Repairing the unspeakably lousy digestion of the celiac

Updated February 17, 2013

For years, in order to survive a job interview or a conference or a plane trip, I’d have to stop eating 36 hours beforehand. Any food I ate back then would either roar through the alimentary canal too quickly, or would display a profound reticence about making its exit, whereupon anything entering the works subsequent to that was greeted by what felt like a riot in a peat bog. Events that increased my stress level more than everyday routine would then tip things into the Miserably Uncomfortable and Distracted end of the dial.

No matter where I was or what time it was, I would’ve preferred to be lying in a scalding hot bath, which was the only thing besides not eating that made me feel better, although not much.

Celiacs are famous for their disastrous digestive tracts, but going gluten-free did not result in any great improvement in mine until I started experimenting with supplements. I believe the problem was three-fold:

1. Celiac disease causes atrophy in the intestinal villi that produce the different enzymes the body uses to break different substances down. So half-digested food was running amok up and down the line, and the rest of the digestive system refused to have anything to do with it.

2. Celiac-induced deficiencies caused the intestines to lose their peristalsis mojo. Calcium and magnesium, for example, play a role in contracting and relaxing the muscles. The intestines couldn’t squeeze and twist and smash sh%! up or keep it moving along the way they were supposed to.

3. The same thing caused the large intestine lining to break down, and undigested particles were leaking out of the gaps into the bloodstream. However, I don’t think this was as large a problem for me as the first two.

Things first started getting better when I started taking digestive enzymes at every meal, which I did for months. I don’t remember what brand it was, but it came from the alterna-doc. Things got better still when I started taking calcium and magnesium.

In addition, at the recommendation of many people on the Listserv Celiac list — one of the few lists I’ve ever visited, BTW, whose members know how to write a subject line, and which ruined me forever for all other discussion groups — I took 500 mg of the amino acid L-glutamine every other day for perhaps a year. Any more and I got headaches, which I believe is normal for people who react badly to monosodium glutamate (MSG). The body can convert glutamine into the amino acid glutamate. According to Ron Hoggan & James Braly, authors of Dangerous Grains, the amino acid can “prevent and reverse villous atrophy, a leaky gut, and the malabsorption of nutrients.” I definitely saw an improvement over the months that I took it. When I stopped it, I did not get worse.

Things got even better after I started taking a tbsp (tablespoon) of psyllium husk fiber powder twice a day, which I did for a couple of years. That took care of the borborygmus, one of the best words ever, that taking supplements occasionally brought on. According to experts, this amount of fiber will either keep you from ever dying of cancer, or will deplete your body of every mineral on the periodic table. I’m saying that the amount I was using might be overkill. It’s your call.

Several years later, I took a truckload of betaine hydrochloride (BHCl) for many months, which helped absorption a lot, judging by the state of my fingernails and skin. I think I started with 4 x 500 mg capsules with each meal. When the BHCl started to make my stomach burn, I’d lower the dose, until eventually I didn’t need it anymore.

At some point I also took probiotics for months.

And of course, as I experimented with my diet I learned which foods ruined my digestion and that there was a clear connection between indigestion and my mood. Most of the intolerances eventually disappeared.

12 thoughts on “Repairing the unspeakably lousy digestion of the celiac

  1. George

    I think there should be one more thing on the list:
    Chew your food every meal very well, at least 17 times for every spoon you take, that will relax your digestive valves, even if it takes your lunch to finish in like 30-40 min, trust me, it worth.

    Reply
  2. Christopher

    Thanks for keeping this blog post up. My girlfriend has celiac. We are both careful but she got “glutened” at a restaurant yesterday. Your post confirmed a few things for me and have also given her some hope. Thanks.

    Reply
  3. Sue

    Thanks for the reply Marjorie. I’ve just discovered I can be tested for Leaky gut through my doctor – otherwise known as “intestinal permeability”. I’m a bit excited since a lot of the remedies I look into (GAPS etc) mention leaky gut as the root cause. If I don’t have it, but have simple bloating and the fun that usually comes with that – I’m thinking – what then?? Plain and simple IBS? Hmm…

    Reply
    1. Marjorie Post author

      I didn’t know there was a test for leaky gut. I do remember that l-glutamine helped a lot, in a few months, with healing my wheat-ravaged system. When I was investigating candida last week I came across this post about tryptophan and intestinal inflammation. It mentions IBS. That blogger sells candida support supplements and diet info but he seems like a decent, informed guy.

      Good luck to you!

  4. Sue

    Hi, I’ve just discovered your blog after looking up poryluria (however it’s spelt). I can identify with a lot of your symptoms (and past, yay for you!), and I’m going to give a few things that have helped you a go (like zinc for acne). I read some things you mentioned about digestion but wondered if you have issues with gas now that you’re gluten-free, I “went gluten-free” for all of last year and didn’t see any difference in my gas issue. Possibly I needed to let go of the starches that lovely gluten-free stuff brings and do paleo/GAPS etc, which I have been doing for two weeks now. Just wondering if there are any supplements you found help with gas.
    I have kids and a hubby to look after too so that will be interesting if I can concentrate long enough to see if the supplements help – love the helps you mention re foggy brain :) feel like you understand!!

    Reply
    1. Marjorie Post author

      Oops, I just realized that my first draft of this reply basically repeated the post.

      Going GF didn’t help me with that problem, either. Almost everything I mentioned in the post helped a lot with gas. I think the glutamine helped more in a pain-and-bloat-reducing way, but I don’t remember for sure.

      A few more details:
      – digestive enzymes: I ignored the label dosages and just kept adding capsules until I was obviously taking too much. Watch out for the BHCl in enzyme preparations. You might hit your BHCl limit (burning stomach pain) before you hit your enzyme limit. You could try a combination of preparations, with and without BHCl.
      – magnesium keeps things moving, and keeping things moving is very important
      – psyllium fiber keeps things moving and scrapes things out

      I still have to avoid these, but they’re pretty common issues:
      – xanthum gum and maybe guar gum, which are binders in many GF baked goods. Oy! Napalm on my innards.
      – some legumes: lentils, beans, and any type of pea
      – the usual sulfur culprits: onions, lots of garlic

      It also occurs to me now that right after I started the GF diet, when I was really, really sick, I wanted to clean the, uh, crap out of my wretched system, so I found a cascara sagrada/psyllium husk colon cleansing combo that was quite thorough. You don’t want to stray too far from the house when you take that stuff.

      Good luck!

  5. Mike S.

    Hi! I find your blog very interesting, because I’m going through a similar process of trying to figure out what deficiencies and sensitivities cause my various problems. I don’t have serious digestive issues; my issues are more along the lines of just not feeling well a lot of the time (mild depression, fatigue, brain fog, etc.), but I think the causes are similar for digestive issues.

    You don’t say much about what you eat. Have you read “Breaking the Vicious Cycle” or “The Gut and Psychology Syndrome”? These books go into detail about how your diet affects your intestinal biome and nutrient absorption, among other things. Both books were very enlightening for me.

    Reply
    1. Marjorie Post author

      I’m glad you find the blog useful! I have avoided almost all diet-related books because for several years I had eliminated so many foods to control my mood that I had no room to maneuver with my diet at all. It was too frustrating to read any other recommendations. The Celiac List people discussed Breaking the Vicious Cycle a lot, and I got the gist of the GAPS diet on Gianna Kali’s blog Beyond Meds. I pretty much had already been following both, with the exception of the GAPS’ recommended fermented foods, which raise my histamine levels too much at the moment.

      Eventually I could eat a lot more foods, but I still avoid most dairy, legumes and almost all grains, as they make me feel like I’ve been drugged. Basically I’m a Paleo chocoholic with the occasional Pepsi-and-Fritos or gluten-free-baguette binge. I feel like I, I dunno, “burn cleaner” this way (I mean without the binges). Perhaps that’s what’s absorbing nutrients better feels like.

      I would also love to experiment more with probiotics but they completely stop me sleeping now.

      Rereading this entry I see that I forgot to mention that I took a truckload of betaine hydrochloride for many months, which helped absorption a lot, judging by the state of my fingernails and skin.

    1. Marjorie

      Thanks for being the first non-spam commenter! I stopped taking psyllium husks when my insomnia got really bad and I discovered that psyllium and several other supplements were contributing to it. I assume the psyllium was hindering the absorption of something important.

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