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icelandgirl

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Everything posted by icelandgirl

  1. icelandgirl
    Hi Booiegirl, I want to tell you not to worry, but I know that I myself would as I am a worrier. That being said, it most likely isn't lymphoma or refractory, both being so rare. I'm so glad that your Dr is being thorough and checking everything out. Hopefully you will get answers very soon as waiting often seems to be the hardest part. Please...
  2. icelandgirl
    Hi again and more ((((hugs))))! Do keep asking! I get it. The first 3-4 months I saw significant improvement and then things went a little downhill for me. I'm not completely sure why. I had a lot of anxiety as well. At one point I was only eating 6 foods just to try to figure out what might be bothering me. The good news is that 3 years later...
  3. icelandgirl
    Hi Fbmb and (((hugs)))! I get it...totally. I remember doing that every day, looking at the poop to see if it was perfect! You are definitely still healing. It takes much longer for some of us than Drs lead us to believe. I still have off days after 3+ years. I'm having one today and have no idea why. I don't have perfect poops daily and...
  4. icelandgirl
    Hi Galaxy! So good to hear from you! The waiting game is hard, but you should have the results soon. Please do let us know when you get them. Hugs!
  5. icelandgirl
    Hi DrMommy, I'm sorry that you are going through this...it sounds rough. Do you know if a complete thyroid panel was run? I ask because many Drs will only run TSH or TSH and free T4. Unfortunately those don't tell the whole story of your thyroid. Both can be normal, but if free T3 is low, you can feel exhausted. If you have elevated TPOAB or...
  6. icelandgirl
    I agree...I hate when there's no resolution or someone just disappears. I always wonder. I'm still around here for sure. Not quite as much as 3 years ago, but I guess that's a sign of feeling better? I am so sorry you had kidney stones as well! They are terrible. I passed 7 in one go at the ER. My urologist believes that it's celiac malabsorption...
  7. icelandgirl
    Hi Victoria! Wow...so interesting to read through this almost 3 years later. It has helped me to see how far I've come. ? I never got a good answer on this issue. I did have more than 1 pelvic ultrasound and the only thing that ever came up was ovarian cysts in the process of resolving. At one point I got a referral to a urologist, but the symptoms...
  8. icelandgirl
    Hi Cristiana! I'm so sorry that you are worried. ((((Hugs)))). Your Dr should be checking your antibodies yearly. Here is some information on follow up testing that should happen. Open Original Shared Link Do ask for the antibody testing to be done at your visit. Have you tried the warm saltwater rinse? I do think doing that a few...
  9. icelandgirl
    Exactly my thought! ?
  10. icelandgirl
    Hi George! I'm so glad that you kept advocating for yourself and that you have an answer! I hope that you start to feel better really soon! Please keep us posted. ?
  11. icelandgirl
    Hi Cristiana! Those hurt...I'm so sorry that you're suffering with one. I haven't had one in quite some time, but I used to use warm saltwater rinses to help. I definitely think after 3 weeks it's time to have it looked at. I hope you get some answers! Hugs!
  12. icelandgirl
    Hi Pavlov and welcome! Hormonal changes like that are not fun at all! Have you had your thyroid fully checked recently? The thyroid is the master hormone of your body, if it's not working optimally, things will suffer. A full thyroid blood panel would include TSH, Free T4, Free T3, TPOAB and TgAb. The last 2 are antibody tests. Most people seem...
  13. icelandgirl
    Hi glutenkid, Yes, I was very discouraged for a while. I heard about people feeling better as soon as they went gluten free and couldn't understand why that didn't happen to me. For some of us it takes much longer than others to heal. In the first year after diagnosis I had a lot of ups and downs. It was really rough at times. This board was...
  14. icelandgirl
    Yes! Call University of Chicago! Switching you from one medication that's not working to another and back again isn't helping you. It's definitely time to look at something else. I'm so sorry that you're not feeling better.
  15. icelandgirl
    That makes sense...I cried with relief when I got my diagnosis just because there was finally an answer. Please know that you are not weak or crazy. Keep pushing for testing. It could still be celiac, it could be Crohns. Push your Dr's to figure this out. Best wishes.
  16. icelandgirl
    Hi Galaxy, This does not mean that you don't have celiac. You need a full panel done. I only test positive on the DGP IgA test. You still need tTG IgG, DGP IgA, DGP IgG and EMA. Ask your Dr to order the rest? Do keep eating gluten until all testing is complete and definitely keep advocating for yourself! You deserve to feel good!! ((((((Hugs))...
  17. icelandgirl
    I wish! I got the flu this winter as well as a couple of colds. I do have 3 lids, the youngest in preschool, so there's always a lot of germs around. Lol
  18. icelandgirl
    Hey again ? It's a start, but I so wish they'd done the whole panel. Some of us, myself included, test negative to the TTG-IgA. I was positive on the DGP only. I wonder if your insurance will only cover those 2? Regardless, get them done as soon as you can! Do you have a walk in lab where you live? If so, go tomorrow. Then you'll be a step...
  19. icelandgirl
    I totally agree...this board is awesome! The people on here have been there for me through everything and it has helped so much! I don't think antihistamines would affect the test at all. I take an antihistamine daily as well for horrendous allergies.
  20. icelandgirl
    It is gluten free...I eat it regularly and have had no issues and it tastes yummy. ?
  21. icelandgirl
    Hi Galaxy! I'm so glad that you did that and that your Dr was helpful! Keep doing that for yourself...if nothing else, it helps you mentally knowing you are doing something!? Also, don't let anyone make you feel like you're crazy, you are not! You are the only person who knows how you feel physically and emotionally. You are definitely in a rough...
  22. icelandgirl
    I agree with everything cyclinglady has suggested! Having diarrhea every day is sheer misery. I hope that he doesn't make you wait 6 weeks. If these medications aren't helping, go back in and see if he's willing to schedule it earlier or do other testing....I'm not sure what. I really do feel for you. Leading up to my celiac diagnosis I had D 10-20 times...
  23. icelandgirl
    Hi George! It is an old topic, but it's mine so I figured I'd chime in. If nothing showed on CT or MRI, I'm not sure. I do get this when I'm glutened and it's very uncomfortable. How long has it been since you had a complete celiac panel done? If it isn't very recent, I think it's time for one. Particularly with such severe D. Did you make...
  24. icelandgirl
    Hi Galaxy, GI offices tend to be busy and sometimes have long wait times. I would not wait to hear from them, I'd call and say, "I've been referred to your office by Dr X and would like to get an appointment scheduled." Once you get the appointment, it could be weeks out, sometimes months (hoping that's not the case!). I've been at a point of...
  25. icelandgirl
    Hi Galaxy and welcome! Although my worst symptom at diagnosis was D, I can completely identify with the painful gas and bloating. I remember being so painfully bloated that it felt like there was a giant lead balloon inside of me. I was so uncomfortable all the time. I can still remember getting to the point of only wearing sweats because I couldn...
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