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Testing And Symptoms

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Over the past few years, I have been bouncing back and forth between doctors (family doctor, doctors of internal medicine, immunologist, allergist, dermatologist...) because I have been experiencing spells of fatigue and weakness, joint pain, muscle aches, depletion of muscles, weight loss, pain on my left side, diarrhea, constipation at times, leg numbness, irregular menstrual cycles, muscle stiffness (in the morning or after sitting for extended periods of time), pins and needles in my hands and legs and blistery hands. Particularly after I eat, I sometimes get really hot and hives appear on my stomach and trunk, while red blotches appear on my neck.

Originally, it started a few years ago and my doctor ran some blood work and it appeared that my white blood cell counts were abnormal and in addition to this, he suggested that I may have an allergy to wheat, soy and egg whites, so he directed me to see an allergist.

I visited with the allergist who informed me that I have no allergies to food, only a very slight allergy to egg whites, but I do indeed have many other allergies to trees, mold, grass etc., so he put me on a high dose of zytrec.

Over time, the symptoms increased, I continued to lose more and more weight (sometimes 5 pounds a week---I did Weight Watchers at got down to 131 pounds about 4 years ago, but now it is getting scary as I am eating normally and I am down to about 108 pounds) and the hives and body temperature increase continued to worsen.

This past October my symptoms continued. I was having muscle aches, stiffness in my neck, blurred vision and dizziness (on top of the significant weight loss),. Since I work with children my family doctor ordered me to go to the Emergency Room. I went to the ER and after running some lab work my doctor said that "I had a virus probably caused by my allergies." I followed up with my allergist and family doctor who were very concerned with some of my counts that were read at the hospital. The doctor ordered several more lab tests as well as a CAT scan of my abdomen (she wanted to rule out things such as lymphoma (which could have been do to my blood levels), hepatitis, mono and several other viruses. Most recently, my doctor ordered lab work to test for Celiac. My levels came back a little high, so she referred me to a GI doctor. the GI doctor said I was "screaming sprue," so she wanted to get a biopsy. I went for the endoscopy this past Tuesday and received a call from the office saying my test was "negative of sprue." The doctor is away for a few weeks, but I am scheduled to see her as soon as she returns. I have been trying my best to be gluten-free over the past 2 weeks (since my original doctor said my levels were high) and I have been feeling much better. I haven't experienced any hive at all, but I am still experiencing frequent diarrhea and gas. Is it possible that I could just have a sensitivity to gluten? Do these symptoms "scream sprue" to you as well? I've been living with these symptoms for years and for a second there I thought the doctors were on to something, now I feel like I am back to square one--but yet I am feeling much better after only 2-3 gluten-free. All of this information is probably a bit too much but I figured my best chance would be checking with those who have already experienced this

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Celiac.com Sponsor (A8):

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;) well--if i were you i would go completely gluten free--if you already are feeling better then it must be helping--the diarrhea may take a while to completely go away and you do have to make sure you are removing all gluten from your diet--there is no almost gluten-free with celiac or gluten intoleranall the way or nothing--otay--feel better---deb


Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I have had many of your symptoms in the past. I was

treated with allergy shots , hay fever, grass, trees, etc.

In 2003 I got much worse. My eyes were red and itchy,

I started to have GI symptoms along with "Brain Fog",

and shimmering pools of light in my vision. In addition to

that I had severe pains in my neck, shoulder and legs.

I was referred to a GI doc and I had positive bloodwork

IGA and IGG were elevated. I also had an endoscopy

which came back Neg for Celiac and Neg for villi damage.

Also I do not have the gene for celiac, but I know I have

it. My DR and I have been going round and round about

my going back on gluten and dairy. He wants me to try

having spaghetti or pizza and I refuse.

Since going gluten and dairy free I now have no allergies,

no pain in legs and neck, no vision problems, no more

red splotchy neck( I had that too) no GI problems and

I have lost almost 20 lbs. Why in the world would I want

to eat something that has caused me so many problems

He says he can't prove I have Celiac and he can't prove

I don't. That is enough for me.

I would encourage you to stay on the gluten free diet.

I'm sure you will feel better. You may also have to go

off dairy, I did. If I can help you anymore please let

me know. :)

The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller

Judy- Gluten Intolerant

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I agree with Judy. I don't care what a doctor says why should you eat something that makes you feel awful? It's not like you can't eat healhty gluten-free. Plus, the scope they give you only goes down so far. I think it only goes about one foot into your small instestine and maybe your damage is farther down than that.

My upper endoscopy isn't until Feb. 1 but I already know I have celiac disease b/c since stopping gluten, my stomach aches have disappeared. I will not change this diet even if the doctor says I don't have celiac disease.

I still have to watch my sugar/dairy intake, as these give me gas/bloating as well, but overall I feel much, much better on this gluten-free diet.

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I agree, a positive result when changing your diet is a test in and of itself that shouldn't be ignored!

Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Hi Heather! I think Im your long lost twin! Everything you described, sounds like me. I even went to an allergist, who said Im allergic to eggs, some weeds, pollen, stuff like that. I have tried, only for about one week so far, to eat much less gluten, and I feel better already. Im just trying hard to read food lables, so its still a learning process. I too am lactose intolerant. My allergy test came back that Im not allergic to milk, but, i know Im intolerant just by how I feel after I eat dairy. The hard part for me is now Im trying to see if there is any tests I should take to see what foods Im intolerant too, because as sick as I have been for all these years, if its something as easy as just knowing what not to eat, Ill do it. Please keep us posted on how you feel, good luck

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