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  I'm 37 years old, white, male, and I have adult autism, diagnosed a few years ago.

 

 

  A year ago I was diagnosed with irritable bowel. I would have loose stools and sometimes, constipation.  It was hard to figure out what was going on.  I was under a lot of stress so my doctors chalked it up to that.

 

  Starting 6-7 months ago I got gastritis and had trouble holding down food.  This was after taking antiobitics for an ingrown toenail, and I have used antibiotics in the past for all sorts of infections.  I would have gastritis and bloating commonly, and I resorted to herbal bitters to try to force things to move.  I also was taking Prilosec for gastritis and a GERD diagnosis, but I stopped the Prilosec because it seemed to slow down my digestion. 

 

2 Months ago I noticed problems with milk products that contained lactose.  I would develop bad bloating after consuming anything but very hard, aged cheeses.  My family doctor finally suspected SIBO and put me on Flagyl.  I became so sick on it I had trouble holding down food.  The bloating stopped on Flagyl but I found myself becoming intolerant of many foods.  When I would eat cream of wheat, I would feel a burning sensation in my guts as it went down through my stomach into my guts.

 

Starting about 1 month ago, every time I would eat wheat or gluten... within a few hours I feel mild malaise.  Then I become constipated with very little bowel movement for days, until I start taking laxatives.  when I finally do have a bowel movement, it is often loose.  Then I stop gluten for a while and my stools before more regular, I have a few bowel movements a day.  Then I'll sometimes re-challenge with gluten, and something similar happens: my guts just stop moving and I don't have regular bowel movements on my own.  I've been constipated for days before like this, until finally resorting to laxatives.  It's given me cramps so bad that once I just went to the hospital.

 

  I'm going to a gastro and he ordered a genetic and blood test for celiac disease but I was cutting back on gluten when I had the test done-  I ate some pasta and breaded chicken the day before the test ,but otherwise I was eating much less gluten than I had been the previous two weeks .   I did another gluten challenge again a few days ago, and the same results happened- I was constipated for days and finally I got some relief this morning by taking a stool softener yesterday, followed by magnesium citrate today.    I had some kind of flu like symptoms in the evening that went away with some home therapy (gua sha- I know a little about Chinese medicine and this sometimes helps).   So, I'm not eager to eat gluten again simply to be diagnosed, it seems to make me miserable and I'm starting to get relief gluten free.

 

  What should I do?  What are my options?  My colonoscopy is in 2 weeks... I had an endoscopy for gastritis 3 months ago that looked at the upper duodenum and it looked normal, biopsies were normal.  No small intestinal biopsies were done.  My guts are achy a bit but I am seeing improvements gluten-free, in my energy levels, my mood ,less anxiety and depression.

Edited by AaronM761138

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It might be best to continue to eat gluten until you get the Celiac Blood panel results.  If it's positive for Celiac Disease (celiac disease), your doctor may add another endoscopy to your upcoming colonoscopy appointment.   If so, you'll need several tissues samples from the small intestine to confirm celiac disease.  Then you can go gluten free!

 

Welcome to the board and I wish you the best!

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This morning my stomach was hurting like I had eaten bread, and in the back of my mind a small voice was telling me how odd that was, since I was trying to not be eaten that stuff.  I ran across a post talking about Corn Flakes not being gluten free.  Sure enough, that is what I had eaten.

 

  I think the matter is settled in my mind.  I'm going to try to get in touch with my gastroenterologist, but I don't want to eat gluten anymore.  I'm tired of being miserable.  It's like a night and day difference in terms of how my stomach feels.  I still think the colonoscopy is a good idea to look for other problems, but I don't think I need to wait on an endoscopy.

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If they've already taken blood for the bloodtest you don't have to wait for the endoscopy to go gluten-free - depending on how long it will take for you to get the endoscopy appointment.  In my case, I only had to wait 3 weeks from the positive bloodtest result to get the endoscopy.  I went gluten-free the minute I got the bloodtest result and the endoscopy still showed positive.  As in very obviously positive.  It takes a bit of time for the damage to heal, but if you wait months to get the endoscopy they could miss the diagnosis.

 

That said, if you decide to go gluten-free you have to go 100% gluten-free.  You already learned this with the Corn Flakes.  Most of us go on whole foods for the first couple of months to let our systems heal and then start reintroducing a few processed/prepared foods.  It takes a bit of time in the beginning but you'll learn to read the labels.  And if there are any ingredients that you aren't sure of, research it or ask the company directly.

 

The good thing is that gluten sensitivity, gluten intolerance, and Celiac Disease is much more common now than it used to be so more and more people are being educated on what it is and the labeling of food has gotten much better.

 

Good luck!

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