Annoyance With Fad Dieters

[c.reez]

Caveat, this is a post intended for people diagnosed with celiac disease. I have some venting to do and I would really appreciate your input:

 

I am frustrated by people who choose to be gluten-free because it makes them feel "less tired," "more active," "less cloudy," yet they have not had blood tests, or if they have, the tests have come back negative, therefore no need to follow up with an endoscopy. What if it's actually depression,  actually a wheat allergy, or actually symptomatic of how big agra is produced.  Being diagnosed with celiac disease is just a difficult transition that I don't feel like the opt-ins can relate to; such as, when a tiny breadcrumb in my restaurant meal inflames my villi, sometimes without me even noticing.... they dont have to worry about that! And, yes, I even have friends who choose a gluten-free lifestyle.

 

But for some people, this is a choice, and they have the money to buy gluten-free food all the way. And for others like myself, this is out of my control...as was the Graves Disease diagnosis at age 12, the depression, the ADHD, arthritis, tendinitis, radioactive iodine treatment, not to mention how utterly irritable I have been towards my family for the past 15 years...some of these diagnoses were misdiagnosed symptoms of my celiac disease. Therefore it really bothers me when people in other online fora, like Yelp or Urban Spoon,  toss around the term hypochondriac for people who stay away from gluten when really there is physiological and neurological evidence supporting the benefits of a gluten-free diet to a person with celiac disease.

 

I'll admit, I attribute the trend of restaurants having gluten-free-friendly menus to the increasing number of people with "gluten sensitivities" who ask for alternate menus. However, gluten-free-friendly is obviously not devoid of cross-contamination, and I think the clumping of these various diet choices people make muddles how servers and chefs from cheap to expensive restaurants comprehend the necessity of being mindful towards people with a "celiac diagnosis" above all. 

 

Someone, please point-counterpoint me. This anger needs to subside. Right now, 5 months into my diagnosis, I am fed up with hearing people talk about how they're staying away from gluten because it "makes them feel off." It's like, girl, you dont even know. 

[LauraTX]

Welcome to the forum, C.Reez!

 

I made your reply to this thread into this new post, since it is its own topic that we can all relate to, and that thread dates back to 2007.  That way you will get more people in to read and converse.  This is an issue that all people with Celiac disease can relate to.  People with Celiac disease are plastered with the hipster hypochondriac label when we go out to eat and ask for a gluten-free menu.  The waiter will start talking about their healthy choices because they don't realize we have no choice in the matter.  Sadly, these attitudes are not going to change any time soon.  It seems the gluten-free fad diet trend is already starting to fade, and I will be glad when it is well past its prime.  All we can do is participate in and contribute to some of the Celiac disease organizations who are out there doing awareness campaigns and working towards legal solutions, etc.  We can also take opportunities to speak with people like waitstaff and get them to understand the difference between Celiac disease and someone making a diet choice that they read a celebrity did.

 

I have met people who eat gluten-free, spew all the silly nonsense that makes it obvious they are not taking it seriously and it is not benefiting them, and it makes me PO'd as well.  You just can't dwell on it though or it will take down your quality of life.  Having an illness that people cannot see from the outside is a uniquely frustrating experience and it can be a hard thing to deal with.  I look forward to the time when the fad diet thing fades.  

[Nikki2777]

It's the upside and the downside - the upside is there's this wonderful new market created by these people for prepared foods and menus that you and I can benefit from.  The downside is that chefs, waiters, etc., don't take the risk of cross-contamination seriously and that there are eye-rollers out there who just don't get that I'd LOVE to not have to eat this way.

 

I've even found that my old stand-bye of telling a waiter I'm doing this for MEDICAL reason (and this is why they need to be extra careful) and not just for the diet can backfire - as when a recent waiter then answered me that well, his wife is gluten free for diet reasons so he 'gets it', but I could clearly tell he thought I was making fun of her.  Hope he didn't spit in my food ;-)

 

For now, I just choose to be grateful that these people have motivated business to provide gluten-free foods, Certified gluten-free labelling, menus and training, and motivated government to respond my codifiying labelling rules.

[cyclinglady]

Well, I understand your frustration, but I am thankful about the gluten-free fad. I have been only gluten-free for 2 years, but hubby has been for 14. There are so many products available and labeling is much clearer than 14 years ago. Hubby says he gets less glutened as a result. He can at least travel and grab gluten-free foods and not starve! Mind you, it is not the best food selection always, but it is nice that you can find gluten-free sections in grocery stores and restaurants who can correctly cater to the gluten-free diet. We attribute that to the gluten-free fad.

As a person who has been misdiagnosed for years or brushed off by doctors as (It's all in your head!), I empathize with those struggling to get a diagnosis. If gluten-free helps, then I think they should do it (even if it is a placebo effect as the mind is a powerful healer).

I think the best thing to do on review websites that describe gluten-free menus is to identify yourself as a person with celiac disease. It will certainly help the next person with celiac disease, make an informed choice!

I hope you feel better soon!

[nvsmom]

I get frustrated by those who are supposedly gluten-free but don't worry about the crumbs, or soy sauce, or eat the turkey stuffing because it looks so good.  Those are the ones who get to me because they make it harder for people to take my needs seriously, since they don't take it seriously themselves. If they want to eat gluten-lite, that's fine, but don't talk about eating gluten-free and then reach for the bread basket.

 

If people do want to eat gluten-free, I'm all for that. Really, humans aren't supposed to eat a lot of grains.  That started only 10 000 years ago.  We should be eating mostly meats, veggies and fruits... it's not as tasty, but I believe that.  If eating gluten-free makes them feel better, then I assume it is NCGS (non-celiac gluten sensitivity) and consider them smart to have figured it out.  I've talked with some with NCGS whose symptoms were worse (at least in the short term) than mine.  NCGS can be quite nasty, and every bit as bad as celiac disease minus the intestinal damage.  I think celiac disease may be just another manifestation of  a gluten sensitivity, and intestinal damage is one of our symptoms... That's just a guess and opinion though.

 

Try to think of the gluten-free diet like eating low sugar and carb.  Most people could benefit from this diet even though they don't have a diagnosed medical condition calling for it.  Many people are trying to eat low sugar/carb but will order dessert once in a while, similar to how a gluten lite person doesn't worry about contaminated butter.  Diabetics do need to eat this way though, and need to stay stricter than I am.  KWIM?

 

Hang in there.  This diet craze will eventually die down.

[LauraTX]

....

I think the best thing to do on review websites that describe gluten-free menus is to identify yourself as a person with celiac disease. It will certainly help the next person with celiac disease, make an informed choice!   ....

 

This!!! This is sooo important.  If you use the review sites, post your own reviews identifying yourself as Celiac to pay it forward.  Thanks for bringing that up.

[notme]

at a dinner meeting...

 

she (as i am unpacking my dinner from home):  oh, i hear you have - what is it? -  celiac?

 

me:  yep.  that's why i'm brown baggin' it...

 

she:  oh, yeah, i know.  they said i have that, too.

 

me:  then, why are you eating a ROLL....

 

she:  oh, i could never follow the diet.  it's too hard.

 

(as she waves the roll over my food - i am desperately trying to cover/move my dinner..........)  

 

on the other side of the coin, we have a new member at church who (i've not found out whether she has silent celiac or ncgi or wheat allergy)  has to follow the diet strictly (she has neuro symptoms) and SUDDENLY my whole church is "psst.  you're the only one who can make a cake for her"  i am secretly like loving the misery/company thing.  i make an extra sandwich and bring a piece of cake or whatever for her.  we have commiserated on the communion dilemma and during church we wave our snackie bags with tiny pieces of bread for safe communion time  makes both of us feel a little more 'normal'

 

and the third side of the coin (lolz) at least once per week, some poor soul pulls me aside and tells me how terrible they feel - sounds like they may have symptoms (most memorable was the young woman who felt fine until she had her first baby - bells and whistles, people!)  but they DON'T HAVE IT CHECKED!!  i'm like:  you *could* have it.  you *could* be feeling better if you followed up.  nope.....

[bartfull]

I for one am loving the "fad" because in my tiny town, it used to be the only place to get gluten-free substitutes was at the health food store. But now one of my local grocery stores has a nice gluten-free section with all kinds of great foods. (several breads, baking mixes, cookies, crackers, and lots of other stuff.) If not for the fad I doubt they would bother. They are trying to cash in on the popularity of gluten-free and it makes my life both easier and less expensive. I can only hope that when the fad dies down they keep the gluten-free section.

[sweetsailing]

I live in a major city and my non-health food grocery store also carries gluten free flours and items.  However, there is no way I would buy my gluten free flour there.  Their shelves are a mess and there is regular flour just above the gluten-free flours dripping it's gluten all over...I am happy they carry gluten free flour but they really need to change where they put it and what they put next to it.

[dania]

@notme! - I'm just curious why you said feeling fine until you have a baby is a red flag. Does celiac disease often get activated after a pregnancy? It seems like that's what happened to my mom. After she had me, she had extreme fatigue, ferritin plummeted even though before she had great irons store, and so on.

[nvsmom]

Yep!  A trauma to the body can trigger celiac disease, and we all know pg is a bit of a trauma!  LOL

[Patt]

I can appreciate where you are  coming from. But it is thanks to these same people that we now have more restaurant options and substitutes! I may not have as severe symptoms as others but It deff bothers me (and the rest of my family subsequently)

Being that I feel no one understands my frustration, I don't think I have the right to judge another's symptoms as more or less severe

Yes it gives me brain fog. but I cannot go to work with brain fog or even drive anywhere. I have come so close to hitting pedestrians, going over cubs, running red lights to name a few just because I cant snap out of it.

Keep your stick on the ice. Were all in this together

[SMDBill]

I may be one of those people the OP gets frustrated with, but my trip through wondering if I had celiac or a sensitivity to gluten taught me a lot. 3  years ago (I think), I went through some terrible intestinal trouble and a host of other symptoms. I avoided the doctor and tried to figure it out myself. I found out about celiac and gluten sensitivity and decided to try going gluten-free to see if it helped. It actually cured 21 symptoms that I documented for my GI to review when I finally went to get checked. I learned there that going gluten-free screwed up his ability to diagnose correctly, but I had only been gluten-free a few days so he did an endoscopy right away. He found an ulcerative spot in the duodenum, but no other issues. Motrin use was the cause of that due to migraines and daily headaches. He ran a full celiac blood panel, which was too late to be effective or accurate, but he wanted to rule out the possibility. From there he did a colonoscopy, which was clear. His ultimate diagnosis, based on no evidence and only symptoms that had cleared due to being gluten-free, was gluten sensitivity.

 

My GI recommended I go back on gluten and if it caused me issues, remain gluten-free forever. He was confident I didn't have celiac because the damage would have still been evident on the colonoscopy when it was done. So I went back on gluten and felt fine. I didn't feel sick, no pain, so I stuck with eating a normal diet. But over time those symptoms have returned, such as hard bumps in the inside arch of my feet, rashes in the same location, very dry elbows, brain fog, joint pain, intestinal pain that brings me out of a sleep or curls me into a fetal position, frequent restroom usage, frequent diarrhea, constant sinus drainage, frequent clearing of throat due to sinuses, frequent sneezing, snoring loudly, lack of energy, stiffness when going from sitting to standing, and others.

 

2 days ago I went gluten-free again and my bowels no longer hurt constantly, my joints don't hurt when I move, my back pain is nearly gone, my brain fog is probably about half as bad as it was, and my energy level is very high. Only 2 days in, this could be my mind and not actual improvement, but I recall last time it took 3-4 days and I felt like a new person. I didn't go gluten-free just to join a fad, nor to be different or gain attention. It's a difficult way of life to adapt and stick to, and I only stopped at the request of my doctor. I had been true to being gluten-free and never caved to eating food containing gluten. This time, if my symptoms continue to improve, I'll be one of those gluten-free people who can tolerate gluten to some degree, or at least for some short duration of time, but my body is obviously telling me to stop eating it. I don't know if there are others like me, who may not feel symptoms right away but eventually see many, but it's a choice to be gluten-free. The alternative is pain, fatigue, discomfort, bathroom trips, sinus issues and skin issues. If my situation is disruptive in some way to those with celiac, I do wish nobody had to suffer with it, but being gluten-free is now a necessity for me as well. I am also medicated for migraines, but I wonder if being gluten-free for a long period will allow me to stop taking medication for something that could be caused by my body's reaction to gluten. Time will tell.

[bartfull]

You may very well have actual celiac. It is the endoscopy, not the colinscopy that is used for diagnosis. The doctor takes biopsies of the small intestine. And because the small intestine is so large and the damage is often spotty, he may have missed the part that was damaged.

 

But even is what you have is gluten sensitivity, it makes sense that your symptoms have improved on the gluten-free diet. And you may well find that the headaches improve over time. I hope they do.

[c.reez]

Hello everyone,

OP here. It’s been 3.5 years since the diagnosis, 3 years since the above rant. Wow, time has flown. 

Thank you all for listening, for your thoughtful kind responses. I’m in a much better place now with the diagnosis... and reading my OP was kind of amusing, gosh I sounded so angry. Lol. I stand by my feelings on the gluten lite fad though! But I’m not actively angry about all the minutiae anymore. I’m grateful for my gluten-free grocery store items, I order myself that nice gluten-free Italian pasta over the internet from time to time, I’m more restaurant savvy, I’ve got some sweet cookbooks.

Reading your comments, y’all have motivated me to do my part to contribute to sites like findmeglutenfree.com, and add reviews on Yelp,  because that type of stuff has been a lifesaver for me.

A good day to you all!