Gluten sensitivity? I miss gluten.

[Rainbot]

Hi. I’m new here but not new to the gluten free world. Last spring after having symptoms of bloating, chronic diarrhoea, fatigue, and excessive flatulence for six months or so I finally decided to get it checked out. Blood tests scare me but I bit the bullet and had one done. They tested me for things like Celiacs and Crohn’s disease but everything came back normal. They then suggested I try an elimination diet. I didn’t know what this entailed and they didn’t explain it too well but after cutting out gluten I felt better so I stopped eating it entirely. 
 

However at the same time I also moved country. I left the U.K. to go back to the USA so perhaps that also made a change. But I’ve since come back to the U.K. 
 

Back in the autumn of last year I accidentally had a slice of toast thinking it was gluten free bread. I experienced no adverse effects. This got me thinking whether I even had an intolerance/sensitivity in the first place. I was nervous to try testing my gut and I hadn’t attempted integrating gluten back into my diet until a few weeks ago. I started eating crackers and had some bread with no issue for about a week UNTIL one unfortunate day. After buying a different type of bread my stomach immediately felt off. It was gurgling and just upset. The next day i was pain and my gut was just not in a good way. 
 

I miss gluten a lot right now and I’m very confused about this all. Does it come down to the gluten product I’m consuming? Could I have celiacs and it be missed by a blood test? I don’t want to try and test my gut if it causes damage to it. My aunt also had inconclusive results for celiacs and adopted a gluten free diet after various health issues and I know that celiacs is hereditary, but is a gluten intolerance/sensitivity? Could British gluten products upset my stomach but not American products? I need answers. I’m only in my early twenties and I keep thinking of all the food I’m missing out on because I’m on this gluten free diet. 

[trents]

"Does it come down to the gluten product I’m consuming?" Possibly. There have been sporadic reports that some kinds of wheat are less likely to elicit gut inflammation than others and there have been some studies that indicate sour dough bread may avoid or at least lessen the inflammatory gut response for some celiacs. I don't think there is enough evidence at this point to draw firm conclusions about that apply to celiacs in general, however.

"Could I have celiacs and it be missed by a blood test?" Yes, not as uncommon as you might think though this may indicate gluten sensitivity as opposed to celiac disease. The antidote is the same for both, however. Total avoidance of gluten.

" . . . I know that celiacs is hereditary, but is a gluten intolerance/sensitivity?" I would think so.

"Could British gluten products upset my stomach but not American products?" Not likely but possible. See my response to the first question.

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Though you seem to be able to get by with consuming gluten for short periods it seems to catch up with you. This suggests gluten sensitivity to me. In my own experience, there are many foods I can consume occasionally and/or in limited amounts but if I consume them regularly and in larger amounts they give me issues. So there can be a threshold there. 

Because of your uncertainty, it would be best if you could get an endoscopy/biopsy of the small bowel to check for villi damage. That is considered the gold standard of celiac diagnosis. For that to be a valid test, however, you would need to be eating gluten daily for at least two weeks beforehand. For an antibody blood  test to be valid, you would need to be eating gluten daily for 6-8 weeks beforehand. 

[Scott Adams]

Many times in the past celiacs have reported that they "let loose" on trips to places like Italy where they ate semolina wheat pasta the whole time during their vacation with little or no symptoms, and this later led them believe that there must be a difference in the wheat in that country which could explain this, and perhaps they really aren't celiac.

This isn't mentioned very often, but in some people, after years on a gluten-free diet, celiac disease goes into complete remission, and it might take months or years of eating gluten again before the symptoms come back. See this post:

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The previous head of the UofC celiac center mentioned to me that there are rare situations in which celiac patients who ate gluten went into a temporary remission but in all cases that he is aware of, sooner or later the numbers went back up. There are even cases of asymptomatic celiac patients in which the Marsh classification of the intestinal damage improved. Dr. Marsh himself mentioned that at a symposium. If I remember correctly there is a case in which the numbers stayed normal for over 10 years but then they did go back up again.

I had also an informal discussion with the head of the department at Leiden University, and he mentioned that as we all know, not every person who has the genetic predisposition will develop celiac disease but something triggers it. At this time it is unknown what the trigger is. He hypothesized that if someone could possibly keep a gluten-free diet with the numbers within normal limits for a long period of time (he estimated about 15 years), there is a possibility that that person reverses back to just being predisposed. This is obviously not proven and because of the long time-span it is very difficult to investigate and chances are that the answer will only be known many years from now.

 

[CMCM]

I'm a person who can "sort of" tolerate gluten for varying periods of time.   I've been either strictly or "mostly" gluten free for the last 15 years.  After a year strictly gluten free about 14 years ago, I was so much better that I deceived myself that the problem wasn't real and I got sloppy and careless and had a tiny bit here and there.  I got away with it for a long time, with moderate digestive upsets that I could live with.  I got away with eating sporadic gluten for probably 13 years, but things suddenly took a turn for the worse.  This last year, probably for the last half of the year I went crazy eating gluten.  I was getting sicker and sicker and in addition, I was getting intolerances of increasing severity to a variety of other foods....a result of the gluten eating, I suspect.  I hit a crisis tipping point in late December and had to squarely face what was going on.  I stopped eating gluten, and within a couple of weeks the most intense symptoms were fading, and now 3 months on I feel pretty great, all symptoms gone and no relapses.  I don't know what would happen if I ate gluten right now....perhaps I would react badly, perhaps I'd get away with it like in the past.  I just know I'm not going to play that game again.  This last gluten crisis I had affected more than my gut, it affected my brain, and that was really frightening.  No way I want to repeat that experience!  No gluten product is great enough to tempt me!

What I have to wonder and will not really have confirmed, is if there was intestinal damage from all the gluten I ate.  Too late to find out as I've stopped eating gluten and could never get a positive test or biopsy right now.  However, I no longer care about an official diagnosis because I don't want to be that sick again and I have total motivation to not cheat with gluten ever again.  I have found I hardly miss it any more, and that would happen with you.   

Edited April 11, 2021 by CMCM