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

Tjweston
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Go to solution Solved by trents,

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Tjweston Newbie
Tjweston
Posted

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, 

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trents Grand Master
trents
Posted
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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 Newbie
Tjweston
Posted
  • Author

Thanks very much @trents for your response.

 

will defo get tested

Jordan Carlson Explorer
Jordan Carlson
Posted

@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 Rookie
Wends
Posted

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.

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

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    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
    • WildFlower1
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By WildFlower1 · Posted

      Thank you for the reply! Doctors over the years have tested me for everything under the sun and tests are normal, except the decreasing bone density, high FSH (in regards to infertility), lower iron, and all the other celiac symptoms I experience. When I was 15 the infertility started (my whole life growing up I always ate gluten, and always had severe stomach problems, I’m an adult now and I still remember the stomach pain as a child) and then from here, they couldn’t figure out why. At the same time I was having all these celiac symptoms but nobody ever put two and two together.   Eventually in adulthood I went off gluten and dairy and felt better. Later in life, the topic was brought up by doctors, but they could never actually test for celiac because I was off gluten for years.   Just recently multiple doctors brought it up again, and said I should rule it out. So the ruling out of celiac, which is direct correlation with these symptoms, infertility at a younge age, on the edge and getting into osteopenia, etc. etc. is the concern. I was off of dairy for the same time as gluten because it made me sick. I did not surely have adequate calcium/D intake as well over these years.   The matter of concern is to once and for all get celiac ruled out for my own health, a gastro doctor recommended I get it done and other doctors to confirm yes or no to officially rule it out.  For these 6 weeks I have not been eating enough gluten then it seems, if 2-3 slices of bread a day is not really enough. I should increase my intake of gluten then and extend the test time?   Thank you very much for your help!! The test for Immunoglobulin IgA being a value of —> “1.25” shows it is in the normal range of 0.54-4.17 g/L on the test. 
    • trents
      Contradicting length of time for gluten challenge - please help to ensure not getting false negative. Thank you!

      By trents · Posted

      Welcome to the forum, @WildFlower1! The reason you are seeing conflicting results when you research the length of time recommended for doing the "gluten challenge" is that the guidelines have recently been under revision. So there are two components: 1. amount of daily gluten consumption and 2. duration of that amount of daily gluten consumption Recently, the guidelines have been under revision because the medical community was sensing the previous standards were too relaxed, particularly in the daily amount of recommended gluten consumption. The more recent guidelines seem to be calling for higher amounts of daily gluten consumption over (perhaps) as shorter period of time. So, it is becoming a daily minimum of 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for a minimum of two weeks. Personally, I would recommend that amount of consumption be extended from two weeks to four weeks to ensure valid testing. Your Immunoglobulin IgA at 1.25. Was that within normal range? If that one is low, you are IgA deficient and other IgA test results cannot be trusted. But regardless of whether or not you have celiac disease or NCGS (Non Celiac Gluten Sensitivity) the antidote is the same, namely, a gluten free diet. What would you do different if you had a more confident differential diagnosis? And there are other reasons for the development of osteopenia/osteoporosis that you probably should explore. Are you on any serious supplementation for D3 and magnesium?
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