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Hey, new to the forum, but I wanted to ask a few things.

But first, hears my background.

Back on Jan 1st, I woke up with a rash covering my body. Swollen hands and feet.. Like hives, although I had never had them. I had no idea what it was, and called my advice nurse. I was told to take some Benedryl and call if it got worse. Of course it did and went in.

I was told I had hives, and was put on a type of steroid that. The steroid of course would make the rash go away, but it would come back as soon as it wore off. I went through the agony of the rash reappearing for the next week or so until I had enough and went back in to the UC. Of course, I was told again it was hives and put on a higher dosage and sent home. Oh modern medicine and lazy doctors!!!!

By this time, my body was completely tweaked out. I honestly thought I was going to die, and was having constant panic attacks, which I had never had before. But then, the rash started to go away. It obviously was DH. I talked to my mother, who informed me it was" probably because your allergic to wheat."

I had been tested as a child, and was positive for Celiac, but as life would have it, my folks split up and one made me follow the diet, another fed me donuts! Apparently I liked the donuts a wee bit too much. Anyhow, after doing some research, I realized I have had all the symptoms of Celiacs for years, but really did not think much of them.

I decided to go gluten free, and low and behold, I feel 100% better. The first few weeks were brutal, but I am managing and my wife is very supportive, even if she still eats toast in front of me!

So my questions are these:

1: How long does it take to really get it out of your system? I have heard from 3 months to a year? Will it ever really be gone after 29 years of bad eating?

2: Are the giant lulls in energy just part of the recovery? I have days, I swear, I could sleep all day because I feel so drained. But then a day later, I feel totally normal.

3: I still get DH pretty often, but not severe. Usually on the tops of my feet or inner thighs, sometimes hands. I try to ignore the itching, but it is like a dull roar sometimes, even when there is no physical rash. Is this common also?

That's about all. Any info would be great. It is amazing there are so many of us out there!

Thanks again.

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Celiac.com Sponsor (A8):

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Hi Klaus, and welcome to these boards. I believe that your low energy on some days might be because your body is using all the available energy to heal the accumulated damage. It can take months to really have energy again.

You might have DH outbreaks for up to two years. It could take that long for all the gliadin deposits to be gone from your skin. But I am sure they will get less and less severe, and will eventually stop altogether (unless you get glutened, of course).

Your intestines could take six months to several years to heal, depending on the amount of damage, and on how fast you heal (everybody is different).

I am glad you finally figured it out and are starting to get better!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hi Klaus and welcome. This is a wonderful place to find answers. Be sure and check all your meds and other personal items for hidden gluten. You will be amazed where it's hiding. After a while it won't bother you any more when someone eats gluten in front of you. I have found that thinking of it as poison is the best way to get over wanting it. You wouldn't put poison in your mouth and that is what gluten is to our bodies.

Yellow Rose


27 years of misdiognoses

seziures summer of 1979 lasted 10 years had maybe a dozen in that time Dr.s never could find what was causing them blamed it on lack of sleep and maybe nutrasweet

rheumatoid arthritis May 1980

wrist joint replacement Jan 1984

fibromyalgia May 1980

insomnia since the 80's

diarrhea 1995-2000 blamed on arthritis meds

Crohn's 1998 after two operations to fix fissures caused by the diarrhea

Other symptons over the last 27 years that have been treated for symptoms not causes:

depression, anemia, constipation, tooth discoloration, tremors in hands, tingling and numbness in feet and hands, fatigue, high blood pressure due to arthritus meds, flushing in face, severe muscle pain and thinking I was going crazy thanks to Dr.'s attitudes.

After diognoses my mother tells me I have an aunt and a cousin with Celiac. Mother tested negative but thinks she is intolerant to wheat and is changing her diet.

Suspect all three of my children have it as well but still trying to convince them to go get tested.

In answer to my prayer, "Lord Please Heal My Broken Body". May 2007 Celiac antibody test positive

Matthew 7: 8 Ask and ye shall receive, Seek and ye shall find, Knock and it shall be opened unto you.

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