Feeling unwell for years

[Nicola flaherty]

Hi everyone. 
I have been very unwelll for several years with what was diagnosed as ibs and acid reflux so have been on omeprazole and buscopan for over 8 years. 
In December I became very ill with swollen lymph nodes and lump in my neck and have been unwell ever since. 
I have lost a stone in weight and have been for a ct scan which showed severe intestinal inflammation. 
I have been tested for celiac 6 times and always come back negative. But have decided for the past 3 weeks to go gluten free and I feel like a different person. 
I am having a colonoscopy next week and biopsies done but unsure if it would show celiac? 
Sorry that everyone has been so unwell in chats but it’s interesting to see how many have had symptoms the same as me. I was starting to think I was the only one with strange symptoms that no one can find out what’s wrong. 

[Scott Adams]

Welcome the forum.

In order to screen for celiac disease you would need to be eating gluten daily, a lot of it (usually they recommend at least 2 slices of wheat bread daily) for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease).

Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist. 

More info on the blood tests and the gluten challenge beforehand is below:

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

PS - Taking PPI's for that many years is also not recommended now because it can lead to other health issues.

[knitty kitty]

Welcome to the forum, @Nicola flaherty,

Proton pump inhibitors like omeprazole results in negative blood tests for Celiac Disease.  

The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/

Talk to your doctor about getting off the omeprazole.  

[Nicola flaherty]

Hi I have tried to come off of the omeprazole for many years with other medication and diet changes but never able to. 
I have had so many tests but up until now never tried a gluten free diet.this has been the only diet that has ever helped. 
still several tests to have. 

[knitty kitty]

Acid reflux is not an overproduction of stomach acid, it's underproduction of stomach acid.  

We need Niacin B 3 and Thiamine B1 to make and secrete stomach acid and digestive enzymes.  

Deficiencies in several of the eight B vitamins can present with gastrointestinal symptoms.  Thiamine deficiency can cause Gastrointestinal Beriberi.  Niacin and Cobalamine deficiencies can cause digestive upsets.  

Ask your doctor about supplementing with the eight essential B vitamins and magnesium.