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kayo last won the day on December 13 2010

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  1. I totally hear you and I'm in the same boat. Today I had a bit of a breakthrough that may be of some help to you as I noticed we tend to react the same things.

    The allergy doc who works with my GI doc took blood to test IgE reactions to a number of foods (RAST). I was positive to 2 foods, neither of which I've eaten in a year, oats & rye.

    What he also noticed was that my blood work showed an unusually high level of histamine in my body. Previous bloodwork showed really high EOS (Eosinophils) which means I'm having some type of allergy reaction. He took more blood today to see if it's still high. If so I may have too much histamine in my body, a.k.a. a histamine intolerance. I never knew such thing existed.

    I've been treated for SIBO and I have been following the FODMAP diet (suspected fructmal but test was neg) and while I see some improvements I still feel like crap and have constant D. Even my bland diet of rice, bananas, and chicken makes me feel ill. I also have an occasional OAS reaction to bananas, strawberries, chocolate and almonds but IgE is negative on those foods. I can have a bit of lemon or lime but other citrus makes my face swell (paratoid glands) like crazy and my throat itches and is sore for days. I also tend to get raspy and lethargic.

    So I looked up histamine when I got home and found this information. So many of the foods high in histamine correspond with what's been bothering me.

    Foods high in histamine:

    1. Champagne (76 mg/4 Oz.)

    2. Sauerkraut (23 mg/3.5 Oz.)

    3. Tofu (as high as 22 mg/3.5 Oz.)

    4. Parmesan Cheese (15 mg/3.5 Oz.)

    5. Beer (7 mg/pint) Beers vary in histamine content, with top fermented beers being higher in histamine.

    6. Sausage (6 mg/3.5 Oz.) Fresh sausage is often lower in histamine than the cured/aged sausage.

    7. Blue Cheese (5 mg/3.5 Oz.)

    8. Red Wine (3.5 mg/4 Oz.)

    9. Eggplant (3 mg/3.5 Oz.)

    10. Tomato Ketchup (2 mg/3.5 Oz.)

    11. Canned Fish (tuna, salmon, herring) (2 mg/3.5 Oz.)

    (I'm soy and lactose intolerant and beer always bothered me, but gluten free now anyways, wine gives me a raging headache if I have more than 1 glass)

    *Certain foods (even food that is low in histamine) can stimulate the release of histamine from mast cells (a type of immune cell). These foods include bananas, tomatoes, strawberries, pineapple, nuts, peanuts, shellfish, spinach, egg white and chocolate.

    (source: http://www.reverta.com/blog/histamine/top-10-histamine-containing-foods/)

    I bolded the foods that I seem to react to.

    I wonder if this is the missing link?

    edited to add: forgot to mention that doc put me on a med that inhibits histamine in the gut (histamine in gut causes D - who knew?) and suggested I also use an over the counter allergy med. I'm to do this for a month and see if it makes a difference.

  2. I agree - it's so contradictory!! That's why I stick to the information that comes from Australia, Monash University, and Sue Shephard in particular. They're the pioneers in fructmal and have the latest and most accurate info.

    The related yahoo group is my 'go to' place to ask questions. The site also has lots of articles, lists, recipes, etc. I ordered the Monash booklet so I would have a handy guide.


    I also like the book "IBS - Free at Last" by Patsy Catsos. The information is the same as the Australian info.

    On top of that each of us are different. Someone might be able to eat tomatoes and someone else can't. It's such a long process to figure these things out.

    However, in general fresh tomatoes are ok in moderation but things like ketchup and tomato paste contain a lot of fructose because the tomato is concentrated. I've avoided both but I have had small amounts of tomatoe sauce and salsa.

    Peppers in general are ok too, including the spicy ones. I haven't had any issues with peppers.

    I can send you my excel spreadsheet if you like. It has safe, questionable and not safe foods listed.

  3. I went through that a lot about 6 months into the gluten-free diet and then it lessened a bit. It's still happens but now and then. I never figured it out. Maybe someone else will have more insight. I agree it's super uncomfortable and inconvenient.

    edited to add: LauraBeth brings up a good point about hormones. I too figured my hormones were out of whack and had them tested twice. Totally normal.

  4. I walked into Sephora to read some labels on products I had at home but no longer had the packaging for. Unfortunately the print was so small I couldn't read the ingredients anyways. :(

    Knowing I would probably not get accurate information I asked the manager which of the products were gluten free. I was curious how the question would be handled and if there would be a modicum of accurate information dispensed. Without acknowledging me or looking up from her task she said, all of the X items (I forget the brand she said) are all natural and therefore gluten free. I turned and walked out of the store.

    I have since bought a credit card shaped magnifying 'glass' that fits in my wallet so I can read the small print myself.

  5. Sorry you got gluten after such careful preparation. This makes me wonder if we should ask that our names be put on our special meals so they aren't taken by others. It's possible someone else at the event asked for a gluten free meal at the event and the server figured that was the person. Or like the airline story, someone just took it. I guess it's not enough to say gluten free or vegan but specifically, made for so&so.

  6. The only other thing I can think of is meds, like cold meds specifically. I wasn't feeling well this week and was about to take an Airborn when I noticed it contained sorbitol. I suppose I should find a sorbitol free cold med for future use but right now I'm too sick to do anything involving brain cells. I've also notices some of my lip balm/gloss with sorbitol. I just chucked a few from my collection. It may not matter but I figure I rather be safe than sorry.

  7. I agree with the others about soy. I would have said the same thing, that it caused me no issues but lo and behold test results show I'm intolerant. Now when I do have some I break out into hives, my Sjogren's acts up and I feel really crappy.

    There are some Amy's meals that make me absolutely queasy.

    For sleeping I take 5mg of melatonin every night. Works like a charm.

  8. I had the hydrogen test done and was surprised it came back negative for fructmal due to how well I'm doing on the FODMAP diet. As soon as I have onions, garlic, fruit from the 'no' column or too many tomatoes I'm gassy and sick again. I was positive for SIBO and just finished a round of antibiotics so I'm sure I'm feeling better in that regard too. I started FODMAP before the breath test. My dietitian said it wouldn't effect the outcome but I do wonder. I think the true test is the diet. If you remove things and feel better that's a sign. If you introduce them back in and you have issues that's even more signs. I'm planning on staying on the FODMAP diet since it's the first time in 5+ years I've felt like myself.

    I love this gum which uses cane sugar and no sorbitol: http://www.gleegum.com/

    Sorbitol free toothpaste was trickier to find. I must have read 20 different boxes before finding one. I found this one at Whole Foods: http://www.auromere.com/Dental_Care-Toothpaste.html

    Oddly enough, my teeth never felt cleaner. They feel like I've gone to the dentist everyday.

  9. Hi Kathleen,

    I'm following the FODMAP diet and recovering from SIBO. One more day of antibiotics to go. My understanding is that the FODMAP diet starves the SIBO and prevents it from coming back. I feel good on this diet and will continue on it even though my fructose test came back negative. I don't know how anyone follows the SCD. It seems so restrictive and limiting. I suppose I would do it if I needed to but luckily the FODMAP diet is working.

    Here are the best resources I found on FODMAP:

    Book - "IBS - Free at Last!" by Patsy Catsos

    Yahoo group - http://health.groups.yahoo.com/group/fructose_malabsorption_australia/

    Good luck!

  10. I'm one of those with RA who was diagnosed with IBS and then dropped like a hot potato. No advice, no direction, not input. Just a bottle of anti-spasm pills (which didn't work).

    I kept pursuing it and I knew I had Crohn's or celiac or something but I kept getting brushed off. When you have an auto-immune illness like RA everything is blamed on it and some docs aren't interested in looking at the big picture, how systems work together and how something simple like the wrong diet can have a devastating effect on how you feel.

    I had to drop my last Rheumy because he said, 'what you eat has no effect on how you feel.' Bull :P poop.

    My new Rheumy gets it and totally understands celiac. I'm lucky.

  11. Tylenol & Pepto - gluten and dairy free, I take both of these without problems

    Motrin & Imodium - I'm not sure, I don't take these

    Gas-x gel caps - gluten free

    Tums - not gluten free (I've read some flavors are/aren't gluten-free which is confusing enough for me to consider them not safe)

    Gas-x chewables - not gluten free

    Great alternative to Tums and Gas-x is Pepcid AC chewables which are gluten and dairy free. The Pepcid AC website typically has great coupons. Last one I got was for $3 off.

  12. It can be difficult to find consistent information on the FODMAP diet but here are two resources that I have found to be very helpful:

    Yahoo group based in Australia - http://health.groups.yahoo.com/group/fructose_malabsorption_australia/

    Book - "IBS - Free at Last" by Patsy Catsos

    I avoid all these veggies: garlic, onions, scallions, shallots, asparagus, artichokes, cabbages, peas, beans.

    I eat these veggies in small amts: potato, corn, tomato, avocado, broccoli, cucumber, celery, peppers, carrots, green beans, leafy greens.

    I avoid all fruits except: bananas, strawberries, blueberries, pineapple, lemon and lime.

    I avoid these grains: oats, brown rice.

    I eat these grains: rice, quinoa, buckwheat, sorghum, millet.

    I avoid these nuts: almonds, pistachios.

    I eat these nuts: walnuts, cashews, pine nuts.

    I eat all proteins: eggs, poultry, fish, pork, beef, etc.

    I also avoid: honey, agave, HFCS, ketchup, bbq sauce, jams if they contain extra fructose or if they have added pear juice, fruit juices.

    The diet also limits wheat/gluten and dairy but since I'm gluten-free and dairy free already I didn't list it above. I also avoid soy.

    That's the gist of it. It's very trial and error. Some people can't have pineapple but it's ok for me. Many people can have oranges and mandarins but they cause me grief.

    The book walks you through how to do an elimination diet and start with a baseline. I found that helpful because it's difficult to wing. It also provides shopping lists and meal ideas.

    I hope that helps. :)

  13. I'm not sure anyone knows where the line really ought to be drawn between "gluten intolerant" and "celiac disease".

    Exactly. I firmly believe they're the same thing but the right tests haven't been created yet and all of the genetic markers have not been discovered yet. I'm considered non-celiac because I don't have the currently recognized genetic markers yet I have all the symptoms and signs of celiac.

  14. Hi vbecton,

    It could be RA. If you sit a lot, and who doesn't, the pressure could be aggravating your hips and pelvis. Try getting up every now and then to stretch and loosen the joints. Even a little helps.

    she told me I would have to learn to live with the pain and referred me to a chronic pain practice

    Wow, another horrible doctor. There are so many ways to treat RA that don't include pain meds. Pain meds should be a last resort when all else fails.

    My RA is doing well and all my diet changes have had an effect. I'm much less sore and swollen. Next step is finding out what came up positive on my RAST test.

  15. I just had this done and it was an easy test. It's performed by a nurse or tech. You fast from the night before. Then that morning they take a breath sample to determine your baseline. You breath into a tube and your breath is captured in a bag which is then sucked into an attached syringe. The syringe is then inserted into a machine which does the calculations. Then you drink something. In my case it was lactulose (a.k.a. liquid teflon ;) ) which is a synthetic sugar. Some labs use a different drink but I think the idea is the same. Then every 15-20 minutes or so the tech takes another breath sample and records the numbers. The test lasted for 2 hours. There were no immediate results given but I knew it was positive because I had to use the bathroom every 20-30 minutes and that went on for about 12 hours, lol. It was not painful or uncomfortable, just tiring. Luckily I live just 20 minutes from the hospital so I was able to time my trip home. I had the fructose malabsorption test too which is similar except you drink fructose. That test I only needed to use the bathroom twice. That test came back negative. So I was able to get an idea of how well things were going based on how my body reacted. Test results from my doc took a week. I'm on antiobiotics for the SIBO now and I'm on a FODMAP diet (which starves & prevents the SIBO). Both seem to be working really well.

  16. I'm dairy free and have lots of sub ideas for you.

    If you can have soy:

    soy milk (try the chocolate Silk - to die for)

    soy yogurt (Silk is really good)

    soy cheese (never found one I liked)

    soy ice cream (So Delicious is awesome, as are Toffuti Cutie ice cream sandwiches)

    soy cream cheese and sour cream (Toffuti - awesome)

    butter subs with soy: Earth Balance, Smart Balance (both are excellent)

    If you can't have soy:

    rice, hemp, almond milk

    coconut yogurt (So Delicious - very good)

    coconut icecream (Coconut Bliss - to die for)

    Daiya cheese (very good, great on pizza)

    for a cream cheese sub I make a cashew spread using this recipe as a baseline: http://tinyurl.com/lpstfj

    butter sub without soy: Soy Free Earth Balance (can be hard to find)

    Amy's makes a frozen 'mac and cheeze' with rice pasta and daiya cheese that is to die for!! There is also one with rice pasta and soy cheese.

    * edited to day: most margarines have dairy.

    Also: Labeling for dairy is awful. Some products may say 'dairy free' when in fact they mean only 'lactose free' and it will actually have whey or casseine (milk protein) in it.

    If you can tolerate casseine you may be able to have some International Delight coffee creamer and Cool Whip.

  17. when my breads get a bit stale I cut them into squares and freeze them for later stuffings or pulverize them for breading

    I do this as well.

    Last year was my first gluten-free Thankgiving and I was very lucky that my husband's relative, who graciously had us over, was familiar with gluten free cooking. Her husband was gluten free for years due to Crohns. I brought roasted veggies and had the turkey, green beans and cranberry sauce (Ocean Spray canned is gluten-free).

    While Thanksgiving is my absolute holiday it was the first time I didn't a. overeat b. feel stuffed and bloated and c. didn't have the day after food hangover. I didn't get sick at all. I felt great.

    Christmas was harder to navigate. Buffet, pot-luck, shared utensils, confusion over ingredients, etc. I got sick as a dog.

    p.s. this thread made me hungry!!

  18. I 'outgrew' some allergies; food, pollen and animal. Though maybe it's not a matter of outgrowing per se but having a stronger immune system which can handle the exposure.

    I did allergy shots as a kid, took meds, neither of which worked. Then in my 30's these allergies lessened and lessened and are now gone (or suppressed to the point they don't cause me grief).

    I have wondered if those allergies were 'oral allergy syndrome' and not true allergies in their own right which could explain how and why they disappeared.