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beth01

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

Everything posted by beth01

  1. beth01
    lol. I want to say penis over and over again but I won't.
  2. beth01
    I am deathly afraid of restaurants right now but if I was going to go I would do some research. Do they offer gluten free items? Have other's with celiac been there and not had problems with cross contamination? Ask if they use a premixed seasoning to flavor their food. Call ahead if you can. Explain your situation and ask them if they feel they...
  3. beth01
    Just a thought but many celiacs have problems with their tooth enamel. You might be a "silent" case with none of the big tip offs. And it is hereditary so it had to come from some where.
  4. beth01
    Does anyone else find it funny that there is an Ad by google for frosted mini wheats that is constantly on this site?
  5. beth01
    Could it be you are getting gluten from cross-contamination? Did you clean your kitchen well? Do you have people in your house that are still on the gluten, making it in your home? It's every where, can be in toothpaste, hair product, makeup, lip balms, pet foods, the most innocuous places. Your significant other could also be getting you if they eat gluten...
  6. beth01
    You are quoting Mayo reference ranges. where did you have your testing done? I am a Mayo patient and <4 for the tTg IgA is considered negative with their testing, but your lab could be using different methodologies and instrumentation. Just curious.
  7. beth01
    If you are still seeing "it" ( have to call "it" that since still not sure what "it" is lol), I would suggest asking for a potty hat from your doctor's nurse so you can catch "it" and take "it" to them for examination. If "it" only comes out occasionally, it might be a good idea. That way they can examine "it". I know it sucks having to dig through your...
  8. beth01
    Welcome to the Celiac club! Are they doing other thyroid testing since it seems you have an underlying thyroid disorder? Thyroiditis seems to cause an elevated thyroglobulin test as can Grave's disease and Hashimoto's. My doc usually wants me in the 1-2 range for my TSH but right now it's hovering around 5. Since I am not having symptoms of a hypo...
  9. beth01
    Thank you. It's mom mother's testing. I told her to call them and ask if her results are valid if she hasn't had a total IgA and IgG drawn lately to check for deficiency which could cause a false negative.
  10. beth01
    I get everything in writing if I don't like what I hear from doctors. I started this the last few weeks and I have seen 5 doctors in that time. Every time I hear something from a doctor I really don't like( we don't think this fits, you don't need that out, blah, blah, blah). You know how many signed statements I have from disagreeing doctors? Not a one...
  11. beth01
    I understand your frustrations. I have multiple family members that have so many signs of Celiac and they won't get tested. A few of them have, but not the one's with the majority of the problems. All I hear is " I don't have a lot of stomach problems, I can't have celiac". I can't make them get tested. I won't even say " I told you so" if they happen...
  12. beth01

    ARCHIVED Disability

    beth01 replied to beth01's topic in Coping with Celiac Disease

    Nope no hearing loss.
  13. beth01
    I know that Celiac messes with our systems so bad and can cause emotional stress. That being said, I need some advise from parents that have celiac children. My 11 year was diagnosed with Celiac about a month ago. On the advise of her doctor we had her go gluten free from the get go, wish I would have waited until we saw the Ped's GI but I can't take...
  14. beth01
    I think that is the route I am going to go, genetic testing. My daughter hasn't seen her Ped's GI yet, there is one that comes to our hospital from Mayo in Rochester, so I will talk with him and see what he suggests. Have to wait until June 18th for that. Thank you all for your input.
  15. beth01
    My thoughts exactly.
  16. beth01

    ARCHIVED Disability

    beth01 replied to beth01's topic in Coping with Celiac Disease

    I am applying for SSI disability. I am not sure about your story but I have been sick my whole life, I am 37 now. I have osteoarthritis in my spine, Grave's disease, severe weight loss >160 pounds and still dropping ( I weigh 150), I had chronic migraines ( 3-4 a week but haven't had any now in the last two months), severe vitamin deficiencies, and...
  17. beth01
    What kind of tests are they doing on her stool? She could be having stool cultures to check for infections ( stool pathogens) or they could look for viruses ( Rotavirus), or they could also check a stool leukocytes which would be present in infection and inflammation or C-diff another bacteria that causes the big D. People might not respond if you don't...
  18. beth01
    RMJ- me too! It wouldn't bother me in the least to not get a migraine for nine months. I am glad you are doing better!
  19. beth01
    I have a family member that just had testing done. She had just the tTg IgA and tTg IgG, they were both 0.4. She didn't have the IgA total, is that normal to do? I know they normally run the tTg IgA and IgA together just in case of IgA deficiency. Is it safe for her doctor to tell her she is negative for Celiac? I just want to make sure, she also has...
  20. beth01
    Across - you do not need to apologize, there is no "ignorance" for you right now. It's more like " uninformed". I was just diagnosed two months ago, I know exactly what you are going through. Let's see if I get this right. First came the elation. OH MY GOD, I AM NOT INSANE. No it's not all in your head, your doctors finally got a diagnosis right...
  21. beth01
    It's hard being a celiac, especially when there is food involved ( family get togethers, bars, restaurants, parties). I only feel a 100% safe at home, and even here I have managed to gluten myself. I think I said the other day, " I would rather be agoraphobic rather than celiac". lol
  22. beth01
    1. It's nice to have a base line test so they can compare how your treatment is working. 2. To get a official diagnosis for Celiac. Is your doctor stating in your medical charts that you have a diagnosis for Celiac, or is he stating things like " probable"? You might have problems with follow up care if you aren't confirmed ( insurance not paying for follow...
  23. beth01
    I think you may have had your "ah ha" moment already. Many labs do different testing methodologies. Some are qualitative ( plus/minus - positive/negative) and some quantitative ( where you actually get a number). When we tested for RF we had an initial screening test that was qualitative, and then if we got a positive result it required the quantitative...
  24. beth01
    Celiac is a disease from hell that pretty much equates to people that don't have it eating rat poison. That is what gluten does to a celiac. That's my story and I'm sticking to it! All joking aside, it really depends who you are talking to. Are they going to understand the constant medical terminology associated with Celiac and all your other related...
  25. beth01

    ARCHIVED Disability

    beth01 posted a topic in Coping with Celiac Disease

    I know there are posts out there about this subject, but they all seem old. Has anyone had any luck filing for disability benefits? I am getting a copy of my eleventeen gazillion page medical report and trying to figure out which information is going to be the most relevant or if I should just give it all to them. Do I need my doctor involved or is...
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