Am I Celiac? gluten-free Diet Does Not Work For Me?

[Vox]

Hi there,

Here is my story.

I had a few stressful months with irregular eating in the fall of 2013
and I started getting acid reflux, abdominal pain, bloating in general
and constipation in November 2013. I visited regular walk-in clinic
where they had an X ray done and some blood test, I was diagnosed with
GERD and was given lansprazole and miralax for constipation.

I have changed my eating habits, lost 5-10 ponds and got rid of acid
reflux and stopped taking lansprazole but still had constipation all
along. My BM has been changed from day one and I just could not seem
to fix it.

Fast forward – June 2013, I have seen GI specialist a few times and
was diagnosed with IBS. They suggested doing an upper endoscopy and we
did it. The visual results were normal and here are tests results
based on 3 fragments of flat small bowel-type mucosa – prominently
increased intraepithelial and lamina propria lymphocytes consistent
with celiac sprue. I was told I had a celiac decease. I went on gluten-free
diet but was making many mistakes for a few months.

September 2013 – I went on real gluten-free diet and found a new doctor. My
symptoms are still abdominal pain, bloating and constipation. He had me
do CT Scan, colonoscopy, and some blood tests but no celiac disease
tests as he was suspecting it was IBS rather than celiac disease. All the tests
were negative EOSINPHIL which was 5.8 with 4 as normal. I was told not
to worry about it. I also had Transglutaminase IGA  (tGT) test done
and it was 24 – positive. I was told to stay on gluten-free diet.

October 2013 – I started taking probiotics and majority of my abdominal
pain is gone, that was a relief.

July 2014 – I have been on gluten-free diet for almost a year and my symptoms
have been the same for almost 2 years – constipation and abdominal
pain when under pressure. The only time I feel normal is when I take
miralax for 2 weeks and my BM goes back to normal, that lasts for a
month and then it goes back to constipation and BM issues.

My doctor wants me to have another upper endoscopy. Should I do it? It
is very inconvenient procedure as everyone around here already knows.

Should I do gene testing? Food allergy testing? Anything else?

Is there a point in doing anti bodies for celiac disease since I have been on gluten-free
diet for almost a year?

Thanks!

[SMRI]

I'd start by cutting out dairy and see if that helps but if you are still symptomatic, you should call your GI back and get more testing.

[dilettantesteph]

It sounds like you need a doctor who knows more about celiac disease.  While on the gluten-free diet, tests are unlikely to show celiac, even if you are experiencing some symptoms.  The endoscopy biopsy is considered the gold standard diagnosis, so it sounds to me like you have it, but I am not a gastroenterologist.  Many celiacs take many months to heal, and many need more than just the standard gluten-free diet.  It sounds like you need an expert to look at your biopsy results to give you a definitive diagnosis.  Then it sounds like you to see an expert dietician to look at where you might be getting gluten contamination in your diet. 

[nvsmom]

Going dairy free is a good thought.

 

Constipation was a symptom for me, and it did not change one bit in the first 9 months gluten-free. It finally changed when I hit the ideal thyroid doseage with a thyroid med that contained T3 and not just T4 - hypothyroidism also causes C.  I'm not sure if my C improved because I needed the time on the gluten-free diet, or because my thyroid was being properly treated, or (most likely) a combination of the two.

 

Have they hecked you for hypothyroidism?  10-15% of celiacs (approximately) have Hashimoto's hypothyroidism, and that will slow your metabolism (and bowels) right down.  Google it a bit and see it the symptoms could apply to you.  If you want it tested get the TSH (should be near a 1), free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range), and the TPO Ab (should be low).

 

Why does the doctor want to do the upper endo?  It should be looking better after a year gluten-free.  What else is he expecting to find?

 

Gene testing will just tell you if you have the genes that most celiacs have.... but so does 30% of the population.  It's not very helpful IMHO.

 

Food allergy testing could help.  Some foods can causeintetinal damage besides celiac disease. It's a good one to look into.

 

Allergy tseting is IgE based. Some people also try the IgG based food sensitivity tests.  It's not often medically recognized but I know many who have found it heped them.

 

Your antibody tests should be mormal after a year gluten-free, but you might as well do them because some people's antibody levels stay high for a long time after going gluten-free.  My tTG IgA test was still positive after being gluten-free for a year (and while on steroids ).  If your levels are still high, you can't fully recover yet.

 

Good luck.  I hope you find answers!

[Vox]

Thank you everyone!

This is the first time I am hearing about additional tests and things to cut out of your diet so it seems I have some work to do.

 

The doctor I have seen is celiac disease specialists, according to him, there is nothing to worry about but he did not address my issues properly. He wants to do the upper endo one more time to see whether I healed or not.

It looks like that celiac disease patiences usually just have one upper endo.

[SMRI]

Thank you everyone!

This is the first time I am hearing about additional tests and things to cut out of your diet so it seems I have some work to do.

 

The doctor I have seen is celiac disease specialists, according to him, there is nothing to worry about but he did not address my issues properly. He wants to do the upper endo one more time to see whether I healed or not.

It looks like that celiac disease patiences usually just have one upper endo.

 

That is not true.  I was told I would be having a follow-up endoscope in a year.  Other people I know have had more than one as well.  If you are still symptomatic it is prudent to do another scope.

[Adalaide]

Thank you everyone!

This is the first time I am hearing about additional tests and things to cut out of your diet so it seems I have some work to do.

 

The doctor I have seen is celiac disease specialists, according to him, there is nothing to worry about but he did not address my issues properly. He wants to do the upper endo one more time to see whether I healed or not.

It looks like that celiac disease patiences usually just have one upper endo.

 

Your endoscopy results sounds rather like mine. I also had negative blood work. My endoscopy and blood work were done rather spur of the moment during a procedure I was having done for another reason when the doctor noticed I looked rather damaged. His assessment of the situation? That I should come back to see him and have followup testing. This meant "appropriate" biopsy with the whole enough samples crap and more blood work and blah blah blah. My super crappy insurance at the time didn't cover specialists at the time and the only reason I was having and endoscopic procedure done in the first place was as part of emergency surgery. I basically went to my GP who said the results pretty clearly say celiac (this has been confirmed by other doctors who looked at the biopsy report) and I went on a gluten-free diet.

 

A three month learning curve from June to September for the diet doesn't seem out of the ordinary. Many of us could say we had similar or longer learning curves and everyone will have the occasional slip. (Not on purpose slip, those are never okay, an accidental slip.) It took a full year for me to start to go more or less normally and even after 2 1/2 years now if I slip it'll take weeks or even a few months to get back to that again. I still don't feel 100% recovered from the issues celiac has caused, but I'm getting there. Your doctor should be helping you feel better. Sometimes celiac isn't the whole picture and he should be willing to explore that. If he isn't, no matter how expert he deems himself I agree you should find a new one.

[Vox]

My blood test appears to be positive. I also had Transglutaminase IGA  (tGT) test done
and it was 24 – positive. 10 is high.

 

I do not this was full panel test for celiac disease though.

[nvsmom]

You have celiac disease.  A positive blood test and endoscopy means you have celiac disease.  You could be one who heals very slowly, some of us are, or it could be caused by another problem like Hashimoto's. I have Hashi's and the symptoms really overlap the celiac disease symptoms. Many symptoms that I thought were due to celiac disease were actually due to Hashi's.

 

I think you might want to get tested again. The tTG IgA and even the scope. If they are normal, then it is more likely that the symptoms you are still expereincing are caused by something other than celiac disease.... Even though you still have celiac disease, but are treating it properly with the gluten-free diet.

 

Best wishes

[SMRI]

My blood test appears to be positive. I also had Transglutaminase IGA  (tGT) test done

and it was 24 – positive. 10 is high.

 

I do not this was full panel test for celiac disease though.

 

If your IgA is positive, you have Celiac.  With a suspicious scope, it's pretty much a sure thing and you really don't need the rest of the tests.  If your scope was positive and your IgA was negative, for example, then they would run the rest of the tests to confirm.  If you are still symptomatic, there is something else going on, either another food allergy/sensitivity, or you are still eating hidden gluten...personally I would want whatever tests are needed to find out what it wrong so I could feel better.