Am I celiac? GF diet does not work for me?
Posted in the Celiac Disease Forum
#1 Jul 29, 2014
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 GF
diet but was making many mistakes for a few months.
September 2013 I went on real GF 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 CD. 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 GF 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 GF 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 CD since I have been on GF
diet for almost a year?
#2 Aug 27, 2014
Have celiac disease and going gluten free is not enough. I had to go on a macrobiotic diet for a few years to straighten myself out. And wish I had the discipline to stay on it.
But once I straightened myself out with a macrobiotic diet, I was able to tolerate a wider variety and go out and enjoy food with friends and family by following a gluten free diet.
But I often have to return to macrobiotics for periods of time to settle things down.
The best place to go for information about macrobiotics is The Kushi Institute. I went for cooking classes and enjoyed eating their meals for a week and continued with it once I got home.
The problem is that it is a limited diet with very little opportunity for enjoying meals with friends and family because nobody else wants to eat this way.
There are almost no restaurants that offer macrobiotic meals.
And I have to admit, I do not love the food. It is boring. I only tolerate it because it helps.
Maybe one day I will grow up and decide that going to a restaurant with friends or family is not important. But it really is a downer to watch everyone leave without me, or to go and sit and nurse a hot tea while everybody else pigs out.
And it sucks to have a family gathering where everyone else is enjoying a huge feast while I eat brown rice, kale, tofu, miso soup and hot tea. And there are no macrobiotic convenience foods. Everything must be made from scratch.
Sorry that I am not selling it well, but wanted you to be prepared. Yes, it works, better than anything else, but it is very inconvenient and socially stigmatizing.
Oh, and below is more info on celiac:
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