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T.H.

Member Since 11 Aug 2009
Offline Last Active Sep 27 2014 10:07 PM
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Posts I've Made

In Topic: So Discouraged

03 September 2014 - 07:32 PM

Hugs, hon.

 

For some reason, I think there's something more upsetting about getting sick when you are being careful, you know?  If you were not taking as much care and you get sick, it's more like 'dang it, I knew i shouldn't have done that.' But when you are taking care - and often missing out on foods and activities you may like as a result - it can be so disheartening.

 

We've all been there. I was in the exact same place a couple weeks back, reacting to things that I'd been trying to avoid and feeling SO down about it. But...the mood goes back up, yeah? Maybe you could even put a ridiculous little post it note put up in a few places to remind yourself that it will.

 

Or listen to some really uplifting music.  

https://www.youtube....h?v=L0MK7qz13bU (Like this one - it's even the sing-a-long version, heh. ^_~)

 

One thing that might help is Pinterest and paleo recipes.  These recipes will be grain free, dairy free, and legume free. Some have nuts, but many more involve meat. They are very often processed-food free. Pinterest has some amazing paleo recipes on there now - it's like a giant cookbook geared toward people who have to cook with whole foods. 

 

Makes it easier than trying to figure out all these recipes yourself. See if you can find some easy-to-make ones with some of the foods you have on hand right now, even.  Might make you feel just a little better. Even doing something like chopping a banana into pieces and putting it in the freezer, or freezing some blueberries, would make you a quick, cool snack food you could have right now for little to no effort.  It just seems like that might be helpful right now, yeah?

 

 

Take care - you can do this, and other folks going through it are always willing to listen if you need to vent a bit.


In Topic: Are You Amazing At Explaining Cross-Contamination? Help Me Be Lovely And Thou...

03 September 2014 - 07:17 PM

We've run into this with my daughter at her grandmother's house. She has gotten really sick there before, eating her own food entirely, and then even when she had her own food, her own utensils, AND her own prep area for her food. Very frustrating, because she gets SO sick. 

 

In my experience, the biggest issue to find out WHY it's a big issue for his family. If it is. So to start off with? Ask him. Or ask him to ask his mom her opinion and find out.

 

I've seen some who freak out over this because they feel like YOUR doing something is somehow a personal attack on what THEY are doing. Being sensitive, I'm sure you've run into this even with other celiacs, people who somehow feel that because you choose to avoid gluten to a certain level, you are somehow making a comment about what they should do, or how gluten free THEY should be, rather than just sharing what YOU do.

 

But that's not the only reason. My mother, for example, used to get really upset because she didn't understand that heat doesn't get rid of the gluten, and so she felt my worries about contamination were a comment on the cleanliness of her house.

 

Others are frustrated because they don't think the contamination is really something that's even possible, or that you are acting more sensitive that you need to, or that ALL people who eat gluten free are doing it because of a fad and then you'd REALLY be over the top in avoiding it. Or it can be a politeness thing - where if someone offers you food, you should eat it (unless it will kill you) - usually because they don't understand what the issue is. Or that it's rude to eat in front of someone else who isn't eating. Or they 'know' a celiac that that celiac doesn't need to worry about any of this stuff. All sorts of potential reasons.

 

Once you know the reason, I think the best way to approach this is to address their main concern first. If it's disbelief, find something simple that can educate (although this may never work, as some people will never believe it's a real thing). If it's worries of being rude to a guest, you can quiet any fears that you are complaining about their hospitality and let them know that you appreciate their company so much that you WANT to do it this way to ensure you get to enjoy as much of it as possible. If it's cleanliness, you can address that. 

 

Mostly, just approaching it from that angle I think helps, you know?

 

As for talking about contamination - I thought this one lesson germs, from a kindergarten teacher, was great. Although not one I'd do in someone else's kitchen. Cover a piece of (gluten-free) bread in chocolate pudding. Hold it in your hand. Put it on the counter, open the fridge door and get out the mustard and mayo. Get a knife. Spread the mustard and mayo and double dip. Put the jars all away. Then pull back the chair from the table and sit down, put the bread and the knife on the plate, and rest your hands on the table. - maybe you could film it.

 

This is how contamination from gluten spreads. It's not to the extent that a bunch of pudding spreads, of course. And it's obviously NOT going to be as dramatic as a lot of pudding, but it gets the IDEA across...that what you touch is at least a little contaminated, unless it's washed off or rubbed off. It will not dissipate into the air if it sits on your hands or the knife for a while. Or from the fridge door, or the back of the chair, or wherever.  

 

It just may make it clearer why it can be tricky for someone very sensitive to make food in a kitchen where there is a lot of gluten, because any contamination is invisible. So the fridge door may be fine, or it may not. The counter may be fine, or it may not. The table top may be fine, or it may not. And if you don't know, then it makes it harder for you to ensure you stay completely healthy to be able to enjoy the trip with them.

 

Don't know if that'll help, but it's helped a couple times explaining to, like, my daughter's grandmother about why she needed a safe space to make her own food.


In Topic: Follow Up To T.h.: Mastocytosis

30 August 2014 - 07:35 PM

I believe MCAD patients commonly will not test positive for mastocytosis, but will have signs of it, such as having high tryptase levels.  The only difference between the 2 is that mastocytosis shows the patient has too many mast cells (somewhere, and not necessarily in one place), but the MCAD patients have a normal mast cell count (at least in the locations where checked), but the mast cells they do have are too easily activated.  The high tryptase indicates they were activated.

 

I'd second taking a 24 hour tryptase test, yeah.  I'd add a 24 hour urine test for prostaglandins and histamine levels, too - anyone getting this would really want to look up how to keep it cold, though, and how the lab is supposed to as well, and make sure the lab understands this. There's information on the web.  It's a rare enough test that many times, the lab will think they should treat it like OTHER 24 hour urine tests, which don't need to be kept as cold quite as rigorously.  I've known a number of people who had the test ruined because of this. 

 

MCAD folks will test negative for mastocytosis, yup. So the stains won't show any extra mast cells, because as you said, Finally, there aren't any extra cells to notice. However, MCAD folks often have normal tryptase levels but other markers elevated, like histamine and prostaglandins (on the 24 hour urine test).  That was my situation, actually. I can't recall why the elevated tryptase is more common with mastocytosis, though. 

 

Getting diagnosed with MCAD, it reminds me a lot of getting diagnosed with celiac disease, in some ways. I had so many 'oh, that finally makes sense now' moments, you know?

 

Although for me, I found that I have to be just as careful about gluten as I was before I was diagnosed. :-(  While sensitive, I don't think that I react to quite as low a level as I once speculated but if I get glutened at all, even slightly, my reaction to gluten seems to set off my MCAD and I am really, really sick for months afterward. So I take no chances of accidental gluten contamination; it's worth it to not lose half a year every time it happens. :-/

 

That was a bit disappointing, honestly.  I was kind of hoping that maybe after diagnosis I'd be better able to tolerate more foods and do more, but it's been more a case of eating pretty much like I was, only I'm better able to understand why some of my previous choices were keeping me healthier. But having that understanding is at least worth quite a bit, really.


In Topic: Follow Up To T.h.: Mastocytosis

28 August 2014 - 06:54 PM

Congratulations on getting diagnosed. Such a relief to at least have some better handle on where to go from here to stay healthy, yeah? Have the doctors and you had any luck on feeling better since you were diagnosed?

 

For anyone else reading this, sometimes the MCAD symptom information can be a bit harder to find than the mastocytosis symptom information (MCAD may not go into anaphylaxis as often, or sometimes ever). So to help with that, this is the most recent diagnostic guidelines for MCAD, with a chart in the middle of the pdf that lists symptoms.

http://www.wjgnet.co...pdf/v3/i1/1.pdf

 

 

 

 

 



In Topic: Mast Cell Activation Syndrome (Mcas)

23 April 2014 - 02:30 PM

This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - http://www.wjgnet.co...pdf/v3/i1/1.pdf

 

I imagine that may be of some help to her. ALSO, the mastocytosis society will answer questions from doctors - they have some experts who have agreed to do this - about mastocytosis AND MCAS or MCAD.   So she may want to check that out, too.