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StephanieL

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Everything posted by StephanieL

  1. StephanieL
    Is he nursing (grin poop- formilk hind milk issues) ? Just hitting major milestones (extra calories for extra activity)? Honestly Celiac isn't the first thing that would pop in my head with that. Now with the IgA deficiency that does throw a monkey wrench into things. Being positive for the gene isn't really that telling for anything other than that...
  2. StephanieL
    My son and I went to Boston a few weeks ago to see Dr. Fasano. Aside from Celiac disease he also has life threatening allergies to peanuts, tree nuts, dairy and egg. This was the first time flying for us and the first time being out of town without access to a kitchen for more than a day. We had an AWESOME time!! I had some help (Thanks again Gemini...
  3. StephanieL
    I believe the current THEORY is that you have a leaky gut which allows the gluten proteins though the gut wall and causing issues. I believe that was what Dr. Fasano said when I saw him speaking a few years ago.
  4. StephanieL
    Some of the world leading Celiac Dr's will say in this kind of case to keep on a regular diet. It isn't "uninformed" ones.
  5. StephanieL
    Probiotics were a game changer for my DS. We were gluten-free for 3 months with no change in BM habits. Within 3 days of starting Custom Probiotics he had his first normal BM's EVER! (He was 3 1/2 at the time)
  6. StephanieL
    I've never used a roux in my mac and cheese but I have made them for other things using gluten-free flour and never had a problem.
  7. StephanieL
    I would call and get more info. Just because it DOESNT say "processed in/with" does not mean it isn't. May contain is 100% voluntary which is why i would call for clarification about same lines, same warehouses and cleaning procedures!
  8. StephanieL
    Hi Becky! I am a Mom to a 7.5 yo with Celiac and several other things. This is a great place to get some education and tip and help transitioning to a new lifestyle that will change her life!!!
  9. StephanieL
    Many here will suggest you not eat out at all for the first 6 months or so to give you body a real chance at healing before trying to rock the boat. If you have been dx with Celiac then there should be a need beyond that than eating gluten-free. Some do find more relief from also removing dairy but I would give a truly gluten-free (i.e. not eating out) a...
  10. StephanieL
    As I had expected, the appointment was more of a formality. Now that DS is considered a patient of Dr. Fasano we hill help guide this process from here on out. We live in Ohio so a trip to Boston isn't a) ease 2) cheap. Now, my sons health is worth whatever it takes but there is reality that going there again and again isn't going to happen. As it stands...
  11. StephanieL
    Hi Grateful! I saw your title and it was the first post I started reading on here when I got home then I see my name everywhere lol I know everyone talks about sneaking and I tell them with my kid, I can 99.9% say NOPE! If he was eating something with gluten in it long enough to keep his levels up, it would have to be from our strict gluten free stash...
  12. StephanieL
    I know many people who do this and IF you have the money and it's not going to break your bank, go for it! I just see people who are struggling and sick and think this is going to magically cure everything but that's most likely not the case. I see 99% of these tests say to go off G, D, E and a few others and add them back. Well that is an elimination diet...
  13. StephanieL
    Some airlines will make an announcement and some don't. And some say they will and don't and others say they won't but will Just like all things "policy", there isn't a very clear policy lol Sorry you missed your connection
  14. StephanieL
    Those tests have no valid scientific backing, are expensive and often severely limit a persons diet unnecessarily. An elimination diet with slow reintroduction is the only true way to get to the bottom of food issues, esp. suspected intolerances.
  15. StephanieL
    Where was it mentioned that it relates in any way to Celiac? I have never heard this. Usually there is a criteria of 3-4 cases of tonsillitis or strep in a one year period for a Dr. to take tonsils out. It is MUCH harder on adults and there is a higher incidents of bleeding issues in adults. Also, they crypts often reappear making it not worth the procedure...
  16. StephanieL
    That's kind of a harsh statement. I get what you are saying but if you said that to a kid or about another kid it would be really hurtful! As for the gene test, your kids share the genetics if they have the same parents. Chances of the sib having the markers are very high. Since the genetic test isn't diagnostic, it's not really of much use unless/until...
  17. StephanieL
    Yes to this. Just as a facility doesn't need to disclose if allergens are used in the plant or even run on the same lines, they don't have to disclose if gluten is in the facility. There are some brands that are better at labeling than others and have a better reputation. It's all about comfort levels for sure!
  18. StephanieL
    My DS is in the same boat as you except for the meat part. Life threatening allergies to all nuts/peanuts, egg, dairy and Celiac on top of that. What is your issue with meat? Is it from a philosophical place or do you not like it? If it's philosophical, would the sourcing of the meat help you incorporate it into your diet? (Not pushing just asking). If...
  19. StephanieL
    There are a TON of restaurants with Chef's there. They *should* know what they are doing and be able to work with you. Look up Vegas on Allergy Eats too. That's been my jumping off point for traveling with food issues.
  20. StephanieL
    Per Sonics website: *** FRYER OIL MAY COME IN CONTACT WITH ITEMS CONTAINING MILK, EGG, FISH, SHELLFISH, SOY, WHEAT AND GLUTEN BECAUSE FRIED ITEMS ARE NOT ALWAYS FRIED IN DESIGNATED STATIONS.
  21. StephanieL
    There are places that can and do do it correctly. I think the key is working with a chef and not a cook. BIG difference! HUGE. To suggest a chef doesn't have the knowledge to prep a meal that is gluten-free is silly. They go to school to learn how to cook and they do cover things like allergies and cross contact issues. I am not saying ALL chefs get it...
  22. StephanieL
    I believe August of this year. They are not required to test anything. Shared equipment is and will remain voluntary.
  23. StephanieL
    gluten-free baking isn't that off from normal if you can still do egg. Without egg is much more challenging. Different flours are better for different applications it has been said. I prefer one gluten-free flour (we use King Arthur's and I love it!) For milk, I usually use hemp for most of my baking. The difficulty would be butter. We use the soy...
  24. StephanieL
    Slow reintroduction. One thing with a minimum of 3 days between new foods (while eating them every day for those 3 days). There are no tests for food intolerances.
  25. StephanieL
    Ahhhhh okay! lol I haven't had enough coffee today I guess as I misread it it seems! lol We were "offered" to scope every 6 or to just go gluten-free and look at blood work every 6 months after super high tTG's but an inconclusive biopsy- we chose option 2!
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