People “faking” allergies comes up a lot in allergy communities I’m in. I see quite frequently in low-carb diabetes groups people saying they have various types of allergies to avoid carbs. Generally, for something like celiac, it makes sense because it requires the same avoidance of cross-contamination as someone with an allergy. But so many people out there who don’t need cross-contamination precautions state they have allergies, which overall really waters down the seriousness of them (to restaurant staff) and makes things more difficult for those of us who have food allergies and celiac.
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I see the same thing with diabetes in the LADA Facebook groups… frequently
Seconding this. Lactose intolerance can definitely be a temporary side effect of glutening for people with celiac. Inconsistent lactose tolerance (sometimes it’s fine, sometimes it’s really not) is a symptom of untreated celiac. I’ve also seen it anecdotally—one of my best friends has celiac, and she used to be less strict about being gluten free and thought she was also lactose intolerant. Now that she’s following a strict gluten free diet, she can have all the milk she wants unless she’s been recently glutened.
Pretty sure all natural hot dogs like Applegate Farms don’t contain gluten. They also skip the added nitrites and sketchy stuff, have no carbs (unlike the more processed stuff), and IMO taste much better. On the downside, they are more expensive. In general, it seems like if a food “shouldn’t” inherently have gluten (like hot dogs, ice cream, etc), the less processed versions with fewer ingredients are generally more likely to be gluten free and these days, will list it if they are since it’s a selling point beyond just for celiac.
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People faking allergies? Or diabetes?
I read a study that about 30% of adults believe they have a food allergy, while the true prevelance of medically confirmed food allergies is only 2-4% (don’t quote me on that, I’m going by memory and don’t have time to look up the citation, though I can find it tonight). So many people feel they can self-diagnose their own food allergies. I imagine the same is true of celiac, with a lot of self-diagnoses floating around out there.
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Diabetes I mean, it’s not that they’re intentionally faking it… they are concerned about their blood sugars but their doctors keep telling them they’re completely normal, so they poke around a little and discover LADA and think they figured it out… happens a lot
I can assure you every medical provider in my family encounters this every single day multiple times and it drives them crazy… the running joke around here is “Dr Google told them they have celiac” or whatever the case may be
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Yeah, I see the same in thryoid communities. People worried sick over thyroid levels that are still in the normal range. As someone who’s had thyroid levels way outside the normal range to the point where it was almost life-threatening, I don’t worry about levels as long as they’re in the normal range. But apparently there’s an “optimal” range that people try to aim for, even within the “normal” range. (I guess you could probably say the same with blood sugar, since some people aim for super tight control while others don’t care as much.)
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I see that with psychiatric stuff too, especially with Aspergers, OCD, and bipolar disorder, all of which have pop culture stereotypes that are somewhat different from their actual typical clinical presentations or not specific to them. Although I’ve seen plenty of psychiatrists and mental health providers also screw those up (especially bipolar disorder).
That said, that kind of self-diagnosis is more or less how I accurately diagnosed my own T1 diabetes at age 10. I read about diabetes in a book, told my mom I thought I had it, and, in response, she told me about hypochondria but said if I was really worried we could get it checked out the next day. My blood sugar was 750. When I was 13, I was convinced I broke my wrist, the ER doc said no, I swore up and down I did, and my mom (not messing around this time) took me to an orthopedist who re-read the x-ray and indeed found a fracture. As an adult, I diagnosed my connective tissue disorder initially on my own (now verified by a CTD specialist), despite having seen doctors for decades about the various symptoms. I’ve also had misses, but it’s hard not to take them seriously when my success rate is also pretty good and I have a lot of reason not to trust doctors to get it right or pick up on things. So I can definitely understand it from both sides.
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I wasn’t talking about allergies here; merely food intolerances (and some people truly do “just” have an intolerance to gluten, which cannot be tested for). I do know some people err in elimination diets, deciding they must need to be gluten free (or whatever free) because they feel better without, when it may be that what they eliminated was ultra processed food - of course you’d feel better cutting that out! Again, allergies are a whole ‘nother ballgame.
Same here. I always say, “I have celiac disease and a severe wheat allergy.” Sadly, that’s what I have to do to feel safe eating out, because people take allergies more seriously.
Yes! It’s frustrating for sure.
I experienced the same with my allergist. He did test everything I was having issues with, but no allergies. I was just intolerant (and thankfully temporarily for most of it).
Haha, we make jokes about Dr. Google, too. I try to remind myself it that every time I’m tempted to google about any symptoms my kids have…
I don’t overly worry about my levels being in optimal range, but I will try to get adjustments made if they’re not. For example, if my TSH isn’t somewhere between .5-2, I feel like crap (and it’s not just in my head), because usually if it’s higher or lower than that, something’s off. Yet the standard range for most labs says normal is <5? And another problem is some doctors still go off the old belief that a TSH <10 is normal (and many will only check tsh, which isn’t the full picture of thyroid function, as I’m sure you know!). All that to say, I get why some people would still worry even if in “normal” range - normal for each person is very individual when it comes to thyroid levels.
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I see that with psychiatric stuff too, especially with Aspergers, OCD, and bipolar disorder, all of which have pop culture stereotypes that are somewhat different from their actual typical clinical presentations or not specific to them.
My favorite is when people diagnose others with a mental illness. I know someone who thinks that two out of four people she meets are sociopaths. Or has borderline personality disorder, etc. etc. etc.
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Hello @ClaudnDaye! Good to hear from you. I am sorry it has been a struggle lately, and this time of year is generally busy for everybody. I’m sure hopeful that come 2018, things will calm down a little bit for you guys.
It was NOT obvious to me. I’ve never had the biopsy, and I wish I had known about it when I quit eating gluten. I came up with the diet change on my own after years of struggling with IBS and no meaningful medical care surrounding it. No gluten really works for me, but I wish I knew if I had celiac or not now that I’ve been GF for years. I am actually considering going back on gluten so I can be tested to rule it out. I know with kids it would be a lot harder, but having a definitive diagnosis would be nice. Also, people CHOOSING to be GF might have gluten intolerance/no insurance/useless medical professionals and still benefit from the choice even if it’s not celiac disease. Also, I agree with you that this movement towards less gluten has lead to a lot more food options for people with celiac disease, and understanding of their needs. It’s certainly not perfect but it’s better than a complete misunderstanding.
@Aaron and @ClaudnDaye please do consider the testing if its recommended. While the outcome would suck, better to add it to the list of things to manage and not have the side effects (tummy troubles, bad control, etc.)
I recently listened to this interesting podcast about celiac disease and gluten intolerance, and it really opened my eyes up to a lot of things I had not considered. There were some points that I disagreed with in this podcast, but I did learn some new stuff.
And on the topic of being put under and needing multiple things addressed: make damn sure you start that conversation early. Makes total sense to me to do it all at once, but I’m not sure how easy it is to coordinate.
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I have to add: I find it really remarkable/funny/strange that there are a number of people who seem really frustrated with the decisions that others make about their dietary choices or health considerations.
I guess if it’s relevant to you personally (your MIL/friend/partner annoys you with their health issues), it makes sense, but I feel like @ClaudnDaye’s point about not stressing applies to other people using Dr. Google to diagnose themselves.
Really, if someone has decided to eliminate dairy/wheat/alcohol/cake/wtf-ever-it-is from their diet because it makes them sick, should it really matter to anyone else?
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Well I did add a consideration about “if it affects you personally” to my previous comment, realizing maybe it wasn’t people in general who pissed you off. 
And maybe you should just grab the donut from them and mail it to @docslotnick. We all know he can eat donuts with no ill consequences. 
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And here I’m going to reveal something I keep from most people…same here. I initially went gf without an official diagnosis. My blood test was repeatedly negative for years while eating gluten, though my endo suspected I had it, then I suddenly became symptomatic (sick after everything I ate). My sister tested positive for celiac at that time, and since our medical history so far had been identical (we’re not twins), we cut gluten out together. It wasn’t until a year later that a GI told me I should reintroduce gluten and do the biopsy. By that time it was clearly obvious I have celiac based on every item on the diagnostic checklist except the biopsy. My doctor agrees, and I’ve actually had a positive blood test since then, without eating gluten. 
You’re right that we shouldn’t judge others for their choices, even if/especially because we don’t have insight into most peoples’ lives. The only frustration I have with people who choose to not eat gluten as a “healthier” choice or from self-diagnosis is 1) it’s not healthier if you’re just replacing with GF processed foods; that stuff is so bad for you (and I say this as someone who still eats what I can of that stuff 
), and 2) the ones who go on and on about how they can’t have gluten, then “cheat” make those of us who can’t cheat look like we’re just being ridiculous to be so strict.
That being said, as someone who chose to cut out gluten without truly definitive answers at the time, I support anyone who chooses to do the same.
And also want to note I find lots of helpful information from Dr. Google; I’m just more careful about what sources I trust. 
For us the scope is available but is optional - the problem that we ran into is that he needs to keep eating gluten to get the scope but it was getting hard to get him to eat anything with gluten. The hospital we go to is in the process of moving buildings. We had a diagnoses last August but won’t be able to get in for the test until early next year - so all this waiting, us forcing gluten and him getting sick has just made us give up on the test.
We recently visited the endo and he says the scope is not really required. The tTG-IgA tests that our little guy had had came back as a very strong positive and we were told by the gastroenterologist that is a 99% chance of him having celiac. We can have an optional scope just in case we want 100% confirmation. At the time we said ok let’s scope, but as I mentioned we have given up on the waiting. Our endo said that another way we can get 100% confirmation of celiac is that we retest the tTG-IgA in a year after cutting gluten and if the tTG-IgA results are normal then you have the confirmation. That seems to be a more palatable solution for us.
I think @ClaudnDaye is in a different boat because Liam’s blood test results are inconclusive.
I know that personally I don’t care what people choose to eat. Whatever it is, good for them. But when they take the time to criticize what I am eating, or what one of my children is eating, in the context of what they choose to eat I get bothered.
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That is completely understandable. I would’ve had to start eating gluten again for weeks to do the biopsy (and with a newborn at that time); it just wasn’t worth it. I think if you have a doctor who is willing to put the diagnosis in medical charts for future reference (for school needs, in particular), it shouldn’t matter if you got the biopsy or not.
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I don’t get annoyed by people eating however they want, but I do think there’s a big trend in our society to inappropriately self diagnose themselves with actual medical conditions that they attribute their preferred diet to…
I think that is pretty spot on.
@Thomas and @Pianoplayer7008 - Thanks for the feedback on the endoscopy.
@thomas - Your story sounds very similar to ours.
Heard the exact same thing. 
Those tests and the fact that our 18 month old son was throwing up with gluten made us pretty certain. Our son’s favourite food was toast and he completely stopped eating it. Now his favourite food is toast of gluten free bread.