How long, o lord?
February 25, 2011 8:05 AM   Subscribe

Going gluten free: how long to really tell a difference, if gluten intolerance is really a problem?

Tested negative on the blood test for Celiac's, but very conclusively for Hashimoto's Disease (very high antibody load), which has been shown to correlate with--and possibly be made worse by--gluten intolerance. A brief (2.5 week) gluten free trial left me feeling sick (ENT symptoms of sore throat, sinus pressure, runny nose, plus fatigue) after two "challenges," or at least seemed to.

I don't have the money/insurance coverage for a biopsy to look for damage for a conclusive diagnosis of gluten intolerance (as opposed to full blown allergy/Celiac's), and I don't relish the thought of never eating another doughnut or swilling another Guinness. (Though I've been told it's possible to get over gluten intolerance after a period of abstinence where the body can repair itself.) If going gluten free will really make a difference, how long will I have to go completely abstinent (no occasional cheat day/bite like I've done before) before I know? I've heard anything from 2 weeks, to 6 months. What has been your own experience, if you were gluten intolerant but not full nlown allergic?
posted by anonymous to Food & Drink (17 answers total) 17 users marked this as a favorite
I felt a difference within two weeks, and after a couple of months of being strict I could cheat without obvious effects - but that led to cheating more and more often until I had another wicked flare-up. (I have rheumatoid arthritis that's definitely tied into the gluten intolerance.) After this last flare I'm pretty much resigned to not cheating at all any more - but the previous year-and-a-half of dodgy compliance was probably necessary to get to that point.
posted by restless_nomad at 8:15 AM on February 25, 2011 [1 favorite]

I have Celiac Disease. My blood tests were negative, the biopsy was positive.

It took me a full two months without cheating to even start feeling better. Then at about three months I woke up one morning and realized that I felt good. Like "Oh my goodness, do normal people feel this good every day" good.

My doctor told me that since I had negative blood tests my intestinal damage could have been caused by a bad bout of gastroenteritis that I'd had a few months before the endoscopy. He said that if I ever doubted the diagnosis that I could always go back on gluten for two weeks (after being on the diet for at least 6 months) and see if I had a reaction. After about two years I wasn't feeling quite as well as I'd like to so I decided to give the two week experiment a try. I only made it one week before I was sicker than I've been in my life. It was terrible, and it took me six months to recover.

I have a blog about Celiac Disease, memail me if you want the address or if you want to talk more.
posted by TooFewShoes at 8:24 AM on February 25, 2011 [1 favorite]

I'm having trouble finding the paper on the topic but I remember reading a study that showed that, at least as far as leaky intestinal junctions went, it took nearly a month.

If you were feeling sick, likely as not it was something new in your diet.
posted by rr at 8:26 AM on February 25, 2011

My gluten-intolerant office mate reports that she began noticing results within a week, truly - weight loss, stomach issues cleared up, backaches and headaches gone, on and on. She went the whole hog, eliminating every hidden source of gluten - soy sauce, malted booze, etc.

The major benefits didn't come until later, but she felt so much better within a few days that it made sense to keep going.
posted by peachfuzz at 8:40 AM on February 25, 2011 [1 favorite]

(You might also want to check some of these podcasts out - Robb Wolf is one of the go-to gluten-free guys on the internet, and he's covered Hashimoto's specifically a couple of times.)
posted by restless_nomad at 8:43 AM on February 25, 2011 [1 favorite]

I don't relish the thought of never eating another doughnut or swilling another Guinness

Not feeling like crap is better than the finest donut in the world, though, isn't it?

I mean, going gluten-free isn't about punishing yourself or being "good"--it's about trying to help yourself feel better.
posted by Sidhedevil at 8:47 AM on February 25, 2011 [5 favorites]

Took my son a couple of weeks to feel a difference and a month or more to start really feeling good. He has Celiac disease not just gluten intolerance.
posted by leslies at 8:48 AM on February 25, 2011

I forgot to add:

My daughter has Celiac Disease too. She was diagnosed when she was 5, her blood tests were positive and we didn't do an endoscopy on her.

It only took her a few weeks to feel better. I guess little kids heal more quickly. Her reactions, however, are much worse than mine. I get sick, sore, depressed. She gets all that, plus she hallucinates visually and auditory.
posted by TooFewShoes at 8:58 AM on February 25, 2011

When I was young we only ate bleached white bread. Then we went on a health food kick when I was 16 and started to eat whole wheat. I was diagnosed with Celiacs when I was 20. It took one week to start feeling better (absolutely no change from days 1 - 6) and at 2 weeks I was completely symptom free. I think it was 2 weeks because I was so young and I don't think the years of white bread were so hard on me as the whole wheat years.

If I cheat with just one meal I don't feel any pain. If I cheat for 2 days in a row the pain starts and then if I go gluten-free it takes 3 to 4 weeks for the pain to go away again. But I'm done with the experiments and haven't had gluten for over ten years.
posted by cda at 9:07 AM on February 25, 2011

I've heard the rule of thumb for these things is at least a month.

What are the "challenges" you're talking about? If you're feeling sick after absolutely strict adherence--no cheating, no bites--it may just be your body reacting to a lower-carbohydrate diet. That should also go away within 4-6 weeks.
posted by schroedinger at 9:30 AM on February 25, 2011

My father nearly starved to death until they determined he had Celiac disease. For him cutting out gluten was an immediate benefit, he could actually EAT.

My niece also has full blown celiacs, and things as minute as modified food starch in barbecue sauce will lead to leg cramps, days of stomach ailments etc. If you truly have a gluten intolerance I don't recommend cheating.
posted by Max Power at 9:38 AM on February 25, 2011

Please be aware that the risks of developing lymphoma (cancers of the lymphatic system) and cancers of the small intestine, stomach,or esphogus are significantly higher in those with celiac disease. It is believed that the lymphoma risk is due to an impaired immune response (the lymph system is involved with immune response). GI distress when eating gluten-containing foods is one reason to avoid it, but I think the higher risk of developing cancer is actually more important to consider.

Strict adherence to a gluten-free diet has been shown in studies to reduce this risk, particularly for lymphoma. Small intestine and other GI cancer risk also falls. While I don't know of studies that quantify the difference in cancer diagnosis between those who followed a strict gluten-free diet and those with occasional lapses, it makes sense to consider the possible consequences.

This is about much more than just avoiding GI symptoms.

There is no "getting over" celiac disease. It is life-long.
posted by citygirl at 9:45 AM on February 25, 2011 [1 favorite]

There are gluten-free doughnuts out there. I work at a grocery store, and we sell at least one or two different brands of them. There is a TON of gluten-free food out there. Find a local natural foods store and call them. Or memail me and I can try to track one down for you.
posted by Slinga at 10:18 AM on February 25, 2011

In regard to your 2-week trial, there are documented accounts of "low carb flu" where people get flu-like symptoms when they radically change their diet to eliminate gluten and/or go low carb. That might be what you experienced. The cure is to hang in there and let your body get used to it.
posted by CathyG at 11:12 AM on February 25, 2011 [1 favorite]

Mod note: From the OP:
The "challenges" (which seemed like it might indicate a sensitivity) involved eating a reasonable amount of wheat crackers at one sitting on one day, and a gigantic doughnut on another day. Both came after being 99% gluten free for the 2 weeks before, both involved a 20-30 minute delay before experiencing sinus pressure, sore throat, runny nose, and fatigue that lasted 3-6 hours. (Not ongoing.)
posted by jessamyn (staff) at 12:30 PM on February 25, 2011

After about one gluten free week, I felt great. The first few days I did have "cold symptoms," but they were gone by the end of the week. Last December I started cheating, few bites here, there, every day, and I didn't realize how sick I was making myself until January when I couldn't get out of bed.
posted by betweenthebars at 12:33 PM on February 25, 2011 [1 favorite]

I've been gluten free for almost a year now. I cheat once in a while, and for me it takes about 12 hours before I start to feel the pain (I have RA, MS, and IBS, and the gluten triggers all 3 for me) and about 3-7 days of good behavior before it starts to subside. I think it took about 2-3 weeks before I felt a difference when I quit, and about 2 months before I really started to feel better. Remember, gluten hides in a lot of processed foods, so be careful you aren't accidentally dosing yourself or you might not feel the benefit.

Nthing the "low carb flu" thing. Make sure you are getting your grains and root veggies.

The best gluten free bread in the world is Udi's. You can buy it at Whole Foods and most co-ops and "crunchy" grocers. Even the Safeways in Seattle are starting to carry it. They also make baked goods, pizza crust, buns, etc. You may be able to order them online as well (Amazon Fresh carries them).

Oh, as a side benefit, I have also lost about 50lbs in the last year just going gluten and egg free.
posted by evilcupcakes at 7:18 PM on February 25, 2011 [1 favorite]

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