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sandsurfgirl

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

Everything posted by sandsurfgirl

  1. sandsurfgirl
    Wow that made my day. Thank you so much! The doctor had lots of reasons it may not be Cushings and it was really a comfort to me. He is a Cushings expert and researcher. He teaches other doctors about the disease so if somebody has it, he's the one who's going to find it.
  2. sandsurfgirl
    I went to the endocrinologist tonight about possibly having Cushings disease. There is a good chance I do not have it. I have to run a bunch more tests to be certain, but I'm so happy that there is some hope. I have a tumor on my adrenal gland but he said often people get those and they dont' do anything at all. They just sit there and they get found by accident...
  3. sandsurfgirl
    If it's on your skin it gets in your mouth. Pay attention when you wash your hair how the shampoo and conditioner water run down your face. Gluten sticks to things. It's so hard to get it off of wooden and plastic utensils, and teflon pans. It stays on your skin if it's in your soap and lotions. I love my products and I did not want to get rid of my favorite...
  4. sandsurfgirl
    The damage in your intestines is not consistent all the way along the length of them either. They only take tiny little samples in what... four places? They can miss a damaged part or just get part that isn't as damaged as another spot they didn't sample. For them call blunted villi negative is just plain wrong and it makes me question anything this doctor...
  5. sandsurfgirl
    Time to fire the doctor. Blunted villi is NOT negative. Add him to the long list of docs who are stupid about celiac. You have celiac. Welcome to the club! It's an awesome group of people and you'll feel so much better soon.
  6. sandsurfgirl
    Gemini you are totally right and I get what you are saying about not taking on an emotional diagnosis. I have been reading this little book about how what we say affects our bodies and our health. They talk about studies of 3000 people over age 65 where their opinion of how good their health was predicted who would die in the next 4 years. People's assessments...
  7. sandsurfgirl
    There is light at the end of the tunnel for you! It took me 6 months but I was actually feeling great after 6 months gluten free. I started dancing again. A zillion things were better with my health. The anxiety is gluten induced and you are going through withdrawals. For me, unfortunately I had this other thing underlying that they didn't find. You will...
  8. sandsurfgirl
    I was realizing today that I need to have forgiveness for this. I have to forgive the doctors who misdiagnosed me for years. I have to forgive the GI docs who actually talked me out of testing for celiac 8 years ago and told me there was no was it was celiac. I also have to forgive the friend who dumped me when I got so sick. I realized how much anger...
  9. sandsurfgirl
    I exclusively breastfed both my kids. Neither of them ever had a bottle or formula and I nursed both of them well into their toddler years. I wasn't diagnosed celiac and I had to take lots of antibiotics, allergy meds and asthma meds, etc. There are a lot of meds you can take safely while breastfeeding. If you need the medication to feel better ask what your...
  10. sandsurfgirl
    I had no idea you suffered with this. Being so sick and having doctors look at you like you're crazy does take its toll on your mental state. I hope that you can find a way to get out and do things again. Some friends don't understand why you can't do things with them. Its' hard to explain too. I had colitis around Memorial Day. Ended up in the hospital...
  11. sandsurfgirl
    Oh Caroline I am so sorry. Here I am complaining and you're doing this as a single mom! I tell you we did have a miracle. I committed to praying twice a day no matter what over all my circumstances and very much over my marriage. I thought there was no hope. We were living in separate rooms for a very long time, like nearly 2 years. We were married but lived...
  12. sandsurfgirl
    I do think I have PTSD. I've been saying that. I don't have any addictions. I hate being sick so much, I can't stand to put things in my body that would make me hung over. I do enjoy my wine here and there but that's about it. I've had a bunch of other stuff this past few years. My best friend went off the deep end and started seeing a minor who was a...
  13. sandsurfgirl
    I'm in the process of being diagnosed with Cushings now. They found a tumor on my adrenal gland and my cortisol is high. So after being really sick with celiac and then getting better and getting my life back, I'm once again having lots of symptoms and in bed a lot. I miss doing everything pretty much. I do live on the coast but I can't walk on the beach...
  14. sandsurfgirl
    I think you need to get some hormone panels and make sure it's not something else causing your problems. Your situation is certainly ripe for glutening, but it's been going on awhile now and you don't want to miss something. I was having lingering issues after nearly two years gluten free and it turns out I have an endocrine problem going on.
  15. sandsurfgirl
    I'd like to hear those responses too. I have small children and it takes so much out of me to take care of them.
  16. sandsurfgirl
    I have emotional scars from the days when I was so sick. I've been gluten free almost 2 years. For about a year or more before diagnosis I had trouble breathing nearly every day. I had to focus on breathing. All the medications weren't fixing it. Of course that also led to anxiety and a vicious cycle. For about 6 years before diagnosis I had constant...
  17. sandsurfgirl
    I don't eat things like gluten free pizza and baked goods out because it causes me more stress than enjoyment. So I get how you were feeling! Getting glutened sucks. Actually I went to Outback last year on my birthday. I ordered the gluten free dessert. The waiter assured me it was gluten free, even said he triple checked. It tasted so amazing I couldn...
  18. sandsurfgirl
    My GI doc was just telling me about a thing called "celiac crisis" where gluten induces your body to go wacky, your organs to shut down. He just had a patient in the hospital for an entire month due to celiac crisis. He was telling me to be so careful about gluten, especially since I have adrenal problems. He said be careful about sharing cups with my family...
  19. sandsurfgirl
    I would pity them. To be that cynical is a sad way to live. They sound like they have hearts of stone. I'd rather be me than them, even with celiac.
  20. sandsurfgirl
    Now that I understand. Seeing the extent of the damage makes sense. When doctors doubt the blood tests and tell people to keep eating gluten to get an abnormal endoscopy, that irks me.
  21. sandsurfgirl
    Thanks Marilyn. This is such a difficult time for me. Today was particularly bad because I felt so sick and a very close friend died yesterday unexpectedly. Almost 2 years ago I got diagnosed celiac and was sick for 6 months before I started really feeling good. I had a good run and then about 7 weeks ago got very sick because my hormones were out of whack...
  22. sandsurfgirl
    My doc is prescribing Vitamin D in a high dose for 4 weeks. The nausea has been pretty mild until Sunday. There's a virus going around, so I'm wondering if I got mildly sick. I've been tired and feeling blah, plus the bad nausea. I am testing for Cushings now and there is a tumor on my adrenal gland that may need surgery. So that complicates things too.
  23. sandsurfgirl
    I have been feeling nauseous for awhile. I found out today I have low Vitamin D. I took some D3 and my nausea went away. I haven't found nausea listed as a symptom of low Vitamin D anywhere. My ferritin is on the low end of normal so I'm supplementing with iron too. Just took that. I took the two of them separately in case they bothered my tummy. ...
  24. sandsurfgirl
    First go get more tests. You must have all your vitamins checked. It could be something simple like Vitamin D or iron or whatever. Next, get the gluten out of your bathroom. Shampoo runs down your face in the shower and gets in your mouth. You run your fingers through your hair and then eat and it's on your food. Lotions and soaps stay on your skin and...
  25. sandsurfgirl
    With any child you shouldn't introduce gluten containing foods or any major allergens until they are one year old. Many don't follow that rule, which is sad because there are an awful lot of babies on reflux medicines and whatnot who don't need to be sick. If you have a history of celiac, absolutely wait to introduce gluten! Don't take the chance with...
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