Confused With Diagnosis

[PinkyPearson88]

Hey guys!  I am new to the site.  I have found a lot of helpful info on here, so I figured you guys could really help.

 

I have had stomach problems all my life- it was never a problem because I was just used to it.  In January, I had to go to the hospital because of horrible stomach pains.  It felt like my stomach was ripping.  A few other times it had happen, but it was never so bad I had to go to the ER.  The doctor said he was amazed at the amount of infection and that I was still walking.  He gave me IV antibiotics for a few days, then sent me home with some powerful antibiotics.  He had be schedule an appointment with a GI doctor for a colonoscopy. 

 

The GI doctor did blood work and schedule and upper and lower.  All my blood work looks fine.  A nurse called me a week or so after and said I have mild celiac. THAT IS IT.  I was left to google and find out what to do myself. 

 

After going gluten free, I started feeling better in ways I did not realize I was sick, but the stomach trouble has not stopped.  I just have different issues now.  I have had the stomach pains twice since then- did not go to the hospital.  Maybe because I do not want it, but I keep thinking I do not have Celiac.  I honeslty feel like I have something else.  I ordered my test results, and they do not conclusively say I have celiac.  It does not even mention the villi.  It says, " the findings may be consisten with the diagnosis of celiac sprue in the proper clinica setting.  Clinical correlation is advised." 

 

Any advice?  Of course there is some more mumbo jumbo on the results I will be happy to share.  I would just love some answers.  I feel I have a great GI doctor, but I cannot get back in to see him.  He always sends me his NP who does not seem to like her job.  Ya'll are so amazing on here- I would appreciate any and all comments.  Thank you for reading this long post!

 

Happy Thanksgiving!

[CajunChic]

Your situation sounds very similar to mine. My serology was negative and my biopsy was a marsh 1, which is not specific to only celiac. Because of my symptoms, My dr had me go gluten-free to see if I improved.

I went gluten free and felt so much better, but still had hang ups. I later found out I had other food intolerances I had to deal with (corn, dairy, beans, quinoa, tomatoes). I also had my gallbladder removed due to disease.

I then had my genes tested and I have double dq2 celiac genes. My dr believes I am a seronegative celiac and caught it really early. now im almost a year and a half gluten-free and still have good/bad days. Maybe try a food diary and see if other foods are bothering you, especially dairy. Most celiacs skip dairy for a while until their guts heal. I still can't tolerate much dairy, but I can have small amounts. Yay!

Be diligent in finding your answer and try the newbie 101 section to make sure you're covering all the bases for making sure you're completely gluten-free. I had a long road dealing with cross contamination due to my gluten eaters at home. It gets easier and second nature to you after a while.

Welcome to the club and good luck!

[nvsmom]

Yea, I'm afraid it is not unusual for a celiac to be negative in some of his tests, whether it is serum of biopsy.  Most celiac disease tests have a sensitivity around 75%, that means they miss 1 in 4 celiacs.  The thing to remember is that celiac disease tests usually have a high specifity to celiac disease - somewhere around 95% so only about 5% of all positive tests are caused by something other than celiac disease.  a positive biopsy probably means celiac disease.

 

It sounds like your biopsy has damage but it isn't extreme and they are hoping for some blood tests to back it up, but as you already know those tests can miss people.  Most doctors would tell the patient to keep eating gluten and come back in a year to retest which is doctor speak for "you aren't sick enough to diagnose yet so go make yourself sicker so the labs will back up your symptoms."  Not many doctors will advise the gluten-free diet when they suspect celiac disease... Not sure why.

 

If you do have celiac disease, you need to remember that going gluten-free is not a quick fix.  Sometimes bloating, or a few other symptoms, will resolve in the first few weeks but other symptoms take months or years to get better. I'm over two years gluten-free and I'm still working on getting better. You may need more time before you are well. Those first few months are often 2 steps forward and then 2 steps back, and no, I didn't type that wrong.   Things backslide in the first year in almost all celiacs; it is not a linear improvement.  Hang in there.

 

Have you cut dairy?  50% of celiacs can't handle dairy when diagnosed, although some regain the ability to eat dairy once they've healed.  

 

You could try a food and symptoms journal. Many celiacs find they have other intolerances that may or may not clear up once they have healed.  You may still have foods bothering you.... I know, I know, isn't gluten enough?  LOL

 

Welcome to the board.  

[jamie101]

I am in a similar situation boat & it sucks, believe me - I hear you!

I'm not sure what to do about my blood test results either but I know I am going to continue to not consume gluten as I already feel better this way. So, in reality, you know your body best - do what you feel!

If someone could help me out with my question too, that'd be great!

[PinkyPearson88]

Thank you so much for your responses.  I am trying to get back in to my GI to get some more answers.  I do not think I mentioned when I tried gluten about 3 months after stopping- the only thing that happens is my bones and joints hurt terribly!  Is it possible I actually have silten celiac?  Is that a real thing?

[nvsmom]

 Is it possible I actually have silten celiac?  Is that a real thing?

Oh yes!  We have a few board members with no obvious symptoms of celiac disease at all.

[LauraTX]

Oh yes!  We have a few board members with no obvious symptoms of celiac disease at all.

I am one.  I get no solidly discernible symptoms when I am glutened.  Some people take this as a free pass to not follow a gluten-free diet strictly,  but because I understand what is happening inside my body when gluten goes in, I am even more strict about things like cross contamination, etc.  The down side of being a silent Celiac is you don't have your own built in gluten detection system so you have to be extra careful.  My Celiac was caught early, and after I went gluten-free my unexplained anemia went away.  So I did have symptoms of the untreated Celiac disease after all.  Just remember what that joint pain upon gluten consumption means in the body- damage is being done- and keep that in mind.  

[beadgirl]

I agree that you should keep a food diary to rule out other food intolerances.

 

For example, if I eat onion I get excruciating abdominal pain, as does my mother and auntie (due to fructan). There are lots of foods that can do this. Have you had a fructose/FODMAP testing done?

 

It's very common for someone with celiac to react to other foods too.

[PinkyPearson88]

Thank you for all your help.  I am going to start keeping a food diary.  I have been having wrist joint pain non stop for a while now- I am thinking cold/ rainy weather is the culprit.  I also finally got an appointment with my GI in March.  I will just be as careful with CC as I can, and see where to go.  Thanks!

[nvsmom]

With the journal, look at foods in the 72 hours before your symptoms arose. It can take a couple of days before symptoms show up.

 

Good luck!