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Electra

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Electra

  1. Electra
    Right before going gluten free I had terrible bouts of starvation. I mean I would eat an entire box of macaroni and cheese and then (I kid you not) 15 minutes later I was having massive hunger pains!! It was horrible. I am also very exhausted. I hear that dairy intolerances are common with celiac disease. I'm not sure about any of the other symptoms, but...
  2. Electra
    If you have Celiac and it seems like you do, then you may be able to eat gluten for years before you become mal nourished. Unless you eat massive amounts of it then it may not cause any noticeable effects for you, but every time you eat it you are putting yourself at risk for certain cancers and diseases that Celiacs are at a higher risk for. The longer a...
  3. Electra
    I can understand the not wanting to eat. I tried and tried to get my 2 yr. old to eat gluten because she was going to the skin specialist this week and low and behold she woldn't eat enough to make her break out. I realized that her biggest breakouts have come when we have had to buy Iodized salt because the store was out of regular, so I'm going to go buy...
  4. Electra
    Wow It appears that I am wrong on this one lol! Sorry about that. I didn't mean to give you false information. I started looking up eczema pictures just to be sure and there are different kinds of eczema, and some of them are blistery and some are even open scabs (that look just like a lot of the DH pictures) I guess it's possible that you do have exzema...
  5. Electra
    Oh I see now. You were probably clear enough I just have brain fog half the time still lol!! I think it's great that you found a doctor that will diagnose you with DH even though you tested negative. I would say the only way to be sure now is to go gluten free and see if you respond. If you clear up then you probably have your answer. Good Luck!! Try to...
  6. Electra
    I had eczema when I was a child and then it came back on and off as an adult and two of my children have eczema really badly. One of them has it so badley he itches his skin off. My eczema nor my two sons eczema look anything like my daughters DH. She only gets white scars too, but I would get a second opinion if I were you. Man eczama is aparantly like depression...
  7. Electra
    I'm a little confused (man I thought that was suppose to clear up after going gluten free lol). You say you were diagnosed 58 yrs ago, but all your test came back negative. How did you get diagnosed with no positive tests? They probably didn't have any tests for it back then, but I'm wondering why your current dr's would think that you would test positive...
  8. Electra
    Hey if the gene tests comes back negative then you know you don't have it right? You can not get Celiac if you do not have the gene can you?
  9. Electra
    Maybe that's a good sign that I still have damage and that they may actually find something that tests positive. It would be really great to have it confirmed on a biopsy!!
  10. Electra
    Well I don't really care about a diagnosis for clinical research purposes lol!! I highly doubt they will EVER have a clinical trial in my state let alone my area !! Thanks everyone for all the support. You guys are great!!
  11. Electra
    Good news, good news, good news!! The doctor diagnosed me without the biopsy. He said the fact that I had been B12 deficient, had problems with my iron being low many times before, had a positive Celiac panel, and the fact that the diet is working for me were enough for a diagnosis. He said if he would have seen me before the Celiac panel then he probably...
  12. Electra
    Because there are a number of benefits to having the diagnosis. That's my opinion, but it's important to me to know for sure. If they think it's something else then I don't want to assume it's Celiac until we know for sure!!
  13. Electra
  14. Electra
    Well If I understand it correctly blood tests alone do not give you a diagnosis, so they may think that I don't have it if the biopsy doesn't come back positive. I'm sure I'm just worrying way too much over it. I can't wait to get there so that I can at least get it over with and move onto the next step !!
  15. Electra
    Yah that's what I'm afraid of UG!! I make enough decisions already so it would be nice if doctors could just take our word for it and call it good LOL!!
  16. Electra
    I got positive blood tests for Celiac about a month ago and I was so bad at that point that my husband was ready to admit me to a psych ward (NO JOKE)!! With encourageing words from this board, I decided I had Celiac, and that I could not subject my kids to the "GLUTENED" me any longer. It was just to hard on them. I went gluten free hoping that the GI...
  17. Electra
    IN MY OPINION and my opinion only I don't really think they know what the odds are that Celiac will be passed onto your children. I've read literature that says first degree reletives of someone who has Celiac disease have anywhere from 5-30% chance of contracting the disease, but someone here says it's 50% (as far as inheriting the gene) so I'm unsure what...
  18. Electra
    The numbness and painful statement definitely makes sense to me Geoff. I had it almost constantly until 1-2 weeks into my gluten free phase. Mine leg was so cold all the time and it burned, tingled, and was very painful. I had an entire week where my shin was aching so badly I could barely use my leg. Odly enough it was only from the knee down and it only...
  19. Electra
    Thanks so much for your well wishes. We actually didn't end up doing the skin biopsy. The specialist seemed very good and seemed like she believed me (of course she had my daughter pediatrician records with the rash well documented on them). She actually gave me the option and said if I wanted her to have the biopsy I could, but she said she thought we would...
  20. Electra
    I've just recently realized that Iodized salt may be the cause of my daughters DH breakouts. She is still eating gluten and her stools are bad but I've been unsuccessful in getting her to break out like she has before. I posted about getting her to break out the other day and someone suggested I put Iodine on her skin, so I did that and it didn't work, so...
  21. Electra
    Wow that is a hard one. I think I would explain to them that "although you were very happy about the effort they went through last time" that you've recently been getting sick off from other foods and until you figure out if you are also having a reaction to soy, milk, or nuts, corn or something else then you would rather not eat anything unless you make...
  22. Electra
    I've been wondering the same thing, but have been way too busy with appointments and other research that I haven't had time to even check it out on the net yet. I sure hope there is someone on the board that can lend some insight here!! I have an appointment with my GI specialist tomorrow and if there is nothing else that would cause those elevations then...
  23. Electra
    My daughter is seeing the dermatologist today and I did succeed in making her break out in one tiny little spot. She also has a small one on her face that she's had for a week or so. I mobbed her hair down with conditioners with wheat in them this morning hoping to get an even better reaction. I also rinsed it all out in the tub and let her play in the water...
  24. Electra
    Wow that is exactly what I was trying to say in my post when I talked about some people being scared to death of other peoples views. You are definitely much better at articulating your point of view then I am at articulating mine. That just proves that typing doesn't always come across as you want it to. I tried and tried to word it correctly too, but it...
  25. Electra
    Thank you so very much Michelle. I knew the biopsy was suppose to be done from beside the legion and not on it, but if you didn't just tell me what your dermatologist did then I probably would not have even mentioned it to them if they started doing it wrong (just because I would assume that they must know what they are doing and that I may have misread the...
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