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kayo last won the day on December 13 2010

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  1. Hi keshav, sorry to hear you're having some difficulties. Something in your post jumped out at me that may be of some help you. The elevate Eos indicates that you are having an ongoing allergic response. My doc picked up on this and theorized that my body was making too much histamine in my gut and therefor reacting to everything I ate as if I were allergic/intolerant of it. I had constant abdominal pain and big D following a treatment for SIBO. I should have felt better but I felt awful. I was on a diet of rice and chicken and still having reactions. He started me on a med that is helping. It's a histamine-blocker called gastrocrom. It's been about 3 weeks and I'm doing really well. I still have some D now and then but the pain is gone. I also have issues with fructose and fructans so I follow the FODMAP diet. That has helped tremendously too. Good Luck!

  2. I agree, talk to a doctor. That's a lot of weight in a short amount of time. I bet much of it is inflammation and swelling, ie, water weight. You may have something else going on like SIBO or additional food intolerances. Soy was a big culprit in my weight gain and swelling. That's something to take a look at as there's quite a bit of soy in gluten-free foods. You may want to follow a whole food diet (lean protein, fruits, veggies) for a bit to give your intestines time to heal. The good news is you're 15! You're way ahead of most of us here who have struggled with these issues for years before finding the culprits and solutions. It will get better and since you're still growing you have such an advantage over us old folks :-) who's metabolism have slowed down. Hang in there!

  3. I can relate! It will go away but it will take time. It's possible you could have additional intolerances as that is pretty common with all of us, celiac or non-celiac. I'm intolerant to soy which makes being dairy free a bit trickier since soy is the perfect non-dairy solution, but there are others. A good probiotic and digestive enzyme will help. Keep a food diary. This will help you narrow down the suspects. I too had SIBO and I have issues with fructose (apples, pears, etc.) and fructans (onions, garlic, shallots, etc.) I'm just now at a point in my diet where I have very little gas. It takes time. Be patient and focus on the little victories. You can do it!

  4. I use Auromere toothpaste because I needed something that was gluten-free and sorbitol free. My teeth have never felt so clean! They're squeaky dentist-clean every day. My last two dental appointments the hygienist remarked how amazing my teeth looked. I had no plaque and no tartar either time. All the diet changes have made a huge difference and I have good teeth (meaning, not problematic). Now I have great teeth.

  5. Pre gluten-free days I used wontons for making a quick ravioli. I wonder if the rice papers would work or if they would fall apart? They're awfully delicate.

    gluten-free wonton wrappers would rock my world. Even better would be an already made frozen gluten-free eggroll/spring roll!

    (hoping the good folks at Udi's and Kinnikinnik read this forum :-) )

    (sounds like a good project for the good folks at Amy's too :-) )

  6. You had me at pierogi!! I'd love something like this too. I haven't ventured that far into my cooking yet. Waiting for the cooler weather. My husband bought me a pasta attachment for my Kitchen Aid mixer so I plan on trying some things out.

    I wish the gluten-free bread makers like Udi's and Kinnikinnik would make frozen gluten-free dough that would mimic phyllo and puff pastry. Then I'd be in heaven.

  7. I recently read on this board that even the walk up type food places at Disney are intolerance/allergy accommodating. Sorry, I do not recall the thread where I read it. I tucked that info into my brain since we may be going to Disney soon. I haven't really traveled much since going gluten-free (and others) so tips like this tend to jump out at me.

    I don't know which of my intolerances are the worst. Soy makes me hot, swollen and causes hives, gluten makes me spacey, achy and crampy and gives me big D, lactose sends me right to the bathroom.

  8. The best part of this forum is that everyone gets to share their experiences which are extremely helpful. We all have different levels of symptoms, healing and reactions.

    That said, Gemini, your posts are incredibly insulting and condescending. While you have a very interesting viewpoint it's getting lost on me when you say things that suggest the rest of us aren't using common sense or our brains.

    I appreciate your experience but not the insults.



  9. My loose/diarrhea yellow stools

    I'm glad this was mentioned as it describes my symptoms too. I'm also seeing undigested food. Well, hello carrots! I googled yellow stool and the pancreas was mentioned which scares the dickens out of me. A good friend of mine who also had RA and took the same RA med as I do died of pancreatic cancer a few years ago.

    The pain I get is in the front just under my last set of ribs, if that makes sense. It's lower than my stomach which I would estimate is under my ribs but closer to the base of my breast. So I can't tell which organ it is - pancreas or colon?

    I'm on a histamine blocker which seems to be helping but the D hasn't subsided yet. The improvement is the pain is less sharp, less annoying and even though I have big D it's not the 'OMG, I need to find a bathroom now' kind of D. It's still yellow though.

    The other reason I think it might be my pancreas is I can't handle sugar on an empty stomach - I get severe pain in that spot. I've had to experiment to find a non-sweet breakfast that wouldn't give me pain (sweet potatoes work best). I'm not a breakfast person at all and hate to eat in the morning but need to take the med at breakfast time 15-20 mins before eating.

    At last check my vitamin levels were all good. I'm perplexed unless this is all symptoms of too much histamine and/or recovery from SIBO.

  10. I'm not sure I have ever had DH but suspect I have and it was misdiagnosed as shingles. I'm also prone to random hives, psoriasis, kp (chicken skin) and general redness. When I went gluten free I changed all my hair and body products and cosmetics. I now rarely have hives or psoriasis and my kp is slowly going away. So for me I know there was a connection. I figured it was a simple change and would eliminate any worries of getting glutened/CC'd. It didn't make my life anymore difficult. If anything it made it easier by eliminating potential suspects.

    Are there any mainstream shampoos and cosmetics that are gluten free? I know about Sauve but that's about it.

    Suave, Dove, Pantene, Cover Girl, Burt's Bees, Avon, Tressemme, Desert Organics, California Baby are all good places to start. Just heck labels as all products may not be gluten-free and call the 800 # if you're unsure. I use or have used all of the above products and are happy with them.

  11. This thread is so interesting and this is too:

    I don't react to poison ivy and alcohol doesn't affect me. :)

    Alcohol doesn't affect me like it does others either. I can drink everyone under the table. I will often feel sick well before I feel drunk. I joke that I get the hangover first and then the buzz. I barely drink anymore but when I think back to my college days I'm amazed at how much I could drink.

  12. Thanks for the spreadsheet by the way!!! It has helped me map out my food.

    You're welcome, glad it's helpful.

    You aren't feeling better either? How long have you been gluten-free?

    It's weird, in some ways I'm better and worse in others. The bloating is gone. I no longer look pregnant. The gas is gone and the feeling of feeling constantly hungry. But all food is bothering me and causing big D. I was out sick twice last week and my weekend was a bust.

    Doc thinks my body is producing too much histamine which causes my gut to react to every food as if I'm allergic/intolerant of it. He put me on a histamine blocker and I think it's working. The pain is less sharp but still having big D. It'll take a week or more to know for sure.

    I'm no doctor, but it sure seems the small intestinal bacteria overgrowth can cause major issues. It can also run with microscopic colitis. I'll let you know what my GI says on Wednesday.

    Please do. I hope you get some answers. I think the SIBO has really messed me up too and I worry it's either not fully gone or it's going to come back. BTW, the FODMAP diet is supposed to keep the SIBO at bay so I'm sticking with it. It does seem to help. For example haven't had any GERD or heartburn since starting the diet. I think onions and garlic were killing me.

    Hope you feel better too!!

    Thanks, you too!!

    edited to add: I think the fructose test is unreliable. I had it done and it was negative which shocked me and my docs. If I stray off the FODMAP diet my symptoms come raging back. I think the diet is more reliable than the test.

  13. Oh vbecton, my sympathy goes out to you. It's so frustrating. Hopefully the docs will figure it out.

    I too feel like death warmed over and I'm reacting to everything. It's such a long road for some of us. Driving into work today all I wanted to do was turn around and go back to bed.

    Off to look up microscopic colitis...

    Hang in there!

  14. It could also be soy. It's in a lot of the gluten-free baked goods. That one threw me for a loop. I had no idea I had a soy intolerance. I also have issues with fructose and fructans and my doc suspect my body produces too much histamine. After finishing a round of antibiotics for SIBO I had (still have) constant D even on a bland diet of chicken, rice, bananas and potatoes. It's not unusual for us to have more than one intolerance or issue going on.

  15. yogurt and hard cheese have very little lactose.....

    But very little does not equal none. Besides, he didn't make that distinction so she continued to eat cottage cheese, cream cheese, yogurt, etc.

    I'm severely lactose intolerant and been dairy free for a long time so I know my stuff when it comes to lactose, cassein and whey. Lactaid doesn't work for me but I suggested to my friend that she try Lactaid milk or soy milk to see if she feels better.

    I don't want to stray too far off topic, just wanted to highlight that nurses and docs can be just as ignorant about food intolerances as anyone else.

  16. I have RA and have had a lot of surgeries and related illnesses and I heard the "It could be worse" many times in my life. This is one of my favorite responses if I feel they are being flippant or condescending.

    Them: It could be worse

    Me: I know, I could have your thighs! [insert: haircut, ugly shirt, etc.]

    You should get these steroids I get.

    When anyone tells me, you should go on steroids, I say no thanks, I'd like to keep my hips. Long term steroid use should be a last ditch effort. People don't understand how steroids can rob them of calcium and destroy their joints.

  17. I can't believe a nurse could be that clueless

    Related story... a friend had gastric bypass surgery and is having trouble with her diet. She suspects she might have lactose intolerance so she called her doctor who said, yogurt and cheese don't have lactose because they're processed so she can go ahead and eat them.


    I can maybe sort of understand an average person may not know this but a doctor? One who deals with gastric bypass patients who have to drastically change their diets? You'd think they'd be up on basic food intolerance knowledge.

  18. T.H., I'm so glad you had a breakthrough too! What an interesting discovery on the swelling vocal chords. And what luck that there is a therapy that can help.

    I almost didn't go to see the allergist in my GI doctor's group. I've had allergists in the past that were so not helpful that I had no hope that this doc would be of any use. In fact I started this journey 5+ years ago with an allergist because I knew food was a trigger. If only that doc had a clue I wouldn't be in the boat I am today. I'm glad I went to see this new allergist. This is the doc who seems eager, willing and happy to put the pieces of the puzzle together. In fact he got my records from that first allergist to help him investigate my issues. I'm impressed that he knows so much about RA, RA meds, gluten and other food intolerances and how this can get all jumbled up and make me miserable. I was so thrilled that he had a theory (histamine levels) that it took all my energy not to bear hug him right there on the spot.

    I record symptoms in my food diary but never thought to track coughing, sneezing and raspiness since I've always had these things and it never really occurred to me that it could provide a clue as to what's going. I started to pay attention last night and realized I often have sneezing fits or coughing after eating/drinking. It seems so benign. Definitely not what I would call an allergy attack with the full on sinus, etc. issues so I never really paid attention.

    I'm still looking for some good histamine resources. I will post when I find some.

    Happy Day!