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cmc811

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Everything posted by cmc811

  1. cmc811
    I'm just wondering if it would be worth having it redone at the 1st lab and see how the value compares. When I asked the GI office the nurse told me it was comparing apples to oranges because labs have different values. Why though? The units of measurement are the same so why is 4 the limit for some and almost 6 for others? So frustrating!
  2. cmc811
    Does anyone know much about optimal ranges for TSH in a 5 yr old? I know there is a lot of controversy in terms of adult TSH values and I'm finding all kinds of ranges on the internet. My son had TSH checked at 22 months and it was 2.91. Range for that lab was 0.40-4.00. TSH done earlier this week at age 5.75 years was 4.7. Range was listed as 0.70-...
  3. cmc811
    So finally heard back from the Doctor and no, it wasn't a mistake. He uses EMA and TTG.
  4. cmc811
    Still no word on getting the DGP added, which is irritating since I left the message on Tuesday.....grrr! Anyway, CRP and Lipase were normal but still waiting on TSH and EMA and possibly DGP if it was added but that is doubtful. I got the CRP and Lipase results through a mychart online access but typically abnormal results aren't posted there until after...
  5. cmc811
    I know this test is hands-on and not done by a machine so it does take longer, but how long? I am really anxious for results and trying to decide how long I should wait before nagging the office
  6. cmc811
    Every one of your tests was positive. Get a new GI or like Lisa said make sure your PCP has these results.
  7. cmc811
    I think overall, we're doing well....my 5 yr old gets his daily gluten via prepackaged crackers, granola bars, etc that I send to school with him. The 3 yr old is a little trickier but we are trying to be very diligent about keeping crumbs and such isolated to his spot at the table and then promptly cleaned up. My hope is we will get their test results back...
  8. cmc811
    I have only been gluten-free for 3 weeks so you weren't far off. My rash isn't severe at all so I don't plan on trying to get dapsone so I guess I'll just try and ride it out. I do know I am probably getting a bit of cc right now. My kids haven't been tested yet (in the process) so we're not completely gluten-free in the house yet. We will be soon, but...
  9. cmc811
    No worries! It is frustrating that I can provide link after link to studies and they all say that DGP isn't better than tTg, but the 2 used together seem to yield the most accurate results, yet I can't get the test ordered. I haven't given up on this GI yet, since I don't have his explanation yet. I left a message for him and didn't hear back today...
  10. cmc811
    I was recently diagnosed with Celiac (based on low positive ttg and marsh I biopsy) and about a week after cutting out gluten I developed a rash on my elbows. Very itchy and now painful. I've been generally itchy off and on for a while but this is the first time I've had anything that actually resembled a rash to go along with the itch. Is is likely to...
  11. cmc811
    I guess it's possible but in the whole visit that was the one topic that I felt got the brush off a bit. I'll see what I can find out today but I have some work meetings so I don't know how much time I will have to deal with it. How long after a blood draw can an order be put in and the same blood used? My son does not tolerate blood draws very well and I...
  12. cmc811
    I don't know what the deal with the DGP is around here, but no one seems to think it has any value. When I asked about it he didn't really address it specifically. I told him that the pediatrician wouldn't order it because she said no one would know how to interpret the result. He looked puzzled by that and said no, that isn't true, but then he didn't order...
  13. cmc811
    So, how likely is it for the EMA to be positive if the ttg was negative?
  14. cmc811
    Correct me if I'm wrong but my understanding is that EMA is highly specific, but not super sensitive. Is that correct? Reason for asking is my son had a negative tTg-IgA (sufficient total IgA) and I asked about the DGP but the doctor ordered EMA. The tTg seems to be more sensitive than EMA so if that came back negative is there really any chance of the...
  15. cmc811
    Met Dr. Essers today and overall, I really liked him. He still didn't order all the tests to complete the panel, which I thought was odd, but he did order EMA-IgA and TSH, Lipase and CRP. Other tests like CBC and CMP had been done recently so he didn't repeat those. I specifically asked about DGP but he didn't think that would tell us anything more. Honestly...
  16. cmc811
    Does your daughter see a pediatric GI? Could you take your son's results to him/her and ask their opinion about whether or not the tests that were done completely ruled it out? I just got the call that my 2nd son's results were negative, but I don't even know what tests were ordered - will get report in mail on Monday, but I'm sure it wasn't the full...
  17. cmc811
    Dental enamel issues can definitely be a sign but without other things it certainly isn't diagnostic. My youngest son has a few things going on that others have reported as symptoms but in his case I have very low suspicion that they are due to celiac. It's my older son that I really worry about the diagnosis being missed... What tests did they order for...
  18. cmc811
    Sounds like you have a great doctor that wants to finally get you feeling better! That all sounds pretty normal to me. I had quite a few tests done as well to rule out potential causes and yes, the dizziness is one of my symptoms. I don't know that it's my worst symptom but it is the one that in interfering the most with my work, which is becoming problematic...
  19. cmc811
    I, for one, am having a really hard time getting my sons' pediatrician to run the complete Celiac panel. In desparation for answers I called up a pediatric GI office without a referral, explained the situation and was able to get an appt. Haven't went yet, but I've heard great things about the doctor so I am excited about the possiblity of someone actually...
  20. cmc811
    The simple answer is that anything is possible with Celiac! My 5 yr old son is currently being tested and he has the symptoms that I made bold in your list. His alopecia is Alopecia Areata, not Universalis, but regardless it's still autoimmune and he was diagnosed at 20 months old when all his hair fell out. We thought he did have universalis initially but...
  21. cmc811
    Thank you so much for the clarification!!! It doesn't help my particular situation because EMA was never ordered for me but my GI said it was very likely Celiac and was confident enough to call it that. I guess now I just worry that the diagnosis wasn't right. Is seeing how I feel on the diet the next step? My tTg was just mildly elevated (7 with >...
  22. cmc811
    I had a friend recommend the Premium Gold from Costco. For now my plan is to get that for more savory dishes that I would have used a whole wheat flour for before (breading for chicken nuggets, sauces and such) and buy Better Batter for baking, since I don't care for the whole wheat taste in baked goods. A while back we cut out "white" products mostly and...
  23. cmc811
    On Friday my GI doctor sent me a message saying my biopsy was equivocal (Marsh I). I sent a whole list of questions about how many biopsies were taken, possibility of damage being missed, next steps to rule out other causes of positive tTg and increased lymphocytes, what is means for screening my kids, etc.I also let her know that at only 1 week gluten free...
  24. cmc811
    I'm still too new at this to have a ton of input but just wanted to congratulate you on getting through to him and benefiting his future patients. That's awesome!
  25. cmc811
    I am in this exact situation. I have no problem going gluten free for myself because I think my test results provide enough of a case for it. It's my kids, mainly my symptomatic 5 year old, that severely stresses me out! The pediatrician hasn't thought it was Celiac from the beginning when I brought it up so the testing process has been difficult to get initiated...
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