peripheral neuropathy

[draperygoddess]

I was doing some forum-searching on this topic due to a little toe that seems to be falling asleep all the time--this is not exactly a new thing, but it seems to be more frequent, so I was wondering if it, like everything else in my life these days, might be related to the Gluten Monster. I was surprised to find a number of threads that mentioned neuropathy as a possible cause for bloating right after a meal. I always figured the bloating was due to a food intolerance, but I had never thought about the fact that, since I was bloating so soon after eating, it couldn't possibly be because the food had reached my damaged colon. Does this mean the effects of gluten have definitely spread beyond my colon into the small intestine and stomach? Another reason I think this may be the case is that I have had episodes where the cramping and gurgling started within minutes of a meal. Funny--since I never had the severe, secretory D that many of you describe, I always thought my MC was rather on the mild side and I was lucky I caught it early.

[tex]

Cynthia,

All but a very few of us apparently have small intestinal involvement with our MC. Not only that, but some of us seem to have stomach involvement, as well. That's why some of us react so quickly after eating a food to which we are sensitivie. Most doctors don't realize this, of course, because MC is improperly described in the medical journals.

If we were to take biopsies of our small intestine, and analyze them the same way that the biopsy samples from our colon were analyzed, we would find that they contain the same markers, (either lymphocytic infiltration, or thickened collagen bands, or both), as the colon. Some researchers are just now discovering that this is the case, and that the old original claim that MC affects only the colon, is incorrect. Not only that, but researchers are finally discovering that celiac disease affects the colon, (contrary to what Dr. Fasano claims). This also suggests that untreated gluten-sensitivity may lead not only to MC, but to UC and/or Crohn's disease, as well.

CONCLUSIONS
Based on evidence cited in this article, Table 2 proposes an approach to possible colon pathology in patients with celiac disease. The possibility of additional pathology should be considered particularly in patients who fail to respond to, or who later relapse despite, dietary gluten exclusion. Recurrent diarrhea and anemia in particular should prompt colonoscopy. There is an increased prevalence of not only microscopic colitis but also ulcerative colitis and Crohn’s disease in patients with celiac disease. Older patients with diarrhea or iron deficiency anemia should undergo colon investigation at initial presentation as coincidental colon neoplasia is common.

http://www.practicalgastro.com/pdf/Sept ... rticle.pdf

IMO, MC probably originates in the small intestine, not in the colon, as most doctors believe. Why would it originate in the colon? The small intestine is much more sensitive to inflammatory events, because of the enhanced surface area provided by the villa.

The observation that you do not have secretory D, suggests that your colon may not even be participating in the reaction. IOW, your small intestine is generating osmotic D, and it just passes through the colon, without additional infusion of water and electrolytes. That pattern of reaction is more typical of celiac disease, than MC. Perhaps that's why the lymphocyte count from your colon biopsy samples do not exceed the 20/100 enterocytes required for a diagnosis of LC.

Tex

[sarkin]

...and that's one reason why I will not be shocked if you turn out to have a celiac gene, when your test results come back, cousin Cynthia! (Though, of course, non-celiac gluten sensitivity will also do the trick, as we know.)

This is also a good case in point for "milder symptoms may not mean milder 'case'" - because IMO peripheral neuropathy means something very big and important is happening, and not in a good way. I get left-hand numbness and tingling sometimes, without dramatic digestive symptoms - maybe just a minor gurgle. It's not frequent, and I can't trace it to a particular food (not yet, anyway - maybe my assumptions about the timing of my reaction need some scrutiny). At the moment, my husband is under the weather, and it's possible my little occurrence of this a couple of days ago is part of the general household bug-going-around (or maybe that bug made me extra-sensitive to something I normal handle OK?).

Good observations, Cynthia - good explanation, Tex.

[draperygoddess]

Now, wouldn't it be something if this turns out to have its roots in celiac disease? That'll be an interesting conversation with the family, for sure! And I wonder what my GI would say if I went in with my lab results and they showed not only a gluten sensitivity, but also a celiac gene??

[JLH]

Try sublingual B-12, free of any intolerances.

[tex]

And I wonder what my GI would say if I went in with my lab results and they showed not only a gluten sensitivity, but also a celiac gene??

He would probably say you should disregard it, if you already have a negative celiac blood test result in your file.

Tex

[draperygoddess]

Joan--thanks, I was thinking about that today. Actually, I was thinking I probably need to be taking supplements for several things.

Tex--true, unfortunately. It doesn't matter--I'm not going to pay him another $50 copay for ME to tell HIM what's going on with my health.

I'm getting really impatient for my Enterolab results now! Can't wait to see what they say. (It's a little like Christmas, in a perverse sort of way...)

[sarkin]

Cynthia - I bet you're impatient for the results. I remember that feeling.

You seem to be at a good place for adding a supplement, with your efforts paying off. It's great to be able to do label reading and product research online, which has saved me some time in actual stores. (And I do buy online as well.)

Once you get the results, you'll know for sure what you're looking for when you scrutinize those labels... And I know what you mean about the 'perverse sort of Christmas' feeling. I felt the same way when my friend got her kids' results. Thrilling, terrifying, enlightening, astounding... HOPEFULLY not confusing!

[tex]

My sample kit arrived today, and for some strange reason, (that only a Potty Person could understand, ), it made me smile.

Tex

[draperygoddess]

Tex, we will all be waiting to hear about your results as well! Especially since you've been fighting this battle for much longer than most of us!

[Stanz]

Tex,
Is this your first test w/Enterolab, or a follow-up for food sensitivities? I just assumed you had done these tests long ago.

Can certainly identify with the sentiments when receiving the test kit, second only to receiving the results.

[sarkin]

I can relate, too! And I look forward to learning your results.

I was wondering recently whether some of the non-food tests would be worth running sometime down the road - like the anti-tissue transglutaminase antibodies... if they were to go down, would that mean something encouraging about the reduction in autoimmune activity (and maybe risk of additional AI issues?)?

Love,
Sara

[tex]

Is this your first test w/Enterolab, or a follow-up for food sensitivities? I just assumed you had done these tests long ago.

6 and a half years ago, I had tests done for soy, egg, yeast, fecal fat score, and the gene test. At the time, I had been on the GF diet for 3 and a half years, and I was also avoiding casein, so I didn't see any point in testing for anti-gliadin or anti-casein antibodies. All of the test results were negative, except that the fecal fat score showed that I still had a small amount of residual small intestinal damage, (enough that Dr. Fine noted on the report that I was gluten-sensitive, even though I didn't order a gluten-related test). Of course, the fact that I have a copy of the most common celiac gene, (DQ2), may have influenced his opinion.

Anyway, I don't seem to have any unresolved symptoms that I can't attribute to something else, except for a minor amount of osteoarthritis, so I thought I'd just check out the two biggest risks for that, namely gluten and casein. I've been intentionally eating casein, for several months, so that I can get a valid result on that, (I can't detect any symptoms from eating casein), and I'm taking so many pills and vitamin supplements, that I'm curious if any of them might contain traces of gluten, (not enough to cause a reaction, but enough to cause hidden damage).

Now I'm wondering if there would he any point in adding a fecal fat score test. Hmmmmmm.

I was wondering recently whether some of the non-food tests would be worth running sometime down the road - like the anti-tissue transglutaminase antibodies... if they were to go down, would that mean something encouraging about the reduction in autoimmune activity (and maybe risk of additional AI issues?)?

I have a hunch that if you're not eating any foods to which you are sensitive, you won't be producing any anti-TTG antibodies, (after allowing for a reasonable healing time, of course), because we know that the risk of developing additional autoimmune issues, drastically declines when we control the symptoms of MC, (IOW, when we remove food-sensitivities from our diet).

Love,
Tex

[sarkin]

Tex,

I have a hunch that if you're not eating any foods to which you are sensitive, you won't be producing any anti-TTG antibodies, (after allowing for a reasonable healing time, of course), because we know that the risk of developing additional autoimmune issues, drastically declines when we control the symptoms of MC, (IOW, when we remove food-sensitivities from our diet).

That's my hunch (and hope), too. It would be interesting to see the rate at which they dwindle over time, and how that correlates with the experience of healing (meaning, reduced symptoms, increased energy, etc.). But I think I'll content myself with waiting a year or two, and then see where my curiosity is headed I do wonder whether those antibodies increase at about the same rate as anti-gliadin antibodies, or whether there's a lag time (but I'm playing "mad scientist" and "lab rat" primarily in the kitchen at the moment!).

Of course, if ATT antibodies were still elevated, that might reveal ongoing sensitivities (or hidden gluten - I pity the gluten that tries to get into *my* diet!), if I remain on my current diet - particularly for foods triggering subtle, ambiguous, and/or non-GI symptoms.... which is a different way of asking the question you're seeking to answer, about casein.

Love,
Sara

[Zizzle]

Cynthia,
Since we were dicussing EDS, you should be aware that most people with EDS have GI motility disorders due to the weak collagen. From what I read, most have SLOW digestion issues (gastroparesis, reflux, bloating, constipation). But many have D, and most are minimally diagnosed with IBS. Bloating after meals is a sign of slow stomach emptying. I rarely have stomach pain, but boy do I react instantly to many foods, including bloating. I'm beginning to think I have mast cells in my stomach that get the ball rolling. But maybe it's MC of the stomach, since it's painless for me in the colon too. I definitely react to high histamine foods like wine, eggplant, citrus, strawberries, pineapple, raw tomato, etc.