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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Getting Celiac testing takes more exposure than "whatever we find out and about" from what people know. It's about deliberate gluten ingestion for a minimum of 4-6 weeks from whats been suggested by many Dr's. As for testing, IgG isn't for allergies and isn't vetted by the medical community for any degree usefulness. I wound't spend the time/money/kids...
  2. StephanieL
    If she hasn't been on a fair amount of gluten, the tests won't be accurate. If you suspect Celiac then a challenge would be what you would need to do which is putting her on gluten daily for up to 6 weeks before the testing is done. As for food allergies, what you are describing has nothing to do with IgE food allergies which is what they test for. ...
  3. StephanieL
    Here's the thing: 1) you know you feel better now 2) you have no way of reliably getting tested (even if you DID test + for the genetics does not 100% mean you have Celiac) 3) you aren't a kid where you need a dx for accommodations. You have been given the same advice on several threads over several weeks and I've not seen anyone saying anything any...
  4. StephanieL
    I think it's pretty common for people in this situation to bring food with them. It's just life at this point but it sucks. Hospital dietary was completely clueless when we've had to use them.
  5. StephanieL
    I'm sorry you are having a rough time with this. I would caution you against making this a huge deal right now. Until you have definitive proof of an issue, I would drop it for now. If she does have Celiac then I would recommend making an appointment for him to go to or at the very least a document confirming the dx written by the Dr. to him. It's very...
  6. StephanieL
    If you want to be extra cautious try Edison Grainery. Much of the stuff they have is processed/packaged in a gluten-free facility. Organic too!
  7. StephanieL
    I really appreciate all your help/advice and stories! I think I hit the overwhelmed wall between dealing with the fluctuations in his numbers, this conversation this morning, my husbands lack of getting it, my own questioning if I should be questioning things and I'm normal this week Your suggestions are all amazing. I am going to see how things go...
  8. StephanieL
    I did tell him we have time and that perhaps things will change by the time he's old enough. I said maybe they will change the rules or perhaps there may be medicine to help but we just don't know yet. Always hope!
  9. StephanieL
    Thanks. He's still young but those are great ideas to show him! I just feel like such a jerk right now. Like I said I've been so worried as is and now this I knew we would cross these things but... I also know that in the next few years there is an expected shift in thinking about allergies too where they start to understand the ramification more. I...
  10. StephanieL
    That's my concern and what I'm trying to figure out. His labs are all WNL except for the tTG's being elevated still. On top of all this I crushed the kids dreams today. Through a round about discussion I informed him he will never be able to join the military (he's said forever he wanted to be an Air Force Pilot). Now I'm sure he'll change him mind a...
  11. StephanieL
    I think the thing that is worrying me most is the elevated tTG, the peeing thing and being skin and bones. Those three together just have me on edge really. I will look into that powder. Not sure what I could add it to. I haven't found any dried fruits that are safe for us. Esp. when so many of those companies have/process nuts. I will keep looking...
  12. StephanieL
    He's very active! Soccer, baseball and running around with his little sibs ALL DAY LONG! lol I think another issue is he seems to have urinary issues. He can't hold his bladder to save his life! Like a racehorse I swear. That made me look at diabetes esp. with the other auto issues. He's checked out fine for that too though.
  13. StephanieL
    IH- driving would mean more time out of school but it isn't out of the question. We are planning a trip in Sept. and we are flying for that, I have already asked my GP for a script as I think I'll need it for the flights Kareng- We insist on protein first and he's goos about that. We use hemp and coconut milks. Add EVOO to anything we can sneak it into...
  14. StephanieL
    Thanks all. I do appreciate you taking the time to answer me! Food CC- I call manufacturers all the time and I don't think that's the issue. He's not super sensitive AFAIK but with his allergies, I don't leave things to chance. I have testing things in the past that I was suspicious of but I really don't think that's it this time. Sneaking- While...
  15. StephanieL
    DS is 7, dx at 3 1/2 and gluten-free since. He also has life threatening food allergies to dairy, egg, peanut, tree nuts, banana and blueberry. Hypo thyroid which is controlled with meds. He is so think it's like skin literally draped over bones. His tTG's are also a bit over "normal" after finally getting them down after years. Not sure why, nothing...
  16. StephanieL
    I have in the past. His 0 (literally zero) Vit. D was what actually led to the Celiac dx for him. We usually get vitamin checks from his endo 2 times a year. Just the "standard" D, B and a few others. We've looked into the Avi-Q but the engineer husband of mine isn't ready to make the leap till it's been on the market for a while I know it has the voice...
  17. StephanieL
    So are the shots for environmentals or food? Very interesting. I keep hoping OIT will prove useful for foods but it's a long way off I'm sure. Glad you have a gaggle of epis! lol We have them everywhere here at home and at school. Do you have the $0 copay coupons being offered for them? If not it's a great plan and has saved us a ton! Works even if you...
  18. StephanieL
    He's getting allergy testing every 3 months? I haven't ever heard of a board certified allergies doing them that frequently at all. Immunity doesn't change that quickly! As for your DD, I hear you about wanting better for her. We are in a limbo state right now and I just pulled DS's files to go over his blood work yet again looking for ANYTHING. I hope...
  19. StephanieL
    So you aren't nor is she actually allergic from this testing you are talking about. These are intolerances dx by EAV? I have to say, there is not any peer reviewed literature documenting the scientific validity of this kind of testing so I'm not sure how many Dr's would look at those result and feel comfortable pulling those foods. I understand wanting...
  20. StephanieL
    Where did her numbers start and where are they at now? It took a very long time and some additional interventions before my DS had normal blood work but it was short lived. Intolerance testing isn't scientifically proven. It often leads, as you've seen, to very restrictive diets with little/no real results. A food log is much more apt to get you information...
  21. StephanieL
    DNA is DNA. It's in every cell of your body so I don't think it would matter swab vs. blood. They use cheek swabs for police investigations so I would think that would be good enough for a Celiac gene test as well.
  22. StephanieL
    The testing you are speaking of has a 50% rate of a false positives (false negative are very rare on the other hand). It isn't that it's junk so to speak it's just that there isn't anything better unfortunately. This is why the recommendations from the AAAAI is NOT to test for things just because and only to do so when there is a known reaction. I deal...
  23. StephanieL
    Allergy testing is notoriously not very accurate and it is NOT suggested in testing whole bunch of things just to see what "sticks". Unless there is a documented reaction (hives, vomiting, diarrhea, breathing issues, sneezing, wheezing and the like) from 20 minutes to 2 hours after ingesting a food, food allergy testing is NOT recommended.
  24. StephanieL
    Neither of those tests are going to be use for a dx so I wouldn't waste my time or money on them. As for a referral, that is going to depend 100% on your insurance. Some you need to get the OK from your primary Dr. Some you can go to whoever you want in whatever specialty you need. I'm confused, is she or is she not gluten free? I saw she was sneaking...
  25. StephanieL
    Hugs. Glad you have some answers though. Get everyone tested for sure before making big changes in the house. Different families deal with it differently so decide what works best for yours.
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