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Roda

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

Everything posted by Roda

  1. Roda
    Given all the people diagnosed in your family, celiac is most consistent. However, since you seem to be eating a regular diet, correct me if I'm wrong, you could get the blood tests again if your curious. I personally don't see the need for another test since you were diagnosed two years ago. I would just go gluten free for good.
  2. Roda
    Both my kids have quite a few cavities. The youngest son's 6 year molar came in with a cavity in it. He also has weak and defects in his enamel in his two permanant teeth he has. My oldest son had his 6 year molars sealed but developed a cavity in one of them too. I always have had great teeth. I got my first cavity, now that I think about it, after...
  3. Roda
    My kid's ped refused to test them after I was diagnosed too. I was livid! We were seeing an allergist/immunologist(at my insistance and good thing too) and they had no problem ordering the tests for me. They were both negative. Fast forward two years and my youngest son was retested and it was positive. Looking back I think my youngest has been celiac...
  4. Roda
    Make sure you have your ferritin checked too!
  5. Roda
    That probably sounds the most reasonable. You will have to educate them on how to prevent CC so you don't get sick too.
  6. Roda
    I don't really know if it is DH, but I don't think so. However it is definately gluten related. It seems to only surface when I get glutened and then goes away with the rest of the symptoms.
  7. Roda
    My glutening symptoms have changed and gotten worse. I used to think the constipation was bad. I find myself thinking that when in a full on glutening I wish for constipation. Symptoms prediagnosis: iron deficiency/low ferritin, tachycardia, fatigue,irritability, constipation and reflux. Symptoms after diagnosis: reflux, bloating/gas, constipation...
  8. Roda
    Just curious were you covered when you recieved your diagnosis? Did you have a lapse in coverage. I have changed jobs several times and opted to either buy short term coverage(until I was eligible at my next job) or got COBRA. As long as there wasn't a lapse in coverage the insurance company couldn't deny for preexisting(before celiac diagnosis). Of course...
  9. Roda
    Wow, mushroom summed it up pretty good. I percieved myself as fine until one day in Feb. 2006(I thought I was fine for 33 years). I was suffering from severe tachycardia and ended up in in the ED. I was given meds to get my heart rate down. Long story short this was my first symptoms...so not GI related. Then the fatigue set in. Next the horrible reflux...
  10. Roda
    A diagnosis of DH is a diagnosis of Celiac. Your derm, family doctor, and GI doc are giving you very bad advice. There are discussions on this board about people with DH are still celiac even though there may not be gut damage. I can't comment on the DH and dapsone since I fortunately do not suffer from it. It is autoimmune and the only way treat it is...
  11. Roda
    If and when you are ready to try solids Pocono Cream of Buckwheat might be worth trying. I love it and it has directions on how to mix it for infants. I believe my youngest son's severe reflux and other issues were related to gluten when he was a baby. However I had no idea. He was also exclusively breast fed. He reacted to oatmeal and rice cereal...
  12. Roda
    I've had the best luck with Nurse Practictioners. There was one at our peds office who I loved dearly. She was so down to earth and very open to suggestions. She left and I was tempted to follow her to her new office, but it wasn't feasable for me to do so. Luckily my peds office hired a new NP and she is great too. We also see a NP at our allergy office...
  13. Roda
    I made crepes and made a turkey, ham and swiss cheese sandwich wrap. I also had some cream cheese stuffed celery.
  14. Roda
    I don't worry much about goitrogenic effects from foods. I've been on thyroid replacement since 2000. My dose is getting up there. I'm currently taking 112 mcg levothyroxine(T4) and 25 mcg of liothyronine(T3) a day. I am careful about taking my vitamin/supplements several hours after/before my thyroid meds and taking my thyroid meds on an empty stomach...
  15. Roda
    janetw--The only person to take the low ferritin serious was my endocrinologist. She had prescribed me a RX of Cromagen and I could not tolerate it. It gave me horrible reflux, which I had to start with. This was all before I knew I had celiac. It was another 1.5 years before I was diagnosed. carecare--I do believe it was the low ferritin causing...
  16. Roda
    We get the sundaes, shakes and M & M mcflurries all the time.
  17. Roda
    You really need to have a full thyroid panel done. Going by just the TSH can miss early or subclinical hypothyroidism. My endocrinologist goes more by my symptoms and my free T4 and free T3. I don't convert the T4 meds well. I had a normal free T4 and TSH but has a low T3 when I presented in 2007 to my endocrinologist. I was symptomatic and I was given...
  18. Roda
    I love millet!
  19. Roda
    I was very symptomatic. Symptoms I couln't find a reason to were all pointing to the low ferritin in hindsite. I truely believe that my two bad episodes of tachycardia were related. I ended up in the ED two times with a heart rate over 180! Saw a cardiologist for a few months but got released when nothing could be found. I also had extreme fatique, shortness...
  20. Roda
    My ferritin level was 4 when it was finally checked! I had completely normal hemoglobin/hematocrit(H & H) by the time it was tested but my other iron tests were wonky. Noone ever once said I needed IV iron. It sure would have made a big difference. I was six months gluten free before I was able to tolerate oral iron. I was taking two Slow FE brand...
  21. Roda
    Definately ask for the blood tests for celiac. You probably would benefit from a good probiotic to replace the good bacteria that the antibiotics killed off.
  22. Roda
    Your daughter sounds like she is miserable and she deserves to feel well. IMHO her symptoms alone, despite the negative celiac testing, warrents a upper GI scope/biopsy. It is possible to be positive on biopsy and negative on blood work. Once you exhaust all the testing you are going to do, try her gluten free for a good three months. Gluten very much...
  23. Roda
    I wanted the biopsy because I thought that is what I should do after positive blood work(biopsy was positive). I also wanted to rule out any other issues too. My youngest son had positive blood work, but we did not do a biopsy on him. I am considering gene testing to get his "official diagnosis." My oldest son has had negative blood work for the...
  24. Roda
    Isn't that the truth?! However, I do have decent insurance so that's good. Hopefully they don't jack my rates so high that I can't afford it any more. I'm happy with my private insurance and don't want the government plan if it comes to pass.
  25. Roda
    They make it very difficult to do. I have a medical flexible spending account and I looked into this. I was told it was up to the employers plan if they will let you do it. My plan wouldn't allow me. Also do not have enough out of pocket(the percentage of the AGI) to itemize on my taxes. So for a lot of us we are SOL.
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