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Relapsing?

munnky

By munnky
in Coping with Celiac Disease

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munnky Newbie
munnky
Posted

My major issues with (suspected) gluten intolerance have been muscle aches and pains, as well as depression and other mental disorders (stomach problems are there, but less of a worry as I've gotten used to them).

I've been off gluten for about 3 weeks (last week, I got blood drawn to test for celiac). I was feeling great! Then, the last two days have been like a relapse - I'm tired, achy and really, really sad. I feel like stuffing my face with bread, because maybe it's not the gluten... and eating's always been my solution to depression.

I do have a question, though... I ate some pizza made with Chebe crust and gluten free sauce and cheese. I cut the pizza with a cutter which had been previously used to cut wheat pizza, but I then rinsed with hot water.

Could gluten have still been on the cutter? Could such a small amount provoke symptoms (I believe there may have been some gluten in the salad dressing as well). If I was able to "live" eating large amounts of gluten for 28 years, would such a small amount make me sick (is it because I hadn't been eating any?)

Thanks for any insight.

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happygirl Collaborator
happygirl
Posted

Munky:

Here a couple things I thought of---

1. Although it seems like a lifetime, being gluten free for three weeks, in the grand scheme of things, is a really short time. If you do indeed have Celiac, your body has almost definitely not healed yet. So even if you have been 100% gluten free for the past three weeks, your body has not healed nor returned to its full capacity. It is like a roller coaster in the beginning...sometimes the symptoms are directly from eating gluten, other times, its just not. It takes time for your body to re-build itself.

2. What salad dressing did you eat? Rule #1: If you don't know that its gluten free, don't eat it.

3. The pizza cutter---previously, meaning, in the past (like a week ago, then cleaned, and put up), or you cut a wheat pizza a minute before, and then rinsed and cut yours? Either are plausible, but if you are making a wheat pizza concurrently with a gluten-free one, there is a risk of cross contamination.

And yes, for many, it takes much less to set your body off. There are a couple ideas here. One, that your body was so sick that even a "good" was never really "good" when you were on a gluteny diet, so a little bit extra never hurt. Another aspect is that if your body doesn't have gluten, the autoimmune switch is "off". If you get any gluten, the switch goes back "on." The goal is to keep it off, and stop the reaction. Many people find that they are very sensitive after going strictly gluten free (not gluten lite).

Hope this gives you some things to think about. Best of luck, and I hope your health continues to improve. Let us know what else we can do to help.

RiceGuy Collaborator
RiceGuy
Posted

It does sound like you've gotten glutened, but if not then it may be similar to what I experienced. The muscle pains eventually got quite debilitating. That is until recently when I decided to try a magnesium supplement. The phrase "Works like magic" is how I might describe it.

I did start with a sublingual methylcobalamin supplement some time earlier, but the improvement was not very appreciable.

Anyway, unless you have a lot of malabsorption problems, I'd tend to lean toward the glutening. From what I've read on this board, sensitivities can heighten when the immune system has had time to recuperate.

Kyalesyin Apprentice
Kyalesyin
Posted

We found that when my wife was first healing [one week in] it took a lot to make her feel well and truly glutened- a lot like a peice of toast. By four weeks, a single gravy cube did it. Now, at about six months, a singe breadcrumb does it.

I think the ammount it takes to bring you lower gets smaller and smaller as the body heals, because there is actually something to harm if you've been clean for a few weeks.

Slackermommy Rookie
Slackermommy
Posted

I agree with Kyalesyin..I think that after 6 months you might not want to risk the salad dressing..but at the beginning it seems that those small amount don't do much. I found that was true for me.

All my lotions had either wheat or oats...but I didn't figure that out until after being gluten free for 6 months. I was feeling worse, and wanted to find the answer, started looking at the lotions, and poof, felt batter again when I stopped them. And they weren't bugging me before.

munnky Newbie
munnky
Posted
  • Author

So, basically, the bad days I've had the last two days are probably just my usual waxing/waning of the illness - the gluten isn't out of my system? I may not have been glutened at all?

How long did most of you take to actually feel better long term (without bad days)?

Thanks! ^_^

RiceGuy Collaborator
RiceGuy
Posted
How long did most of you take to actually feel better long term (without bad days)?

I'm just begining to see what MAY be light at the end of a looong tunnel - been nearly three years gluten-free for me I think. Maybe more, but not sure. Blame a brain fog, though I don't recall having that :lol:

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GeoffCJ Enthusiast
GeoffCJ
Posted
So, basically, the bad days I've had the last two days are probably just my usual waxing/waning of the illness - the gluten isn't out of my system? I may not have been glutened at all?

How long did most of you take to actually feel better long term (without bad days)?

Thanks! ^_^

I've been gluten-lite for several months, and gluten-free (mostly!) since Christmas. I've had a few clear "glutenings" I can attest that the reaction gets WAY worse than it ever was before. Some days I feel not 100%, but not horrible, and I'm starting to suspect I may have corn issues as well. Or I'm not doing a great job avoiding gluten. Some weeks I feel great, and great feels so good (and unusual) that I'm willing to do what it takes to get there everyday!

Other food issues are pretty common amongst Celiac's, so it can take some time to get things figured out.

Geoff

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