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T.H. last won the day on October 22 2012

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  1. 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.



  2. 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.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.

  3. 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.

  4. 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.

  5. 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.







  6. https://www.glutenfreewatchdog.org/blog/Product-alert-Greens-Plus-bar-contains-malt-yet-labeled-gluten-free/35


    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?

  7. 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. 

  8. I've never felt that on this front a diagnosis is important. (at least for me) Is there any real reason to get a diagnosis? I seem to have moderate to good control of things myself with diet depending on how my environment changes.


    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.

  9. 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?





    Looks like there are quite a few of us with this additional intolerance (and oh boy, right?!)  :rolleyes:


    At least we know what it is, though--trying to figure out what else is at play is maddening, isn't it. 


    Hope you are feeling better. If I stay away from the high histamines, I sure do. It's the overload that gets me every time.

  10. But the food thing has me confused. I can't eat soy, spinach, or drink wine. Chocolate seems to bother me sometimes, but other times it's OK.


    I have never had any problems with avocado, cheddar, dates, sausage, yogurt, vinegar, bananas, or eggs.


    The rest of the foods on the list are things I haven't tried or don't eat anyway.


    And corn is the very worst offender for me, even worse than gluten. I don't see that on the list. Maybe I DON'T have this?


    I'm so confused!



    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! :-)

  11. 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. 

  12.  Has anyone else dealt with this? Any advice would be appreciated!


    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.

  13. I just came across some information that I thought might be of interest in those who are gluten free but have a lot of symptoms and seem to react allergically to many OTHER foods.


    There is a somewhat controversial condition known as Histamine Intolerance that is speculated to involve abnormally low levels of DAO, the enzyme that destroys histamine. If histamine levels rise due to this, then they can begin to cause allergic reactions like congestion, headaches, sneezing, itching, rashes, hives, even breathing issues, or stomach and gut problems.  


    Some women can even experience a cessation of their allergy symptoms when pregnant, because the placenta releases high levels of DAO and so histamine breaks down faster. 


    The reason this may be of interest to Celiacs or gluten intolerants is because one of the places DAO is found in the membranes of cells lining the small intestine, and in the upper portion of the colon. So people with damage in either of these areas may not be making as much DAO as they normally would. 


    So if you are recently gluten free, haven't healed up yet, and are having many allergic reactions, it might be worth you while to check out histamine intolerance and a low histamine diet, too. :-)

  14. This may be a shot in the dark, but did your doctors ever check you for mast cell activation disorder(MCAD) or mastocytosis?  


    I was recently diagnosed with this, and a lot of my experience resembles your own. My symptoms grew worse after going gluten free, although I eventually found a way to improve them, I just didn't fully understand why. I had to go 'super' gluten free or I would just bite the dust. Found other food intolerances and had to avoid those. Started reacting to chemicals in a big way and had to avoid those, too. Yeah, supplements kick my butt. I can't take them either.


    I would keep finding things to make it better, and then it would start to get worse again and no doctors could figure it out until I finally got tested for MCAD and had it - and it was just a set of urine and blood tests, but it had to be the right ones, is all. 


    Both conditions are where the body's mast cells - which degranulate and cause the symptoms of an allergic reaction - react abnormally and trigger an allergic reaction to all sorts of things that you wouldn't normally be able to.  In the past, mastocytosis was recognized more by those who would go into anaphylactic shock all the time but tested negative for allergies.


    However, MCAD, which is much more recently recognized, is actually more when the body's mast cells can either release everything at once (causing anaphylactic shock) or they can slowly 'leak' the contents out and cause ongoing, chronic problems, but not necessarily symptoms that you'd take to be an allergic reaction. Some of these can be inflammation, rashes, itching all over, gut and bowel issues of all kinds, fatigue, bone and joint aches, muscle aches, hair loss, exhaustion, headaches, anxiety and depression, insomnia, and so on. Things like chapped lips or mild dehydration are common because the body's response also results in loss of fluids into the tissues as the body reacts.


    People with this condition have 'triggers' that trigger the mast cells, and aside from foods and hay fever type allergens, chemicals are some of the most common triggers. Some doctors believe that many people diagnosed with multiple chemical sensitivity may actually have mast cell disorders, instead. Most people I've met with this eat almost no processed foods at all. And a much higher number of them than the regular population are either gluten intolerant or celiac.


    If you want to explore this, the best information I've found is on facebook support groups. You can find a few if you look up MCAD, mast cell, mastocytosis, or mast disorder.  These groups have some great files with lots of technical information on how to get tested, symptoms, treatments, all sorts of things.


    And if you wish to get tested, you may need this, because many doctors don't even know how to test for this, let alone what the symptoms are. I currently have a 7 page packet to give to anyone in the ER if I'm ever taken in, and about 2 pages are instructions for the doctors on do's and don't's, because they are so unlikely to know about it. 


    It truly does seem like it might be worth exploring, at the very least.  Wishing you good luck, and feel free to PM me if you have any questions. 



    Hello everyone! I’d like to introduce myself to this forum, and it is about time. I have been lurking around here for the past 6+ years: ) I am basically at my wits end and in need of some advice.
    To give you some background, I was diagnosed with Celiac disease about 6 ½ years ago through blood work and biopsy. My symptoms prior to diagnosis were bloating and C, insomnia, recurrent sinus infections, itching all over, and the list probably goes on. Anyhow, after diagnosis I went straight to a religious gluten-free diet. When I say religious, I mean every item was checked with the company, new dishes and utensils, body care items. I was expecting to feel better. However, I actually felt worse for a long time. When I say worse I mean fatigue, mood issues, aches and pains, sleep problems etc. On top of that I developed DH skin rash about a year after I was diagnosed.
    During the past 6 ½ years I have meted out that I am a super, super sensitive celiac. I also have some other food sensitivities that I have discovered. I eat very little in the way of processed foods, and only those that I am sure I can tolerate after years of maddening, extensive “food testing” on myself. However, all of this has only partially helped.
    I am only 36, but I feel my health has been on a downward spiral for the past 8 years or so. After having the most beautiful little baby in the world 18 months ago things have only gotten worse. I have recently been diagnosed with scarring alopecia; an autoimmune disease which causes permanent, progressive hair loss. This has been extremely devastating for me to say the least. Also, my primary physician is now referring me to a rheumatologist because she feels I may have fibromyalgia, but no one is really sure. I seem to have many of the symptoms of fibromyalgia including body aches, headaches, sleep problems, and numerous chemical sensitivities. The chemical sensitivities are so bad that I can’t even take a multi-vitamin at this point without a flare-up of symptoms. I haven’t really accepted the fibromyalgia diagnosis yet since I think something deeper, possibly food related? may be going on with me.
    I also have sensitive skin, constant chapped lips, thinning, brittle hair and I struggle with anxiety and depression issues. I was tested for thyroid imbalance including antibodies and screening for Hashimoto’s. All tests came back within perfect range.
    I have done a lot of research on leaky gut, and think maybe this is an underlying problem for me but not really sure. Several months ago I tried the Specific Carbohydrate diet for 30 days. I was hoping this would be my magical cure, but I only felt worse. My fatigue, insomnia and body aches increased immensely during this time despite eating 2000 calories a day. I had to discontinue the diet because I couldn’t function. I am now trying eliminating grains again and basically eating paleo autoimmune. I am in week 2 and I was sort of feeling better but last night I ate a huge helping of homemade kale chips. After eating that my stomach bloated up and My fibro-like symptoms flared up. I couldn't sleep and I feel like hell today! Is there such thing as a kale intolerance?? Geez. I'm starting to feel like nothing can help me and I'm intolerant to everything!!! I don't know what to eat anymore.I’ve also tried numerous supplements such as EFA’s and vitamin d but my body seems unable to tolerate or process these things and I just feel worse.
    Sooooo…just wondering/hoping any of you might have some insight into how I can feel better, since it seems many on here have similar issues? Maybe my issues are not food related and I'm barking up the wrong tree? I’ve apparently baffled my doctor and I haven’t yet gone the naturopath route since I can’t really afford it. I want my life back and I don’t want to feel sick every single day. If I hear one more story about how simply eliminating gluten will bring about perfect health I might scream! This has not been the case for me. Anyhow, glad to meet you all, and any insight would be much appreciated. Thanks!!

  15. For lasagna noodles, Jovial makes these, too. I haven't seen any in the stores but you can order them online: http://www.jovialfoods.com/products/brown-rice-pasta-gluten-free.html


    For mustard, it's surprisingly easy to make, if you have a safe vinegar. 


    For a fat, we ended up learning how to render our own fat. Many butcher areas at the store will save the fat for you if you talk to them beforehand, and sell it to you for not too much. Very easy to render, and if you do it right, it's a neutral smell and taste, like shortening. I never could find a shortening that worked for us. 


    And you may want to check on the Gorilla Munch cereal if you get it again. My kids would have them as snacks at the grandparents sometimes, so I've been watching them, and for a while, they added the 'also processed in a facility that processes wheat' label for some varieties, and then only some of them I found did. Not sure where they're at now. I'm assuming there was some changing up of facilities and products, possibly, but if that's ever an issue for you, you may want to check the particular box you're buying, just in case. 

  16. I wonder if they were referencing the same study as the Celiac Disease Center is for their 60% number:



    Unfortunately, the celiac center doesn't reference the research specifically, either. But the research center makes more mention of the fact that diet compliance can affect the results.


    The study results seem to vary, otherwise. I wonder if they are more consistent when you look at them by area, perhaps? Some differences in brands or gluten free food laws that might affect the patients' food? Or maybe better patient education and support?


    I know the study Kareng mentions is from the Netherlands, but a study in Italy and in the USA had different results. It seems weird that the results would be so different without something else going on that is maybe not being taken into account by the researchers, you know? :-/




  17. Re: testing


    The one thing that's good/bad about the DH is that IF you get gluten contamination, which is almost certain to happen eventually, then you'll likely get a DH flare up, and THEN you can get tested.


    I would think it might be useful to find a celiac knowledgeable dermatologist NOW. Go in to see them, talk to them about wanting to get tested eventually, and set up a protocol so that whenever the day comes where you get gluten contamination and have the rash, you can get in ASAP and get that biopsied before it goes away, you know?

  18. Thanks!


    I've been reading about the DAO enzyme just the other day!


    My own lack of typical anaphylaxis was why it took me so long to get diagnosed, too. I guess with the MCAD thing, you can be a 'leaker' or a 'shocker.' The shockers go into anaphylactic shock easily. The 'leakers,' which is the category I fall into, have cells that leak their contents more slowly when triggered and result in much more chronic problems. It can still lead to anaphylaxis, but I was told that 'leakers' may never have anaphylaxis for years or even decades, and then something triggers it into getting worse and suddenly they get diagnosed finally.


    Trippy stuff.


    So glad you found out what it was, though. Nice to have a doctor who listened to you!



    I  tried a paleo diet and found myself having symptoms. Now, how could that be--I have eliminated everything people suggest?

    Well, many foods I was eating are high in histamines. It was my aha! moment. I had suspected hh before, but of course, my doc back then was very skeptical "I doubt it. you don't have allergies blah blah "...yeah, okay. Not a real "thinker outside the box".that guy


    I asked my new GI doctor about the lack of the DAO enzyme in the gut (if you have any form of gut impairment) and he said "holy cow--how'd you figure that out? yes! you could very well have a deficiency of the two enzymes that regulate histamine in the body". He feels it is temporary (as I do not have anaphylaxis and I do not have classic allergies found during testing) and suggested avoiding all high hista foods for 6 months (easier said than done) but I did a decent job of it and now, I try to follow a low histamine diet and it has resolved the red, burning skin I had, mouth, face and scalp sores, the heavy chest sensation, gut and bowel issues, and extremely sore joints and muscles (they still hurt but not as much). Most of all, it stopped the pounding heart at nighttime and the ensuing insomnia I would experience at times if I had eaten too many HH foods.


    I found this article interesting:








    and here are the dietary guidelines on this woman's blog--she did a great job spelling it out.



  19. 1desperatelysaved and GottaSki - My IgA levels are normal, my IgG levels are normal, and my IgE levels are normal, too.


    I contracted a little virus a few months back, nothing big, but it sent everything into a tailspin so I was back at the doctor's looking for answers. A new doctor had just come into town a few weeks back, who specialized in both Immunology and Allergy (I actually don't know what that makes her. Both an allergist and an immunologist, perhaps?). She'd just solved a couple of my doctor's 'mystery' patients who had lots of problems and no answers, so he sent me over to her.


    I was given a whole host of blood and urine tests, but the one that was the biggest 'ding' was the 24 hour urine test for prostaglandins and methyl histamines (I believe that's the second term?) Both of these were through the roof for me. 


    I was not given a bone marrow biopsy because some of my test results made it clear that mastocytosis was unlikely, so the doctor didn't feel a biopsy was warranted.  I know that the mastocytosis society has a links to various doctors who specialize in this, as well as tests that are typically ordered (I found the most use out of visiting both the mastocytosis society in the USA and in Canada). 


    Irishheart - Thanks. :-)  Out of curiosity, what diet has worked well for you for the histamine intolerance? That's something I'm supposed to be looking at now, and there are so many variations of this that it's always nice to find out what's working for others, you know?

  20. I've been MIA for quite a while now, and I just thought I'd update as to what I've been doing, because I just got a diagnosis that is SO weird, but it explains everything AND it could be relevant for a few folks here, so I thought I'd share.


    I react to crazy small levels of gluten, and have written in the past that I turned out to ALSO react to crazy small levels of sulfites, it turns out. I thought that might explain some of my unknown reactions, but it was still so crazy, how much I reacted to. Some things still didn't quite fit, not like they did for some others I know with these two issues.


    I react to walking through a bakery, I react to what I assumed were very small particles in the air as the smell of certain bakes goods has set me off. I had a very hard time staying well, and had to avoid anything that has any gluten contamination possible, or sulfite contamination, even the teeniest, tiniest amount. I buy produce from famers I interview to avoid any contamination on the produce, and same for ranchers and fisherman and so on. And still sometimes I would get sick and react and couldn't even find a reason for it.


    Sometimes it felt like I was reacting to the whole world. And I know some folks here struggle with that too, where they are reacting over and over, and it feels like there is gluten AND something else and they just can't get a handle on it, you know?


    Turns out, there is a condition that can make a person this sensitive; a few related conditions, actually. Mastocytosis is one of these, and Mast Cell Activation Disorder is another. These are WEIRD disorders. Mast cells are usually triggered by an allergen and release a cocktail of goodies into your body (like histamines), and can eventually cause anaphylaxis, but they can skip that side of things and instead cause inflammation, neurological problems, gut pain, and all sorts of fun stuff. 


    Those with a mast cell disorder have mast cells that can trigger without the presence of an allergen. They have, instead, 'triggers.' These can be foods, like gluten, or chemicals, or even smells - not particles in the air, but an actually  scent hitting the nose can trigger these suckers. And even more fun, things like, say, taking a hot shower, or getting a cold or flu, can trigger these cells to start an allergic reaction.


    It can take very, very little to trigger mast cells for this condition, so miniscule traces of a trigger can set it off.


    I have just been diagnosed with mast cell activation disorder (it was only officially given a name in an international conference 3 years ago, so I'm lucky to have gotten the diagnosis!). While I am a celiac, gluten is ALSO one of my triggers. I do not have a normal allergic reaction, like hives, that would have clued me that mast cells are involved, which can happen with this disorder. I instead get neurological reactions.


    Whether the celiac disease AND the mast cells are doing this to my brain, I don't have any real way to tell. But if they both do, it would explain the huge whammy I get hit with when I've gotten gluten contamination in the past. 



    Mastocytosis is considered an orphan disease, less than 200,000 in the USA. I believe MCAD has fewer people diagnosed than that. HOWEVER, some experts who are diagnosing this have said that they believe MCAD may be more a case of 'rarely diagnosed' than actually rare, because they are finding more and more folks with this. There is a slightly higher risk for those who have auto-immune disorders.


    A number of the MCAD folks I've met cannot tolerate gluten at all, either, and seem to have very severe symptoms to gluten contamination. And they react to very, very low amounts of most of their triggers, so they'd likely have been considered super-sensitive celiacs/gluten intolerants, too.


    So if you are still struggling and searching for answers even while very gluten free, and can't seem to eliminate all contamination that is causing you problems, it might be worth your while to explore this. 


    And as for me, I finally have an answer....it's kind of a crummy answer, because there isn't a cure, and a lot of folks with this end up very isolated, because you have to avoid what 'triggers' you, and that's in a lot of places, usually. But there is hope in the form of certain dietary changes, too, which at least now I know enough to pursue.


    And the best news is that it may offer hope for my daughter's continuing ill health as well - she's getting tested in 2 weeks. And for the first time, when I speak to people in who have this, they hear her symptoms and quite a few have said: yeah, I get all those symptoms. That has been the first time EVER that someone has had some of her stranger symptoms. 


    Wishing you all good luck in all your own health battles, and good luck, as well, in figuring out how to live with what you have, and be strong, and staying positive. :-)



  21. So sorry your family is not that supportive - sometimes, I think that can be the hardest, when you have celiacs who are NOT as sensitive and they use THAT as a measuring stick against you.


    My mother-in-law has a celiac friend, who eats out all the time and all she does is ask if they add gluten to anything and avoid that. She takes no care whatsoever about avoiding cross-contamination. When my daughter was diagnosed, she would do things like cut a loaf of bread with a knife on a cutting board, and then brush off the crumbs and cut up some fruit on the same board using the same knife for my daughter. She was furious when my daughter saw her doing it and refused to eat the food because it was contaminated. 


    My family has four celiacs right now. ALL of us have had symptoms grow worse since we went gluten free, but it's all very different. My father started with getting the runs a little and that was it. He cheated all the time. Then he started getting cramps and the runs, and felt more flush and 'bad' in general and cramps and runs, and now he feels bad enough that he's stopped cheating entirely and is much more careful about eating out. 


    My brother had nausea and the runs, and he still has it, only it's a bit worse.


    My daughter had exhaustion and depression. After a couple months or so, she had severe nausea and limbs shaking after getting gluten, a fever spike (who knew?) and a kind of hysterical anxiety thing that would hit a day later. Then this last December, after she hadn't been glutened for over 6 months, she got gluten contamination and was vomiting all night long, was knocked flat like she had influenza, and wasn't able to keep food down more than liquid for a couple more days after that. It was pretty awful.


    So your reaction? Totally within the realm of possibility.



    I have been diagnosed celiac for two years gluten-free since then. Prior to diagnosis I was tired, suffered malaise, diahreah all the time. Since I'm much better unless I've eaten somewhere (restaurants, friends house) and the gluten-free food given to me was either not gluten-free or cross contaminated. I usually react by vomiting a few times and feeling sick and sinister for a few weeks.

    Today I did something really stupid. My daughter came in with a bag is cookies. I quickly read the bag and saw "flour free" . I ate one. About an hour later I got dizzy, ears bothered by noise, very agitated and then I began to vomit, usually it's volatile but over quick. This went on for an hour plus non stop. Bile, stomach pains, dizziness, weakness, flush. I asked my daughter to bring me the cookie bag as it was the o my thing I had eaten recently. It said "flour fresh". NOT gluten free. My sister is celiac also and not as careful as I am about cross contamination. They treat me like I'm faking these reactions. Does anyone else react as I do.. Has it gotten worse for u too?