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squirmingitch

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Everything posted by squirmingitch

  1. squirmingitch
    Galaxy, No I didn't notice any difference in the pain with eating, not how much or what I ate. As far as the joint & bone pain beyond my back..... it would move around my body with no rhyme or reason. One day it would be a hand or both hands, that might last1/2 day or 4 or 5 days, meanwhile that might be joined by my right knee. Then everything might...
  2. squirmingitch
    Hey Galaxy, Oh boy! Let's see..... I laid in a closed MRI machine (& I have severe claustrophobia) for 3 solid hours so they could do all 3 parts of my spine in one appointment. The only break I got was when they pulled me out once so they could recalibrate the machine. I was allowed to sit up & that's all. I got to sit there for all of about...
  3. squirmingitch
    I agree!
  4. squirmingitch
    Brain fog, can't remember sh!$, and anger is what happens to me mentally. I have a hair trigger when I get glutened.
  5. squirmingitch
    Use your own special dish/hand towels in the kitchen too. Colander & toaster. NO sharing condiments unless they're squeeze bottles & they make sure not to touch the tip to the bread --- your own sticks of butter for the same reasons. And if the roommates want to mix up a gluten cake or make gravy or anything involving gluten flour you will HAVE to...
  6. squirmingitch
    I looked up my receipts for the Shingles Vaccine. We both got ours late Nov. of 2014. My husband has Medicare & his bill was $236.99; he does not have Part D coverage. I have CHAMPVA & my bill was $72.29. Here is information on Medicare coverage of the shingles vaccine: Open Original Shared Link The shingles shot isn’t covered by O...
  7. squirmingitch
    jmg is right. Yes, what you're going through is normal and yes, for a while you're going to look at that gluten in the kitchen & feel like making your fingers into the sign of the cross as if the gluten is a vampire. EEK! It takes time. Feel free to come on & rant though anytime you need to. We're here for that too.
  8. squirmingitch
    I hope you do when the time comes Raven. From my research the vaccine still goes a log way to preventing a second shingles party. I did the vaccine last year because every single person I know who has had shingles says it's the worst thing they ever had to deal with. I am so very sorry you are having to deal with this. Oh man, when I hear you say you...
  9. squirmingitch
    For the blood test or the dh biopsy you need to eat gluten for 12 weeks. For an endoscopic biopsy, you need to eat gluten for 2 weeks. Yep, eat hearty! You might just be saying goodbye to gluten forever so eat all your favorite things. However, there are gluten-free replacements for everything!
  10. squirmingitch
    It's no wonder the biopsies came back negative for dh. You state yourself that you have pretty much been gluten free since the beginning of the year. You won't get a positive if you've been gluten free. In order to really find out, you would have to eat gluten every day for 12 weeks & THEN get a dh biopsy.
  11. squirmingitch
    BTW, I had so much pain throughout my entire body that I was positive I would be in a wheelchair for life within 6 months time. I had a full spine (that's all 3 sections) MRI. Turns out there wasn't anything that should be causing me all that trouble. I would get frozen shoulders, frozen hips, knees, hands, feet, you name it. NOTHING helped the pain -- didn...
  12. squirmingitch
    BUT and this is another big butt (ha-ha) EVEN for the dh biopsy you have to have been eating gluten for 12 weeks. ALL celiac testing requires you to have been eating gluten if you had gone gluten free prior to testing.
  13. squirmingitch
    Sometimes I am like a terrier. LOL! Razzle, aren't you on Dapsone? I see you were or are and the last I can find is that you were up to 100mg per day. I have read you can go up to 300mg. per day. Perhaps they should up your dosage? We had one gal on here who had been dx'd with dh 20 years prior & had been taking Dapsone for 20 years while continuing...
  14. squirmingitch
    Allrighty then, let's do a little detective work here. Firstly, if you dig into the references listed for the link cyclinglady posted - this one: https://medlineplus.gov/ency/article/001480.htm You will find they have all been picked up from earlier articles/publishings of studies. For example, let's follow the trail of the second reference listed...
  15. squirmingitch
    I've had dh on my face. DH can present anywhere on the entire body. They're wrong. If you have DH, you are celiac. I have to agree with Ravenwoodglass in that they must mean you can have dh without having the GI issues. You've been gluten-free for how long now? Villi does heal so an endoscopy is not going to show damage after you've gone gluten...
  16. squirmingitch
    Over 50% of diagnosed celiacs did NOT present with any GI symptoms. They had plenty of other symptoms but not GI symptoms. 99% of the doctors out there think you have to be dying with the big "D" continuously and in massive pain AND be skinny as a toothpick. This is far from the case. Celiacs come in all sizes including toothpick & gargantuan, all ages...
  17. squirmingitch
  18. squirmingitch
    Good for you! I hope it doesn't take 3 months though. any way you can speed that up? Call for cancellations???? Go to another derm??? You need to bring a print out of how the dh biopsy is done correctly. Not ON a lesion but on clear skin ADJACENT to an active lesion. Open Original Shared Link Open Original Shared Link
  19. squirmingitch
    I'm surprised one or more hasn't told you it was bed bugs or scabies or psoriasis or, or, or.... or it's all in your head, or you scratch & make the rash happen because of scratching. You need a derm who is experienced in dh & doing the dh biopsy. Uh, the one who said it couldn't possibly be dh b/c it wasn't on the backs of your elbows or your...
  20. squirmingitch
    Shortly after dx I went to a local Chinese place. The owner was there. I sat down & talked with her at great length explaining the food issue & cross contamination. She said there was only 1 thing she would allow me to eat there & that was steamed chicken & veggies. No sprouts were to be in the recipe, not b/c she thought the sprouts would...
  21. squirmingitch
    Yep, my hubby & I are a pair too. I suspect it's way more common than we know. Remember that 85% of celiacs don't know they have it. Once one does find out they are celiac then we know much more about the symptoms & realize that the big "D" is not the only symptom of celiac disease. Most media articles emphasize only the "D" part of it. Once I was...
  22. squirmingitch
    Great to hear you've turned the corner!!!
  23. squirmingitch
    Tanya you are clearly suffering but you told us nothing really. Have you been dx'd with celiac disease? Or have you been dx'd with dermatitis herpetiformis? If so, are you eating gluten free? For how long have you been eating gluten free?
  24. squirmingitch
    If you are eating gluten free all testing will come up negative. That's blood draw, endoscopic biopsy AND dh biopsy.
  25. squirmingitch
    I think this is the link that wasn't working. Scroll down to pg 93 (you don't have to scroll through 93 pages to get there as it doesn't begin at page 1) to where it says "Cross Contamination". For sake of ease, I'm going to copy & paste what it says: Open Original Shared Link CROSS-CONTAMINATION Cross-contamination is a challenge...
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