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Am I Insane?

jnclelland

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jnclelland Contributor
jnclelland
Posted

I dunno whether I want you guys to talk me into this or out of it, but here goes:

I don't have any official diagnosis of anything. I've been wheat- and casein-free since my acupuncturist suggested it over a year ago, and completely gluten-free since October. I've just recently realized that soy is problematic as well, and I've been gradually finding all the places it hides and cutting them out. Since starting all this last summer, I've had huge improvements in eczema, anxiety, and a zillion little things, and I've never felt better in my life. I'm still in a state of denial/grieving about the soy (WAH - I miss Chinese food! I can find gluten-free soy sauce, but not soy-free soy sauce! :( ), but overall I'd rather be healthy.

I never had any GI-type symptoms until very recently, but the past few months I've had several episodes of sudden D that I'm sure were brought on by cross-contamination of some sort. They pass fairly quickly; usually it's just one rush-to-the-bathroom, or sometimes a few within an hour or so. But then I'm fine, except for feeling a bit dehyrated.

The thing is, I feel this need to know WHY. Is it gluten, or dairy, or something else? So I'm toying with the idea of trying some mini-challenges - a few bites of pasta, a few sips of milk, etc. - just to see which substances cause which reactions. Would this be totally insane???? I did try some plain yogurt a few months back, and it made my eczema break out, but this was before I started having problems with D. I haven't knowingly consumed any wheat in over a year, and the thought of it kind of freaks me out. But then, for all I know, my entire problem could be dairy, KWIM?

I guess what I'm really wondering is whether doing a mini-challenge could cause any long-term damage. If not, I suspect that curiosity will get the better of me eventually.

Jeanne

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jerseyangel Proficient
jerseyangel
Posted

Hi Jeanne

I don't blame you for being curious. I know that Ursula did some challenges on herself a while back and posted the results.

Good luck with whatever you do--let us know :)

queenofhearts Explorer
queenofhearts
Posted

About the gluten challenge, I sympathize with the spirit of scientific inquiry, but it sounds kind of scary to me.

Then again I've been diagnosed by biopsy so I feel like I already know the answer.

About the soy sauce, have you tried fish sauce? No, it doesn't taste the same, but you can sub it in recipes for a hit of Asian saltiness... if you haven't tried it, don't be put off by smelling the bottle-- if you just use a splash it isn't overpowering at all. Do check & make sure the brand you buy is gluten-free because some do contain wheat.

Leah

marciab Enthusiast
marciab
Posted

I had to retry wheat 3 times before I could give it up. So, I understand completely. Now, I can honestly say I am not interested in trying wheat ever again. Each time the reactions took me at least a week to get over.

I am still trying to convince myself that I should give up eggs. They kill me, but I keep trying them about once a month. The reaction time is only 2 days and only gas so they are much harder to give up.

So, I would say go ahead and enjoy whatever you decide to test with. Garlic bread, cake .. yum !! :D

jnclelland Contributor
jnclelland
Posted
  • Author

I guess I'm just feeling frustrated because I had one of these D incidents yesterday, and I'd at least like to be able to tell people - like my doctor, for instance! - "This is what happens when I accidentally ingest X." But I don't really know whether X is gluten, dairy, or something else.

Don't get me wrong - I am NOT trying to see if I can eat gluten or dairy again. I'm happier and healthier without them. I'd just like to know what's responsible for these GI symptoms that I've never had before.

About the soy sauce, have you tried fish sauce? No, it doesn't taste the same, but you can sub it in recipes for a hit of Asian saltiness... if you haven't tried it, don't be put off by smelling the bottle-- if you just use a splash it isn't overpowering at all. Do check & make sure the brand you buy is gluten-free because some do contain wheat.

I didn't know they made gluten-free ones; do you know where to find them? (Of course, what's really a bummer is not being able to do take-out...)

Jeanne

lorka150 Collaborator
lorka150
Posted

Thai Kitchen fish sauce.

mle-ii Explorer
mle-ii
Posted
I guess I'm just feeling frustrated because I had one of these D incidents yesterday, and I'd at least like to be able to tell people - like my doctor, for instance! - "This is what happens when I accidentally ingest X." But I don't really know whether X is gluten, dairy, or something else.

Don't get me wrong - I am NOT trying to see if I can eat gluten or dairy again. I'm happier and healthier without them. I'd just like to know what's responsible for these GI symptoms that I've never had before.

I didn't know they made gluten-free ones; do you know where to find them? (Of course, what's really a bummer is not being able to do take-out...)

Jeanne

Same here. I've thought about trying some glutened food to see what symptoms I get and to see if they match up with what I think the symptoms are for me when I think I accidently ingest it. Haven't had the guts (ha ha) to do it yet. :)

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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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