Testing

[casnco]

I am new to this board but I need to vent. I was diagnosed w/DH in November (officially) I suffered with symptoms all summer long. Went to regular family doctor, whom I am sure would have rather been talking to the wall than trying to figure out what was wrong with me. She sent me to a rectal surgeon!!!!! I went for an initial eval and knew this guy wasn't for me.

I went back to my office and was invited to a lecture on Celiac disease. This has nothing to do with my occupation. Out of curiosity I looked up Celiac disease on the internet and low and behold, I had most of the symptoms they were talking about. (Now I apply caution here because I am somewhat of a hyper-condriac {sorry, I do not spell very well}) But I eliminate the obvious gluten from my diet. This is August. I eliminate the ovious gluten from my diet and I think the symptoms are lessening. But life, as it can be, turned up the stress volume on me. So I bought a lovely herbal tea to relieve stress. Whoops!!! Wrong move, Barly!!! Broke out massive, elbows, back, stomach, neck. I was a mess. Well, in my deepest wish not to have Celiac I decided a skin doctor should be looking at a skin disease. So I made an appointment and got right in. He looked at me and said he thought is was just some simple dermititis. I mentioned I had been reading about Celiac, he grined and said something like he doubted it but lets do a biopsey to eas my mind. GREAT!!! Lets rule it out. Opps, he called and apologised he was wrong and I was right. (this is November) He recommended I call a GI doc and consult with a nutritionist. I called the GI doc. Now it is March and I am finally going to have the testing done. One because I want to know if there is damage, even though I have been doing my best to be gluten free, and Two because I still have GI symptomes.

Well, I said all of that to say, I am a MESS over going in for this testing! I have been crying all morning. I feel like I am having a nervous break down. I wish I had vallum and I have never wished for anything like that In my life. I am a healthcare worker and have witnessed many of these procedures. I know the doctor who will be doing the procedure, I know most of the nurses that will be assisting him. I couldn't be in better more competant hands. But I am a Frigging mess.

Has anyone else had uncontrollable emotions during all of this? I am usually a pretty stoic woman. Normally pulled together and in charge. But this is bringing me down in a bad way.

I know there are worse allergies out there. Imagine if we were allergic to soy. Now that is a point where you have to shop in special stores and cant put ANYTHING in your mouth from a resturant.

Any input or kind work would be so appreciated right now.

Thanks

Debbie

[MySuicidalTurtle]

A lot of us feel like a mess because this is a lot to deal with and so stressful. It is really helpfull (and normal) to see a therapist to help get yourself straight. Also, your doctor can prescribe you something. I know I do both, personally.

You may have to make sure you are back in gluten for the tests. They are normal to have for this disease so you are right about not having to worry but it is really hard not to!

A lot of people on this board have soy allergies and can shop and et out, just as we can.

Now that you know what you have (at least the DH part) you should get ready to start a brand new and healthier life!

[cdford]

My corporate disability finally refused to pay me because they had decided that it was all in my head. I had to go through my church and find a psycologist who could help. It only took a handful of visits to help me figure out how I could more effectively cope with this life changing situation. With all of the malabsorption issues, the constant symptoms, the lack of understanding of the disease, and the drastic change it requires for you and everyone around you, no wonder we often have to get help to sort it out.

One thing you may want to be aware of is that unless you have been taking in gluten regularly, your tests may come back with a false negative. No matter the results of the GI tests, you are positive for DH and will need to be absolutely and completely gluten-free for the remainder of your life. Especially with DH, be sure to check all chemicals that come into contact with your body from soaps and shampoos to laundry detergent and rug cleaners. We had to have all our furniture cleaned as well since we had been nibbling gluten items on it and the crumbs and flours were down inside. Even once I was gluten-free for a while, every time I sat on the couch for long I began to itch and break out.

[ianm]

Doctors were of absolutely no help to me. This website has been great. This is not the end of the world. I don't look at it as a disabilty. To me it was a wake up call to take better care of myself. I have been gluten-free for a little over a year and my life has never been better. You will have to be dilligent about what you eat but in time it becomes a habit and you won't think twice about it. Yes you will get nailed with gluten from time to time but as your health improves it gets easier to deal with. I don't shop in special stores and have had very few problems with restaurants. We've all traveled down the same road you are on and it does get better.

Ianm

[casnco]

Thank you all for your responces. It's nice to have somewhere to vent where people understand.

I know my test my come back negative tomorrow but I need to know what is going on. My GI doc said He didn't want me back on Gluten (thank God, I couldn't have done it) because I am still having GI problems. He wants to rule out every other GI disease also.

Joy of Joys, I just started my prep. How much fun is that!

[cdford]

At least the prep is the worst part. Other than a lot of gas and a little sore throat, the upper is a no brainer. The prep for the lower is the worst of them all and at least you know what goes into your after it is finished...you certainly start out clean!

[plantime]

Go ahead and vent. You are talking about a very real fear, one that many of us have gone through. I didn't go to a therapist to help me cope, I used a Life Coach. She taught me skills so that I can cope without relying on other people. Sometimes, just having someone to tell it all to helps immensely!