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Sunday, January 20, 2008

DIAGNOSIS UNKNOWN





I do not want my blog to turn into a big blah blah about my health issues, but because so many of you have been praying for me I would like to explain what has been going on with me. Also, at this point it cannot hurt to put this out there and hope that maybe someone might have some useful information for me.



Lets go back about two years. I had just started a new job and I knew this job would be very easy on me. After a few weeks there I became so tired and run down. My hands and wrists hurt so bad that I could not even make a fist. Then I developed some white spots in my throat. I went to my family doctor and she did some blood work. She checked for mono and step-both were negative. My blood work did show some sort of infection so I was put on an antibiotic. After taking it I was still not feeling better and was put on two more antibiotics, one which was very expensive. (Thank God for the bank of mom and dad!) I still had the spots in my throat. I then headed to the dentist and found out that I had an abscess tooth. I then went to an oral surgeon to have the tooth removed. He felt this was unnecessary but I felt like this was the root of my problem so he removed it. I began to feel better. Several months went by and I was doing fine. Then one day my hands became very red, itchy and painful. I went to my doctor and she thought it was a chemical or food that I had come in contact with. I got some steroids and Atarax, but this thing in my hands kept coming and going. She told me I had urticaria, which is hives and told me to be thankful it was only in my hands. No sooner did I leave her office for the third time that my feet then became overwhelmed with the hives. THIS IS HOW THE HIVES BEGAN ON MY ARMS AND LEGS. THEY WERE NOT SO BAD AT FIRST. JUST ITCHY BUMPS- UNLESS THEY WERE ON MY PALMS OR SOLES.It was so painful to stand or walk. Then the hives became to cover my whole body. I was sent to a dermatologist. He felt like I was having a reaction to some food or medicine. I began to take a constant journal of everything that I put in my mouth. I could not figure it out. One day when I was having a very bad outbreak I headed to the ER. The doctors there were puzzled and even checked me for Lyme disease. Then one day my hives changed. They looked like they were in my blood stream. They were no longer on the surface. THIS IS HOW THEY BEGAN TO LOOK.(No, I do not look like this every day! LOL! Thank God.) I was scared and thought maybe I had become allergic to my asthma inhaler. I headed of to a different doctor. Two doctors saw me that day. They changed my inhaler but could not offer much more help. The sent me to an allergist. The allergist immediately sent me for a biopsy and massive blood work. There were some disturbing things in the blood work, but nothing that appeared life threatening at the time. However, the biopsy showed that I had vasculitis. When I went back to the dermatologist that did the biopsy he just shook his head and said he was sorry. He is the one who kept insisting that it was a food allergy.He was surprised of the biopsy result. He said there was nothing else he could do and I would have to see another specialist. Well, one evening we were watching Dr. G medical examiner and she was doing a autopsy on a woman who died from vasculitis. So I began to research and it was just to scary to read all of that. During this time I was also having some stomach problems. I had heartburn everyday and my food would stick and I would have to throw it up. So off I went to the gastro specialist. I was put to sleep and had a light put down my throat. Diagnosis- Eosinophilic Esophagus. He said this came from a food allergy! He put me on some different type of steroids. Then I began to do more research. During this time my asthma had also become worse. So with the vasculitis and EE and asthma it was beginning to look like I had Churg-Strauss syndrome. That was so scary. As I drove to work the next morning I cried and cried. I was so scared.This would be a life altering disease that could lead to death. I went back to the allergist and told her about the EE diagnosis and that they said it was a food allergy thinking that maybe the hives WERE a food allergy after all. She (and the other specialist) were and still are very insistent that I have some underlying illness. However, she proceeded to test me for food allergies. Surprisingly I came back with a serious wheat and egg allergy. Also I am allergic to rye, cinnamon, garlic, and pork. So for the past three days I have been living on bananas. Lesson one that I am learning- wheat is in EVERYTHING! Why make white bread and wheat bread if wheat is in both of them! LOL! I nearly walked out of the grocery store in tears. Eggs are also in a lot of things you would not imagine. My allergist still does not think that this is the cause of my hives but the wheat allergy could have a lot to do with my gastro problems. I feel ok except when I am broke out with the hives, which is pretty much every other day. Unless you have had chronic hives you can not even imagine what this feels like. It is like nothing I have ever had to deal with before. Your skin just burns and itches and if you try to take a shower the water just makes the burning increase. Most days it is just hard for me to get up and go to work. When my feet are hived it is the worst. I am on so much medication that makes me sleepy. I have prayed so much that changing my diet will make a difference. Of course I am still scared about the vasculitis diagnosis and I guess I will need to go to a specialist for that. Somehow I feel that all of this ties together. My allergist did do blood work to rule out the Churg-Strauss and my numbers looked ok for that. It has been 1 year and 4 months since my first hive episode. I am very tired of dealing with this. Some days I just want to give up. I can cope pretty well if I double my medicine dose and then lay down to rest. When I am active the hives are much worse and resting does my body well. Sandy, my dear hubby really wishes that I was able to quit work until we figure this all out. But this is just not possible at this time.
THANK YOU ALL SO MUCH FOR ALL OF YOUR PRAYERS. At this point prayer seems to be all I have. I will update you to see how this wheat and egg free diet works for me. It is very difficult considering that I cook for a living and am around food all day. Every night I pray that God will give me strength to not touch or taste the food. It may sound silly but it is hard to make 200 cookies or pizzas and not take a taste. This week will be a challenge, but I feel confident that I can do this!
((hugs to all))
sorry so long and i am sure that i left a lot out :(

20 comments:

Frogdancer said...

You poor thing. (I'm coming over all itchy just looking at those photos.) No helpful hints... just wanted to let you know that I'm thinking of you and wishing you well.

Our Red House said...

I am so sorry that you have had to go through all of this.

Hugs and prayers,

Kate

Sharon said...

Oh, you poor thing! YOu have certainly been through the ringer. I am so sorry you have gone through all of this. Your rash does look serious and kind of scary. I hope and pray that you will find out what you are allergic too and it will be something that you can give up pretty easily. I will continue to pray for you my friend.

Blessings to you, Sharon
P.S. I'll do some research too. I used to be a medical transcriptionist and some of your symptoms sound so familiar to me, especially the red hands and rash on your palms and soles.

nannykim said...

thanks for the update---so sorry you are going through all of this. I once had red spots all over my body and they kept getting worse (this was in college). They kept saying I had hives and that it was probably from stress(doctors are always blaming stuff on stress!!). On day , upon awakening I saw a little bug on the wall. I killed it and red came out---I thought that it must be blood and the only way an insect gets blood is by biting. So I asked the Dean if it could be bed bugs. They thought I was crazy---she said if it was bed bugs they would be under the bed on the rails etc. I went back and flipped the bed and you could her my screaming for miles ;-). It was loaded!! (they had used these beds during the summer for a retreat of New Yorkers---they later found other beds in the boys dorm infested---my bed had been moved from the boy's dorm right before the semester had begun!!! So doctors have such trouble figuring things out. I too have a wheat allergy. It took me 2 years to find out---it is pretty common in women over the age of 50 (I have recently learned---they just don't know it!). I was having terrible stomach problems and nothing was helping until I eliminated gluten (wheat, barley , rye, etc). I do seem to be able to tolerate oats. You have to be very careful about reading and understanding labels ! I can have corn--so most corn chips are ok -ie taco chips. You have to be careful of potato chips--some have wheat. Even some peanuts have wheat!! you will be surprised where you find it! I buy a gluten free bread that some of the Food Lion's sell, and Krogers, and health food store---these are usually made from rice (which we can have!!) and it is found in the health food section of the freezer. They make bagels etc and these can be found at the health food stores. I can eat fresh vegies and most other vegies. It becomes easier as you get used to it. you have to be very careful with soups!! I can't seem to tolerate msg either---a lot of people that have wheat problems have msg problems. Don't trust what waiters at restaurants tell you either---I have found that chefs don't even know what is in the ingredients. Watch out for soy sauce. Most have wheat, but not La Choy. So if you see soy sauce as an ingredient you shouldn't eat it! Anything with the creamed soups usually has wheat. Thankfully I don't have problem with eggs!!--that limits you---but I am sure with time you will find substitutes!! I have been praying daily for you!! I will continue to do so. Ps--I didn't get snow, but my daughter did up in NC!

nannykim said...

PPS--don't give in to the temptation at work---believe me it makes a big difference. Have something with you that you can eat as a substitute!! That really helps. They sell gluten free cookies , and lots of chocolate candy is gluten free and without eggs--so look and find something you can eat when you just have to have something sweet!

Barbara H. said...

I've only had hives once -- they think it was a reaction to penicillin, but I was on the 9th day of a 10 day course when it started and it seems to me it would have shown up earlier. But, anyway, I never want to experience hives again!!!

I can't imagine being allergic to wheat -- and I would so hate to give up eggs and cinnamon. One of my blog friends has children with food allergies and she often put up information and recipes. She is at http://zumfamily.blogspot.com/ She could probably tell you where to find and how to fix things without certain allergens.

Barbara H. @ Stray Thoughts

justlikeawoman said...

Could there be a coincidence with starting a new job and the onset of your symptoms?
Maybe you're allergic to something found at your workplace!
Just a thought...

Sondra said...

Actually I thought the same thing and did quit that job.Thought maybe it was stress there. I did not have syptoms for about a month or two and then they returned. So must not be the job!

Kimmie said...

Oh Sondra, I wish you could come over so I could hug you-big.

What a time you have had and to work with food on top of it. Do you think it could be something in your work environment (chemically?)

My second daughter (adopted from Hungary) has egg/wheat/dairy allergy. Diagnosed when she was 3 now 13. It has gotten better over the years, we can eat more things now than then. I tried spelt flour, as a lot of people who are allergic to wheat can tolerate it. We avoid eggs, but sometimes they are in things...in things diluted is better than straight up which causes hives and skin problems. Dairy...we do soy for her.

I joined a food co-op so I could buy the spelt flour in larger bags and could get the soy by the case (but now they have it at every grocery).

Praying God will heal you and give you strength and wisdom while you wait for his touch.

((((((hugs)))))))
Kimmie
mama to 6
one homemade and 5 adopted

Crystal said...

that looks frustrating. I have bumpy unknown rashes, but they don't tend to get that big. Have you been checked for allergies?

Hugs, and prayers
Crystal

Crystal said...

I meant do you know all your allergies. You say wheat and eggs, how frustrating, that's in darn near anything!

Kimmie said...

Sondra;
As I was praying for you today I wondered if you had tried to fast?
(I have seen fasting (with PRAYER) work!)
There are different types of fasting...if your husband would join you in fasting, maybe it would even be more powerful!

hugs and prayers
Kimmmie
mama to 6
one homemade and 5 adopted

Caleb Polando said...

Hello Sondra,
I had a wheat/gluten allergy. It started about 6 years ago with very severe stomach pains. I took a blood test and it showed my wheat count was very high. I stopped eating wheat for over a year and reintroduced it back into my diet. My doctor said this sometimes works. Now I have been eating too much wheat and have been dealing with hives all over my body just like yours that you showed in the pictures. Even when taking the antihistamine pills, I still deal with the hives.

I am going to my dentist tomorrow because I noticed for the past week, my bottom back tooth (possibly my wisdom teeth) is infected. I am hoping to God that the hives are a result of my tooth abscess, and not my wheat allergy coming back. I will pray for you that you persevere with not eating wheat.

Coming from someone that did not eat wheat for over a year faithfully, it can be done. I just had to go to the health food stores and buy the rice bread and rice flour and cook differently. As far as going out to eat, that was the toughest because a lot of the food additives and stuff they cook with have wheat in it! Don't give up Sondra.

God bless,
Caleb Polando
calebpolando@yahoo.com

Stacy said...

Over from Kimmie's...

I am so sorry to hear of your health issues. I had hives only one time (an allergic reaction), and it was TERRIBLE.

Praying that God will lead you to a correct diagnosis *and* a SOLUTION.

Love,
~Stacy

blue thistle books said...

Hi Sondra,

I came over from Kimmie's blog and I just want you to know that I am praying for you. I can't imagine how you must be feeling right now, I know it must be overwhelming.

I worked with a boy that was allergic to a variety of things, including wheat and eggs.

I usually cooked for him and he was still able to eat a very well, it just took more planning on my part.

I often made him chicken thighs seasoned with salt, pepper, rosemary & olive oil and baked in the the oven until the skins were crispy, a salad with romaine, tomato, and olive oil & vinegar dressing and a baked potato. He would have spelt, or rice bread if he wanted it.

There is no doubt that giving up wheat is not easy, but for the most part, I very rarely eat it myself, due to digestion problems and you will get used to it and still enjoy eating!

Hang in there and know that God hears you!

Blessings,
Hallie
Mycrazylife

Bobbie-Jo said...

I, too, came over from Kimmie's.

I just wanted to tell you that I prayed for you. I am so sorry about your illness. Hang onto God.

Marianna said...

I just clicked on your site from someone asking for prayers for you...don't remember which site! You have my prayers, but I also wanted to say I've experienced some of the same symptoms you are having. For over a year I suffered with respiratory problems and extreme cases of hives. I had just moved into a brand-new mobile home and it turns out I was reacting to the off-gassing of formaldehyde. All this to ask: have you been tested for chemical sensitivity? Your most recent post notes that you now have hives on your face...after working to help your daughter lay ceramic tile. What was in the mastic and grout? What were you laying it on--backerboard and plywood are both full of chemical compounds?

I will pray that you can find health soon. The hives you showed are debilitating, I know! It's been 13 years and I still remember that feeling! You might be interested in checking out Debra Lyn Dadd...do a google search on her and you will find her website that is full of very useful information.

Feathering My Nest said...

Dear Sondra, I just read this post. I'm so very sorry for you. I do not want to go down a bunch of rabbit holes, but I just want to throw this out in case it's the answer. Could it be that you are allergic to the building you are working in? It happened to my cousin Lori. There was mold in the walls and carpet where she worked and she became very sick. I will keep on praying for you. Hugs, Kathi

GOATZ said...

Hi Sandra,

I was googling up 'hives' since I'm having them right now, I've been at your "starting stage" for over a year now. I can not imagine how it's like to be in your situation, I hope it's not as serious as it appears :( and that you will soon find out the underlying cause of your suffering.

Courage,

goatz

Laurie said...

I am currently suffering from the same issues, and have been googling like crazy to find any sort of help for these horrible hives all over my legs and arms. The dr's are blaming it on bug bites, yet we have checked, double checked and even TRIPLE checked beds, blankets, pillows, carpets, our cats with not a bug in sight.

They are only getting worse, and despite telling the hospital multiple times that they started after taking a prescription for delaudid's 2mg (which is in the morphine family) for my stomach pain, they still refuse to send me for any testing at all.

I constantly cover myself with the hydrocortizone cream they gave me and i feel like a benedryl addict right now, but i am having no relief and every day i have about 5-10 new hives.

I can completely sympathize with your pain, and annoyance to the itching...and i can only hope and pray that the dr's will figure your problem out as soon as possible, and that it is nothing life threatening.

For myself, if ANYONE has ANY new information since this blog was posted, i could definately use some advice as well. Seems the internet is more useful than the dr's these days.

Thanks and Good luck!!
Laurie

bleeding_imperfection@yahoo.ca