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  1. Wow. I guess I got lucky. No issues with dairy, here. So thankful for that. Though, when I first came out of the hospital, the doc told me many celiac sufferers are also dairy intolerant so I had the vegan dairy and it wasn't the worst ever. Sorry to hear your way hasn't been as easy. Like you, when I was sick (and still undiagnosed), I couldn't gain weight (friends were jealous). But, they were never jealous of my hair. It should have been the giveaway to doctors all along. It's amazing how much you find doctors don't know. You mentioned you have long hair. Mine has grown long again. And it's very curly so, it knots a lot. Do you have issues with your hair being long? Does it tangle and knot easily? Does it pull out easily? Or did it? Or has it just always been strong? Also, do you have a regular doctor you see? Is there a reason they haven't been able to figure out how to help you gain? I know my own doctor thinks I'm vain. So it's hard to talk to him about much of anything -- especially weight loss. He just tells me I'm lucky to be alive and acts as though I should leave it at that. I only ever went on a diet once before in my life. It was ketogenic. I lost 18 pounds in a couple of months. This time around, it's terribly slow going. Not certain why. I don't suppose you'd know since you have the opposite problem. But, I do wonder if the disease has affected my ability to lose weight now.
  2. Thanks for the article. I am going to do some more research based on what I read there.
  3. Interesting response. Thank you. I had thought about this but... I just changed my diet for the first time since getting sick. I am on a ketogenic diet now (70% fat, 20% protein and 10% carbs). I just finished a month on it. I assumed it would help with any Celiac issues but I wonder if, combined with stress, It's not providing enough to nourish the hair? I wouldn't think it would bother my hair but I will try to read up on it. It all gets so overwhelming try to balance everything. The supplements and products I will definitely look up now. And I might look into the CBD. I know I have some left from when I was really in sick and suffering from horrible nerve pain. Not sure if its efficacy now... but I might try it. I wonder: is there any negative side effect to large amounts of magnesium? Will also add the seeds and avocado. Thanks, again! L. PS - Trying the EO shampoo, too. Do you use their conditioner?
  4. Thank you for your response. I will look for a specific "stress" B & C combo. I'm really willing to do anything. I used minoxidil for years and years. It kept just enough hair in my head to do the job but it wasn't great. I stopped using it when my hair grew back so full. I haven't used it for two years and it's been okay, until now. But, yes, they do say use it for life. So I guess I will. My specialist will be my GI specialist. He is the one that finally diagnosed me and saved my life but he is a grumpy old b*st*rd from India who tells me that Americans are too vain. He had no interest in helping me figure out how to grow my hair back or how to lose weight when I gained too much from the 2200 calorie a day feeding tube (I'm just 5' so 2200 calories a day saved my life but left me, well, fat). When I asked about a diet he said I should just be glad to be alive. Granted, I am. But I am also female. Of course this is a man who has only three teeth in his head and who works ungodly hours helping people. So I am grateful to him. But he doesn't get being vain in any way. So, yeah, I may ask my PP for a second referral to someone who might help with the hair loss. That is a good suggestion. Thank you! I'm just not good at thinking well when I am this stressed out.
  5. I just wanted to thank everyone who responded to this initial post. I didn't respond because I ended up back in the hospital and did just barely survive. After 2 months in the hospital I spent another 8 months with a PICC line and TPN. But that did the trick and I healed for some time. Now, I don't know why, symptoms are creeping back (mostly hair loss) and this is scary as can be. I have to recommit to some serious self care.
  6. My Celiac disease went undiagnosed for years due to a lack of GI issues. In fact, for years and years the only symptom that showed from my disease was missed by doctors -- that of my hair falling out. It was after a particularly stressful time with my job and a home invasion robbery that actual GI issues showed up. But my doctor believed they were side effects of a drug I was taking for stress. So, I got sicker. I lost 50 pounds in 2 months, lost all my hair, the ability to walk or even hold my head up and ended up in the hospital at 69 pounds. I died and was revived twice. The doctors didn't believe they would save me. But, I got better with a PICC line and TPN. I've had a little over two years of good health on a gluten-free diet. But, just recently, though still gluten-free, my hair is falling out again (and in great amounts). The one and only good thing that came of my illness and diagnosis was that my hair grew back thick and strong. Now I'm losing it again and I'm just distraught. I know I shouldn't get stressed but I can't help it. I am so tired of looking awful. I have an appointment scheduled with my PP on Tuesday and, even when she approves a visit to my specialist, it will take probably a month or more to get in to see him. So, please, if anyone knows of information on how to defeat this hair loss in the meantime, I would be so grateful if you'd share it. Just FYI: I've started using minoxidil again. I've quit all alcohol. I'm also taking vitamins and supplements including: Multi Calcium with D B Complex Iron Magnesium Fish Oil Probiotics Digestive Enzymes L. PS -- While in the hospital I was checked for everything under the sun. At the time I didn't have any thyroid issues or other side illnesses that would contribute to the hair loss (at least not then). I suspect the recent loss is due to increased stress and irregular self-care habits (I get super busy with work and forget to take pills, etc). Correcting that now but would also like to know if there is anything else I can do to stop loss quickly. Thanks!
  7. Hello all, I have been suffering for some time now and just learned I am severly malnourished and have Celiac Disease (confirmed Monday). The GI specialist said (in from of my boyfriend who has now become a mental basket case) that this is a last-ditch effort treament. He expects 100% cooperation YET I still haven't seen a dietician (only a student who is studying to be one when she grows up). He has given me a supplement plan including a peg for home IV but I- don't know yet how much of that is covered. Any way, I have a medical app that allows me to set the number of carbs, protein, fats and SO much as my goals so I can measure them when my blood tests come back. Does anyone know of a place to help figure these goals? Thank you, Laurie
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