Jump to content

cmc811

Advanced Members
 View Profile  See their activity

  • Posts

    81

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

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

Everything posted by cmc811

  1. cmc811
    I didn't recognize it all the time but looking back my first pregnancy is when my symptoms started....that was 6 years ago
  2. cmc811
    I'm in a similar situation except I did get tested and my results are being called inconclusive. Low positive ttg and Marsh I biospy isn't convincing enough apparently......grrr! Anyway, my 5 year old is also having symptoms which is what really prompted me to get tested because I was getting resistance from the pediatrician when it came to testing him...
  3. cmc811
    Type 1 lesions, with IEL only, can be seen in IBS and other causes of malabsorption. If a patient has a Marsh Type 1 lesion in the duodenum and positive TTG antibodies, the diagnosis is either Celiac Disease or Crohn’s Disease. If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease. I stumbled acr...
  4. cmc811
    EXACTLY! I have no intentions of ever eating gluten again for myself. It's my kids that concern me without a one way or the other diagnosis. I did not have the gene test but I was going to ask my doctor about it. I do think it could be helpful in making the jump to a full diagnosis. Of course the other side of that is that if the gene test is negative...
  5. cmc811
    Okay so my fear is being realized.....biopsy was "equivocal". Exact message from doctor was: "The biopsies of the small bowel was somewhat equivocal. It showed an increased in some inflammatory cells called lymphocytes but there was no evidence of villous blunting (which is the classic feature for celiac). I agree with you since you feel better on a...
  6. cmc811
    My hemoglobin is always low, as is my hematocrit and rbc. My MCV is slightly high, but B12 and folate are fine. I did notice my b12 is lower with each check though and is now pretty close to the low cutoff. I wonder if I'm becoming b12 deficient? Also, in regards to periods, that is certainly not my problem. I have PCOS and go months between periods if...
  7. cmc811
    I got the "unspecified anemia" diagnosis. My PCP referred me to the hematologist to have it further explored but he never figured it out either. He wanted me to keep coming back every 3 months but after the 3rd visit of him saying the exact same things and not reaching any further conclusions I quit going. So, yes I have officially been diagnosed with...
  8. cmc811
    That's what I thought but hematologist said my anemia wasn't iron def. High Transferrin Very low end of normal ferritin low hemoglobin low hematocrit low red blood cell count Iron binding capacity 2 points from being high It was my understanding that was all typical for iron def but maybe because my actual iron serum was normal, that is what...
  9. cmc811
    I did have the endoscopy, which looked normal, but haven't received pathology results yet. I can't even get the pedi to order the dgp for my son so asking her for a referral to get a scope done will never happen! I think I'm going to make him an appt with my doctor (general practioner) and see what her opinion is. SHe's more open to running tests the...
  10. cmc811
    Unfortunately, I did submit to her lots of reputable websites and studies saying that the ttg and dgp together provides the best accuracy rather than just ttg alone, but it didn't do any good
  11. cmc811
    I definite will remain gluten-free. The reason I want to pursue a diagnosis is for the benefit of my kids. I've posted a bit about my struggles but I suspect my 5 year old has celiac but his ttg was negative (total iga normal) and his PCP doesn't think further testing is necessary. I asked for DGP by name with several links supporting the use of it with the...
  12. cmc811
    Thanks for your input. Just to clarify, I do have all my results I just didn't have them in front of me while I was typing. I actually can view all my tests results with ranges online and can reference them at anytime, which is super handy! Also other doctors have easy access to them as well. My total iga was in the middle of the normal range so I...
  13. cmc811
    Not to hijack original poster's thread, but what should ferritin be? Mine was labeled as "normal" at 17.8 with a standard range of 12.0-306.0 Should it be closer to mid-range/upper range? Where does transferrin fit in? Mine was actually above the normal range. I've tried googling and just confused myself more and unfortunately my hematologist wasn't much...
  14. cmc811
    Quick history: *List of symptoms that can't be explained *ttg iga value of 7 (anything over 4 positive, but 4-10 considered weak positive) *Total iga normal (don't have exact values in front of me at the moment but they were in middle of range) *ANA 1:40 speckled but all confirmation tests for different antibodies negative so Lupus and other disorders...
  15. cmc811
    Also you could ask for a gene test. Some docs will make diagnosis without positive biopsy with a ttg that high if the gene test is positive and your symptoms are resolved by a gluten-free lifestyle. Maybe keep with the diet and have repeat labs in 6 months to see if you're absorbing more nutrients as you heal?
  16. cmc811
    When was your endoscopy? My dr told me my endoscopy looked normal, but we were waiting for pathology to look at the biopsies. Could the receptionist have reported the "normal" result without having the pathology report? technically, she shouldn't have given ANY results since she's not qualified to do so, but that's a whole other topic..... Regardless...
  17. cmc811
    Thanks so much! I actually just found the Swedish GI page too and it looks like I can make an appt there without a referral. I'll wait for my biopsy results and then we'll likely end up there. Thanks for all your encouragement. It's such a frustrating process but feeling icky everyday is frustrating too! *Added: I just remembered one more finding...
  18. cmc811
    Her answer was not only frustrating but is leaving me very discouraged about finding a different doctor that might listen. To my knowledge the GI dept at Seattle Children's is where he would be referred to by any PCP in this area. If they aren't more knowledgable than what hope does that give me? Celiac might not be the problem but I'm not willing to...
  19. cmc811
    Well, time for plan b.........here is the doctor's response to my email: "I discussed today with the GI doctors at Seattle Children's. The current evidence-based recommendation is to screen with TTG (Jacob's was negative) and do no further testing if TTG normal. The new test mom mentioned, DGP, is recommended for a subset of patients who need it. It is...
  20. cmc811
    So I think I'm in need of a new pediatrician, which is very unfortunate because I have really liked her in every situation but this one.... Got the phone call today from her nurse that she didn't order the tests because she doesn't see the value...grrrr! Hubby actually talked to her and explained our concerns about going gluten-free without full testing...
  21. cmc811
    Having an official diagnosis is something I would be thrilled about! No one ever wants to hear something wrong with their child but you can't help them if you don't know. Making them better is the ultimate goal so celebrate all you want If you don't mind me asking, how old is he and what bloodwork results did he have before biopsy?
  22. cmc811
    Thank you! I just sent an email to her requesting the ttg igg, dgp iga and dgp igg. I also explained that we will be gluten free by the end of next week, regardless of my biopsy results, and I really want the full testing done before we lose the opportunity. We'll see what she says. I have a feeling it will be "make an appt to discuss" which is going to infuriate...
  23. cmc811
    Thank you so much for your insight. I'm sorry you've had the same experience though As far as his rash, it really doesn't appear to be DH and the dermatologist seemed very informed about celiac and encouraged me to pursue it more with him, but she didn't have any concerns about his rash being DH. It has a very classic molluscum appearance and I actually...
  24. cmc811
    Cara - how did you get them to run the IGG tests with a normal IGA? Our pediatrician, whom I normally love, thinks that Celiac is highly unlikely for my very symptomatic son because his IGA was normal and his TTG-IGA was less than 1 (under 4 normal). No known family history until I got tested....my ttg was 7 and my biopsy is next week. I'm at such a loss...
  25. cmc811
    Hello, I'll try to keep this as short as possible.....I need to know what you all suggest as far as testing for my kids. Here's the background: *I have presumed Celiac disease. tTg mildly elevated, ANA mildly positive, C4 mildly low (notice a trend???) and I have definite symptoms. Thyroid antibodies negative as well as all the confirmation tests...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.