Is All Of This Really Related?

[Tabasco]

I thought that researching Celiac Disease and considering going gluten free would be not so bad. I don't know if I have it but after reading everything I have read, I definitely have most of the symptoms. I'm sure that if I am diagnosed and do change my diet (my life) I will feel so much better. But I have to say the more I read the more upset I get.

What is making me upset is WHAT IF THIS IS THE ROOT OF THE MEDICAL ISSUES I'VE HAD MY WHOLE LIFE? That means that I have suffered needlessly MY WHOLE LIFE in one form or another. And probably the worst was the 15 years of pain suffered from the horrid rash on my hands. The physical pain was bad but the emotional pain...gees!!!!! It was so embarrassing!!! Sometimes wearing bandaids on all of my fingers just to cover it up.

Then there's the gut pain. All those years of bloating!!!!!!! All of that chronic constipation!!!!!!! Not being able to go to the bathroom for a week at a time!!!! And still an issue. I just can't go to the bathroom like a normal person. ARGH!!!!!!!

The headaches...let's not forget the headaches. Since I'm 14 yrs old I have had headaches. That's 30 yrs of headaches...almost daily.

I've had knee pain, wrist pain, shoulder pain intermittantly since I was a teenager.

I have chronic neck and back pain. I have arthritis in my spine. I had degenerative disc disease in my neck at 14 yrs old. What kid has degenerative changes at 14?

Now I have this stupid itchy rash on my back and chest that WILL NOT GO AWAY!!!! I've had it for 7 yrs now and it refuses to heal. The more I put on it the worse it gets so I have decided to stop treating it until I get diagnosed (or not diagnosed.)

My appt is in a week. I hope I get some answers. I am feeling a little pissed right now. I don't know at who or why but I am.

To add insult to injury, today my coworker yells across the room "what's that on the back of your neck?" Like I needed that!!! It's a freakin' rash!!!!! Thanks for pointing it out. I didn't know it was there!

ARGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[darlindeb25]

You are right, and you have every right to be angry. Many of us have suffered our entire life with issues. I had aches and pains in my 20's and 30's, my mom told me I was too young for all this complaining. By 40, then I was an age that complaining was ok, because, "You are getting older, and aging sucks!" All those years, my nerves were dying a slow death, causing all this pain. Yet, the doctors didn't know what was wrong. I was told I had a nasty, recurring virus, colitus, IBS, stress, nervous stomach, and my personal favorite, "It's all in your head, you should get some therapy." I had panic attacks, anticipatory anxiety, and agoraphobia. Then I developed carpal tunnel, which is a form of neuropathy. I have had headaches for years, still do.

When my sis and I finally found out about gluten, it was like a miracle. We finally had an answer to years of pain and misery.

I totally understand your anger. Now though, get better, be thankful you found out about gluten. It definitely sounds like you have DH. Are they testing the rash too?

[ravenwoodglass]

Your not alone. And doctors wonder why we lose trust in them. I don't show up in blood work but do you think even one doctor told me to give the diet a try? Do you think even one of them tested my son, we could have both been poster children for celiac. Nope just handed us more pills, pushed for antidepressants that caused serious lifethreatening side effects for both myself and both my children and tryed to tell me that I 'wanted' to be sick and it wasn't really bad. Well it was bad, bad enough that my DD told me when she was around 14 that the family would understand if I committed suicide. How to get over that anger, well I don't know. I don't think I ever will.

I live with it and try to help others that are in the same situation I was. For me that provides the most emotional healing.

Have you started the diet yet? If you are done with testing and simply awaiting results go ahead and get started on the diet. It can take some time for the skin issues to resolve but I noticed that I wasn't getting any new outbreaks within a couple of weeks of stopping the gluten. The lesions were horrible and worst on my face but fortunately the scarring there isn't as bad as it was on my back. For the first couple of years though even the smallest amount of CC would bring a few back, but never as bad as prediagnosis.

My family suggested that I write letters to all my former doctors after diagnosis, especially the neuro who blew off my UBO's because he was clueless that they were celiac related. I did write letters, but I never sent them as they were so full of anger. They were however very helpful in getting the anger out.

I hope you heal quickly and are soon feeling better than you ever have.

[Tabasco]

You are right, and you have every right to be angry. Many of us have suffered our entire life with issues. I had aches and pains in my 20's and 30's, my mom told me I was too young for all this complaining. By 40, then I was an age that complaining was ok, because, "You are getting older, and aging sucks!" All those years, my nerves were dying a slow death, causing all this pain. Yet, the doctors didn't know what was wrong. I was told I had a nasty, recurring virus, colitus, IBS, stress, nervous stomach, and my personal favorite, "It's all in your head, you should get some therapy." I had panic attacks, anticipatory anxiety, and agoraphobia. Then I developed carpal tunnel, which is a form of neuropathy. I have had headaches for years, still do.

When my sis and I finally found out about gluten, it was like a miracle. We finally had an answer to years of pain and misery.

I totally understand your anger. Now though, get better, be thankful you found out about gluten. It definitely sounds like you have DH. Are they testing the rash too?

I have every symptom you mention including the "all in your head" variety. My mother also used to tell me that I was too young to be so tired.

I have had peripheral neuropathies but not carpal tunnel. I have been to no less than 20 dermotolgists in my life...5 in the same practice...and NO ONE has ever suggested celiac or gluten as a culprit. So why to we have to fill out a history if they don't really use it to solve a puzzle? If I come to your practice for 4 years with a rash and you all give me something different and give me a different diagnosis every time...isn't that a clue?

[mushroom]

You have every right to be angry! Doctors should be detectives. Imagine a murder scene where you have a female victim who has had her head cut off. There is blood everywhere. There is a bloody machete lying at the scene with bloody fingerprints on it. There is DNA all over the house, doorknobs, in the bathroom, skin under the victim's nails, trace hair at the scene, a skull cap lying in the bedroom. Then imagine a bare-headed, blood-covered man found wandering down the street with scratch marks on his arms. Imagine that there is a letter from the victim in his pocket telling him she does not want to see him anymore. Nah, none of that could possibly be connected, could it?? They take the man to the hospital for treatment of his scratches. Crime remains unsolved . Not enough evidence. Would we put up with that from our police officers???

Now, maybe hunting down celiac is a little more complicated than the above scenario, but doctors are supposed to be smarter than detectives, and if you don't want to be a detective, don't become a doctor, simple as that. And once you make the decision to take peoples' lives into your hands, you have a duty to keep current with medical research, particularly if you are a specialist, but just as much for a GP who has to know when to refer and when it is within her expertise. And Continuing Medical Education does not consist of attending a conference in some jazzy resort and sitting through a couple of presentations, all the while figuring out where you will eat dinner that night and wondering if you packed the right golf clubs for the course. And then once you have actually aquired that additional knowledge, to use it and keep digging until you solve the case. Here's a prescription, see ya later, just isn't good enough. Any GI who is not fully informed on celiac has not been doing his homework. Any dermatologist who does not think of testing for DH has not been doing her homework. Ditto for any dermatologist who biopsies the lesion itself instead of beside it or who does not realize that there needs to be an active lesion. However, as I have stated elsewhere on here, and probably often, dermatologists are unfortunately not the brightest bulbs in the room, and after seven of them I have found only one worthy of the name.

Why do we have to fill out a history? Certainly not to provide information to the doctor because most doctors I have come across don't even look at them, It's part of office procedures, that's all. They then proceed to ask you half the questions you just answered on the history, but leave out the important ones. And when you try to provide that information orally, they say that's not relevant, so the clues that might help them are dismissed. How many doctors do you see actually consulting all those reference books they have in their offices during your visit?? My PCP does, but she cheerfully admits there's a lot she doesn't know and I appreciate that. Most of them, seem to think it a sign of weakness to admit they don't know everything...

Sorry, end of rant. Feels good to get that off my chest.

Tabasco, I do hope you have come to the end of your search for answers and that within no time you are leading the kind of life you should have been leading long ago. Ravewoodglass, every time I read a post of yours I feel your pain and your anger so acutely. It is our lives that they have wasted. And they don't care.

[brit-nik]

im only 22 but my symptoms that were ALL caused by gluten have been there all my life. back pain, joint pain, psoriosis (covering my back, head, cheast, face), acid reflux, "IBS", my asthma (allergy induced), and the worst of all my miagraines. i have miagraines to the point that i was ripping my hair out. they would last 1-2 weeks at a time accompanying : regergitation, diarhea, fever, and obviously the extreme pain.

all they want to do is give you pills and in my case the pills were making the miagraines worse because they contained gluten! also they told me i was so fat, 1 month after i went gluten free i had lost 20 pounds and my bloating went down. all the money i have wasted on pills and doctors visits makes me so angry becuase if they would have causght this earlier i would have had a better quality of life.

i was the one who suggested celiac they told me impossible your too fat! celiacs are under weight.

thanx for letting me rant,

brittany

[Tabasco]

Next Monday is my appointment. I am trying to load up on gluten. I think I'll have pasta with loads of garlic bread the day before so I can be good and itchy!!!

Thanks for the responses y'all.

[one more mile]

Why would you hurt yourself more by loading up with Gluten if you think this is the problem? When I went off of it and got better people saw the light. Hurting me days are over!

You get over the anger once you can grasp the joy and gratitude of being better. I spent 14 years on antidepressants. Now I wake up oddly happy every day. I actually asked my Doctor if he thought I was manic. He said no your normal, it will take a while to get comfortable with it.

[Tabasco]

It seems that this rash thing waxes and wanes and I haven't a clue of why it's better sometimes and worse others. For some reason, my back was a lot less red and itchy through the weekend and seemed to be improving over the last couple of days. Well, yesterday, I didn't resist tempatation and had a chicken biscuit from Chick fil a. After about an hour my belly started rumbling and cramping a bit and I started feeling a little nauseated. I thought that maybe this did point more toward gallbladdeer than celiac. Last night for dinner, I had pasta. Well, this morning, I have a brand new batch of itchy, red bumps on my chest. Hmmm? Curious.

[ang1e0251]

It seems that this rash thing waxes and wanes and I haven't a clue of why it's better sometimes and worse others.

I think you do know.

For some reason, my back was a lot less red and itchy through the weekend and seemed to be improving over the last couple of days. Well, yesterday, I didn't resist tempatation and had a chicken biscuit from Chick fil a. After about an hour my belly started rumbling and cramping a bit and I started feeling a little nauseated. I thought that maybe this did point more toward gallbladdeer than celiac. Last night for dinner, I had pasta. Well, this morning, I have a brand new batch of itchy, red bumps on my chest. Hmmm? Curious.

You were off gluten and your back improved. You ate gluten, your stomach complained and your rash became worse. Pretty strong cause and effect, seems to me. Didn't you say how angry you were about not being told about celiac disease and GI? Why are you eating gluten?

[GFtraingirl]

Tabasco, I feel for you and I understand your anger. It took 25 years for me to realize that I should ask for a gluten test - and my results were off the chart. Had complained to several doctors about ALWAYS being sick when I ate, but not one suggested gluten. After years of research and testing, I finally figured it out myself. What is even more incredible, was the fact that I had been gluten free for ONE WHOLE MONTH when I was tested - my numbers were so high still that I only later realized how sick I had been after talking with a good naturopath.

Now I am dealing with hypothyroidsm, and even after three years I have not yet found the best medication. After six months on Armour, I have developed hives, heart palpitations, dizziness and tiredness to the point where I cannot work. I am waiting for test results, and will probably go off Armour.

So, you are not the only one angry - I feel for you, and hope you will find answers to your questions. I hope you have found a good doctor who is open to more unconventional treatments; I believe that the best treatments for us as Celiac patients, is with alternative health care providers. We not only have to stay away from gluten, but beware of the other secondary health problems that often come along with Celiac. A lot of regular doctors have not been trained to deal with all these secondary concerns.

Good luck to you! I hope you get the answers that will help you feel better soon... :-)

[summerteeth]

I am in the same boat... I have had symptoms since birth. My mom told me the only thing she could feed me when I was a tot was meat and veggies/produce. If she tried something else, I was absolutely unbearable - screaming, crying, etc. Well yeah... I was in pain! And my pediatrician just told her I was "finnicky". Yeah... that didn't provide much comfort. Then, I started getting migraines at 8 years old. I have had 6 MRIs for migraines in my life. At 8, they told my mom I had migraines because I was ADD. So I was put on a medication that made my panic attacks come out from hiding. Ten years later, at age 18, still on this ADD medication, I was told my panic attacks were caused by Bipolar disorder. Well... four more medications. AT age 20, I stopped taking everything. I knew I didn't have ADD or Bipolar disorder. Finally, at 21, I saw ANOTHER new doctor and she almost immediately ran tests for Celiac disease. After all that time, pain, and medicine, I FEEL BETTER.

But with all of that aside, I am not going to lie, I still get angry (and so does my mom), but I am glad, extremely glad, that I know now. I feel better now than I did as a child. I appreciate things more. I learned how to cook and bake out of this - dishes that I never would have imagined I would have liked. I learned how to grocery shop and how to pick the best produce available. So in that sense, I am grateful.

But seriously... people need to know about celiac and need to get tested for it if they suspect that it could be a problem.