Hello everyone, i think ive found what is wrong with me!

[Tjweston]

Hi all,

I am only 24 (male) but have been suffering from what I thought was gastritis/gerd for so long but i think after all this time it is Celiac disease. I was constantly tired my eyes really didn't look well, i had stomach cramps and pain pretty much all day and other symptoms that pretty much mimicked gerd/reflux. I always though it was gerd and so did doctors so they put me on PPI’s which quite frankly did nothing, antacids also didnt really do anything.

I am trying a gluten free diet and so far i feel much better, my stomach is still inflamed by the feel of it but im hopeful

Fingers crossed this will be my cure, 

[trents]

Welcome to the forum, @Tjweston!

First, I want to caution you about going gluten free before getting tested for celiac disease. If you decide you want to get tested for a formal diagnosis of celiac disease you would need to have been eating regular amounts of gluten (4-6 slices of bread daily or the wheat equivalent) for several weeks in order for the testing to be valid. And if you go back on gluten after having been gluten free for a significant period of time, you may find your symptoms are much more severe. In many places in the UK, there are tangible benefits for having an official diagnosis of celiac disease, such as vouchers for gluten free food and follow-up healthcare. Second, there is another gluten disorder known as NCGS (Non Celiac Gluten Sensitivity) the shares many of the same symptoms with celiac disease but does not damage the lining of the small bowel as does celiac disease. It is 10x more common than celiac disease. There is no test for NCGS. celiac disease must first be ruled out. 

You may also have developed additional food intolerances/sensitivities which is common in the celiac population. Dairy products and oats (even gluten free oats) are the most common offenders but it can be almost anything.

[Tjweston]

Thanks very much @trents for your response.

 

will defo get tested

[Jordan Carlson]

@Tjweston I second @trents caution about going gluten free prior to getting tested!  Unfortunately to get the endoscopy to get the diagnosis for celiac disease, it took a full year from when I tested positive on the blood work for celiac to get in for the procedure.  I went gluten free when I found out through the blood work I was potentially celiac as I did not want to damage my stomach any further.  When I got the date for my test, I was intructed to eat gluten for atleast 2 weeks prior.  The longer you are exposed to gluten before the test, the better the results of the biopsies are so I did 3 weeks.  It was the worst 3 weeks of my life.  I felt absolutely gross, was throwing up, sleeping almost all day....... I highly recommend you keep your bodies tolerance to gluten up until you get tested and get an answer to if you are positive or negative.  But if the health care system is like where I am located and anything takes an absurd amount of time to get in to, understandable if you want to save your stomach as much as you can while waiting.  If not, I would wait to go completely gluten free!

[Wends]

Hi. Sorry to hear. I’m in the UK and have a bit of personal experience of the diagnosis of gastrointestinal disorders. Unfortunately there are many gastrointestinal disorders that can cause similar symptoms and really need to be ruled out under specialist gastroenterology care.

First of all did you have an endoscopy with the dx of reflux and nothing else? Have you been referred to a gastroenterologist/ speacialist? If not you should push for this. Most GP’s are not very knowledgeable of gastrointestinal disorders or coeliac disease. They carry out initial coeliac screening (blood test) if symptoms suggest and if the test is positive referral to hospital specialist. Alarm bells should ring when your symptoms have not gone away with PPI’s or acid reflux meds.

For example information and interest, There is a rare set of disorders called Eosinophilic gastrointestinal disorders (EGIDs). They are named based on the location of inflammation the most common one being eosinophilic esophagitis, then gastritis, then gastroenteritis and colitis. Unresponsive to meds acid reflux can be a signpost. It is usually antigen (allergic) disorder and studies show the common foods causal to be the top six allergens groups, milk, wheat, eggs, fish and seafood, nuts and soy in the majority of patients; and just one food sometimes two being culprits. Allergen testing can guide further dietary therapy if it doesn’t heal on avoidance of milk or wheat. BUT, Endoscopy and biopsies are the only way to diagnose by a knowledgeable gastroenterologist. Similar to having coeliac disease diagnosed. Get tested before cutting out foods and keep pushing for a proper diagnosis.

The website BadGut dot org covers EGIDs in detail for free info.