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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

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  1. I'm simply reaching out to others.  8 years ago I had a gastric bypass, the old fashioned kind, where  they literally stapled my stomach, cut it off of where it was supposed to attach to my intestine, and picked a new spot.  8 yrs later, they have discovered after lots of us have lost teeth/hair from no calcium absorption,are chronicly anemic, ( tried: b12 shots, nasal and sublingual ) and have fluctuating blood sugars... that I am also gluten intolerant. I saw multiple specialist, all who focused on the pouch area they now call my stomach.  No one thought about the point of connection to my intestine, or what it might effect.  If I can not tolerate sweets related to no intrinsic factor and get 'dumping syndrome'.... why did no one recognize that possibly gluten would also bother me? ?  I have been gluten free for about 4 years now.  I started as a self-diagnosing journey of "gluten -hangover"..... as a nurse, to have my patients say I looked terrible, hurt. ( Especially as I work in substance abuse, ands was NOT  hung over from alcohol).To have non-stop belching battles after a few bites of food ~intolerable!  I feel 100 times better. ... and am just as adventurous about cooking/living gluten-free as I was in the other world.   I'm curious to see if others have found this to be a result of surgery as well. ( luckily they have all but stopped performing my type of it created multiple medical issues) In regards to bloodwork, it has been abnormal since surgery. ..across the board. Thank you for listening. .. 
  2. Hi hi! Just a question for the people who do react to glucose syrup... Are your symptoms the same as with a regular glutening or slightly different or...?  
  3. I was talking to my primary care physician (who happens to be a Gastroenterologist) and described to him what has happened the few times I've been glutened since my DX about 2 1/2 years ago (we were discussing the potential impact of eating half of a non gluten-free chip) Two days of diarrhea, general bloat for another few days, spaciness for about a week and gum pain/headache for another week or two. He seemed surprised at the severity and said that this is a high level of intolerance.  I don't think I'm highly sensitive but I'm generally very careful about cross-contamination.  I'm just wondering how sensitive these symptoms seem to you?  How does this compare to what would happen to you if you ate half a chip (assuming you have a dx of Celiac). Thanks.
  4. Hi there, Hoping to get some thoughts from others out there who are familiar with the range of symptoms and issues associated with celiac disease (or gluten intolerance). My story is sad and complicated, but basically starts with the fact that I'm 26 and have had 5 early miscarriages in the past year. Testing was inconclusive, until finally my RE found that I have an autoimmune thyroid condition (anti-thyroid antibodies/hashimotos). He started me on a low dose of synthroid to boost me up (even though my current TSH is considered "normal". Anyways, in reading more about autoimmune thyroid conditions, I found out that they are highly related to celiac disease and that they can also respond to a gluten-free diet. So I decided to go gluten-free because, well, at this point I'm willing to try anything to be able to have a healthy baby. After doing all this reading, I've done done more reflecting and an convinced I have done kind of gluten intolerance issue. I did blood testing a couple of days after first deciding to try gluten-free, and the clinic said that should still be Ok for identifying the antibodies/tissue transglutaminase). I'll find out in January. Anyway, my symptoms include: - recurrent pregnancy loss (infertility) - thyroid autoimmunity - skin rashes (Not DH), possibly eczema or chronic hives - dairy intolerance developed in the last few years (this has *completely* improved since going gluten-free 2 weeks ago) - stomach gurgling, gas and bloating (also stopped on going gluten-free) - chronically loose, smelly stool (sorry TMI! But, my BMs have been completely normal on going gluten-free!) - grandmother recently told me my uncle "was celiac as a child but grew out if it" (right. ) It seems fairly compelling to ne, especially given my digestive improvements. I'm even thinking that if the blood test comes back negative, I might just stay gluten-free to see how it goes (with pregnancy, thyroid condition, digestive health, etc). What do you think? Thoughts, insights, or advice greatly appreciated! Thanks
  5. hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal  tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling his last hoapital  discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy. And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing  was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?  
  6. Hi everyone,   I am certain someone has brought up a similar question before,  but there we go anyway:   My GP has recently advised me to try out a gluten-free diet, since he firmly believes I am intolerant. (I've had something similar to a rosacea for over 10 years.) As I get into the third week out of six of a gluten-free diet, my skin has massively improved but I am bothered about one thing...    What about cross-contamination?   My general view of my highly probable intolerance was to still eat some products that "may contain traces of gluten", as it's stated on the package. Yet, I fear I should avoid these products too. Here's why: I am often experiencing the pins and needles syndrome on my forearms or my feet. (I doubt it comes from any physical activity, since I'm only cycling to work and usually don't experience such things on a regular jogging.) Recently I am often extremely thirsty or have a sore throat in the morning and the evening. (This might be due to summer and air conditioning though.)   I'm asking your advice here. Should I also ban these potentially unhealthy products of my diet for the remaining three-four weeks of this test or not? Have any of you experiences something similar with regard to a gluten intolerance?   Thanks to you all   and thanks for reading !
  7. For those of you that have determined you can't handle sulfites - how did you determine? What kind of symptoms did sulphites cause you? Was this during the healing process for you and were you able to add them back in?    
  8. Hi there...I've been gluten free since my biopsy so about 10 months...still having random neckrash and hives on my eyelids and recently was tested for food allergies.  The IgE results were all negative but the IgG came back positive for casein, wheat, corn, beef, apples, banana's, potatoes and tomatoes.  It only tested 10 different things (ok for chicken and soy)...I've been trying to find information on this while waiting to see a nutritionist but my dr just said for now stay away from the highest offenders...the levels were supposed to be under 2.0 and corn was 11, bananas 9, beef 7.4, casein 5.5 etc..while tomatoes were 2.5 and potatoes were 2.0 which they marked as high... I was told at my endoscopy 10 months ago that I had a lot of visual inflammation of the esophagus, stomach and intestines and the results were celiac disease gerd and inflammation of stomach.... Many places I read that if you had low positives to ignore those and I'm thinking no I should notice all positives....?? and I can't find any reference to what is considered "low positive" the 11 a low positive that I had for the corn or is it like a WHOA off the charts....I can't even find a reference for it...Any insight anyone???
  9. I have been quite ill for a long time and after 4 months gluten free, I decided to pay for a detailed food intolerance test that is available here in the UK as I realised there was something else going on which I thought would be lactose. My results came back yesterday and they are BAD. I'm trying to be positive by doing some research and meal planning but I wondered if anyone else could help with some ideas ! I am intolerant to the following (these foods are just the ones on my MUST avoid list!) Beef Cow's milk Gluten Wheat Lamb Yeast Eggs Almond Soya Coconut Garlic Tuna Haricot beans Kidney beans Chickpeas Lentils I am mostly flummoxed by what I could have for breakfast now as conventional foods and their substitutes seem to be off the table. Also, are there any possible dairy substitutes ? Almond, soya and oat milk are a no go as a replacement for cow's milk and it has been made clear that lacto-free milk is not an option because I react to the milk protein not lactose. I will be having a consultation with a nutritionist too but it seems just as important to ask people who are living with similar. Any help or advice would be so appreciated !
  10. Hi All, I've been gluten free for over two years after being diagnosed with celiac.  In the past few months I have started having increasing discomfort and bloating, which had initially stopped after going gluten free.  My doctor redid the celiac panel and confirmed that I have not been getting into gluten, but I don't know what my next step should be.     I suspect possibly additional food intolerances, but there are so many different foods that I don't know where to begin.  Is there any test that would tell me what foods I might be intolerant to? I've heard of an elisa test but don't know if it's reliable.     Or should I forget testing and remove almost all foods, then introduce things one at a time?  If so, what would be the best foods to keep since I have to eat SOMETHING. (I also have osteoporosis, so plenty of calcium is a necessity.)  Thanks so much for your wisdom!! :-)
  11. Quite a few people on this thread have symptoms of mastocytosis or histamine intolerance. Please note the low histamine diet:
  12. So I think I have a gluten intolerance/sensitivity. I say I think because I have not seen a doctor about it yet, and I only noticed that something was wrong with my body about two weeks ago. Everybody knows how their body feels and works and mine all of a sudden just was not behaving normally. Let me preface this by stating all my existing conditions/problems: 20 year old female, lactose intolerant (have been for about a year now), on daily medications for ADHD, anxiety/depression, and birth control. I've just moved back to college for my last year of school, and I'm mourning the recent loss of my father.   Now about the gluten problem. I just noticed new signs about two weeks ago when I would be eating lunch at work. Usually I had a sandwich (white or wheat), sometimes it was pasta. Almost immediately after I began eating, my stomach would develop a sour feeling - no other way to describe it other than an achey, upset, crampy, bloated feeling in my lower abdomen. The urge to go to the bathroom (though it was not always necessary), gassier than I've ever been in my life, I'd feel very drowsy and slow, and randomly my joints started hurting (knees, hips and ankles). At first I thought it might be excess stomach acid so I started taking Rolaids throughout the day and drank more water and had a snack in between breakfast and lunch. And the bad feelings would last so long I wouldn't have the appetite for dinner. I ruled out stomach acid, as I wasn't having heartburn or indigestion. In the mornings I usually have a bagel or two pieces of toast or something bready, since I don't have cereal anymore and never had time to make anything fancier than that. I've been eating bread my whole life so why all of a sudden does it bother me? But now I'm thinking that maybe I always had signs of it, but I was just treating those like they were the result of eating too much pizza or a big sandwich on a bagel and just thinking "oh my stomach just hurts because it's full".    So I decided to try avoiding gluten for a period to see if I felt any better. During this time I moved back to school, and moved into a new apartment with my boyfriend. I did some research about what kind of foods to get, but here in this small college town, your two grocery options are either Walmart or Giant (and I'm on a tight college kid budget so I unfortunately chose Walmart). I thought I was pretty good about reading the labels and ingredients of things, but I wasn't as good as I thought because I still came back with bad stuff. And later after shopping for hours I was so hungry and slipped and got Chipotle (a big tortilla quesadilla to be exact) and got soo sick from it. So I think it's definitely an intolerance or a sensitivity. Could any experienced people here give me some advice?    I'm also struggling on what to eat. I cut gluten out of my diet so abruptly, that I'm definitely experiencing withdrawal. I feel like a zombie. Always hungry, extremely low energy but not tired enough to sleep, unmotivated and frankly pretty depressed. Is this just what happens when someone makes a sudden change in diet? Will it go away? For lack of proper knowledge and optimal resources, all I've had to eat today was applesauce, a banana, some lemon yogurt, a small serving of brown rice and celery with cream cheese on them, and water. I'm sure my blood sugar is low, and I am depriving myself of the proper nutrients which is not what I want to do at all! I want to be happy, healthy and free of pain and discomfort.  Please help!!
  13. Hello everyone, I have been on a gluten free diet for about 4 weeks now. I had originally went on this diet because I am having the same symptoms and someone that may have a gluten sensitivity bad headaches, feeling very fatigued, joint pain, depression, numbness and foggy brain I was to a point where I couldn't get the word out of my mouth that I was trying to say and that's the point where I really started to research some things. I went to a neurologist and had an M.R.I. done all came back negative the Dr. said there is nothing wrong with me. Quite frankly I cant believe this so I started doing my own research since I wasn't going to get help from that Dr. I do plan on getting a second opinion done here soon, But none the less frustrating. So I found that pretty much all the symptoms that describe a gluten sensitive individual is everything I felt as well, so I thought I might as well give this a shot. I started this diet 2 weeks in I noticed that the numbness went away for the most part the pain still lingered the foggy brain hasn't shown its ugly face still fatigued and still had the headaches. So now 4 weeks in the numbness and the pain has been coming back more frequently and the headaches are still around foggy brain is still gone for now. But as the numbness and pain intensify and start showing up more often now it kind of makes me think am I really having to do this diet, and for the record I am not one of those people that cheat diets nor thinks its okay to cheat a diet especially with this kind of health dependency. I have been very strict with this hence why the frustration with it seeming like its not helping so high. I have done my research on the hidden gluten what to look for etc I actually try to buy only certified gluten free foods that say on the packages. I mean if all I have to do is change my diet to a gluten free one and it changes my life for the better because of this i'm all on board not just half way. Some places I read 6 weeks others say 6 months before you start to add wheat back into your diet to see if it affects you in a negative way, of course only if you feel like its not working for you. I definitely don't want to do this to soon because any chance that this is helping me I would hate to ruin that. At first I thought it was helping me, But not so sure anymore. Any help advise words of encouragement opinions would be much appreciated please. Thank you so much guys to all of you for taking the time to read my story and help with what you can.
  14. I am wondering if Xanthan Gum I safe for people with corn and soy intolerance? I assumed it was but just read that it is derived from either corn, wheat or soy.   Is it safer to use Guar Gum instead for gluten-free baking?
  15. Hello, everybody! I'd like to share with you my interesting case.   My problems started 2008, soon after growth spurt. Most significant symptoms: Severe brain fog. Low energetic level. Constant diarrhea. I noticed that the symptoms always worsened after eating (especially at lunch). Among another tests I was also taken blood test for celiac, but it came back negative. In 2010 finally a diagnosis was given: multiple food intolerances. The worst of them were foods containing gluten (now I know I am extremely sensitive to gluten). After that diagnosis I have been on gluten free and low-histamine diet + a lot of other foods excluded. My condition has undescribably improved since then.     Most important experiments since 2010: Exclusion of foods containing gluten - bowel movement more solid, increase: energetic levels, decrease: brain fog Excl. of histamine containing/releasing foods - incr: en. level; decr: brain fog Excl. of most vegetables - bowel movement even more solid Excl. of gluten cross-contaminated foods - significant incr: en. levels; decr: brain brog Rotation diet (4 days) - incr: en. level; decr: brain fog Product Rotation Diet - incr: en. level; decr: brain fog Physical exercise - incr: en. level; decr: brain fog Enzymes - no effect Probiotics   *taken in powder form only - no effect   *powder cultivated in yoghurt - some incr: en. level; decr: brain fog What I eat now are gluten-free grains (rice, millet, buckwheat, oat, lentilles), potatoes, variety of fruits/berries, some milk products, sometimes meat, some vegetables (pumpkin, tomato). I stricktly follow my Product Rotaion Diet. I also do physical exercise each day to help my body digest.   Although my symptoms have decreased very-very much, I have still not yet reached to the level I was before 2008. After each mealtime I have some symptoms (some brain fog and low en. level), starting 15 to 30 minutes after eating and lasting for 2 hours. This is likely because of leaky gut (although I'm not celiac). If I want to be completely symptom free I somehow have to achieve food induced elevated heart rate (read about it below at point 7), this will give me 24-hour symptom free day. Notes: The most interesting fact about my disease, I call it Product Rotation: Every food (with no exceptions!) that I eat has certain allowed quantity. If I eat more than allowed, I get significant brain fog and low en. level. Then I have to wait some time before I can eat the same food again. This may seem similar to "rotation diet" which is applied in case of food allergies. Certain food family is eaten one day and then again after passing of 4 days. But I don't have any allergies. And the thing about food families also doesn't apply to me: I could eat rice only, each meal a different product of rice (could be even the same sort, just needs to be grown in different areas; although it is hard to determine whether two products labeled as the same sort actually are the same, they may actually be different sub-species). I eat one product maximum 200 grams (without starting of more disturbing symptoms) and then have to wait ca 20 days before I can eat exactly the same product again 200 grams. The same applies to every food product: buckwheat, oat, meat, milk, fruits etc. For example allowed meat quantity is 60 grams and 10 days of rotation period, but during the same day I can eat 60g of pig meat, then 60g of lamb meat, and then 60g of pig meat from different company. In case of gluten the allowed quantity is almost non-existing. My guess is that this is because of food intolerance - two different products have slightly different nutritional consistency, and when eating different nutrients my already meager digestive enzyme supply for certain nutrient isn't exhausted. Rotation period allows this supply to slowly regenerate.   3. Intolerant to most of vegetables. E.g. small amount of raw cabbage causes severe diarrhea. 4. Cross contamination - few grains of wheat can cause a week of brain fog and low en. level. 7. Physical exercise - elevated heart rate pumps toxins out of my body. The effect lasts from couple of hours to 24 hours. 24-hours when food induced elevated heart rate - this happens when my pulse hits up again after having first meal after sport and stays at 90 beats per minute for an hour. I am not always able to achieve this condition. Similar effect can be caused due to infection (fever causes constant elevated heart rate). 8. Enzymes - I've tried Veganzyme, Gluten Ease, Celiact, and some more 9. Probiotics taken during mealtime = low en. level + brain fog. This is also when I drink yoghurt (cultivated probiotics) with food. Probiotics have to be taken separately. I think this is because histamine intolerance - live cultures mixed with food cause its fermentation, fermented food contains histamine. I've also tried some special diets (pH diet, Special Carbohydrate Diet), but they had no effect.   I hope my experiments will have some use for other people too who have similar condition:-) If you have noticed similar effects that I describe here, then please share your thoughts. Or I you have any advice to give me, then you'd be more than welcome.
  16. Hi everyone! I haven't been on here in a long time. Three years of being gluten free and doing well other than this chronic, ongoing awful pelvic pain. It gets much worse at times and a little better at other times. It took me until about a year ago to realize I am sensitive to corn and when I cut out corn chips and corn tortillas and anythign made with flour I had remarkable improvement. I am still miserable off and on though and I am wondering just HOW much I need to avoid corn. For example I still drink sodas and those have HFCS and carmel coloring. I know for a hard fact that I can't have a whole list of candies and I have researched them and found that all of them have corn syrup as the first ingrediend. I react very badly to all of those (marshmallows, starburst, tootsie rolls, etc). So I have cut all of those things out of my diet but I do still have the pelvic pain and pain with BMs so I'm wondering for those who have issues with corn, do you avoid HFCS and corn starch?Baking powder? What about xanthan gum? I know all of these things are garbage anyway and as of today am starting back on an eliminatiion diet of corn products this time but its SO overwhelming as it seems that corn is in EVERYTHING. I am just hoping someone can give me some insight or personal experience. I experimented two days ago and ate a handful of corn chips and I'm paying for it so badly ever since. Excruciating pain and been on the toilet all day. I will never do that again and I"m so determined to figure this thing out once and for all!    Also, I've done quite a bit of research today on GMO corn and HFCS and its health dangers, I'm just still a bit confused and I think more wanting to hear from anyone that has similar problems that can tell me I'm not crazy, it will get better and definitely avoid these certain ingredients (which are?)   Thank you!
  17. My stomach is often irritated after drinking alcohol. So I do not drink much, and not often. I noticed on 2 different occasions with rum, I was up all night with nausea and a rapid heart rate. I do not get drunk, so that wasn't it. But I was up both nights with a very anxious feeling. By morning, I'm tired and my heart rate is still a little high. Anyone experience anything like this?
  18. I'm 18 and I was diagnosed with SOME sort of gluten issue early this year. It's probably celiac though the blood test came back negative.... my doctor didn't want to explore further and just told me to take gluten out of my diet anyway. Before I was having migraines, feeling tired all the time even though I was exercising and eating a pretty clean, healthy diet. I haven't gotten a migraine since getting gluten out of my system, I haven't been bloating as badly, etc.    Here's the thing...   Now there is very very little that I can eat. I'm a vegetarian by choice and I have been for 10 years. I don't really intend to go back. I am very clearly lactose intolerant.. my doctor suspects this too, I just kept missing the test due to scheduling issues.. so I'm not diagnosed but it's clear. When I have lactose I get horrible gas, bloat, all of that lovely stuff. It has gotten worse lately and I've started eating less of it but that was really my main source of protein and calcium. ADDITIONALLY.. eggs make me extremely ill. I'm not one to throw up, I haven't thrown up in exactly two years.. but eggs are what will do it. For some reason the people around me think that it's because I'm disgusted by them but I'm not.. the sunny side up egg that my dad makes in the morning looks delicious. I can eat egg as an ingredient with little to no issue.. as long as it's a very very small amount. Extremely egg based gluten free breads make me sick.. there's this one brand that tastes really good, it's called Against the Grain and they have this english muffin that is extremely egg-y and that makes me really sick to my stomach. We even have chickens! We raise them for eggs! The eggs are totally fresh and amazing but I still can't eat them.    Because of all these intolerances to animal products.. I feel that it might be a good idea for me to go vegan. Not the whole lifestyle but just the eating style lol. Probably not for my whole life but for a while.. bodies change and I'm sure that these particular intolerances may not always be an issue.   But wait, there's more..   Going vegan is hard enough as it is.... and even more so when you're gluten free... I also have a life threatening nut allergy. This is something that I'll have for my whole life. It isn't something that I can force myself to get over.. it's really unfortunate really. I get tested every so often and so far, there has been no improvement. Surprisingly enough.. the ONLY nut that I can SUPPOSEDLY eat are walnuts.... which I won't. I absolutely will not eat them ever because I was allergic to them in the past and they landed me in the ER. It's like being put in a small cage with a lion and being told that it's well behaved and won't hurt you.. you still don't want to be put in that situation. So nuts are out. IN ADDITION TO ALL OF THAT... I'm allergic to oats, they've sent me to the ER three times, I'm also allergic to quinoa (wahh I used to eat it all the time, loved it!), peaches, pears, celery, probably avocados, corn and every corn derivative, probably cucumber (?), and a few other seeds. I also have oral allergy syndrome to a lot of uncooked fruits and veggies... like apples.. I can eat them cooked though because the proteins change. It's sort of a nightmare and going vegan is going to be extremely difficult but the thing is that I really need to stop eating eggs and dairy for now because they're making me miserable.    Here are the things that I CAN eat: Bananas, blueberries, strawberries, grapes, pineapple, mango, kiwi Oranges, clementines, etc. Tomatoes Broccoli (my favorite!) Asparagus (also my favorite!) Rice Black beans Basil, thyme, (your common spices basically) Peppers Potatoes Lettuce, spinach, kale??, most if not all leafy greens Carrots (steamed) Soy Tapioca  Onions Peas Coconut Olives Things like xanthan gum or whatever are probably fine as long as they aren't nutty or anything of that nature.   To be honest.. that's basically it... if you take out dairy and eggs. Can I live off of those things? I suppose rice and beans can be my go-to for protein.. they pretty much are already anyway.  I don't want to be unhealthy. I like to be fit and active, in fact, I'm just getting back into working out after healing from a knee injury that I sustained during ski season. So I need a good base of food that will give me the right amount of everything I need on a daily basis. I really need to avoid processed food in general because it's bad but it's also very difficult to find anything that I can eat.    What do I do? Does anyone else have issues that are this extensive??  I probably can't do the raw vegan thing because of the oral allergies but I could do just basic vegan.. obviously with serious restrictions. How do I make sure that I'm getting everything that I need to survive? 
  19. Hi everybody,   I think that I may have Celiacs Disease and the DH rash.  I was hoping that since lots of you have experience with Celiacs Disease/ Gluten Intolerance, you might be able to help me out. My doctor does not seem to believe that a gluten intolerance is anything more than a fad. I have been so frustrated and really appreciate any advice/help you have!!   Here are my gluten-related symptoms:   Severe stomach problems for the past 13 years. These lasted until I decided to try giving up gluten last year. They are now MUCH better, although still not 100%. Depression/Anxiety/Fatigue - also (amazingly) relieved after giving up gluten. Chronic, itchy rash - began after giving up gluten Gluten-Related History:   Since giving up gluten one year ago, I have developed a chronic, itchy rash.  The rash usually begins on my legs, and spreads over my whole body. It is worst on my legs, the sides of my hips, and my arms. It sometimes spreads to my hands, neck, back and face. It looks like the pictures that I have seen on the DH forum here. It is extremely itchy and doesn't seem to be caused by anything in particular (I have been keeping a food diary). I am a bit confused about why it started AFTER giving up gluten.   About 10 years ago, I had a test taken to check for Celiacs disease, which came back negative (I had a colonoscopy - a procedure I hope I'll never have to suffer through again!!). My gastroenterologist at the time diagnosed me with IBS and prescribed many types of pills, etc. - none of which worked. He also suggested that I eat only white bread, pasta and rice for a while, and then re-introduce other foods back into my diet to see what was causing my problems. (Obviously eating the bread, pasta, etc. did not relieve my symptoms).    Since giving up gluten drastically relieved my symptoms, I assumed that I was gluten-intolerant. Now I am considering the possibility that i might have Celiacs.  I am careful about what I eat, but I still sometimes eat food that "may contain traces of gluten," etc., but perhaps I should start being more careful...?   Questions I'm hoping you can help me with: Is it possible my Celiacs test was not accurate, and do you think I should be tested again? (I understand a lot of the tests out there are inaccurate and many doctors don't know enough about Celiacs/Gluten Intolerance) Do you think that my rash is DH, and why did I only get it after giving up gluten? How much gluten do I have to reintroduce into my diet in order to be accurately tested (and is it worth it??) Do topical sources of gluten make a big difference? I haven't been checking for them...     Thank you so much, and I truly appreciate ANY help you can give me!!   Julie
  20. Hi all,    Just looking for a bit of knowledge and/or confirmation from you experienced folks!   I've had a lifelong reaction to garlic, but didn't realise I was actually intolerant to garlic until I was mid teens. I then didn't realise that all of the onion family affect me very badly until I was 27! By this point my symptoms (extreme bloating, acid reflux, mouth ulcers, abdominal pain, IBS) were near constant, my reaction to the onion family had gotten worse and worse over time. I had also developed GERD so then had to exclude a whole array of other foods from my diet. (tomatoes, peppers, alcohol, citrus or anything acidic, etc)   I have a family history of gallbladder problems, IBS and Crohn's disease. Although neither of these things are strongly suspected in me.   I've had numerous blood tests for a variety of things, including calprotectin (negative) and the blood test for celiacs (also negative). I am not anaemic either. I was on Omaprazole for 12 months (worked a bit) and Ranitidine for 6 months (Not very good at all...)   After waiting 18 months!!! I finally had a gastroscopy yesterday...   Apparently after 17hrs fasting my stomach was sloshing full of acid. My oesophagus is normal, my stomach looked normal, my stomach biopsy showed me as negative for H. pylori. The nurse then took a look at my duodenum before taking two biopsies, she immediately noted that it was smooth and afterwards gave me a gluten free diet sheet and told me that she thinks I am an asymptomatic celiac and my other intolerances would likely clear up over time if I go gluten free...   Soooo... sound familiar to anyone?    I felt immediately scared that I would have to struggle to eat even more than ever before. But a colleague said this morning that I'd be swapping a relatively rare digestive problem for one that is almost "mainstream" and catered for. Not sure how to feel basically.    
  21. Feeling a little overwhelmed and sorry for myself today. For the past 3 years I've been learning about my gluten intolerance.  I am intolerant of gluten, soy, dairy,  corn (and corn products such as vinegar and citric acid), gluten-free oats, quinoa and nightshades including tomato and potato.  This even includes liquor like potato vodka.  I know I'm SUPPOSED to be able to tolerate this....but I cant.     So, basically, I've been strictly gluten free for about 1 1/2 years now.  I have severe heart burn.  Better with medication.  Most of my gluten symptoms such as numb limbs, face, etc.  and severe stomach upset and gas has gone away.  Its magic as long as I stay away from gluten and the other offenders.   At this point though I'm just angry.  I smile and say its no big deal.  I get by and there are lots of foods I can still eat.  I put on a brave face most days.  I am truly happy to have my health.   I keep holding out hope that some of these multiple intolerances will go away as I get better but........    A part of me wants to say screw it, eat a bunch of gluten and call it a day.  I get really frustrated and sick of being "ok" with it.  Some days, it sucks!  I hate that I can't go out to eat anywhere like every other normal person.  I hate that people think I'm being picky.  I hate the sympathy I get from decent people.  Multiple intolerances SUCKKKKK!  I also hate that sometimes I get sick from foods that AREN'T gluten. Not fair!  It makes me so angry at my body.     So, I just needed to bitch everyone. Needed to whine and throw a hissy fit!   Thanks for listening! 
  22. I have been as gluten-free as possible (living in a mixed household, have my own cookware) since my negative biopsy 16 months ago. Ever since the gluten trial I did beforehand I am intolerant of almost everything but especially grains. I eat about as well as can be expected. I'm on a kind of paleo I guess, all meat and vegetables and small servings of fruit, except with my food problems my meal plan tends to be breakfast: chicken with spinach, lunch: chicken with kale, dinner: chicken with carrots, heavily supplemented with bananas throughout the day. Shampoo, rinse, repeat. Sometimes I sneak some egg whites into the mix, sometimes I can't stomach the thought of more chicken so I just have the vegetables. Sometimes I just don't bother to eat at all. Things are definitely better than they were when I was eating gluten, but still bad. I keep losing foods, I'm bloated and nauseous, I have extremely bad gas and unpredictable, foul BMs that lean more towards constipated. I just feel generally unwell and I'm not sure why I'm not getting better. The last gastro I saw put me on rifaximin to see if it was some kind of bacterial overgrowth. I'm on day 9 (of 14) of the rifaximin, and it has worked in unexpected ways. I have less gas, and when I do have it it no longer smells like it could kill a man. Same with BMs. It also put an end to the maddening throat pressure I was having that I assumed was some kind of reflux. While my rosacea is still pink and flushy, the skin puffiness has reduced so much I look like a different person, and my skin has lost the orange peel texture. My ocular rosacea is no longer permanent, it shows up sporadically and generally goes away with eye drops. The skin on my body is less dry, bumpy and blotchy. My feet and hands no longer constantly glow bright red. The hollow, severely purple undereye circles I've sported for years have also started to improve drastically and my hair and nails are stronger and shinier. It took about three days of feeling weird and adjusting, but I noticed for a few days that my stomach felt a lot better, less 'full' feeling, especially just after I'd taken the pill. Not miraculously so, but I had really high hopes. Unfortunately, I made the horrible decision to try out (gluten-free) grains again a few days ago after reading on a forum that the rifaximin needed higher carbs and sugar to draw out the bacteria. And after all, if I wanted to permanently incorporate them into my diet, why shouldn't I get started while my system had a boost? It was a bad call and I knew it, I was just so desperate for real food that I threw caution to the wind. It immediately triggered my binge eating (which I haven't struggled with at all since going grain free) so I went into grain overload. I felt the way I did when I was doing the gluten trial- extremely foggy, confused, lethargic, achy, and bloated to the point I was in so much discomfort I thought I could die. At least I didn't throw up this time. It was the worst I'd felt in ages and it took me 3 days to get off of them again. I'm horrified with myself and I think I've caused some damage. Worst of all, I think what I've done has set me back too far for the rifaximin to handle. I'm back to eating my usual but I keep feeling really ill, like it's undoing everything that's improved since I started taking it. I'm so scared. I know that if this course ends and I'm not cured, my gastro will immediately move on to "see, you have IBS! let's get you on some antidepressants". She said as much last time we met, the rifaximin was a last ditch effort. I just feel so lost.  
  23. At this time last year I had never heard of mast cell activation syndrome (MCAS) and the first time that I heard the name I thought that it was a “made up” disease. Since then I have come to realize that it is a real diagnosis and I have learned a ton about it, including the following: MCAS is a newly recognized disease of the innate immune system (our bodies’ first line of defense against bacteria, viruses, parasites, and other invaders). Women make up the majority of patients with MCAS. Symptoms are caused by having too much histamine in one's system and can affect almost any part of the body (see comprehensive list below). MCAS is very common (there is pilot data showing that 17% of Germans are affected to some degree). It is acquired during life; no one is born with MCAS and it is not yet known why it develops in certain people. I am one of the unlucky people to have acquired MCAS during my journey through life. Although I really wish that I didn’t have it, I am sharing my story in hopes that I can help others. Mast cells are innate immune cells that play a role in defending the body against bacteria, viruses, and parasites, but are best known for their participation in the allergic response. When mast cells degranulate, or burst open, histamine and other chemicals are released, leading to symptoms which we associate with allergies, including having a runny nose, wheezing, hives, etc. Most of us are familiar with the antihistamine drugs that are used to treat allergic symptoms, such as Claritin, Allergra, and Zrytec. Although these medications do not prevent mast cells from releasing histamine, they prevent symptoms by blocking histamine receptors. In mast cell activation syndrome (also known as mast cell activation disorder, or MCAD), mast cells have excessive degranulation, release too much histamine, and adverse symptoms develop. Symptoms can vary from person to person and will often become worse in the same person with time. Some patients will experience only one or two symptoms from having too much histamine floating around, and other patients will experience many, many symptoms. Although urticaria (hives) is the classic symptom associated with mast cell degranulation, in many cases patients with MCAS do not have urticaria or any skin findings. I have never had hives and the only skin symptom that I get from MCAS is facial flushing from time to time. According to the Mastocytosis Society Canada’s website, the most common symptoms of MCAS include the following: Gastrointestinal symptoms, including nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption* (sounds a lot like celiac and/or irritable bowel syndrome doesn’t it?) Low blood pressure* Fatigue* Wheezing* Itching, flushing*, hives Episodes of fainting or dizziness Bone pain* Cognitive impairment (brain fog)* Anxiety Rapid weight gain or loss Anaphylaxis Chest pain and/or a racing heart* Sensitivity to sunlight * = symptoms that I have personally experienced as a result of MCAS. I saw several different subspecialists before we were able to piece all of these symptoms together. Common triggers for mast cell degranulation in those of us with MCAS include the following: insect stings pain medications such as NSAIDs and narcotics foods and drinks that are high in histamine or are known to trigger histamine release extreme temperatures, both hot and cold exercise strong scents including perfumes and chemicals friction, pressure, or vibration on the skin emotional and physical stress At this point, my only known triggers for MCAS are high histamine foods and foods that are histamine-releasing, including fermented foods and foods/drinks that have added sulfites. Please see my previous post “Celiac Disease and Multiple Food Intolerances” from July 2013 for more details on food triggers and high histamine foods. Since beginning treatment for MCAS late last summer, the other food intolerances that I had attributed to my celiac disease have markedly improved. My sulfite allergy/intolerance also appears to have been as result of untreated MCAS. The first case reports of MCAS were just published in the medical journals in 2007 or 2008, so in most cases, the only doctors who have learned about MCAS during medical school are the really young ones. Systemic mastocytosis (SM) is a well-known, very serious mast cell disease in which there are too many mast cells in the body that invade into other parts of the body, including the bone marrow. In MCAS patients the numbers of mast cells are normal (this is what differentiates it from SM) but the mast cells that are present are overly active and degranulate much more often than they should. SM and MCAS share a lot of the same symptoms but MCAS is on a milder scale. According to Dr. Larry Afrin, MD, a professor at the University of South Carolina who is one of the world’s experts on MCAS, testing should consist of the following: 1. Complete blood cell count with manual differential, comprehensive metabolic panel, and a serum magnesium level (these are usually part of a doctor’s evaluation for a patient presenting with any type of chronic illness). Coagulation studies and serum immunoglobulin levels may need to be done depending on presenting symptoms. 2. Blood tests consisting of serum tryptase and plasma histamine levels. If the tryptase is greater than 20 ng/mL, then a patient must be evaluated for systemic mastocytosis. In MCAS the tryptase, although often elevated, is almost always less than 20 mg/dL. 3. Plasma prostaglandin D2 (PGD2) and heparin levels. 4. Chilled 24 hour urine sample for PGD2 and methylhistamine. In many cases of MCAS the baseline tryptase and histamine levels can be normal, so it is important for a patient to have these labs done two times (both at baseline and when symptomatic). Both blood and urine levels of histamine and tryptase should rise after mast cells are triggered. Therefore, MCAS cannot be ruled out based on one set of normal labs. This differs from many other diseases that can be ruled out if an initial set of lab tests are normal. In my case I had abnormally high urine prostaglandin levels on two separate occasions and my tryptase and histamine levels rose when I was symptomatic (both were totally normal at baseline when I did not have any symptoms going on). Treatment options for MCAS include H1 antihistamines (such as Claritin, Allegra, and Zrytec and their generic forms), H2 antihistamines (such as Pepcid and Zantac), and mast cell stabilizers such as ketotifen and cromolyn sodium. I initially had a difficult time finding an H1-blocking antihistamine that worked for me, as most contain cornstarch and other sulfited ingredients which are triggers for my mast cells to degranulate. But I have recently done very well taking a compounded sulfite-free form of generic Claritin twice a day. I have also done my best to follow a low-histamine diet, and I believe that this has made the biggest difference in my symptoms improving. Yasmina, the Low Histamine Chef, who also has MCAS, has been a wonderful resource for learning about the low-histamine diet and recipes. If I keep my overall histamine intake low, I find that I can indulge in an occasional glass of wine or enjoy a small serving of aged cheese without starting to wheeze like I used to in the past. Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS. Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally "glutened." DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree. I guess that time will tell...In the meantime, if you are experiencing symptoms that seem puzzling, involve multiple systems of your body, and popped up out of the blue, I encourage you to look into MCAS as a possibility and discuss your symptoms with your doctor. There are some great references on the internet for learning about mast cell activation syndrome and histamine intolerance, including the following: 1. Mastocytosis and Mast Cell Disorders from the Mastocytosis Society Canada's website ( Accessed Jan. 3, 2014. 2. Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin, MD, chapter 6 in the book Mast Cells edited by David B. Murray, 2013. 3. Histamine Intolerance on Allergy UK website ( Accessed Jan. 3, 2014. 4. Mast cell activation syndrome: a newly recognized disorder with systemic clinical manifestations. Hamilton, M., Hornick, J., Akin, C., et al. J Allergy Clin Immunol. 2011. 128 (1): 147-152. 5. Mast Cell Activation Syndrome: A Review. Frieri, M., Patel, R., Celestin, J. Curr Allergy Asthma Rep. 2013. 13: 27-32. 6. Histamine Intolerance by Dr. Janice Joneja on webpage Accessed Jan. 3, 2014. 7. Expanding spectrum of mast cell activation disorders: monoclonal and idiopathic mast cell activation syndromes. Picard, M., Giavina-Bianchi, P., Mezzano, V., et al. Clinical Therapeutics. 2013. 35(5): 548-562. Dr. Afrin's chapter on MCAS for physicians (#2 above) is the most comprehensive document that I have come across regarding all that is known about MCAS. Lastly, I would like to thank my friend Harriet for all of her advice and help on this journey. If it was not for her assistance, I would probably still be wheezing and flushing with chronic brain fog and irritable bowel syndrome despite being strictly gluten free. Happy New Year and thank you for reading!
  24. I'm 17 and still undiagnosed.      Lately I've been having more of what I think is a sensitivity to dairy than ever. I wasn't always like this. I always avoided milk just because it skeeved me out.. but I always eat yogurt and things of that nature. Lately it's been making my stomach gurgle A LOT. Or at leas that's what I think is making my stomach gurgle. Come to think of it.. I would always feel sick after I had a big mug of hot chocolate.. but that's the only thing that would really do it.   In addition to that I believe that I have an egg intolerance. I certainly haven't had this my whole life. I can still eat egg just fine when baked into a cake (well.. now a gluten free cake or something).. It was always fine when egg is just an ingredient. However... probably around 13 years old I became unable to eat egg in scrambled, hard boiled, or mostly egg form without nearly vomiting. I was still able to eat french toast though! I have about a million other food allergies as well and just got diagnosed with more today. I was feeling frustrated with food and didn't want to make anything for myself so I just ate what my mom made for herself.... an omelette. The eggs are totally fresh, we have chickens as pets and for eggs. So it has nothing to do with bad eggs. I figured that I might as well just force myself to eat the omelette but I only got a few bites in before feeling extremely sick to my stomach. Even the smell makes me feel ill.   Can celiac cause other food intolerances? Especially to egg and lactose?   
  25. Hi all,   I was diagnosed with Celiac back in the summer of 2011 (my symptoms were mostly neuro), and I had been doing pretty decently on the gluten-free diet. Over the past 9 months or so, however, I have had more issues. I've done a couple of posts about them if you want to read further (didn't want to make this one that long). Basically, I have been having large, urgent bowel movements every morning, where it feels like i'm crapping everything out I ate the day before. My stomach has been almost always upset, and I have also been having neuro issues. For example, I was having a lot of dizziness late summer last year, but that seemed to subside. More recently, I have had tremors / weakness that seem to get worse right after my morning BM(s), and only really occur when using the muscles involved. They seem to be worse on my right side. I went to see a chiropractor recently that specializes in functional neurology that told me "Well, I don't think you have a brain tumor", and didn't seem super concerned. I have played with my diet a lot over the past several months, removing all grains and dairy, and then getting frustrated thinking they weren't working, so adding them back in. (I'm now again going grain-free dairy-free day 5). Anyways, I guess my main question is, has anyone had any neurological issues that have come along with other food intolerances? I'm really hoping this is what it is, but I'm also starting to freak out thinking it may be a tumor or something. Also, has any one had a positive experience with "functional neurology"? I want to believe it's going to help me, but I'm skeptical because nothing has yet. Thanks in advance for any help that can be provided!