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Too many tests and no answers

Angefelina81
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Angefelina81 Newbie
Angefelina81
Posted

I am happy to find this page hopefully it will be able to fill in some of my answers for my pain.

To start at a young  age of 1, I was diagnosed ciliac. Gluten diets especially in the 80’s were very tough to find.

Around 10 I was able to start eating normally with out having abdominal pain and diarrhea. It seemed as if my symptoms to gluten went away.

At 20 my pain in upper abdominal pain became ongoing during college I didn’t think much of it ( You get to busy and you still think your invincible at that age. I would often pass out from pain and just laid on the cold floor till the floor stopped spinning. Checked with some doctors but insurance was not the best so neither was care. 
 

  I mentioned it to a doctor that I have past and I was diagnosed celiac, after few test he said that that was incorrect and after colonoscopy 

( next decade I just worked and lived through the pain) finding marijuana as the only thing that helped my stomach and relief.

 My weight was very low, I am a small slim girl naturally it’s always been a struggle to keep a butt on me. Even after very  being inexcusably heavy at my pregnancies.

Fast forward till my 30’s I had my son at 31 and year and half later I was diagnosed with Hodgkin’s Lymphoma stage 4 with a lesion in my spine that caused extreme pain in my spine L1 that kept me in the hospital. 
 

After chemo stabbing abdominal pain, migraines, neuropathy in my hand and feet, throwing up from pain bile. I was exhausted after treatment. Foggy ness many side effects that come from chemo. So last 5 years I figured I am having side effects)

This year at 39 I had a surprise little miracle and had a little healthy girl. While I was pregnant I had no pain as all my pain disappeared. I could eat everything, just zero pain) which almost felt weird not being in pain first time seeing that that should not be the normal for me.

Last week I went to 3 emergencies hospital one being admitted. 3 different diagnosis. One doctor after I came out of anesthesia from colonoscopy placed a paper on my lap. That said chronic vomiting syndrome 🤷‍♀️. No talk just a note. That they can’t find anything all looks good 🙄🙄

The pain became To break me having two kids one 7 1/2 at home School bc of covid and baby. Riding on zero energy and walking hurts. The heating bag and cannabis is not  helping and now I was bleeding, chills.moodiness pure frustration. 
 

I am awaiting Nov 11 after months of waiting to see two gastroenterologist . 

I feel like I have done some many test that now I have to help them along with what should you check.  
 

I know when they were checking me for ciliacs I was told to eat gluten before that so they could see. Looking and reading around I am coming up with some test.

anyone has any advice what test have you had done? 
 

 

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trents Grand Master
trents
Posted

You would need to be eating significant amounts of gluten for at least 6 weeks before testing for it to be valid. A colonoscopy would not be used to diagnose Celiac Disease since celiac disease does damage to the small bowel lining. A colonoscopy is for checking the large bowel. What you need is an endoscopy, aka, upper GI scoping and biopsy.

There are also blood tests for antibodies connected with Celiac Disease. This is usually the first thing done. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

GFinDC Veteran
GFinDC
Posted

Right.  Also, people who have celiac disease have it for life.  It does not go away.  Sometimes people will have reduced symptoms for a few years in their teens.  But that is a temporary thing.  So if you were diagnosed with celiac disease before you still have it now.

A celiac disease antibody panel is common and then an endoscopy to take biopsy samples of the small intestine lining.  It's also possible to get a gene test for the genes but that only proves you have some of the genes, not that you have celiac.  About 30% of people have one of the genes but only about 1% develop celiac disease.

Another important test is for vitamin and mineral levels.  They can be low in celiacs and may require supplements, like Vitamin D or B-12 or iron.

Hormone levels can also be off due to the stress on the body and lack of nutrients.

One thing they can't test you for is patience.  Recovery from celiac disease can take months to years.  But you can find help right here. :)

Welcome to the forum! :)

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