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New Diagnosis--symptoms Worsening!

girlywhirly

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girlywhirly Newbie
girlywhirly
Posted

I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??

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confused Community Regular
confused
Posted
I have recently received a diagnosis of celiac disease from a blood test. My dr was unable to get a biopsy due to the inflammation of my small intenstine, however, they are pretty confident that they have reached an answer. After my release from the hospital I went right out and de-glutened my kitchen and felt tremendous for the first 3 days! However over the past 2 weeks I've been surprised to find my symptoms fluctuating and sometimes finding myself worse than before they diagnosed me!

I can't wear anything that puts any pressure on my abdomen or it triggers a reaction as if I've eaten gluten. Also, I'm experiencing increasing and worsening nausea that is only controlled by Zofran. I don't know if this is part of the healing process or not, but I'm so careful about anything that I ingest or wear I wonder if I'm poisening myself somehow or if there is something else I should be doing?

What can I do??

I was the same way, I felt awesome after the first few days, then i started to feel terrible again. Then I found out i was casein intolerant, which has been very hard for me to deal with. I still have good and bad days. I hear it takes about 6 months to an yr to actually feel great.

I am actually in the process of contacting all of the product companies to see if all the stuff i use is gluten free. I feel like I am still getting glutened from something, but i have not been able to figure it out yet.

Maybe give up casein for a while and see if u feel better. Most celiacs cant tolerate dairy while they are healing.

paula

girlywhirly Newbie
girlywhirly
Posted
  • Author

Thank you! I will try to eliminate casien and see if it helps...I'm so miserable it's worth trying anything!

Nancym Enthusiast
Nancym
Posted

A lot of people adopt a very simple, very restrictive diet at first because the healing process can be pretty rough. You might want to google on SCD and see if that might help you out, but leave out the dairy products at least at first.

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