck, come on here and read encouraging posts --and focus on the fact that you ARE healing. I watched ONLY comedies (TV shows, movies) for many months when I was very ill, thinking that laughter would help boost my immune system. And even now, I prefer to spend time with people who are UPBEAT and with fellow celiacs who "get it". I go to a support group, I have a half dozen new "epals" ---plus everyone on here. They all help encourage me that I am indeed, regaining my health.

The ones who are healed and say they feel great? I call them "the ones who have crossed to the other side" and I want to be like THEM and so, I push on. One day at a time. I once felt that "I'd rather be dead than live like this" when I was so ill, my hair falling out, losing massive muscle mass and brain function, in constant debilitating joint/bone pain, and dying a slow death...it was a nightmare. But I really did not mean it. I fought so hard to find an answer--as you all did--and now, I feel better as each month passes. Do not let this thing "psyche you out" and beat you. Just stay the course!

When you get the familiar anxious feeling, say to yourself, "I know what this is and I recognize it and now, I let it go! "...PM me if you want, and I'll reassure you once more! Cheers, Irish