Celiac Recovery, Am I doing it wrong?

March 6, 2009 12:50 PM

Regarding celiac disease and the recovery process: I began a gluten-free diet 3 weeks ago. It's going good but not like I expected (more details inside). Anyone have advice on the healing process? Can anyone point me to helpful resources that explain what the healing process is like and how to best facilitate it?

Since eliminating gluten from my diet, I've experienced some wonderful days recently. My painful, loose and smelly bowel movements that were with me for 3 years ended in three days. The color has come back to my pale face and I have had an increase in energy and a feeling of ease I haven't felt in decades.

I really believe I have finally found the reason I was always a skinny, cranky kid. Wherever I went, my nickname was Toothpick and people marveled at how much I could eat. Figuring this out really explains a lot.

However, several times since going gluten-free I have experienced upset stomachs and nausea in the evening. Twice the symptoms followed having some gluten-free cookies and brownies I made myself. So I stopped eating desserts because I figured I wasn't ready for that.

Instead I have been following a mostly paleo diet with minimal sweets, small amounts of dairy and one-serving of Bob's Mills Mighty Tasty GF hot cereal every morning. I mostly cook for myself or eat Trader's Joe's products with the gluten-free symbol. For take-out I only go to Baja Fresh, get naked burritos and don't eat the chips.

I feel best after eating the hot cereal and usually have a great morning and afternoon. But in the evening the nausea hits and sometimes I get gas, acid reflux and a general weak feeling.

Also, I had a round of canker sores that came and went and I have been getting foot cramps like I did in high school in college. I haven't had either in years but I used to get them constantly.

Is my body just healing? Or am I missing something key about the diet? I have googled this for hours and read every post on Mefi tagged gluten-free or celiac this past week and can't find anything very descriptive about the recovery process from celiac disease. Am I supposed to just feel great from now on or is it a bumpy road to recovery?

posted by i_love_squirrels to health & fitness (14 comments total)

I don't have celiac, but I do eat paleo and have read a bunch about it. I don't think the upset stomach and nausea is normal once you've eliminated gluten. I'd suggest going full-bore paleo for the next couple weeks and very gradually adding back some of the stuff you're not as sure about. What I mean is, don't eat anything processed, even if it claims to be gluten-free. Gluten, unfortunately, ends up in all sorts of things it shouldn't be in. So just try fruits, vegetables, meats, nuts, etc. It'll be tough for a couple weeks to be so strict, but once everything is cleared up you can add stuff back and know exactly what causes problems. You'll learn more about your body and in the long run that'll pay off.
posted by Durin's Bane at 1:11 PM on March 6

Have you actually been diagnosed as having celiacs? It's possible that there's some other food allergy going on (or another one on top of the celiacs), which would explain the reaction to GF cookies.

If you haven't been diagnosed, you should go to the doctor before starting a GF diet. Eliminating gluten first can make it difficult to get accurate test results.
posted by PhoBWanKenobi at 1:13 PM on March 6

Have you eliminated the possibility of cross-contamination from when you weren't gluten-free? For example, when you make brownies, is there a certain measuring cup you used which might have had flour on it previously? Or measuring spoons that live in a drawer with flour residue in it? (My measuring cup drawer is basically full of flour because when I measure dry ingredients, I just tap them off and put them back.)

Is your brownie pan teflon coated?
posted by peep at 1:22 PM on March 6

Based on my friend's experience, I would also say to look into other food allergies. Don't do the prick test, as it's not as effective on adults - you need a blood test or failing that, a poo test. (Apologies if you already know this.)

Be careful of cross contamination. Don't share cutting boards - if bread has been on a wooden cutting board, according to my friend with this same problem, it can be eternally contaminated.

2nding avoiding any processed products. Also, be sure on bob's red mill that you are getting stuff that is processed in the gluten free mill - some stuff like corn meal, I think, is processed in the same mill as some wheat, so it's supposably gluten free, but it's in a contaminated environment for processing.

You might look into acidophilous (I can't spell) and for the cramps, bananas. Don't accidentally give yourself scurvy.

Good luck, this is a really hard thing, doubly so if you find out you have multiple food allergies.
posted by Medieval Maven at 1:28 PM on March 6

Celiac here.

Some "gluten free" stuff makes me sick. One kind of rice almond bread for example.

Right now I can't eat any dairy or it makes my joints hurt. I blame the celiacs.

I'm taking pysllium husk fiber which is helping.

I think anyone should start a gluten free diet by only eating food you make yourself. I wouldn't dream of eating out in the first 3 weeks of the diet. I only started eating out again after being on the diet for ten years. By that time I could really tell if a certain food at a certain restaurant bothered me.

And you should start the diet with only things like whole grain rice, vegetables and protein. No "gluten free mixes" and no prepared "gluten free foods". Work those in later by starting from a place of no symptoms and then adding a new food one thing at a time.

If you do what I say and you still have symptoms after 3 weeks then suspect other foods. I recommend a medically supervised fast that will get you to a place of no symptoms and then start adding whole foods one at a time. This is what you do with babies: only breast milk for the first year and then introduce one food at a time and carefully observe. I guess I'm saying treat yourself like a baby.

Mefi mail me if I can help any other way. That goes for anyone that has Celiac questions.
posted by cda at 2:16 PM on March 6 [1 favorite has favorites]

Have you actually been diagnosed as having celiacs?

Seconding this. You may have a wheat intolerance rather than a gluten allergy and while there's a ton of cross over not all gluten free food is wheat free and vice versa.

Either way you should be working with a dietician. I know three celiacs and they all found this step fairly crucial to their full recovery. I know at least one of them said it took a couple of years before she was fully healthy (although she was pretty sick first) so I'd say you have a way to go yet. Being gluten free while still having a balanced diet can be difficult and you could be introducing all kinds of other issues into your diet. For example the nausea may be low blood sugar and maybe you need more carbs. Or it could be high blood sugar and you need less. A dietician will help you sort it out. Your doctor will be able to give you a referral along with a list of what's wrong with you to take along.
posted by shelleycat at 3:00 PM on March 6

n-thing the exclusion diet cda mentions. Even allergen blood tests can be inaccurate, as the NYTimes discusses.

Think of it this way, the celiac completely destroyed your stomach and intestinal lining. It will take months to grow back. In the meantime aloe juice, acidophilus and rice cereal are your friends. Or at least, aloe juice works really well for me.
posted by fiercekitten at 3:06 PM on March 6 [1 favorite has favorites]

And oh, yeah, B vitamins. I became B vitamin deficient after many years of a wheat-free diet. Children's multi-vitamins work great for that.
posted by fiercekitten at 3:08 PM on March 6

Gluten-free baked goods do weird things to me sometimes. Also, thin and pale used to describe me, too. You may have other food allergies. I do, including eggs, milk, corn, and certain uncooked vegetables...

If you crave X, and X doesn't have a lot of salt, sugar, or fat in it, and you're getting plenty of calories, you may be allergic to X.

Also, wildly anecdotally, omega-3 fatty acids, phospholipids and whatnot help to rebuild intestinal lining.
posted by zeek321 at 4:09 PM on March 6

I know celiac can often come along with other food allergies, and it can be easy to assume that once you've found one problem, you've found 'em all. Like everyone says, talk to a dietician, and get some tests done.

Relatedly, a good friend of mine (who is not only gluten-free, but raw-fruit-free and all sorts of other things i can never remember free) runs a gluten-free recipe blog, and is having a giveaway for a book about going gluten-free right now. I hope this doesn't look self/friend-link-y, but her blog is a good resource, and you might win a book! I haven't read the book, but it's a memoir, so it seems like it might describe the recovery process, at least the way it happened for one person.
posted by dizziest at 4:47 PM on March 6

My son was diagnosed with celiac about a month ago. We've got a family history of celiac on my husband's side so were on the lookout but still - it's an adjustment. In the course of reading labels very carefully we've found that there are a fair number of Trader Joe's products that are either on their gluten free list or that shouldn't have any gluten in them which are processed in a plant that also processes wheat. Obviously those aren't reliably safe. My son finds that he reacts about a day after eating something containing gluten so you may find that you need to look a little further back to find what's triggering your symptoms. As many people have said, it's not uncommon to develop other food sensitivies - especially to dairy at the same time as celiac.

He's also taking probiotics, a multi-vitamin and a lot of extra calcium at his doctor's recommendation. It does seem to take a while to feel good again.

some resources I like - gluten free girl
celiac central
celiac.com
gluten free ann arbor - mailing list w/lot of helpful stuff on the site.
posted by leslies at 5:14 PM on March 6

1) It takes a while for your intestines to heal, e.g., a month or possibly quite a bit more. Have you had lactose intolerance your entire life (and hence brownie-intolerance, regardless of gluten)? It used to be that a small glass of milk would make me terribly ill, and it wasn't until 4-6 weeks or so after going off gluten that I could tolerate lactose (I can now drink a gallon per day to no ill effect).

2) Eliminating gluten consumption, but rapidly increasing, say, corn/bean/gluten-free-but-essentially-pure-fiber consumption is going to be hard on the stomach, at least to begin with.
posted by astrochimp at 5:13 PM on March 7

To cure yourself of the tendency to get canker sores, make a practice of putting apple cider vinegar into your drinking water. A teaspoon or two. This tip from my chiropractor has put to an end my long struggle with this painful condition. My father was also relieved of the same 'plague' in the same way. We've both acquired quite a taste for vinegarized water. Organic is best of course. I hope this tip frees you of those nasty things, too! (BTW, I have celiac, recently diagnosed. So maybe we share some digestive similarities.) Bonus: I've read that vinegar has long been touted as a general health tonic. Anyone know more about this?
posted by sparrowdance at 7:25 PM on March 8

I've been gluten free for about 1.5 years now. For the first six months after diagnosis, I had stomach problems / exhaustion / acid reflux in the evenings similar to what you describe. I have no idea whether correlates with what you are experiencing, but I found that:

1. after going gluten free, i couldn't drink milk for 6 months or so. Previously, I hadn't noticed this as standing out in the general disaster that was digesting food.

2. When I encountered the problems you describe, it was largely because I was going off the edge of healthy eating in some way due to changing habits -- in particular for me getting too little carbohydrate from meals that i would have previously had bread with to have a good blood sugar level. Amy's gluten free frozen entrees helped a lot with keeping my food habits regularish.

It took me six months of steady going to get things back into healthy shape again, but I strongly suggest seeing a nutritionist as well. I've noticed that among the other celiacs I know that the time and nature of the recovery process seemed to vary somewhat. In particular, all of this is just anecdotal or my personal experience and I have no idea if it pertains to you (or anyone else.)
posted by corprew at 11:43 AM on March 9