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Everything posted by trcn

  1. Hello everyone. Would someone offer an experienced opinion to my situation? I completed a saliva cortisol panel for my ND which contained a screening test called Gliadin Ab, SIgA. The results were 27 with normal range < 13. The description states "mild intolerance or reactivity to Gliadin and may be clinically asymptomatic, howere an ongoing low-grade intestinal inflammation following Gliadin intake has been demonstrated". I was intrigued by this result and began gathering info via, what else?, the internet. This is how I found this site. I have no GI symptoms whatsoever... My history in short is: Graves Dz and Hashimotos Dz with radioactive iodine ablation of thyroid. Since the ablation I have had persistent and drastic hair loss (for 3 yrs, I am 38 now). I have been on a quest for the cause of this as it hasn't resolved since the radiation, even tho my thyroid levels have been stabilized and I feel great. One important factor is that I was severely malnourished by the time I was dx'd with Graves Dz and had lost 13 lbs and was breast feeding. I gained the weight back easily once the thyroid was dealt with. My only remaining symptoms were severe scalp itching and hair loss (no sores, scabs, blisters) and itchy skin, mostly on my arms (again, no sores, scabs, rash, blisters) and unrelenting acne as if I were 15 (which I didn't have when I WAS 15). I thought I'd try Gluten Free for a few days to see what happened. My skin cleared and became wonderfully smooth and soft (4 weeks in and NO pimples at all!) and within 4 days my head and body stopped itching. Now, I believe, I can tell when I have been exposed to gluten as my scalp itches terribly and my arms too. This happened when, stupidly, I ate Dorito's (saw it on a gluten-free list somewhere). I didn't figure it out until I went back to the bag, searching everything I had eaten in the past 2 days to find gluten... there it was! Otherwise, my hair has gained it's texture, scalp not itchy, and I have new hair popping out everywhere. My Endo was interested in this finding so ran a panel of Celiac tests (anti gliadin TTG, IGG, TTG-IGA, Immuglobulin, endomysial antibodies) and All were negative. I had been Gluten free for 2 full weeks at that point but he thought it wouldn't matter. I have no intention of going back on gluten for re-testing. He feels, definitively, I don't have Celiac. I know for a fact I am sensitive to gluten. Do my symptoms make sense to anybody? Is it possible not to have GI symptoms? Can I just be "sensitive" to gluten without having Celiac sprue? Can my hair loss be related? Thank you so much and sorry for the long post! Tracy
  2. May I reach out to you all and ask for help deciphering my results. I can tell I have to eliminate soy, casein, gluten (have been gluten-free x 4 months), and yeast (?). I have autoimmune thyroid disease (Graves AND Hashimotos antibodies) and my health trouble started immediately after having radioactive iodine ablation of my thyroid. I am blessed to say that my only symptoms are major, constant hair loss and acne. I am 38, female. Acne cleared briefly when I went gluten-free. I've been CF, SF x 5 days and again acne is clearing. I realize these symptoms are nothing compared to the pain most on this board experience and I bow to that level of involvement. Nonetheless, it seems I am (was) heading right down the same highway as those with more severe symptoms? Please interpret based on your experiences the following: Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value Fecal Antigliadin IgA 78 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 46 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal anti-casein! (cow's milk) IgA antibody 54 Units (Normal Range <10 Units) HLA-DQB1 Molecular analysis, Allele 1 0602 HLA-DQB1 Molecular analysis, Allele 2 0602 Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) C) Egg, Yeast, and Soy Food Sensitivity Stool Panel Fecal anti-ovalbumin (chicken egg) IgA antibody 8 Units (Normal Range <10 Units) Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 10 Units (Normal Range <10 Units) Fecal Anti-Soy IgA 17 Units (Normal Range <10 Units) My father has MS and drinks Pepto Bismol by the gallon for as long as I can remember. He also is a dentist (Mercury!!) and violently denies that he could need a gluten-free diet... stubborn. Thank you so much. Tracy
  3. I haven't posted in a while, but I am compelled to respond to this one. I, for one, suffer horribly when I use any hair product with gluten in it. I itch for days on my scalp, face and hands. My major symptom is hair loss, whether I eat gluten (or casein, soy or yeast) or get it on my scalp. It's a different mechanism, but results in the same symptoms... I am now trying Loreal Color Vive (red bottle for dry hair) and I'm not sure yet... there is soy in it and I might be having a slight contact reaction to that. Otherwise, they state it is gluten free. Best wishes, Tracy
  4. Applegate Farms has gluten-free, cg, sf dogs and lunch meats, too. I buy that at Publix and Whole Foods.
  5. One of my many signs of a problem with my gut was when I couldn't tolerate the glasses of wine I would have on a Friday night out with the girls... All of a sudden I would get deathly ill and need 2 days to really recover. I've been gluten free for 5 mos, casein and soy free for 1 month and still am very sensitive to alcohol. More than one glass of wine and I have trembles, headache and fatigue the next day.
  6. When I cut out dairy and soy (at the same time, if that matters... I'm not sure) I was on the couch for 4 days of exhaustion, tremors and light-headedness. FYI! Good luck.
  7. After a few more days of posting the question about die-off effect I woke up refreshed and ready to go... what a difference. I did find much anecdotal confirmation of the withdrawal and some objective reports of the opiate release that occurs with casein and the withdrawal that happens when it is removed from the diet. I am reacting now to even small amounts of caffeine (yes, coffee is still on my menu), so here comes the next intolerance. Tracy
  8. Is there a sort of "die-off" when one goes casein and soy free, as happens with candida when one goes yeast free? I'm 5 days off casein and soy and feel terrible. I have headaches and extreme fatigue. I've been gluten-free for 4 months. Thanks Tracy
  9. I experienced this exact thing, hence the self-medication. All of my issues started with RAI and so I KNEW everything had to be related to thyroid. I was blind but now I see! I think I'll cut back more on the Armour with my next labs. I've been pushing not to lower it too much, but it may relieve my system. My free T3/T4 ranges are at the high end of normal, but my TSH is 0. I want to move on that very slowly b/c I feel terrible (even more so) when I am hypothyroid. And lastly, I was either glutened, caseined, or soyed on Friday night as I spent the day yesterday with extreme fatigue, scalp itching and hand tremors. That is the first time that I've had symptoms after going gluten-free,cf,sf. Now I know what happens and I see the neuro outcome. Hanging in there. Tracy
  10. Rachel, once again thank you for all of your information. I wanted to mention that I have more than hair loss as a symptom, it just happens to be the most persistent and distressing symptom (sadly) I've had throughout, as it has contributed to the general feeling that I have lost my youth to this mysterious group of illnesses. My struggles began in 2002 with the onset of Grave's Dz and, as you probably know, there were many months where I thought i wouldn't live through it based on how I felt. It took 6 months for the Drs to figure out what was wrong with me... all the while, I was nursing thyroid hormones into my infant son who spent 6 mos screaming his head off, but that's another story. I spent years trying to regulate my hormone levels after having RAI, but it turned out I also had Hashimoto's antibodies. That, coupled with the Grave's antibodies, wreaked havoc on my system, even though I no longer had a thyroid. My daughter was dx'd with Lyme Dz in 2004 and I wonder if I may carry it, too, as we lived in a very populated "deer tick" zone. And I had mercury amalgams removed unsafely to boot. My dad has MS (and is a dentist and obviously is DQ1). Soo lots of history behind all of this My symptoms over the years have been neurologically based, but I thought all were attributed to thyroid: tingling hands and feet, months of extreme fatigue on and off, unreplenishing sleep, heart palps, hot flashes, mild dizzy spells. Right now, I feel pretty darn great compared to all the years of that. Again, I thought I was resolving issues with my thyroid all along when the gluten thing "hit" and now soy and casein. As you describe, more things keep developing as I resolve others. When will it end? I just had some concern that I wouldn't be taken seriously on this board, or others if it seems my only concern is hair loss. I should be ashamed to admit that it is the one thing that pushed me to the research mode, but now that I have so much info on the amount of damage my system is carrying, I am even more worried about my health that it may seem, and am very serious about getting better. My plan is to investigate Lyme and Mercury Toxicity as the primary sources of immune attack. As I am double DQ1, I am very fearful of developing MS like my father, especially if I also have mercury in my system as he surely does. Thank you so much. Tracy
  11. Tracy I've added you to my friends so we can stay in touch, so nice to meet you...Healing wishes to you, Linda

  12. Hi Linda. Thank you for your message. I am very sorry about your sister. My father has been suffering with MS for 20 yrs. I have no answers, for sure. I do know that if you are sensitive to gluten and soy, you are probably sensitive to casein, too. I believe as Rachel says, that we will keep developing sensitivities until the underlying issue is resolved and the gut it healed. I actually hope mine is mercury so that I can address it. I don't know what else it can be. I have minimal neuro symptoms: occasional tingle in hands and feet. I emailed Dr. Hadjivassilion and his response was: Thank you for the e-mail. I am not an expert on HLA as such but what I do know from our studies is that those meurology patients with gluten sensitivity that do not have the HLA DQ2 or DQ8 have the DQ1. Hope this is of some help Marios meurology = neurology??? But it was nice to get a response from him re: double DQ1. Thank you for the links. I will check them out. Let's stay in touch. PM me if you want. From where are you? Tracy
  13. I can honestly say I am pretty darn afraid of: " most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long. " Who is the doctor with the long H name that I should contact? I will, definitely. Thanks for your opinion. I am off gluten, casein, and soy. I am through the withdrawal i was feeling, too. That was yucky. Now what? Check for mercury toxicity? Lyme Dz?(my daughter had, by the way), parasites? Where do i start? I will also contact Enterolab. Tracy
  14. I am drinking Pacific Low Fat Rice Milk and Low Fat Vanilla Rice Milk. Their website states they are gluten free. Does anyone know otherwise? I do feel like I'm being glutened (heavy head and arms in morning, extreme fatigue, sinus pressure, but my classic gluten symptom is severe itching of scalp, face and arms and that's not happening now). I'm going to chalk it up to withdrawal and check very carefully for possible gluten sources with new foods I have purchased for GFCFSF recipes. I tried searching this topic on the board, but didn't have much luck. If anyone else had withdrawal from casein and soy, would you share? Thank you. Tracy
  15. Interesting, Rachel, as Sorghum was definitely not something I tolerated well when I went gluten free. I had worse GI symptoms with that as compared to anything else. I am substituting Rice milk for creamer and cereal that is new. Wonder if rice is an issue for me. I'll try Hemp tomorrow and see if I feel the same... Withdrawal is a good description. I am wiped out and really feel terrible. I wasn't expecting that so I had been wondering if I got glutened. Also, was wondering if eliminating casein and soy but leaving yeast (level was 10 with normal being <10) to hang out there in my system might magnify it's effects?? Thank you again for your knowledge. Tracy
  16. Rachel, your information is so helpful to me. I think the yeast is the biggest issue at this point. It may be completely resulting from mercury toxicity and it may be the root of my other issues. But, I do have 2 genes for gluten sensitivity that apparently kicked in when my system went wacko. I guess DQ1 is a mystery, then. It seems I fall right in line with the majority that you polled. I'd love a link to that thread, if you get a chance. When I gave up gluten 4 months ago my hair texture changed to baby soft and flat and increased in shedding. I was surprised by that. So there is some connection there. I feel I did have some mild neuro symptoms that I always attributed to thyroid (tingling hands). My dad has MS, so I always worry about that hitting. It's so hard to watch. Also, I feel pretty poorly since giving up casein and soy this week... lots of time on the couch, queasy. Is this related? ShayFL, I had ferritin checked 2 yrs ago and it was 59. I don't know what it is now, but I suspect it is pretty low considering that I have other nutritional deficiencies, worst being Vitamin D. I feel like hair loss could be from that, low B12, and/or low ferritin. I'm on a wild goose chase. Thanks for your input. Tracy
  17. Thank you. I had RAI in 2005 and have also tried everything under the sun to relieve my symptoms. I am regulated at 3.5 grains of Armour Thyroid and seem to be doing very well. Hair loss has never stopped and seems to be more related to the food intolerances at this point (?). I am at a great weight and have no symptoms, besides HAIR. I too had 4 months of tetracyclene after a reaction to iodine (hello, thyroid!) caused acne-like lesions on my face and kept erupting. Anyway, I was a walking yeast infection with no relief given any amount of Diflucan, probiotics, etc. I finally quit the Tet as the yeast was unbearable. This was 2006. I know I have candida issues as I always have yeast present (description withheld intentionally). I also had unsafe mercury filling removal (while I was in the midst of the worst of the Graves Dz. in 2005) so I was already hyper-immune. I haven't been the same since RAI and I think this all just layers one on top of the other. I am trying to heal my gut at this point, except eating yeast -free is extreeeemely difficult for me given no gluten, casein, or soy too. I'm considering mercury detox, but that will require major research on my part as I know that can be very complicated and dangerous if not done correctly. I have no doctor willing to address ANY of these issues. Ok, thanks again. And anyone who can comment on the Genetic aspect of my results... I'd be very grateful. Tracy
  18. Thank you for contacting us with your question. We appreciate the opportunity to provide information regarding grain derived ingredients in Colgate Palmolive products. We do not intentionally add gluten to the following Colgate Palmolive products. However, we cannot guarantee that the ingredients used are not exposed to any glutens. Afta Shave products, all variants AJAX All Purpose Cleaner - Lemon and Ammonia AJAX Cleanser AJAX Dish Liquids - all variants AJAX Laundry Detergents - Powders and Liquids Cashmere Bouquet Bar Soap Colgate Toothpaste, all variants Colgate Shave Creams, all variants Colgate Simply White Clear Whitening Gel, all variants Crystal Clean Stick Deodorant, all variants Crystal White Octagon Lemon Dish Liquid DERMASSAGE Dish Liquid Dynamo Laundry Detergent Fab Laundry Detergents - Powder and Liquids Fluorigard Rinse Fresh Start Laundry Detergents Gel-Kam Home Care Gel Irish Spring Bar Soap, all variants Lady Speed Stick Deodorants and Antiperspirants, all variants Mennen Speed Stick Deodorants and Antiperspirants, all variants MURPHY OIL SOAP - all variants Orabase Paste and Orabase Gel Orabase Soothe-N-Seal PALMOLIVE Bar Soaps, all variants PALMOLIVE Dish Liquids - all variants PALMOLIVE Gel Dishwasher Detergent PALMOLIVE Triple Action Tabs Peroxyl Gel and Peroxyl Rinse Phos-Flur Rinse Platinum Toothpaste Prevident Gel Softsoap Liquid Soap, all variants Softsoap Body Washes, all variants TOTAL Floss Ultra brite Toothpaste, all variants Viadent Rinse Viadent Toothpaste Sorbitol is an ingredient which can be grain derived and may be found in toothpastes. Our sorbitol is corn-derived. Once again, thank you for taking the time to contact us. We hope this information is helpful. Sincerely, Yvonne Bootbauer Consumer Affairs Representative Consumer Affairs
  19. I've found some posts on natural, aluminum-free deodorants which I think I will try, but I can't find anywhere that states if regular antiperspirants/deodorants contain gluten? I use Men's Speed Stick Fresh Antiperspirant/Deodorant and Yes, I am sensitive to topical gluten containing products. I'm waiting for response from Colgate-Pamolive. Anyone else know? Since going gluten-free I'm noticing increased hair loss when hair falling was a major problem BEFORE going gluten-free. I'm looking for hidden gluten. Already eliminated shampoo/cond, lotion, makeup and facial products... feel so much better (no itching) but can't find cause for increased hair loss. Ingredients: cyclomethicone, stearyl alcohol, mineral oil, talc, hydrogenated castor oil, PPG-14 butyl ether, fragrance, steareth-100, steareth-2, behenyl alchol Thank you. Tracy
  20. Thank you. I am 'hanging', for sure. I just got my test kit from Enterolab for gluten, dairy, soy, casein, yeast, and genetic test. I am thrilled to dig deeper for answers. I think dairy is getting me now. Darn! Yeast has gotten much better. I've been taking coconut oil (3 tsp per day) and have been gluten free for 3 months (about). I think the combo is helping. Cutting out sugar would really help, but I just don't have the strength right now... It's the one food item that brings pleasure in all this madness. Take care and stay tuned.... Tracy
  21. Has anyone tried Ecocolors? They claim to be gluten free, among other things and specifically developed for consumers prone to allergic reactions... If you haven't heard of them, google "ecocolors". What do you all think? Tracy
  22. I know this is an old thread but wanted to add this as of April, 2008. I love the 50/50 shampoo and conditioner and the fiber waxes. Hi Tracy, Thank you for your interest in Giovanni products; please be advised that all Giovanni products are gluten free. Giovanni Golden Wheat Shampoo is only named golden wheat, but this product has no gluten. Giovanni Magnetic line has lactoferin, but all other products are casein free. If you have additional questions please contact Giovanni Customer Service Department: 310-952-9960 Chris Carlisle Customer Service Giovanni Cosmetics, Inc. Toll Free: 800-563-5468 Phone:310-952-9960 Fax:310-952-9532