What Do I Have?

[gagliat]

Hi, this is my first time here. I have enjoyed reading the posts. I need help to figure out what is wrong with me. In January 2005 I woke up one day covered head to toe in hives, my throat felt like something was stuck in it and I had heartburn, which I've never had ever. I went to my doctor and she gave me Prednisone, it made me sick. She gave me zyrtec and Prevacid, neither helped. Finally in March I went to a gastro and we did a upper GI, it didn't show I had any ulcers or acid reflux. My doctor sent me to a dermatologist for my skin because my hystamines were at the surface and I itched all the time, he gave me a shot of Kenalog for that and said he couldn't do anything else for me. My doctor then put me on Lexapro, I'm not sure why, I guess she thought I was depressed, that didn't help. I get constipated and am not regular. I so look pregnant, my stomach bloats and gets hard. I get cramps in my stomach before a bm. I breathe fire alot and it feels like something is dead and burning in my stomach, then I breathe fire with halotosus. The middle of my chest is tender and feels like a pressure on it. WoW, what else. Everything I eat upsets my stomach and I feel naseous or so full feeling. Sometimes the pain migrates to my back. Sometimes when I drink liquid it feels like it is floating at the bottom of my throat. I go to a nueroligist for migraines and he gave me Zelnorm, I took it for 3 months and quit because it didn't seem to be helping. He thinks I may have a food allergy, but that is as far as it went. So far this year I have been to the doctor over 20 times trying to find out why just overnight I fell apart and am miserable. I have an appointment with my gastro in a week because I'm worn out!! Also if my doctor tells me take Citrucel and come back, I may faint!! I also would like some acknowlegement that I am suffering, not being a hypocondriac as some may think. I then came upon your website and thought that maybe I have celiac disease. What is everyone's thought? Can you help me? Thanks Tina

[Guest DanceswithWolves]

I'm shocked that your Gastrologist didn't tell you you had IBS like mine did.

Amazing.

I tell ya, between the insurance companies (mine is actually trying to find out if my Dr. appts. were a pre-exsisting condition) and the doctors themselves, they are all running a pretty good scam.

[nettiebeads]

First of all, welcome to the forum. Second, I'm sorry to hear you're feeling so miserable. At least everyone here knows what it's like to have your body feel like it was betraying you, at best, and attacking you at the worst. Have you read the short list of the 200 or more symptoms of celiac disease? Believe it or not, constipation is one of them. That, plus the gas you described makes me think that it is a possibility. Ask your gastro to do a blood panel for celiac disease. It's non-invasive, inexpensive and could help rule celiac disease in or out. Even without the bloodwork results, I would recommend doing the gluten-free diet as soon as you get home from the dr. One, it couldn't hurt, and two, after a couple of weeks on the diet, you may actually start to feel better.

The gluten-free is another way of dx celiac disease. (my good ole gp did it that way for me 9 yrs ago).

I sometimes get the impression of drs that if what's bothering you can't be treated by drugs, then there is no medical condition for them to treat.

Some more questions for you:

Age?, nationality? (norther europeans seem to be much more suseptable to celiac disease. I'm half swedish), anything else going on in your life when you woke up and your body had been replaced by an alien one? Stress, viral infections and pregnancy can tip the scales so that if you have the markers for celiac disease, it can develop.

I sure hope you are better soon, keep us posted!

[Guest nini]

Even if it's not celiac, gluten intolerance is always a possibility, as well as having multiple food allergies along with it.

It's so frustrating and scary to have your body attacking itself and you have no idea why. If you can't get your Dr.s to run the tests for you (and regardless of the results) I suggest you try the gluten-free diet. IF you are going to want test results (which may or may not show anything) then don't stop eating Gluten until then. My personal opinion is that if you try the diet and it helps your symptoms then you have your answer.

My mom says that I had hives that covered me from head to toe from the time I was first started on people food... So yes, hives can be a symptom, so can constipation, and the feeling you describe in your stomach, most def. a symptom.

Good luck and keep us posted!

[gagliat]

Thank you all for words a support. It sad to say that you would like dto diagnosed with a disease, just so you can move on with life and and do something for yourself. I find it frustrating that we have to try to self-diagnose and present our ideas to the doctor, because, you are right in the fact that the medicine pushing cure is what alot of doctors are all about. I'm a white female of german/mix descent, age forty and feel like a puffalump in the prime of my life. This whole thing has halted my concentration, energy and get up and go ability, I sure hope my gastro will be positive and move forward. I do have the possible chance to get into the University of Iowa Celiac Clinic, if my gastro will refer me, they have two labs there that test for celiac. Thanks to everyone's input and I hope to talk to you soon. Tina

[jcgirl]

Wow, I believe this is the first time on this site that I read about being covered with a rash from head to toe. I am 41 now, back when I was 19 I woke up covered in hives and every single joint in my body was swellon. I could not even go to the bathroom without assistance, hurt to much to move. It happened again about 15 years later, but not as bad. The doctor's as usual had no answers and wrote it off to an allergic reaction. Allergic reaction to what????????????? They never bothered to do any testing to find out, go figure! I am currently awaiting test results from new GI and I noticed on the lab form that he was also testing for lupus. Must be because of the history with the rash and swelling. You may want to look into that as well.

[julie5914]

My personal opinon is that a DO or someone who practices functional medicine would be good for you. They look at the whole picture and look for ice bergs instead of just treating the tips of them. Especially if the celiac blood panel does not answer your questions as more investigation will be needed. I would not let this rest until you find out what is going on! How many Americans take better care of their cars than their own bodies! www.functionalmedicine.com is where I found my doc. Better than just picking a name out of a phone book!

[gagliat]

Yeah, my doctor didn't really care where the hives came from, she just wanted to treat them. My skin was miserable for two months, now I itch like with dry skin, but no hives since. I feel like a doctor's pin cushion for medicine, they don't want to get to the bottom of what is wrong, let's just try this drug, that drug. I'd like to be drug-free or close. I've spent several thousand dollars this year on this whole thing which includes dr visits and meds that don't work. It is very frustrating, I'd have one heck of a great running car by now!! I guess I'll wait til I see my gastro and go from there. I'll keep pluggin along!

[ravenwoodglass]

Yeah, my doctor didn't really care where the hives came from, she just wanted to treat them.  My skin was miserable for two months, now I itch like with dry skin, but no hives since.  I feel like a doctor's pin cushion for medicine, they don't want to get to the bottom of what is wrong, let's just try this drug, that drug.  I'd like to be drug-free or close.  I've spent several thousand dollars this year on this whole thing which includes dr visits and meds that don't work.  It is very frustrating, I'd have one heck of a great running car by now!!  I guess I'll wait til I see my gastro and go from there.  I'll keep  pluggin along!

<{POST_SNAPBACK}>

Please be sure to try the gluten-free diet even if blood tests come out negative. I was blood tested (and others) over and aver again over a 5 year period and and our family was spending 17,000 a year on co-pays alone. The gluten-free diet was the only thing that helped. The hard part was finding a doctor to do a 'true' elimination diet. I finally found this little elderly allergist, he sat across from me and took notes on an old underwood typewriter with carbon paper during my visist, I felt like I had stepped back in time, but we finally found my problem, celiac - gluten intolerance. Try to find someone to guide through the elimination diet, it is not just dropping something out of your food for a couple weeks, you start with very little 'proven' foods and then add on. It is a slow process but it will pinpoint not just gluten intolerance but any other intolerances, soy, dairy, etc, as well. Good luck and don't give up.

[mommida]

Welcome to the board. Everyone has all ready posted much of the same things I would have said. Your doctor will probably put a diagnoses of IBS on your sheet, otherwise he/she won't get paid. The scariest thing; when we were trying to get our daughter diagnosed, the doctors were going to test her for everything but Celiac. She was going to be tested for Luekemia and other types of cancers before even checking for any type of food allergy.

Laura

[gagliat]

Thanks for the words of wisdom and I will try to be addiment about getting tested for food allergies, as I seem to have a problem with almost everything Ieat, but I haven't stopped eating the items I know aren't helping me until after I go to my dr. It has been a long process and I am tired of feeling unergized and bloated, nauceaou, etc. I will go on the gluten-free diet after testings and hopefully help myself. thanks !