Mennoknight

The elimination diets I've done are of both kinds; I've avoided particular foods (usually common allergens) for some weeks at a time to see if I improve, and I've also done highly restrictive, generally all very basic foods diets for a few weeks at a time. I've never gone a month, so maybe I need to try that. Nothing has helped.

So here are some difficulties I run into in my mind:

I don't have any digestive issues at all, just constant pain. It doesn't seem to worsen when I eat particular foods or even really go down, except very slowly in the 8 months since I stopped eating gluten. If my pain is decreasing naturally (just far too slowly), wouldn't that suggest that I don't have a food sensitivity keeping it up?

Also, if practically any food could be the culprit and there are likely multiple culprits, isn't it almost impossible? To truly figure out based on some things I read on this forum, I'd need to eat only five foods for a month or so, and since presumably any one or two of those could complicate things for me, I'd need to try a different five foods for another month or so, and maybe even either 1. use fewer foods or 2. systematically mix and match other foods to make sure I've tried only eating small numbers of combinations of foods for long periods of time. I don't know, I guess it just feels like it's hopeless once I get anywhere past the challenge of only eating vegetables for several weeks. In any case, how often do food sensitivities lead to permanent, stable, high levels of pain, rather than either digestive issues or other short-burst side effects? I see that everyone has these sensitivities, but people say so little about the symptoms.

Thanks for the answers, your experiences are really interesting to learn from.

Hello,

Beginning in August of 2009, I have had a small-fiber neuropathy, diagnosed by biopsy, that caused pain in my hands and feet, pretty intense pain. Beginning in spring 2011 and then worsening in January 2012, I developed significant joint pain that persists to this day, though perhaps the edge is off a bit and I am much more mobile. I have pain in my shoulders, arms, wrists, hands, fingers, hips, knees, and sometimes ankles. Bizarrely, the neuropathy abated enormously after I took vitamin B12 supplements for a bit... I've heard that it's not supposed to work that fast, but I take what I can get.

In any case, I was diagnosed by endoscopy and then blood test and the gene test for celiac in February of this year. My pain has remained significant, despite strict avoidance of gluten. While I never had GI symptoms in the past, I now get a few when I have accidents, but they have always been very minor accidents. I read on these boards all the time, and I'm aware of how many places gluten hides and how dangerous even tiny amounts can be.

In any case, I have tried elimination diets many times, and they have never helped. Usually I've avoided everything but vegetables aside from nightshades, fruits aside from citrus and a couple others, and chicken, and I've generally avoided everything for a couple weeks. I never improve. I'm wondering, can I basically rule out food as the source of my issues, or should I do something even more dramatic, like fasting for a week or something like that? I just want to know I've done everything I can. The pain is terrible, and it has been 3.5 years and I've cancelled many life plans because of the disease. It's rough at 23

Any other suggestions? Without digestive symptoms, is it plausible that a food would cause pain like this?

MOST importantly, I'm not suggesting all food that can be be made gluten-free. I'm suggesting labeling! All I think is that I should know. I should have the right to know whether something will poison me without calling every company about every product. On the other end of the line, the Kraft representative had easy, accessible information that his product was poisoning me and hurting my body, and I didn't. I'm not talking about a big expenditure. The cottage cheese should have said "Contains: Milk, Gluten," rather than just "Contains: Milk." The distinction is huge for us.

I don't get CC symptoms, nothing changes. I called Kraft on an impulse even though my dietician and most sources online say not to worry about plain dairy, and they told me it is made with a barely additive. Argh. I know about other sensitivities, and I may have them (though the damage to my digestive system was only moderate, so I doubt it, as do my doctors and other Celiacs I've talked to). Elimination diets haven't helped me yet, though I try them every few months for a few weeks.

Gemini, this is the problem. It isn't easy for people to make the adjustments, which is why so many people on this board complain of CC and the suffering that comes with making small mistakes, and actually, things don't have to be the way they are. Europeans have a far easier time finding gluten-free food, according to everything I've read and the experience of a family I know that does mission work in Italy and has for over a decade with two Celiac children (and plenty of traveling all over Europe).

Hey all,

This is long, but I believe it is deeply important. Please consider taking the time.

I've been a constant guest on the boards here since I was diagnosed this last February. I'm 22, and my symptoms are a terrible neuropathy and even worse joint pain. Since I began to use these boards, I've found the encouraging attitude, solid advice, and diversity of experiences to be very helpful in my difficult journey. Thank you for participating in this community, it is a wonderful one. I feel bad that I get so much out and put so little in in terms of posts.

It bothers me that I don't get much of a sense that others see this as an issue of justice, as I do. If 1 in 133 Americans are indeed Celiacs, we deserve the status given to the primary allergens. Every packaged product should have an unambiguous label. And we shouldn't accept anything less. Processing food products on exclusive product lines is not that difficult; companies already do it all the time to avoid contamination with the common allergens, and accurate labeling is even easier. I have been unnecessarily contaminated several times by products that could and should have been gluten-free or at least labeled. I hear from so many Celiacs that "we just have to be totally careful and buy different (almost always much more expensive) versions of all sorts of everyday products," and it's just absurd. No one should have to make phone calls before buying all sorts of standard products in grocery stores. It should be obvious No one should have to suffer for weeks because they made a tiny mistake, and we all know that would happen much more rarely if our labeling wasn't dependent on the voluntarism of corporations, which is a joke. Sure, we should all just eat more vegetables instead, but we have the right to choose, and the right to make informed choices.

Before I was diagnosed, I attended some sessions and volunteered on the anti-GMO issue, and I learned that historically, pressure from only about 10-15% of a given food market has led to major shifts in the past. While we don't represent that much, I think that food companies are in many cases conscientious, and that we could be doing so much more to make ourselves known.

I am committing myself to call two companies, Kraft and Kroger, that have both hurt my body severely, in Kroger's case by having a somewhat (not entirely) deceptive gluten-free list and Kraft by selling gluten-contaminated cottage cheese. I'm furious, and I'll politely let them know every day for awhile that I wish they'd make their products gluten-free or labeled.

I think we should all be doing this. Just trying to struggle through for ourselves leaves us all weaker and vulnerable to the whims of people whose legal responsibility is to maximizing profits, not the welfare of others. Asking the corporations to be nice and always label isn't enough, and asking the government to regulate isn't enough, either. We should work together to call companies and exert pressure. I believe that celiac.com's boards should have an entire section devoted to action to raise awareness and make the world a safer place for us. Thoughts?