rene wrote: ↑Thu Feb 08, 2024 2:56 pmJust telling you what our doctors told us.. to not think that there is no internal damage when a child does not show immediate and aggressive symptoms. With celiac there is no 95% gluten free... sure some have worse effects than others when they take that gluten but damage occurs even if it doesn't show 'externally'. But the ONLY thing that works is 100% GFResearchMed wrote: ↑Thu Feb 08, 2024 2:39 pmrene wrote: ↑Thu Feb 08, 2024 12:45 pm There was a comment upstream about how ‘sensitive’ one can be towards gluten and adjust lifestyle based on that. NO NO NO. You go 100% gf when you have a celiac diagnosis. While one person might puke violently after ingesting a crumb of gluten, others barely react but internally damage in the intestines still occurs. Just don’t.
I'm not aware that there is damage from cross contamination for everyone.
IF the blood levels are low/normal, rather than sky-high "off the charts", our physicians at our major teaching hospital and medical school seem to think DH is doing fine now, as long as his bloodwork remains so low. We'll continue to work with them.
I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs." That goes beyond discussions of where to get various types of specialty foods, etc.
Much better for everyone to work with their own medical team to make their own decisions.
And what is "504 celiac"?
I don't disagree with you... we just talk different things.
I agree that the standard to go by is the blood test values... every 6 months at the start, then annually you will get results and you will basically get an idea how successful you have been keeping gluten out of the system of you child.
I think we are talking different things here... when it comes to cross contamination I said already that I don't treat gluten as radioactive. I don't limit my purchases to only certified gf labels, plain gf labels etc... I use common sense and a bit of experience from how my girl reacts and that together with years of blood test results has made me comfortable in my approach. That said... i am talking about this idea that you can have a little bit of gluten because the reactions are not extreme. That is where we differ. There is only 100% gluten free for celiac patients. Btw, my wife is celiac and only found out after DD diagnosis... decades she lived with it and showed no signs of vomiting etc. Silent celiac... but the damage internally is there and continues until you go 100% GF. Now for cross contamination you can indeed (and I am) have different attitudes... I do eat with my DD at Chipotles and In&Out and don't use the Allergy Flag to make them change their gloves etc... we are good, there has been no issues with reactions and the blood test confirm we are doing good.
As for the 504... its like an IEP at school that travels with this child during school years. You can stipulate things like "48 hours notice before field trip, providing home made lunch for those trips, no gluten food in class or cooking class, separate table for eating lunch, permission to go to toilet anytime etc etc
https://celiac.org/main/wp-content/uplo ... AL-pdf.pdf
It is not necessarily easy to get one. My school was difficult in doing this but at the same time we have an excellent relationship with DD's teachers and staff and they are doing all the right things for her
I'll repeat: "I'm not sure it's a good idea to tell others - strangers -"NO NO NO" or "Just don't" and making alarming statements about how "damage ... still occurs."
(In my opinion, statements like that can and do alarm people, regardless of whether you happen to think gluten is "radioactive". I'm not sure why that type of language is used otherwise.)
This type of wording may be among the reasons that some threads get locked...
Much better for everyone to work with their own medical team to make their own decisions."
And not everyone with celiac disease is a school child. Your wife apparently isn't, just as DH isn't; he was diagnosed very late in life.
It's too bad they don't generally do regular screening tests, but... that's in the past now.