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kayo

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kayo last won the day on December 13 2010

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About kayo

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  1. When I got my enterolab results back I was shocked to see I had a soy intolerance as well as gluten. I didn't know anything about soy intolerance so I searched for symptoms. This is when I had a big aha! moment.

    I stopped gluten the end of July and while I felt some great improvements I still had inexplicable weight gain (after loosing initially when going gluten-free), big D, cramps, brain fog, insomnia, headaches, dehydration, rashes, tingles in my hands and feet. Plus a persistent sore/scratchy throat, raspy voice, a voice that would disappear, and mucusy sinus issues. This one is weird: sometimes my tongue just can't make words. It feels weak. The fatigue is awful. My RA has been acting up as well.

    Search for soy intolerance and see if it describes your issues, I think it does but you would obviously know best. :)

    The other Aha! moment for me is how soy can mess up your menstrual cycle. My periods are 7-10 days long and it's been this way for 5+ years. Docs kept telling me, this is just you. Well, it looks like it may be soy related as well.

    Good luck!


  2. I just found out that in addition to my gluten intolerance I also have a soy intolerance. I'm dairy free too but that doesn't seem to be an issue in these self care products. This has thrown me for a loop. I just finished vetting all my food and personal items to rid the gluten and now I have to go through the entire process again. I'm finding that when something is gluten free it contains soy and vice versa. I had to toss all my lipsticks, glosses, lotions, shampoos because they all had soy.

    I thought I'd share what I have found so far in case it may be helpful for someone else. If you have any gluten-free/soy-free products you love please share!

    I went to the MAC counter at Macy's and they let me flip though their binder that has all of their products and ingredients! I didn't even know such a binder existed! I was on a mission to find a gluten-free/soy-free lipstick and lipgloss. I was surprised to see how variant the ingredients were from one lipstick to another. Here are two that are gluten-free and soy-free: lipglass (a gloss), and slimshine lipstick. It was quite busy so I didn't check the other products such as eye shadow, mascara blush but will go back at another time to do so. They couldn't have been nicer or more helpful.

    Next up was stopping at Whole Foods where I got California Baby bath products. One is a body wash and shampoo combo and the other is a lotion. They're gluten-free/soy-free and free of other allergens too. I haven't tried the body wash/shampoo yet but it smells nice. The lotion is very nice, not greasy.

    It's expensive to be gluten-free/SF!! But I just can't go without a bit of lipgloss and my beloved Burt's Bees contain soy.


  3. One more question. I have seen people describe themselves in posts or in their sigs by their gene info. Sometimes I see people say double or single DQ#. How do I transcribe the results below? Would I be a DQ1 or a DQ1,4? I'm not sure what the 1,4 (5,4) numbers mean, nor do I know what 501 and 402 refer to. I need a science degree!

    HLA-DQB1 Molecular analysis, Allele 1: 0501

    HLA-DQB1 Molecular analysis, Allele 2: 0402

    Serologic equivalent: HLA-DQ 1,4 (Subtype 5,4)

    Thanks again :)


  4. Thank you both for your responses - they mean a lot to me. It's nice to have 'company'!

    It's funny, I was fully prepared for gluten intolerance or celiac results but not the soy intolerance. If I remember correctly the soy test was lumped in with eggs and yeast. I half expected to have an intolerance to yeast but it came back negative. Very glad I'm also negative on eggs.

    This has thrown me for a loop. It does make sense though and I'm glad to have some answers which will help me get better.

    I feel like I just made it through my gluten mourning period and wham! another food friend has died. Not ready for another wake and funeral!

    Thanks for the tips on mayo and earth balance. It seemed like everything I pulled out of my fridge and cupboards last night had soy in it. Soybean oil and soy lecithin seem as prevalent in foods as much as gluten!

    :blink:


  5. I read somewhere, maybe on these boards, that Tyson sometimes injects their chicken with a solution that contains gluten. This is important to know because some restaurants are supplied with Tyson products. The other is Tums. I had no idea that the Tums and chewable Gas-x that I was taking to lesson the effects of gas from gluten actually have gluten in them! I was fixing my gluten issues with more gluten! I have since switched to gluten free Gas-x pills (not chewable) and chewable Pepcid AC. Both work very well. The other thing I wanted to share was I just got my tests results from Enterolab and I was shocked to find I have a soy intolerance. In fact the number was higher than my gluten number. I didn't expect this at all. So I concur with the others. You may want to keep a food diary and begin and elimination diet. Good luck!


  6. I get a pain in that area too. I call that spot my 'pissy colon' because that's where it seems to be. I have had that pain for years. For me it seems to be associated with cassein and not gluten. I am severely lactose intolerant but can tolerate a bit of cassein, like in cool whip or veggie cheese or coffee creamer. Nothing seems to make the pain better. It doesn't seem to be gas either. It's a weird discomfort.


  7. Hi all,

    I got my test results from Enterolab and would love to hear your take on the gene info which I'm finding a bit hard to understand. I think this means I'm negative for celiac but positive for gluten intolerance? If so that will be a relief. I was really worried about the celiac possibility. (I already have RA)

    Also I'm shocked at the soy results. I had no idea I had issues with soy. :o I just did the test to be comprehensive. Since I'm lactose intolerant I use soymilk in everything. I just got to the point where I have vetted all my food for gluten and now I have to start all over again and check for soy. I'm so deflated! and exhausted!

    At the same time I'm glad to see the tests do show a gluten insensitivity. If I had gone by the one (wrong) blood test result (negative) my doc took I'd be eating gluten today. I'm glad I stuck with the gluten free diet.

    Fecal Anti-gliadin IgA: 14 Units

    Fecal Anti-tissue Transglutaminase IgA: 5 Units

    Quantitative Microscopic Fecal Fat Score: Less than 300 Units

    Fecal Anti-casein (cow's milk) IgA: 9 Units

    HLA-DQB1 Molecular analysis, Allele 1: 0501

    HLA-DQB1 Molecular analysis, Allele 2: 0402

    Serologic equivalent: HLA-DQ 1,4 (Subtype 5,4)

    Fecal Anti-ovalbumin (chicken egg) IgA: 7 Units

    Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA: 5 Units

    Fecal Anti-soy IgA: 18 Units

    Thank you :)


  8. I had a bad fritos reaction last week. The pain woke me in the middle of the night and had me doubled over. 2 hours of pain and diarrhea, sweating, nausea, and nearly fainting. I haven't had a reaction like that in a long time. That type of reaction for me points to dairy more so than gluten. I went over everything I ate in the past 4 days and the fritos were the only culprit. I suspect a CC issue with either dairy or gluten. No more fritos for me!


  9. This is my first gluten free Thanksgiving too and I've been somber about it as well. I'm also dairy free which makes navigating a meal at someone else's home a real challenge. T has always been my favorite holiday and the T meal is my absolute favorite meal. It's all the things I love. I love to cook and can totally recreate a gluten-free/df T meal so that's not what is bothering me. It's this:

    I'm terrified of being the odd one out. I'd really prefer to just blend, and not eating the food doesn't bother me, but I don't like standing out due to the disease.

    I've always been a go with the flow person so I hate what this diet does to my frame of mind. It shines a spotlight on me that I don't want. I know this is part of accepting the gluten-free lifestyle and it's a phase (hopefully) but I totally understand this feeling like, why must I be different? I guess you could say I'm in the midst of a pity party as I mourn the loss of my favorite holiday in the classic sense.

    I imagine this is how an alcoholic might feel around the holidays faced with the social drinking at family and friend gatherings.

    Next year I will make T myself and make all my favorite things.

    Happy Thanksgiving all!


  10. I'm so happy to hear that this is common and shared experience and with time it should go away. I'm 5'3" and have put on 40 pounds over the last 5 years, much of it in the past 2 years. I hover around 140 pounds. But as you can see, prior to these GI issues I was quite underweight at 100 lbs. Most of my life I had difficulty putting on weight. Part of my adult life I hovered in the low 90's and high 80's. Since I have RA docs just blamed it on that. It was a struggle to weigh 100 pounds. Then voila! I started putting on weight, at first I was relieved and then concerned when it didn't seem to want to stop and there wasn't a caloric reason for the gain. That's when I became concerned.

    At 5'3" and 140+/- on a petite frame I'm now one of the 'normal/chubby' ones that makes docs look at me and say, no, you don't have [insert GI issue here]. It's been a long battle for docs to take my concerns seriously.

    Anywho, I've been on a gluten-free diet for 3 months and have seen great improvement in how I feel. Much of the inflammation I had all over my body has reduced. (headaches, diarrhea, acid reflux, etc. all ceased too)

    I've lost 5 lbs which is amazing because other than cutting out gluten I haven't changed my diet. However that loss of inflammation and weight just accentuates my belly! A neighbor asked me, are you having the baby soon? Not, are you having a baby or how far along are you but an assured opinion that I was both having a baby and that it was going to be soon! Yes, that's how big my belly is. I look 7-9 months pregnant on any given day. I have to say it's made me quite depressed before learning how common this was.

    I too have regular clothes which I call Outfit As (pants with buttons and zippers) and then slightly 'pregger' clothes which I call Outfit Bs (nice pants with elastic waist) and super 'pregger' clothes Outfit Cs (sweats, yoga pants). This makes planning outfits for work challenging! So far I haven't had to resort to wearing the Outfit Cs to work yet.


  11. I'm on the journey to figuring out if my GI issues are gluten insensitivity or celiac. I have my kit from enterolab to do this weekend but when I was at my rheumy's a few weeks ago I asked him to run the blood test to see what it would show. Unfortunately at the time I didn't realize I should have been more specific* so the test ran was the "TTG/Endomysium Ab, IgA". My results came back as a 2, with a normal range of 0 - 19. I knew the blood test would be a long shot as I stopped eating gluten 3 months ago and from what I read one can also be IgA deficient.

    However, I compared all of my blood test results (routine RA blood work) to the results I got 6 months ago to see if there has been any improvement in my general health. The only change in my lifestyle in the past 6 months has been the gluten-free diet (I have been dairy free for 4+ years). I was happy to see that my CRP (c-reactive protein) which is the indicator used to determine how much inflammation one is experiencing drop 6.5 points (from a 10.8 to a 4.3). Normal range for CRP is 0.0 - 3.0. So while I'm still out of the normal range for inflammation there has been a significant reduction from where I was 6 months ago. I feel this improvement in my body as well.

    This tells me I had indeed been experiencing an immune reaction to gluten. I knew I was but it's nice to see the numbers support it

    I am anxious to see what the results are from enterolab.

    *sidebar rant: don't you hate that you have to tell the doctors which tests to run?! I'm not the one with the medical degree! And yet all the tests I think I needed (total IgA, IgA gliadin, IgG gliadin and IgA antibody) weren't run. Also not run was a test for vitamin D. I was curious to see if my absorption has increased in the past 6 months. (test result 6 months ago: 11, normal range 25 to 80)