@Aaron it sounds like you’re on the right track!! I just was thinking it’d be good to know one way or the other - and it sounds like you do. If testing is enough to be 99% conclusive, then that’s pretty clear. It’s interesting your kiddo’ self-selected diet omits most gluten. From what @Thomas said, the biopsy sounds pretty rough. I’m glad FUD is here so one can get stories from a variety of experiences, and hear about what worked for others.
Hopefully @ClaudnDaye will figure out what’s causing the tummy troubles and it’ll have an easier solution.
I’m part of a couple celiac disease support groups on fb, and it doesn’t seem that unusual. My sister (an adult) also throws up when she eats gluten (not with cc though). I fortunately have managed to not eat gluten outside of cross contamination amounts, so I’m not sure how I’d react.
I don’t mind at all what other people choose to eat or not eat. I just wish they would call it what it is. Don’t claim it’s a medical condition unless a doctor has been consulted.
It frustrates me that the term “allergy” has become so watered-down that no one understands what it means anymore. Medically-speaking, an allergy is a (potentially severe) immune system reaction to food. Yet, so many people say they’re allergic to something just because it’s upset their stomach or gives them a headache or they just don’t like it. When I say I’m allergic to a server, I wish that it would automatically indicate to that server that a) I have a diagnosed medical condition, b) I will have a potentially severe reaction if I encounter certain foods, and c) I will react even to very minute amounts (such as cross contamination). All of those things are true of allergies. But, unfortunately, so many people use the term willy-nilly that nobody understands this. So many people self-diagnose themselves without ever seeing a doctor, or are diagnosed by some sketchy test run by a naturopath, or just think that “allergic” indicates that you don’t like something!
I can’t count the number of times I’ve told people I have food allergies and they go, “Me, too!” and then turn around and eat or drink the thing they’re supposedly allergic to. Then I clarify by saying that I have “severe food allergies,” and people still think I’m too strict and paranoid about food. It’s not until I tell people that I carry EpiPens (or use the words “life-threatening”) that they actually get an idea of what I’m trying to convey.
I think it’s totally legit to pick up on problems and then get an official diagnosis through a doctor. I’ve had similar experiences where I pretty much knew what I had before I was diagnosed. But there’s a difference between bringing condition to the attention of a doctor and getting the proper tests for diagnosis and just foregoing the doctor and testing part altogether and deciding that you have a certain condition…
Interesting. My TSH levels have been all over the place over the past two years, but as long as it’s within the normal range listed by the lab (which is 0.3 - 5.0 or so), I feel okay. My TSH this past week was in the 4s and I feel fine, though my free T3/T4 levels weren’t tested because they get automatically cancelled if TSH is within range (which I’ll admit is annoying, but I suspect my levels are normal based on how I feel). I’ll be interested in what my endocrinologist thinks, but I suspect he won’t change anything.
That would drive me crazy! You have Grave’s, right? Maybe it’s just a difference between Graves and Hashimoto’s, but my TSH can be in normal range and my T3/T4 are still out of whack, so I always have to have all tested. Example: during pregnancy I was between .3-1 TSH almost the whole pregnancy, but my T3/T4 were low. I’ve only just in the past month gotten them back in range.
I had no idea allergies were considered that trivial. Maybe it’s because my sister had severe food allergies (and asthma) growing up, allergies always seem a big deal to my family, and I just assumed others felt that way as well.
My brothers are the same and take allergies really seriously from growing up with me (as do my parents). But I don’t think that’s the case for most people who don’t have direct experience living with someone with true food allergies.
Lactose intolerance is pretty easy to deal with but dairy protein allergy is a whole 'nother matter.
And many people with GF issues, like my husband, don’t test postive for gluten allergy but have horrible GI problems or worse–one friend gets severe joint pain. Sometimes the best thing to do is eliminate the suspect food for several weeks and see if symptoms clear up. Just food for thought…
I agree that some people are just jerks about other people’s food choices, but I think the issue is that eating is a collective experience for many people, and food restrictions sort of by definition limit how much food can be shared – so I think some people just get frustrated because they want to accommodate everyone and it’s not possible without extra work, and sometimes it’s not possible to accommodate everyone’s dietary needs period. So if they’re gong to make the extra effort, they want to know how “necessary” or flexible the dietary restriction is.
I lived in a co-op during grad school with so.many.food restrictions. We had a vegan who also didn’t eat things like pasta or foods that had certain “heat” properties as described in Ayurveda, a girl with legit Celiac’s disease, a few vegetarians, one guy who came back from Hawaii only eating raw meat, another who was vegan except for chickens he insisted on killing (with his bare hands!!!) in our back yard, and then others who had no dietary restrictions, but like all people, had a handful of foods they hated.
We used to eat dinner together and cooking for everyone was super challenging, but I used the medically necessary/food preference spectrum to guide how much I accommodated people, in part.
There are also so many gray areas. My dad has heart failure and takes Coumadin. he can’t eat too many leafy greens or salt, and the consequences ARE super serious if he doesn’t adhere to his diet. But he can have some of those things, and whether he can eat something for one meal depends on what he ate for the last and what his INR level is… So it can be tricky cooking for him as well, and it can also be frustrating when you see he ate something one time and it was fine, but that another time it’s not.
I had a friend who died of a peanut allergy because the servers at a Thai restaurant incorrectly told her the food she ordered was peanut-free. So to me I take allergies super seriously and I think it’s a HUGE problem if people in the food industry do not.
Beyond Celiac (formerly the National Foundation for Celiac Awareness) says that roughly 18 million Americans have non-celiac gluten sensitivity.
Every time I see new gluten-free products in the store – my local supermarket now stocks more brands of gluten-free bread than gluten bread – or yet another gluten-free bakery open up, I’m very glad for people who have gluten issues. But I can’t help but notice how all those coffee shops and bakeries and restaurant menus offering a plethora of gluten-free options don’t have a single thing that’s sugar-free. And 30 million Americans have diabetes.
This makes sense to me. I am not a fan of crying wolf. Reserving words for their true meaning reserves the impact of those words for those who need it. I am sorry for everyone with actual conditions that are serious and don’t get taken seriously due to the overuse of said description.
While I don’t eat gluten, I would never say I have an allergy to wheat if I didn’t. I can understand why explaining celiac disease would necessitate the word “allergy” from time to time. Because vomiting for hours is awful.
This also makes sense to me. I assumed people got tested or had a situation like @Pianoplayer7008 where they had a strong/probable likelihood of disease/allergy before they announced it to the world.
This thread has made me realize I tend to look at the world differently than other people out there. (Surprise, surprise!) I have legitimate allergies to a few different medications that cause anaphylaxis and thus would never “fake” or claim an allergy that I didn’t have. Never occurred to me to lie about food intolerances or whatever.
Or, if it’s “sugar free” it has been loaded up with agave, maple, or rice syrup - or it has been made with sugar alcohols or whatever. Although we’ve had good luck ordering meat, vegetables, salads, etc. with lower sugar options that way.
Coffee shops are full of things that are “treats” here and most in my area at least do not cater to GF patrons.
My husband agrees: rice krispie treats don’t count as “treats”! Our favorite coffee joint offers flourless cookies and a couple of items I generally can bolus for successfully (3 ounce custard-filled eclair is really yummy and just the right size).
Starbucks, at least, does have some low-carb/sugar-free options, albeit not baked goods. I think the main problem is that people with diabetes have been told “eat whatever you want and take insulin/medication to cover it” and those who choose to eat low-carb for tight BG control are among the minority.
Maybe it’s because my sister had severe food allergies (and asthma) growing up, allergies always seem a big deal to my family, and I just assumed others felt that way as well.
