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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    So this turns out well with egg sub? What was used, flax goo or a commercial egg replacer? Thanks! Looks awesome for my boy with Celiac, egg and dairy allergies!
  2. StephanieL
    Has she had the genetic testing? If the genetics are negative, maybe she does had a non-Celiac gluten issue. (Yes, I know someone will say you can have it without being genetically + but such cases are few and far between). Why did the Dr. what her off the meds? Are they damaging? If you really think it is Celiac, have you gone to another Dr....
  3. StephanieL
    Oh I would have had a fit if someone MADE my kid tough something that would make them sick! That is absolutely absurd. I would ask the administrators if they would make a kid tough raw chicken as a "manipulative". It would make them sick just as gluten can. As I said, I agree 100% that schools SHOULD help students managing food issues (there is are too...
  4. StephanieL
    I want to touch on a few things you have said. 1) Kids with Celiac ARE covered under the ADA and eligible for a 504 plan which protects them from things like food in the classroom. This isn't just *given* to students, it needs to be applied for. 2)Not everyone has the chance to homeschool kids. I am not sure of the exact statistics but duel income...
  5. StephanieL
    Hand washing before any food is the most important thing for preventing cross contamination. Another area we were worried about is art class. We were very specific that no gluten products are to be use nor the containers from food!
  6. StephanieL
    That's not the case. As with all food/nutrients, some women will and some will not pass through into the breast milk. Also, sometimes the same foods will pass through sometimes and not at others. I am all for nursing as long as possible and altering Mom's diet if something isn't working! I have been pregnant and or nursing for 6 years now and on an elimination...
  7. StephanieL
    Thank you. Thank you do much. There are days where it is so thankless and your words are very helpful after a rough few days. You're parents sound amazing and it's obvious they raised you well
  8. StephanieL
    If this is the measuring stick of things, you should most likely not buy anything in a box really Whole foods really is the best way to eat.
  9. StephanieL
    Hi Polly, Well I am glad you have some answers! It is so tough waiting this stuff all out but here you are! I would absolutely have your son go gluten-free. That is where we were with our DS but with higher numbers. And yes, you don't know about the other two. Celiac needs a "trigger" which is different in different people. My DD tested...
  10. StephanieL
    You may want to watch out for palm (palm oil) as well. My DS had a coconut allergy and after a few issues we asked his allergist if palm oil may also be an issue. After checking into it he said yes, some people hi react to coconut also react to palm (same botanical family and all). So if you find just going rid of coconut isn't enough it maybe another thing...
  11. StephanieL
    Yeah. Just put it in as little as you can to be sure he gets it all. Also, in think they are best taken 30 minutes prior or 30 after a meal. I can't remember 100% but I think that was what we did. We started with once a day and moves up to two for a while and back to one time daily. Now it's when I remember . Three kids will do that to a Mom
  12. StephanieL
    I added it to a small amount of water and added some Torani raspberry organic syrup to it. I have taken it and it is gross alone.
  13. StephanieL
    If it's an allergy you will know. If it's an intolerance you may have a reaction later. If there is no history of an issue, try and relax and not worry. You aren't going to be able to predict these things. Best advice is to introduce one food and only one new food addition for 3 days. If you are going to see a reaction, it'll be within that time. ...
  14. StephanieL
    Open Original Shared Link Looks like he's going on vacation on the 23 so maybe see if you can get a sample ASAP to start trying? Vit. D I usually just drop on his tongue. I have added it to food but as with any med, I put it in the smallest amount of food I can get away with so I am sure he gets the whole dose. I order it from Amazon. You can...
  15. StephanieL
    I think I got it Custom Probiotics seems pretty price up front (I think it was about $50-60 for the 6-strain we have) BUT it is 1-2 small scoops a day so our bottle lasted 6-8 months for 2 kids under 5. I think when I worked it out it was about $10/month which is pretty standard for a good probiotic. They are mail order and he only ships something...
  16. StephanieL
    We use Custom Probiotics and within 3 days of starting them my son had normal BM's for the first time in his 4 year life. They are refrigerated, gluten, dairy, and soy free. Pretty much everyone in the US needs Vit. D. The claims of the D-hist are not very scientific from my knowledge for foods. Maybe for environmental but not food allergies. NOTHING but...
  17. StephanieL
    There is no 100% on any of it. Nursing your baby as long as you are wanting to is what's best for your baby. Please do t let the off chance of a gluten exposure freak you out into not nursing as long as you want to. There are a ton of reason to breastfeed so even if the "exposure" kicked one benefit out there are 100 others that make it worth it to keep going...
  18. StephanieL
    I am so sorry you are dealing with this. Celiac is genetic. You have the predisposition to have it and it has to be turned on by something. Stress, illness or something. With her TTG that high, it isn't this illness that brought it on I would think. If your Dr. is wiling to diagnose her without an endoscope (which is becoming more common) that's...
  19. StephanieL
    Just to add too, our Cleveland Clinic Dr. called Dr. Fassano at the Maryland Celiac clinic and he was the one who said to either biopsy every year till there was damage or to go gluten-free and see if the ttg's came down and if so, that was our answer (being Celiac).
  20. StephanieL
    WNL= within normal limits. Sorry, the medical professional escapes from me at times. After 18 months of DS's ttg's remaining high and a few off TSH levels and the help of people here I demanded we see an endocrinologist. In March DS was put on synthroid. His ttg's at 24 months were finally normal. The thyroid issues (I believe) were causing his ttg...
  21. StephanieL
    No, nothing about the genetic test says you have Celiac just the predisposition to it. That is why it isn't considered diagnostic and often times insurance doesn't cover the testing.
  22. StephanieL
    If you are experiencing swelling of the tongue, you need to have Epipens. While you may be scared of medications, if you don't have an epi pen and have a reaction like you are speaking of, you can die. No other medication (not benadryl or anything else) will stop an anaphylactic reaction which is what you are describing. Prednisone isn't give to people...
  23. StephanieL
    Um...no, I don't think so. If she has elevated ttg's and + EMA, then those numbers won't fall to being within normal limits without being totally gluten free which does include cross contamination
  24. StephanieL
    We were given the option to scope every year or go gluten-free and see if the ttg levels fell. We chose option #2 and have been gluten-free for 2 years now. After a few issues (thyroid stuff) DS finally is WNL for his bloodwork.
  25. StephanieL
    Just because you have the genetics does not mean you have Celiac. It means you are predisposed to getting it, not that you ACTIVELY HAVE it. It's just like cancer genetic tests, you may have the genetics for breast cancer but it doesn't mean you have it at this moment. Blood work and biopsy are the only ways to tell if you actually HAVE Celiac (and...
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