This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I had the same experience as PegLeg84 when it comes to food intolerances.
I do not tolerate grains well, but for whatever reason, if I have corn specifically, it increases my anxiety levels unbelievably. I will literally wake up anxious for no reason the day following corn consumption, and feel anxious for the entire day, sometime two if it was a lot of corn. And then it just disappears if I stay off the corn. Very strange, and I have no explanation for it. But I have met others who have mentioned similar experiences, with food consumption of some kind tying in to increases in anger or anxiety typically. The most common I've heard were grains, dairy, or soy, at least among my acquaintances. Haven't heard anyone able to explain it well, though, so it's all anecdotal and speculative.
Nutritional deficiencies might be really worth looking at. If you get vitamin levels tested, you might want to get a copy of the test results. My PCP and I have had some discussions about vitamins, and he happened to mention that in med school, he was taught that vitamin levels caused no problems unless they were significantly deficient. But in practice, he had a few patients with borderline low vitamin levels report back to him that their symptoms/problems had improved significantly when they took supplements of these same vitamins, so he no longer believes this is true. He tends to recommend trying a supplement for borderline vitamin levels now for some of his patients who have symptoms that match those of low vitamin levels. So, it might be worth looking at that, perhaps.
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.com/watch?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.
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.
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.
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.
Even if you don't use this product, I'd recommend reading this, because while this product - which uses barley malt but is labeled gluten free - is not certified by the GFCO, it is made in a facility that is certified as gluten free by the GFCO. So, a potential concern for other products made in the same facility.
There is also some discussion of something that it seems to me is good to keep an eye on: what may be a disconnect between what the actual FDA rules ARE on being gluten free and what the companies are interpreting the rules to be. I imagine this is going to be more of an issue in the beginning, when companies are still trying to understand what compliance to the gluten free regulations entails, but better we stay aware and safe until they get it sorted, yeah?
This is the latest information on diagnosing MCAS/MCAD that I know of. It was put out this February - http://www.wjgnet.com/2218-6204/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.
If you've got a good control over it, the only reason I can think might be for emergency situations.
If you ever, got forbid, got hospitalized for something, were in an accident, that sort of thing, you might need a diagnosis to lend weight to what you need to do to stay healthy. Or at least have a doctor who knows some of your needs and can back you up in the face of other doctors who may ignore or not believe you.
I've been glad to get that diagnosis for this reason, even if I'm not using any meds and had to do most of the research on the diet myself.
Yeah, it does look like that - I wonder how common it will turn out to be whenever it is eventually researched, you know?
Very glad to hear that you are doing better.
I'm hopeful for myself. I got a nasty virus and all my symptoms went a bit crazy, unfortunately. :-/ Even on a low histamine diet now, I'm getting things like allergic reactions to exercise, hives from the sunlight on my skin - seriously, what's up with that? 0.o But in some ways, that's kind of a good thing because my symptoms getting so weird and so much worse is what made me go back to my doctor one last time and finally get diagnosed by a new expert in town. And because of that, we got my daughter diagnosed, which makes it all totally worth it to find out something that's going on with her.
Do you find that you have histamine overload from normal histamine causing activities, like exercise or stress, or is it more the foods that mess with your histamine levels?
there was a thread on this in one of the MCAS groups recently and, well, this is a list of what points were made, best I can remember! i was trying to learn about this as much as I could, too!
1. Depending on why a food was on the 'bad' list for a low histamine diet, some people had trouble with it, and some people didn't. There were some who only had trouble with the foods that inhibited DAO, or who only had trouble with foods that encouraged histamine release, or foods that were high in histamines naturally. Some reacted to all, some to only some or one of the categories.
2. The histamine load for the day made a big impact. So on days when one has had more mast cell release and potentially more histamine, some of the high histamine foods could be more of a problem.
3. Some people don't really seem much impacted by the low histamine diet. It might be due to the fact that the mast cells can release all sorts of things, and some MCAD folks are actually NOT systemically high in histamine levels most of the time. They might be high in other things, like prostaglandins, or I've met two now who have heparin release as the biggest issue; bleeding problems for them. So if histamines aren't as elevated for you, high histamine foods may not impact you as severely as others.
When I started the low histamine diet - because I was eating some of the 'bad' foods, too, like avocados nearly daily - one thing that I noticed was that it lowered the level of the reaction from some OTHER foods, and lowered my over all reactivity. So even if these foods weren't enough to usually set me off, they were contributing to my susceptibility to being triggered by something ELSE. That was helpful to realize.
Most people I talk to have the list individualized eventually, so there may be some 'bad' foods that you do just fine on, too.
Since it's been nearly two months since you posted, I'm hoping you are doing well and have found more about this to help you out! :-)
The newest information down the pike on this condition. :-)
"A concise, practical guide to diagnostic assessment for mast cell activation disease" by Afrin and Molderings
Published February 2014
And hi, Jebby! :-)
Just wanted to add something of my own personal experience as someone else with MCAD and Celiac Disease, in case it helped anybody exploring this.
1. My own reaction to gluten is the worst thing I have, still. It affects me for months. The doctor and I have discussed the symptoms and her thought is that it may be the celiac disease responding to the gluten which then triggers the mast cells because of MCAD, so a fun double-whammy that I feel very lucky I survived to talk about. This is speculation only at this point, however.
I mention this because I've now spoken to a couple of other celiac and MCAS/MCAD sufferers who have something similar: a really, really bad reaction to gluten. Not all celiac/MCAD folks, but a few of us.
2. I'm extremely sensitive to very small amounts of gluten. The same celiac/MCAD folks i spoke to who had a huge reaction also had reactions to mere traces of gluten cc. I don't know if that means the intense reaction and reaction to traces might be more likely to coincide, however; not even close to a big enough sample size, obviously. But interesting data point.
3. I think one of the most important things you can do for yourself if you are searching for answers is to trust yourself and how you feel, and at the same time be fluid and be aware.
If you have symptoms that feel like you're being glutened, even when others disagree it's possible? Personally, I think you should explore it, but be fluid enough to adapt to what you find. Because if you pay attention, you'll find out soon enough if gluten isn't the issue, because you won't get better. Or if you do improve, it won't be complete, or there will be oddities and things that don't match up right.
All it takes is for us to be aware enough to notice when something is a perfect fit, and notice when something is not a perfect fit, then go and explore what else could be going on if it's the latter. Lather, rinse, repeat.
I had such a distinctive reaction to low levels of gluten that when I got glutened, there was no doubt what it was. Still isn't, even when it's to such low levels most celiacs don't have issue with it, even when I have to distinguish it from symptoms arising from other conditions. I wasn't aware that it was some weird MCAD/Celiac combo punch, but the gluten part? I had that covered. But then I had symptoms that were similar to glutening but not as severe, didn't match up quite right, and with those, it always felt more like a case of 'well, I'll treat it like gluten for now but keep exploring.' And exploration got me my answers.
I guess really what I'm trying to say is that if you have this - or any condition where things are a bit wonky or strange - you are going to have plenty of people telling you that what you feel is impossible, that what you experience is crazy, that you're overreacting by avoiding X or Y. Family, friends, even medical professionals may say this to you. And that hurts, and it can be hard to have faith in yourself when this happens.
Really, it's not a bad idea to take an honest look at what others have to say, to think about their arguments, but in the end, you've got to trust yourself. You're the only one who knows how you really feel, and what's been going on in your day to day life. If other people's arguments do not match what you experience, then move on and try to find the truth.
Here's wishing everybody finds out exactly what makes you healthiest and happiest, sooner rather than later.
Our daughter's GI doctor told us that there's a good chance she's not immune to Hep B. However, he didn't recommend testing OR getting re-vaccinated, because he said the chances that she will have a non-response again are so high. He is currently recommending to his patients that they simply be aware that this is a potential issue, and he's going to keep us up to date on whenever they may have a good way to vaccinate for this in the future for celiacs.