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Everything posted by starsweet

  1. gfp, how long would I have to eat gluten for the tests to work? So even for the skin biopsy I would have to be eating it? By the way, my first "attempt" has not been gluten light. Trust me, I know all about licking envelopes, gum, hidden sources, etc. I have been gluten free for nearly two years minus the occasional, I mean REAL occasional like 2-4 times a year cheating. Like I said, my doc never mentioned anything about celiac and she said I can try eating gluten and my other allergens once in a while just to see if I get a reaction. BUT, I didn't know that that difference between WHEAT intolerance and gluten intolerance that you said. Also, even though my IgG test said eggs, soy, milk, WHEAT, and peanuts, I am also avoiding gluten. The only others tested were shrimp, corn, and tomatoes, and all were negative. So anyway my main point was that I have been allergen free for some time now and still feel crappy. And I still don't see a positive side, because I don't eat anything, I never go out (I'm a COLLEGE student), and worse, I still feel and look like crap! My hair is still falling and hasn't grown back the way I thought it would after cutting out all these allergens. Gosh just writing this is making me cry. And I haven't taken 5-HTP yet. My doc JUST told me to start taking it based on my urine test. I just asked that question about 5-HTP/celiac because I see on the bottle it says NOT to take it if you are celiac, and I'm not sure what would happen if I do take it and if I'm celiac. I do like Indian cooking but not 24/7/365.. same for Asian and Thai cooking. The main issue I see with all this is a lack of social life or a life for that matter. I don't like being abnormal. I HAVE experienced life gluten-free, SOY FREE, EGG FREE, etc... (and all the other hidden sources that go along with those foods) and it sucks. I want to die, seriously. I mean I can see this whole thing being positive IF I felt 100% better and my skin totally cleared up and I could shave my legs again and wear skirts again and if my scalp hair grew back and I had energy again. But it really sucks when you make so many sacrifices and you're still not how you used to be when you were healthy. Then you feel like, what the heck am I doing all this for?! The remedy is almost worse than the disease.
  2. Well, I'd like to have the test because there is a huge difference between gluten intolerance (which can be temporary) and celiac. With gluten intolerance, I would be able eat it once in a while (not too often of course) and not feel too bad. With celiac, any gluten is a no-no. So yeah, I would really like to know for sure! I have been taking both of the supplements you mentioned and do feel better but not totally. Also my organic acids test indicated an adenosylcobalamin deficiency (not methylcobalamin, which I have been taking because that's what I thought I needed) so I'm going to try the adenosylB12 and see how that works. For magnesium I am bathing in Epsom salts and it helps a lot. Which type of Mg are you using? One more thing, with undiagnosed people who are celiac who still eat gluten, do have a pronounced weight loss? Thanks RiceGuy you've been very helpful.
  3. One more thing, is the celiac panel from Quest Diagnostics an accurate test? http://www.questdiagnostics.com/hcp/topics....html?gastroent
  4. I realize all of you are trying to help and I really appreciate that. The thing, I have been gluten free for almost 2 years (aside from the occasional cheating which is very minimal, like twice a year - remember, I haven't been diagnosed yet, nor has any doctor ever mentioned DH/celiac to me, and my doctor recently said to try eating some of my allergens again "just to see") and I STILL feel crappy - I have no energy. I also don't eat any of the other allergens I mentioned. I have experienced a huge improvement from before with my skin, BUT I am not 100 or even 95% better, energy-wise or mentally. Which is why I don't think it's celiac or maybe I am hoping it's not because this diet is horrendous. I am in grad school and literally have no social life. It's suffocating. I already make my own stuff at home but I dislike having to be so nonspontaneous all the time and be so reclusive. If I do end up having it though, I may move to NY after I graduate since I hear it is so celiac friendly. So in order to tell for sure, should I do a skin biopsy or intestinal? Sorry I don't completely understand what I should do next (since I am already eating gluten-free). I am hoping to God these are all temporary intolerances due to the bad bacteria in my gut. One more thing - does anyone know anything about 5-HTP and celiac? My doc prescribed 5-HTP for me as one of my supplements since I have a lack of neurotransmitters but when I read the warning labels for 5-HTP it says, "Do not take if you have IBS, Crohn's, Celiac..."
  5. I'd like to find out for sure if I have it or not. So does that mean I have to eat gluten for 3-4 months first, then get a skin biopsy? Do I really have to eat it that long? No I really can't make gluten free pizza, because I have other intolerances as well and most of the gluten-free flour has other stuff like milk in it or it always has something I can't eat. I hate this. I don't drink beer anyway so that's not an issue.
  6. I'm not sure though because I eat a ton of iodine since I eat a ton of seafood and haven't noticed any increase in DH. I only seem to have a major breakout if I eat any of those foods I mentioned for a longer period of time. Also is DH sun-sensitive? Can I do my own simple test for now by applying iodine and how would I do it? Thanks for your reply.
  7. Ok I'm going to make my history short... my skin would have a major breakout every few months or so starting back in 2001. Actually the first time I broke out, it was really small and the doctor (who may have been incompetent) said it was shingles which is weird since I was only 20 at the time and in college. So finally in 2005 or so I went to a integrative doctor who told me to immediately stop eating gluten and casein. I did and felt a bit better. I took an IgG blood test which said I had increased levels of IgG to eggs, milk, soy, wheat, and peanuts (roughly in that order... the highest was to eggs and lowest to peanuts). So I stopped eating all the stuff (including gluten, not just wheat) and my skin has been a ton better. I still have a few lesions but nothing like the major breakouts I used to have (and actually I don't experience any more major breakouts). I was reading about celiac and DH and my lesions look a lot like DH which really freaks me out. The only thing is they are not exactly symmetric and I don't get them in the typical places it says, I get it mostly on the arms, legs, sides/hips, and waist area. And when they heal they aren't purplish, more like brown but that may be due to my ethnicity (I'm from India). I have no GI symptoms and never have, even when I used to eat everything. I'm scared to death I have DH/celiac and the only way I'm surviving now mentally is to keep telling myself all this is not permanent, just some temporary intolerances because I can't bear to think that can't have pizza ever again. I have not had any tests done yet except a urine test for organic acids (since my doc initially thought I had candida yeast) which indicated no yeast but I do have high levels of some bad bacteria (poor gut flora). The test also said I had very low levels of B vitamins, low CoQ10, low alpha lipoic acid, and low neurotransmitters, basically I was low in nearly everything needed to produce energy (which makes sense since I still have no energy, even after my new diet-doctor said I have very poor carbohydrate metabolism and I am a poor methylator). Anyway, if I wanted to get a skin biopsy, can someone explain to me what I should so that the doctor does it properly? Does it hurt? Do I also have to have an intestinal biopsy? My doc gave me an order for a celiac panel through blood work, but is that the proper way to go or should I get a skin biopsy of the lesion first? I am not currently eating gluten except for a slice of pizza I had two weeks ago (ok I cheated). Also can someone explain the iodine thing? If I put topical iodine on my skin then it should make my lesions worse, if i do have DH and therefore celiac? Do you put it on the lesion? Will this work if I have been gluten free for a while (other than that pizza)? Also is DH sensitive to sunlight? If it always is, then I shouldn't have it because sun doesn't bother me at all. Does my skin thing even sound like DH at all? Oh if I do get a blister when it breaks the fluid looks like honey but I don't know if that matters or not since maybe a lot of types of eczema look like they have honeyed pus? I'm just really hoping these are all temporary intolerances due to the bad bacteria in my gut. I am taking probiotics and have improved, but I still experienced tingling skin when I had that one slice of pizza. Sorry so long... I really need some help. Oh yeah, one more thing, I have had hair loss since I was 15 (starting around 1996 or so) and am losing a lot less now but is not growing back as I thought it would.
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