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Desperate And Itching Again...

skyyblues

By skyyblues
in Dermatitis Herpetiformis

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skyyblues Newbie
skyyblues
Posted

Hello - I am desparate and hoping to find answers.....

Symptoms: Dishydrotic Exzema - Mainly hands but also arms, legs, chest, and recently face w/ swelling.

Diarrhea - 10 - 15min after eating - sometimes stabbing pains

Arthritis in knee

Leg cramps

Throat closes - Occaisonally happens when swallowing (unknown trigger)

Steroids: Prednisone - Nov and Dec 08 / Apr 09

Kenalog - Shots 2x in Jan 09

Medications: Omeprazole 20mg 2x day - Indestion 3/09

Simvastin 40 mg 1 day - Cholestoral 3/09

Ranitidine 150mg 2x day - trying to reduce acid in body to help exzema

Fexofenadine 180mg 2x day - allergy symptoms exzema

Singular 10mg 1 day - allergy symptoms exzema

Hydroxyzine 10mg up to 3 at bedtime - for severe itching at night to sleep

Benadryl - itching

I had some allergies as a child. Exzema on back of thighs never diagnosed cleared up. 2 1/2 yrs ago while changing jobs had new carpet and linoleum installed at which time I started to break out on legs and hands, spreading to arms. Kept seeing dr's none of which had any clue. June 07 had allergy tests which showed cabbage, formaldehyde, and several other perservatives. Got allergy somewhat under control in 08 until I had a root canal in Sept. Started to break out again. Allergy doc put me on prednisone(hate it). Had severe breakout and staph infection on hand in Jan. At that time they did a biopsy of my hand and I just inquired and it was not DH(they did the punch in the area that was broke out). Had just finished prednisone so they shot me with kenalog twice within a week and a half. Hands got somewhat better. March thighs broke out, hands worse, arms and chest also broke out. Saw my GP for regular check up and when he saw me he asked if anyone ever tested for Celiac Sprue. I said no, so he ordered blood tests. I did research. Wow could this be it??? Blood tests came back negative, but told that can happen (would steroids affect test results?). Doc said go ahead and try gluten free. Stomach is better than it has ever been!! Yeah. Was out of town 1st week of gluten free and arms and legs started to fade and couldn't see new blisters on hands!! On Thurs nite eye itching. Friday still itching starts swelling.... Friday nite when lips started to numb went to ER. Prednisone and Benadryl again... I am weaning off prednisone as quickly as possible and doc has sent me for consult with Gastro doc to do enoscopy for biopsy. I know I will have to go back to eating "poison" for correct testing. Thought of running to bathroom with pain not pleasant but I am willing to do anything at this point.

I am sorry for such a long post but am feeling at my wits end. Doctors call me a freak, friends and family are somewhat supportive but think I am just going to get a shot and be fine. My hands are cycling horribly, my thighs are broke out a little and I just want to cry at my own private pity party..... :( ......Any suggestions or help would be greatly appreciated.

Becky - Racine, WI

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ang1e0251 Contributor
ang1e0251
Posted

Did I understand you correctly, you were gluten-free when you were tested? That can throw a monkey wrench into your results. You are right, you must be eating gluten for further testing. But tests or no, you are not a freak. You are gluten intolerent or have celiac disease. Your body already told you that through dietary response.

Now you will have an endoscopy and the results will either be positive or negative for celiac disease. If the tests are negative, you are gluten intolerant. Either diagnosis, the treatment is the same; gluten-free diet for life. Your dietary response was dramatic so many dr's will diagnose a person on that alone. You could go a step further and have genetic testing, if you so wish.

Hang in there. The good news is you found the answer to clear up your skin and possibly other symptoms you never even thought of. You are very lucky.

skyyblues Newbie
skyyblues
Posted
  • Author

I was still eating gluten when I had the blood test. I had been on a lot of steroids though and wonder if that would have affected the results.

I saw the endo doc yesterday and they want to do both a endoscopy and colonoscopy on May 12th. I cried when I agreed to eat gluten until the test. I went out to dinner last night as I have a favorite place and probably won't be eating there again and sure enough within an hour of eating I started breaking out again. This morning I had terrible pains and was in the bathroom 3 times. I can't believe I was like that all the time and thought it was normal...I am not sure at this point if I will continue eating gluten or not for the test.

After last night I consider myself a Celiac Sprue and I understand why so many do not go through with the biopsy. The tests would still rule out any other problems that I may have though. My grandfather died in his fifties from colon cancer so this is not such a bad idea. My youngest son intends to be tested when he gets back from Afghanistan next year. My oldest son may or may not but I will tell him how important it is to have his 3 sons tested. I don't want anyone to go through what I have for so many years.

Thank you for your kind words and support. It means alot to have people understand how I feel, I am sorry that you have to have the same problems to do so.

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