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SiandAshs Mom

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

Everything posted by SiandAshs Mom

  1. SiandAshs Mom
    Thanks so much. Yeah, I could just be getting a cold. Who knows! It's weird though - It doesn't feel like a sore throat now. I can drink and eat without the pain that typically comes with a sore throat. My neck/glands feel tender and swollen though. I will keep up with a food diary to see what I can determine. Can these symptoms be brought on by non-celiac...
  2. SiandAshs Mom
    Hi all. I had the attg iga blood test run (it's the only celiac blood test available here unfortunately). It came back completely negative. I eliminated gluten for 3 months anyway and was feeling really good. Not perfect, but much better than before. A few days ago I added gluten back in. I ate a lot of gluten over the course of two days. I felt okay afterward...
  3. SiandAshs Mom
    Sorry if this was posted already somewhere else - I couldn't find anything... I just came across this article Open Original Shared Link What are your thoughts on this? I tested negative on the attg iga blood test (the only blood test available here). My doctors don't think gluten is an issue. I went on a gluten free diet anyway and I feel better. My...
  4. SiandAshs Mom
    Thanks folks! He's already been off the nasonex for 3 weeks anyway so we went and had his blood drawn today. I think it makes sense that they would be referring to oral steroids that had been taken for a long time. I appreciate all your knowledge and insight!
  5. SiandAshs Mom
    I'm sorry you're having such a tough time getting a doctor to help you. Is it a possibility to go to a walk in clinic and ask a random Dr. there if they'll test you? I am in Alberta - thankfully the ttg iga test is covered by Alberta Health and my doc was willing to send me for it. Unfortunately if that one test comes back negative (as mine was) then you...
  6. SiandAshs Mom
    No, I can almost guarantee that my doctor would have no idea that steroids can cause inaccurate results. I only knew because of these forums. The lead celiac researchers do acknowledge that steroids are a no-no though. Still, I can't seem to find any info on how long one must abstain from steroids... Open Original Shared Link
  7. SiandAshs Mom
    Thanks so much for responding. I'm sorry you struggle when off your meds too. Not fun at all! My son has already been off of the nasonex for 3 weeks and he's a congested tired mess! It's amazing how much better he sleeps when he takes it... I really don't like him being on meds but his quality of life is just so greatly improved. Looking up online it says...
  8. SiandAshs Mom
    My 5 year old has a requisition in for the attg iga blood test (the only test available here in Alberta, Canada). He has been on nasonex (mometasone) steroid nasal spray daily for quite a while now. How long should it be off it before we take him in for blood work? Thanks so much
  9. SiandAshs Mom
    Wow - yeah, low iron after menopause is certainly a red flag! I'm sorry it took so long for you to get a diagnosis but I'm glad they figured it out Yeah, I will definitely ask! It couldn't hurt. Thanks so much Thanks - my regular doctor really didn't think an endoscopy was warranted at all so I'm not sure how much help he'll be. Since he's willing...
  10. SiandAshs Mom
    Thank you! I am on progesterone only birth control pill now so my bleeding should decrease. Hopefully my iron levels start to go up more but if they don't, maybe the doctor will agree to send my for an endoscopy . I'm glad your family feel better gluten free. I may have to follow their lead and go gluten free without a diagnosis. That wouldn't be the end...
  11. SiandAshs Mom
    Thanks for the response. Yes, my iron is quite low. It was at 9 ug/L and after being on good quality oral iron supplements for a year it's only now at 12. I have an endometrial cyst on my ovary so my doctor believes this is due to heavy menstrual bleeding (which it may be...). My B12 was in the normal range for my lab (>150 is normal) but I feel it's still...
  12. SiandAshs Mom
    Hi all. I had the ttg iga test run a few months ago and it was flat out negative (my total iga was normal). I still suspect I have an issue with gluten but our labs here don't run any other tests. I know that the local naturopath can run a 'celiac panel' that includes ttg iga (already know it's negative) along with antigliadin iga and igg. Now I know most...
  13. SiandAshs Mom
    Thanks for responding. I did have the ttg iga test done and it was negative (ttg iga is the only celiac blood test available here - they don't ever run a full celiac panel and only run the ema test if ttg iga is positive). Since I still had symptoms which improved on a gluten free diet, I wanted to have the gene test done. My kids have symptoms as well and...
  14. SiandAshs Mom
    Thanks for posting - here's the website Open Original Shared Link . This is the results that they emailed to me. They are also mailing me the report so hopefully there is more info in that. My doctor did run a total IGA and it was normal. Looks like celiac isn't the answer. I appreciate your thoughts! Thanks Colleen. Yes, I have a lot of symptoms but no...
  15. SiandAshs Mom
    Anyone? It has a part that explains my genetic risk profile. It says I am DQX.5 which means my risk ratio is 1:1842 which is significantly less risk than the general population. Does this mean celiac disease is highly unlikely for me? If my husband passed on a celiac gene to our kids and they got the gene from me as well is their risk significantly increased...
  16. SiandAshs Mom
    Hello all, I recently ordered a genetic celiac test and got the results back. It says, "This patient has a genetic predisposition to celiac disease." But then one part says my risk factor is below the average population - and I have no idea what DQ I am or what that even means... Here's what it says... Locus AG1 ...
  17. SiandAshs Mom
    I actually have no idea what testing to do. There really isn't much else here other than the biopsy... my doctor suggested a colonoscopy and I thought that he may send me for an endoscopy as well but I'm not sure he would agree to that - and I'm not sure if it's necessary since the tTG IgA was completely negative. I know the naturopath here does IgG testing...
  18. SiandAshs Mom
    Thanks nvsmom. You've given me great feedback in other questions I've posted as well. Yeah, I would be fine just cutting out gluten from my diet completely but the fact that a diagnosis may benefit my kids keeps me from just accepting that. I just ordered the genesure genetic test from glutenpro and even though it wasn't cheap it will maybe help me figure...
  19. SiandAshs Mom
    Sorry - I only checked this now... his doctor looked at it and said it was nothing. I am assuming he's correct and that it isn't DH but I still feel it seems fishy. Just not indicative of anything in particular. I have come to the conclusion that I need to figure out my own health first and get an appropriate diagnosis for myself before I can help my kids...
  20. SiandAshs Mom
    So I asked my doctor for celiac blood tests a few months ago. He sent me for total IgA (1.32 g/L {ref 0.70-4.00}) and the tTG IgA (<1.0 U/mL {ref <7.0}). My total IgA is normal and my tTG IgA is a big fat negative. I then found out that they only run the EMA if there is an elevated tTG IgA so they didn't run that on me. The lab doesn't even do the gliadin...
  21. SiandAshs Mom
    Thanks - do you think the fact that the IgG and IgA are on the low side is an issue? I have an appointment with my kids' paediatrician tomorrow. My oldest doesn't seem to have any symptoms of celiac (other than reflux) but my younger two have some things I'm concerned about. I'll see if he's willing to have them tested. We stopped our gluten-free diet (well...
  22. SiandAshs Mom
    Thanks nvsmom. Apparently the labs here aren't good either. They only had the tests you mentioned and they didn't even run the EMA since my tTG IgA was negative (my doctor saw the celiac panel list I brought in and agreed to send me for all the blood tests I could get). The paperwork says, "REQUEST CANCELLED. Not indicated. ATTG test has greater sensitivity...
  23. SiandAshs Mom
    Thanks! I have a doc appointment for my son on Monday. If anything comes out of it, I'll post . Thanks again!
  24. SiandAshs Mom
    Yes, I would love an official diagnosis if he does have celiac. It would be better for school and it would make it easier for our family to accept it. If I were to make my son gluten free without a diagnosis I can guarantee my parents and my inlaws would disregard it. Oh well...
  25. SiandAshs Mom
    No worries!
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