Not Coeliac But My Life Continues To Be Hell. Can Doctor's Get It Wrong?

[Currantbun]

Hi all,

I joined this forum some months ago with a list of symptoms I had but never updated, so here goes!

 

I had not been well for some time but looking back I have not been well for years.  Sadly I must have just got used to my symptoms and my body took them as being the norm.

 

Long story short, I went for coeliac blood tests and they came back negative.  I do not know my scoring as I was not told.  I was told what I was suffering from was anxiety and PSOS, not celiac.

 

I was not happy with the diagnosis as I believed that what was wrong with me was food related and I would get to the bottom of it myself.  I whipped my hands with my GP.

 

Within a few months I lost 70lbs on a gluten-free, DF and SF diet.  I regained my life and my confidence; people, I knew, stopped me on the street to comment on how well I looked.  

 

Long, long story short, I spoke with my GP again and he asked me why I was depriving myself of calcium when I had no allergies.  Hmmmm

 

So since the Christmas, I have returned to eating gluten and consuming both dairy and soy again.  I sit here tying this post with a stomach that looks like I am 6-7 months pregnant.  I also have irritation to my esophagus.

 

This morning I got a fright when I got what felt like a head rush from the centre of my gut to my head.  I felt really shock.

 

Any suggestion what I should do next please?

[Adalaide]

I had negative blood tests and a positive biopsy. It happens. You know it makes you feel bad. You either choose to pursue a diagnosis with a more enlightened doctor, or you can simply go gluten-free and feel better. No matter which you choose, I would suggest finding a doctor who doesn't treat you like that. No one should be treated with such disrespect by a physician.

[bartfull]

Did your doctor test your calcium level? If not, you don't need gluten or dairy to get your calcium. It is in lots of veggies, and also, you can always take a gluten-free supplement.

 

Addie is right - you may actually have celiac. If not it sounds like non-celiac gluten intolerance. Same symptoms, same solution - gluten-free for life.

[NoGlutenCooties]

Hi Currantbun and Welcome to the Forum!

 

Lets see... you felt like crap... went gluten-free and DF and felt much better... started eating gluten and dairy again... and again feel like crap.

To me, the answer is simple.  Stay gluten-free.  Also go DF for awhile and then reintroduce dairy to see if just adding that back in bothers you.  If it does, stay DF too.

You can get all of the nutrients you need without gluten and without dairy.  Getting enough calcium and vitamin D may be a little bit trickier (or at least less convenient) when not consuming dairy but people do it successfully all the time.

 

Listen to your body.  It knows better than most doctors - especially the rude, obnoxious, clueless ones. 

[frieze]

the fact that the doc referred to it as an allergy is alllll you needed to hear.  Please, have more faith in yourself.  Do not allow another person this power over you.  NO ONE needs dairy products.  with appropriate Vit D levels, more is absorbed/kept, requiring less replacement.  go back to Gluten free etc and get to live.

[Currantbun]

Thank you all so much for your responses.  I started back gluten-free, DF and SF this morning and look forward to feeling a lot better in the coming days.  It's great to chat with people dealing with similar issues.    

 

Hi Bartfull, no he didn't check my calcium levels.  He just dismissed any futher investigation after my presuls came back negative.  

 

Hi Adalaide,my brother and uncle are both celiac so I am sure I am also.  

 

the fact that the doc referred to it as an allergy is alllll you needed to hear.  Please, have more faith in yourself.  Do not allow another person this power over you.  NO ONE needs dairy products.  with appropriate Vit D levels, more is absorbed/kept, requiring less replacement.  go back to Gluten free etc and get to live.

 

Hi Frieze, your words is all I needed to hear to lift my mood, thank you.  Mood wise I have been at rock bottom dealing with all this an the Doctor almost had me convinced that all of this was in my head.

[Currantbun]

Hi guys,

 

A lot has happened since my last post.

 

I finally dropped my non interested GP and found a new GP who is actually interested in getting to the root of my problem and hopefully getting a formal diagnosis.  He ordered a copy of my medical file from the previous Doctor and told me he was dismayed that an endoscopy wasn't called for a long time ago considering my problems with an acid reflux type problem and the amount of different meds I was put on for the reflux.  I explained to him that I was convinced I did not have acid reflux in the traditional sense, that the AR meds were destroying my stomach and that my issues with oesophagus irritation only happened when I ate wheat or consumed dairy.     

 

He discussed the previous GP's findings on my coeliac blood work and said in all his years as an MD he has never encountered such a negative result like mine ???

 

To cut a long story short, he has ordered an endoscopy and I have to return to a full gluten diet.  It's living hell of course and my mouth is full of canker sores as I type this post as well as a white tongue with a crack down the middle, pains and aches, erratic bowel problems and being woken during the night with heart palpitations. 

[GFinDC]

Hi,

 

I suggest you write down your symptoms each day.  Take them or send them to the DR.  If it's obvious you are being negatively affected by eating gluten, then something is going on medically.  The problem is there are not perfect tests for celiac disease.  Any of them can be wrong/incorrect.  And usually they are right when they are positive  but are more likely to be wrong when they are false.  If you want to be formally diagnosed you'll need to stay on gluten for 12 weeks to get the blood tests.

 

If you have NCGI there are not standard tests for that.  So if that's what you have your tests will fail, be negative.  But NCGI can have all the same symptoms as celiac disease.   There are more people with NCGI than there are with celiac disease.  The treatment for both celiac and NCGI is the gluten-free diet.

[1desperateladysaved]

I haven't had dairy in years and grain I haven't eaten in 2 years.  I do eat healthy foods meats, vegetables, and nuts.  I shun sweets.  My calcium levels have been tested and found adequate.

 

I wonder if your total IgA levels were checked.  The body can be deficient in it and it can make the test false negative.

 

Hope you will soon feel healthy again!  Also hope that you find compassionate helpers in your quest.

 

Dee

[Currantbun]

Hi guys,

 

I finally had my endosocpy.  I was proved correct.  I do not have acid reflux and there was no damage to my esophagus even though I felt it was badly irritated.  I had told my prier GP that I did not have AD but he insisted I continue to take Nexium.

 

During the endosocpy they found gastritis and stomach polyps.  The polyps were very, very small but could not be removed because I was not sedated.  

 

The gastritis is not connected to h-pylori so biopsies were taken of both the polyps and inflamed areas of the stomach to find out the cause.  When the procedure was concluded I asked the Gastro. was my villi damaged.  He said it looked  'OK' but biopsies would give the true answer.

 

One week has gone by and I have heard nothing regarding my results and wont hear for another two weeks.  I am presuming if their was anything sinister (cancer) they would have contacted me by now???  

 

I am not happy to continue taking Nexium because I don't feel its warranted in my case but the hospital told me its all they can offer for gastritis.  

 

MY tongue continues to look large, white coated (not candidia) line down the middle of it and teeth marks at the sides.

 

Any ideas what causes gastritis that is not associated with infection?

[Currantbun]

The results of the endoscopy proved I have coeliac.  I am both relieved yet very annoyed.  I went back on gluten for eight weeks to prove the Doctors wrong but in my pursuit for the truth I am wracked with anxiety from weeks of gluten in my diet.  For the past two days I've had yellow diarrhoea and heart palpitations along with a ponding pulse like sensation in the upper centre of my gut.  Why is this?  I've been told to continue taking acid supressing meds for the gastritis but I don't feel they are helping me.  I am afraid to stop taking them because of the stomach polyps.  They also informed me that they are doing further analysis on my biopsies to find out why I have so many polyps for somebody in their thirties.  The waiting on further results is not helping with the anxiety.    

[BlessedMommy]

Wow, glad that you got a definitive answer!

[nvsmom]

I'm sorry you had to go through all of that.  Best wishes with the gluten-free diet. I hope you are feeling well soon.

[Currantbun]

Thank you.  Hopefully its onwards and upwards from here 

[1desperateladysaved]

I am glad you figured it out.   I would suggest checking in with a Functional Medicine doctor who can possibly suggest supplements that can help your body heal rather than drugs to suppress symptoms.

 

Dee