Jen1104

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  1. Thanks for your thoughts guys! Ennis- Yep, I've had some of my vitamin levels checked: magnesium, calcium, iron, B6 and B12. Only thing low was B12 (180, with range being 200-800) and I've been taking sublingual B12 for 6 mo. Last testing showed it was 780, but no improvement in my symptoms really. Thanks for the link on the elimination diet. I've done one for 3 weeks before but no positive results. Maybe you have to do it longer. It's difficult though. I've been grain, dairy, and mostly egg and tomato free (they seem to bother me) for a year now. I'm running out of food, lol! A few months ago, I decided I wasn't going to eat for a couple days, since I just feel this is all related to food. I definitely noticed more energy than I've had for years! Crazy! Cant keep that up though Cyclinglady- Glad to hear your insides are healed. That's interesting that other autoimmune disease could affect your antibodies, haven't heard that! I'm afraid that if my nerve and muscle pain are from celiac that I've had it undiagnosed too long and it may not get better. Glad to hear you're close to 100%! I've forgotten what its like to feel good. Time will tell....
  2. Hey everybody, This may be a dumb question but I'm gonna ask it anyway. A little background: I believe I may have celiac as I've had all kinds of weird and painful symptoms for many years. I have been gluten free for a year (very strict, follow paleo diet--no grains or dairy) and I rarely eat any of the processed gluten free foods. A little background: I had an endoscopy along with a colonoscopy because of stomach issues 6 months ago. When I started the gluten-free diet 6 mo BEFORE these procedures, I knew nothing about celiac and didn't realize that you had to be eating gluten for tests to be accurate. After the endoscopy the dr said he could see some flattened villi but the 5 biopsies showed nothing wrong. Given my very bad reaction to even crumbs of gluten and the flattened villi, I think there's a decent chance I have celiac. My question is: Is there any possibility that the celiac blood tests could still show elevated antibodies after a year gluten-free?? To where I could actually have a diagnosis and know I'm on the right track with my health? I've heard of people saying it took several months for antibodies to be in normal range, so I'm thinking if my antibodies started out very high, maybe after a year they'd still be a bit high. If my symptoms eating gluten weren't so horrible, I would do a gluten challenge. But I know I wouldn't last a day. My stomach issues are 80% better since going gluten-free. But I also have severe fatigue, muscle and nerve pain which affects my life very negatively. I have been tested years ago for MS, RA, lupus, lyme---all negative. Just feeling very frustrated tonight and after 25 flippin years of being sick, I just need some answers. Thank you for reading all the way through, and replying
  3. Hey Ennis, Looks like a good lotion being gluten-free and more natural. Yeah, who likes the ones that turn you ghostly white?! Not a good look for anybody. I wonder if there are any safe OTC lotions that you can buy at Walmart, etc? It'd be nice to smell before buying as my nose is sooo sensitive!
  4. Thanks for all the suggestions. I just found Sun Bum and like it for body but it's a bit of a strong fragrance for the face! I'll look into Cal Baby and Shiseido. Any other favorites, please share. I put spf 50 on today and burned a bit, think I need something higher! Not sure what happened to the tan I used to be able to get. Seems I'm overly sensitive to the sun!
  5. Thanks Ennis. Haven't heard of that brand but will check it out!
  6. Thanks Tessa for the suggestion. I'll look into it. I used to use Proactiv. Is that 30 spf? I probably need something 50 spf or higher. I tend to burn. Perfume makes me sick and headachy too.
  7. Hey everyone, Can you guys please help me find suntan lotion that is gluten-free? I'm needing lotion for my face that is scent-free or light scent as I'm sensitive to fragrances, and preferably on the cheaper side (but any suggestions are welcome!) Thanks for your help Jen
  8. Cyclinglady, Thanks for your response too. I have read (on this lovely site probably) what you were saying about the genetics test. I would at least be able to rule celiac out, I realize I can't exactly rule it in if I have the genes. Not able to do a gluten test, seems like I get craaaazy sick off of a crumb! I wouldn't last a day! The last time I ate a piece of bread (when still trying to figure out IF gluten was my problem), I had severe burning pulsating stomach pains and D for 2 months! Never ever again! I had a colonoscopy a few months ago, all was fine there, so I would think Crohn's would not be an issue. Appreciate your input.
  9. Thanks for your reply, Dee. I checked out the book you mentioned on amazon. Seems interesting, may have to purchase that one. I've changed my diet completely over last year or two. I used to eat fast food every day, sometimes twice a day--sooo BAD I know! I eat almost completely unprocessed now - meat, veg, fruit, nuts, some pbutter & dark chocolate. That's about it! I suspect that I either have Celiac (but was already Gluten-Free for 6 mo before endoscopy/colonoscopy, which showed some flattened villi but biopsies were negative) Or....Leaky gut from taking many years of antibiotics for acne. I've had really bad health for 25 years so I suspect symptoms aren't going away overnight, even if gluten is the culprit. Thank again
  10. Hi everybody, I'm just curious if anyone has had the ALCAT food sensitivity test done, and if you feel it was accurate--or not? I'm undiagnosed, but have an extremely bad reaction to gluten: stomach issues, severe neuropathy, exhaustion, etc. So, I have been off gluten (very strictly) for about 10 months now. Stomach and related issues are a lot better but all other issues are not. I'd like to know if I have any other food sensitivities. I am gluten, grain and dairy free (95% with dairy). I feel like eggs and tomatoes cause more nerve pain/muscle pain, so I avoid those too. I did try an elimination diet last year for three weeks: I eliminated gluten, grains, dairy, soy, nuts, eggs (most of the major allergens) and really didn't feel any better. And when I added back in some of these foods, I felt the same. Maybe I didn't do the diet long enough, not sure! I also saw on celiac.com that if you pay for an ALCAT test, you get a free celiac genetic test--another reason why I'd like to do the ALCAT. Would appreciate anyone's experience with this, thanks!
  11. Cyclinglady- Thanks for the suggestion about seeing if there is a pic from my endoscopy. Good idea! I remember getting pics but I'm pretty sure it was just from my colonoscopy. I'll have to dig those up. Yep, I think I may have gluten ataxia. That's scary that if it goes on long enough it could be permanent. I'm hoping I keep getting better being gluten free, time will tell! That's interesting about your niece's crohn's diagnosis. Just goes to show that scopes don't always catch everything. I guess no test is 100%. Psoy- Yep, it's wrong how we are sometimes treated by the medical community. I'd be happy if they would just listen and seem interested in trying to help me, instead of pushing another pill to try to cover up yet another symptom. Not to mention their insensitive and sometimes downright rude comments! I could start a new thread on that alone.
  12. Hey Kareng, Yes, if you can come with me, that would be great! Lol Honestly, I've been treated so badly by some docs over the years I despise going to them, and half the time I forget what to say or ask. But I'm getting better at that! I did ask my dr a few questions about the villi being flattened, he wasn't sure about an answer. He said it may be celiac and he just missed the damage with the biopsies--or I could not have it. Real helpful. I think he said Crohn's could cause villi flattening sometimes but my colonoscopy was fine. I do need to ask dr if he biopsied the flattened areas--or not--but I got a copy of the endoscopy results and nowhere in report does it say seeing flattened villi so there may not be any record of it. (Basically dr just told me some villi were flattened after waking up from endoscopy) And, unfortunately I was not aware of the blood test when I first heard about gluten and decided to try going gluten free. Very frustrating. I may never know.... but thanks for response.
  13. Hey everyone, I had an endoscopy and colonoscopy last Nov because of burning, pulsating stomach pain and other lovely colon issues. I had already been gluten free for 6 months when this was done. (I know, I know, I had no idea I had to keep eating gluten for the tests when I first started the diet). The endoscope with magnifier showed some of my villi were flattened and that I had chronic inactive gastritis, but the dr did 5 biopsies for celiac and they were normal. I am confused about how the endoscope can actually SEE damage (flattened villi) but yet show nothing in the biopsies. I'm sure being gluten free affected my results. (And unfortunately, I can't do a gluten challenge. I have a VERY bad reaction to gluten-very painful burning nerve pain throughout most of my body, extreme anxiety, walking sideways, WEIRD!! And this was from eating 4 servings of gluten free processed food in a day!) My history is I've had muscle and nerve pain for 25 years along with pretty severe fatigue and brain fog. The stomach problems came on in last 5+ years along with bad coughing, sore throat, burning tongue (reflux I guess) and hair loss in last year or two. I've been strictly gluten free for 9-10 months and stomach pains are 80% better and just recently have had some relief in neuropathy and fatigue issues (I've had good hours, not days yet). I'm hoping I'm on the right path for all my health issues. My brother has had some stomach issues and bad neuropathy in his feet the last few years, and my mom also has unexplained neuropathy in legs and feet too but they are not really interested in getting tested. I just wondered about the flattened villi with biopsies being fine and also if I have gluten sensitivity (and not celiac), can that cause flattened villi?? Thanks for reading and for your replies!
  14. Yes, I have heard of her and just read a bit about the diet online. I wouldn't mind reading one of her books. It seems like a pretty extreme diet but I'd do just about anything to feel better!
  15. Hey Cyclinglady, I went to Mayo's clinic about 20 years ago and was tested for MS, and it was ruled out. Mayo's diagnosed me with fibromyalgia. I've thought about having MS tested again. From what I've read though, there's not a definitive test for MS (if I remember correctly). No one in my family has MS or any other autoimmune disorders. But I should look into it, huh? I've just gotten to the point where I despise the thought of even going to a new doctor.