T.H.

I was happy to see that wine from barrels sealed with gluten were finally tested. There is also some information on wine, oak barrels, sealing barrels with wheat and how common it is.

You can find the information here: http://www.glutenfre...g/blog.php?id=8

The good news is that the two tested wines were <10 ppm on the Competetive R5 Eliza and <5 ppm with the sandwich Eliza. The testers used both tests because the Competetive R5 is aimed at detecting pieces of gluten, which the sandwich Eliza is not as good at. "...both the Food and Drug Administration and the TTB believe that currently there are no validated methods available to accurately assess the gluten content of fermented products. This is because the competitive R5 ELISA has not been formally validated in a multi-laboratory ring trial."

I figure even with the slight uncertainty, these test results may come as good news for folks who are fine with foods that have gluten at the above concentrations. It's not 100% yet until they get the test validated, but still, very nice to get the information. :-)

As anyone reading the 'vapors' post recently noticed, there's something that comes up in the super-sensitive section periodically. Someone mentions a reaction that many don't think is possible, and during the course of the discussion of 'possible' and 'not possible,' the idea that the original poster may be having psychosomatic reactions comes up. And the poster is usually told that this is likely the problem by at least a few folks.

And things seem to get a bit heated after that.

This has happened often enough in this section that I thought it might be appropriate to actually discuss this as an issue in and of itself. Because some of us don't find it offensive, and some find it extremely so. I'm hoping this might be a place we can open a dialogue about this, without it becoming personal, or about a specific problem or situation. :-)


I'll be upfront: I would not tell someone that I thought their reactions were psychosomatic. Even if I thought they were, I wouldn't. So that's the side I'm going to come from. I'm sure there will be plenty of folks to further the discussion on either side, if there's interest.


In a pretty large nutshell, here is why I would not tell someone that their reactions are likely psychosomatic:


If someone claims that they had a reaction and someone else doesn't believe that this reaction is possible, I don't think anyone has an issue about that, generally. We can disagree about whether a physical reaction is possible or not, or about how we think Celiac Disease works, or what can cause a reaction.

Responding with our disbelief is a statement of our opinion about a physical reality. 'I don't think this response is possible in this situation. I don't think Celiac Disease works that way. I don't think gluten is present in this place, or if it is, I don't think it would be in great enough amounts to cause a reaction.' We can even provide research, facts, anecdotes, whatever, to back up our opinions.

And that? That's not offensive. It can lead to some major disagreements, yeah, but it's opinion based on our own experiences and research. It can be polite, and specific, and often helpful to all of us reading it.



However, when someone is speaking about their reaction, we know only a sliver of information about the original poster. We don't know their personality, all the details about their situation, or how their mind works. We may have some information to make an informed opinion about a situation with regards to the gluten, but we don't have enough information to make an informed opinion about them. So if we're giving an opinion about this person's mental health and how that is probably affecting their physical health? It suddenly becomes very personal.

If we tell someone that they are having a psychosomatic reaction, we're stating a strong opinion about something we know nothing about: someone else and their mind. If a person were to write about how nervous and worried they are all the time and that they are looking for help in coping, I would think a discussion about how psychosomatic reactions work would be appropriate. But I really don't see how commenting on someone's mental health is warranted when they are merely sharing an observation about their own experiences, which seems the most common time for this comment to pop up.


I imagine many of us have had this exact, same label applied to us before we were diagnosed. When so many of us had symptoms that didn't match up to what a doctor was testing for and they decided we must be having psychosomatic symptoms. And in that situation, we might have come up some odd theories to try and explain our symptoms. We might have been completely wrong. We might have figured some of it out, but not all. But being incorrect about what caused our symptoms did NOT mean that our symptoms were psychosomatic.

When a doctor, knowing nothing about us or how our minds work, makes this assumption, it feels like a dismissal of our pain AND our ability to observe and reason as we try to solve why we have this pain in the first place. It's not their intention, obviously, but that's what the patient is left with.

It feels no less unpleasant when it happens in a group, however well-intentioned the members may be. Disagreeing with a person's conclusions is one thing. Commenting on the state of their mind during the course of a disagreement is quite different.

Both my family and my husband's have thyroid problems, hypothyroidism on my side, Hashimoto's on his. My daughter was tested last year and both her TSH and her Free T4 were too high.

We were vacillating on whether to take her to the endocrinologist or not, but in the end, I opted to wait and retest her. When I was reacting less and really careful in my foods, my thyroid numbers improved, so I was hoping the same might apply to her as well.

So, we've been SUPER careful. We already had a gluten free household and almost no gluten-free processed food, but we've been even more careful in the last year with her. We switched her to gluten-free certified foods only (her choice, as it made her feel safer). We dropped all grains because she was saying they are making her stomach hurt as well, and she reacted a few times to gluten cc with them. We don't eat out now and take all our food everywhere and she is much more careful about handling her food and touching her mouth while she's out and about.

She went from reacting every few weeks to maybe 2 reactions in the last 6 months. Big improvement.

We retested her again this week and her test results came back:
TSH went from 5.3 to 2.2
Free T4 went from 6.7 to 1.2

So much better! I'm so happy we waited and gave the diet change a shot. She's not completely well yet, but I'm so happy that our extra caution and consistency has resulted in improved health for her.

I haven't seen this posted up here yet, so hopefully it's not a repeat! :-)

This musical parody of 'One Day More' from Les Mis. is funny as heck. It's done with a food allergy/gluten free slant: 'One Grain More'


I laughed my behind off, except for the very, very end, and even that I could sympathize with.

Enjoy!

Just thought it might be nice for folks here to share how they are doing in Super-sensitivity land!

How is your diet working for you these days? Do you feel like you have it figured out, don't get glutened anymore, or are you still struggling? Any other issues that you've discovered since you started searching for answers, or is gluten the main problem you have to contend with? Does it feel like things are going in the right direction, at least, or not so much?


And...guess I'll start it off.

I'm feeling pretty good, overall. My weight is fairly stable now and I am very close to a nutritionally complete diet, finally, woo hoo! I still have to be extremely careful to source my food, but so far, it's keeping me healthy.

My few food allergies are still present, but easy to avoid at this point, now that I know where they are used as ingredients.

My super-sensitivity is still kicking around, but I'm happy to say that the serious reactions are nearly a thing of the past. The first year gluten-free, they were monthly if not more often. This week, however, it will have been a year since I had a very serious gluten reaction! Low level ones still happen occasionally, but no serious, scary ones, and that makes me SO happy!

The sulfite sensitivity I discovered a few months back is confirmed as confirmed can be, although as mine involves naturally high sulfur foods and sulfates as well. This is frustrating in terms of figuring out why a reaction is happening, because it's quite similar to a gluten reaction to low levels of gluten (lots of neurological stuff).

It's also fairly common to have substances that are sulfited used in the same place as substances that are gluten derived/ cc'd, too. So figuring out whether a reaction is to gluten cc, to sulfites, or to potentially both is a real pain in the petutie. Slowly learning more and more, though.



Re: avoiding gluten, I've said before that I could never say for sure that all my reactions were to gluten, that I might find out someday that I'm avoiding something else when I'm avoiding the most minute traces of gluten.

Turns out, sometimes that 'something else' is sulfites and sulfur, like avoiding sulfur-containing soaps that are being used on organic greens as pest control aids. I kind of wish that it was sulfites only and NOT super-sensitivity to gluten, but so far, that doesn't tracked when I investigate it.

However, this whole thing has just cemented how I felt when I was first diagnosed with Celiac Disease after 20 years: we as patients need to trust ourselves.

If we do something and it makes us feel better or worse, we can investigate it, research it, analyze it, listen to opinions on it and whatever else gets us more information. But in the end, I truly believe that we need to trust ourselves and what our bodies are telling us more than doctors' opinions that we are 'healthy' when we feel sick, more than what we should be able to do or how we should react or even what seems reasonable to other people.

We're all different and we're all searching for answers and sometimes, we can find the solutions before we know exactly why those solutions even work. They may seem really weird to other people who aren't in the same place, but that doesn't mean they aren't the right solution for us, personally.

Or to quote one of those great Murphy's War Laws: if it's stupid but it works, it isn't stupid.


I hope that where ever anyone is at, in their diet, it is at least slowly getting better. Hope you are managing to react less frequently, feel better, and find more safe and tasty food all the time!