When you feel like you just don’t belong. Non celiac gluten sensitivity

[JustJ]

Hey everyone,

I am a 26 year old from the sunshine State. this is my first post on here. I’ve dwelled on the idea of posting about this but I always seem to chicken out. I was diagnosed with non celiac gluten sensitivity earlier this year (2018). While i have found tons of support and guidance from other websites such as this one, I still can’t shake this feeling of not belonging. What I mean is... although I’m allergic to gluten and have to follow a strict celiac diet , I find it hard to relate to other celiacs due to the slight differences in our diagnosis. I have also struggled to find support from other non celiac gluten sensitive people as I just can’t find any forums or support groups. 

Being glutennfree can be very lonely at times even when you have family and friends who support you. I just wish that I could find a little more support for those days where life just seems impossible. Does anyone else feel this way? Does this feeling ever go away?

So here is my attempt at finding all you other non celiacs out there. 

❤️Sending love to you all from FL! 

[Bree J]

Hi! Im 23 and feel similarly! 

 I tried to get tested for celiac, but the doctors that I had access to did not know how to diagnose it or test it correctly, so I am unable to officially test myself for celiac, but honestly I believe it's possible that I have it. Maybe I'm like you, and I'm just a non-celiac gluten intolerant person, but you know what, that's not JUST anything!

Living gluten-free is hard. Living strictly gluten-free is even harder. For years I just ate generally gluten-free, as in not eating noodles and bread, but not worrying about the sauces or seasonings I ate. It wasn't until I actually found this forum and read other people's symptoms and stories that I decided to be even more careful, just like a Celiac person. and even if I'm not a quote-unquote true celiac, eating like one has made me feel loads better. Even if I'm just allergic to gluten, or whatever you want to call it, I have done the work to accept my body as it is. I felt just like you for a really long time, really confused and feeling like I didn't belong anywhere, feeling like I wasn't allowed to say I was a Celiac, but feeling like a joke when I just said I don't eat gluten, just because of the preconceived notions of it in our society lately.

 I see a licensed therapist for unrelated reasons, but I brought up to her that I had been really struggling with the idea of Whether or not I'm Celiac and whether or not it mattered. The main thing I struggled with for a while is what to say to restaurant staff, people who were hosting dinners, or people at parties that would ask me if I why I'm not eating certain things.  long story short I decided that it's okay for me to start with the words I am allergic. Or even it makes me very sick. I was worried that I wasn't allowed to say the word Celiac, and that it would be the only word that would work. But I found that not to be true. I'm a master's student in communication, and I know how important language is. In the past couple months I have found that the word allergy brings just as much attention to a strict diet as the word Celiac does. So that is the one word that has made me feel a little bit more like I belong.

Trust me, I have always been worried about what other people think of me. But with the help for my therapist, I have begun to realize that what I feel in my own body, the reactions I get from certain foods in my own body, the price I have to pay in my own body for what I eat or what I can't emanate my food with, that's my own thing. No one will ever understand it, even if they know and understand the words Celiac, no one will ever understand your exact case, your exact feelings, your exact reactions. So who cares if you're not celiac. You still have what I like to think of as a disease. Not that that's a great thing or anything, but it does mean that you have something special about you that you know how to take care of. You are unique. Don't let anyone take that away from you.

 

[apprehensiveengineer]

On 7/27/2018 at 8:58 AM, JustJ said:

Hey everyone,

I am a 26 year old from the sunshine State. this is my first post on here. I’ve dwelled on the idea of posting about this but I always seem to chicken out. I was diagnosed with non celiac gluten sensitivity earlier this year (2018). While i have found tons of support and guidance from other websites such as this one, I still can’t shake this feeling of not belonging. What I mean is... although I’m allergic to gluten and have to follow a strict celiac diet , I find it hard to relate to other celiacs due to the slight differences in our diagnosis. I have also struggled to find support from other non celiac gluten sensitive people as I just can’t find any forums or support groups. 

Being glutennfree can be very lonely at times even when you have family and friends who support you. I just wish that I could find a little more support for those days where life just seems impossible. Does anyone else feel this way? Does this feeling ever go away?

So here is my attempt at finding all you other non celiacs out there. 

❤️Sending love to you all from FL! 

Did your doctors rule out celiac disease definitively? To do so, you need to have negative serology (while eating gluten), negative biopsy (while eating gluten), and negative HLA DQ type. The essential part of NCGS is that is is... non-celiac, ie. celiac disease must be ruled out definitively. Simply lacking a celiac disease diagnosis is not the same as the disease being ruled out - many people lack a celiac diagnosis because they have never been tested while eating gluten, and/or have atypical presentations that are not as reliably picked up by current diagnosis modalities (DH, gluten ataxia).

Unfortunately, many doctors aren't very diligent in ruling out celiac disease to an adequate extent, meaning that many who are told they are NCGS could have celiac disease. Some studies estimate ~20%! If you look at the literature on NCGS, it's pretty apparent that it's a non-homogenous patient group - some people with NCGS seem fine as long as they don't eat copious amounts of gluten-containing foods (no CC worries), while others seem to need to be celiac-careful to avoid symptoms. It is my opinion that many of those in the latter category have probably been misdiagnosed, since the evidence for such a scale of immune response is weak at best.

Not sure if any of what I've said makes you feel better, but rest assured you're not alone in feeling the way you do. I myself am in the "no man's land" between celiac disease and NCGS, as I was never tested while on a gluten-containing diet (due to incorrect advice from an MD), but have a positive HLA type/many other close family members with AI disease (meaning that it's quite possible that I do have celiac disease). Many people on this forum are in my boat, and I've found good advice here.

[Geoff01]

Hi Bree and JustJ. I’m the same! Never been formally diagnosed as celiac. But boy do I get sick when glutened. The gut reactions came on as an adult. 50ish but I’ve had neuropathy in my legs since I was 25. Although it has progressed slowly, no doctor has ever worked out the cause. My sister is a diagnosed celiac and many of my family have been undiagnosed celiacs ( bowel cancer, always sick - IBS, Alzheimer’s). I have HLA DQ 2.2 but was never tested while eating gluten. I got sick and stopped for 6 months before I realised I needed the gluten challenge. Never been game to make myself sick for 3 months to do it.

Gluten Sensitivity is a genetically modulated inability to digest gluten and similar big proteins.  It is an Auto-immune condition. I don’t like to call it a disease or a disorder. We have the original human genes. Everybody else has mutated genes that allow them to digest a poison.  

There are a range of gluten sensitivities and celiac is only one expression. Gluten can affect the brain with white holes that affect cognitive skills and may bring on Alzheimer’s and MS in some cases. It can specifically affect the cells in the medulla and cause gluten ataxia, it can cause schizophrenia and various mental illnesses, it can affect the skin (dermatitis herpetaformis) with symptoms that look like dengue or measles, it can affect the long nerves in the body causing neuropathy in hands and feet, it can affect the thyroid (hashimotos disease) and there are another 300 related and unrelated ways that gluten may damage our bodies as well as diarrhoea, constipation etc. Many of these symptoms may occur at the same time. COELIAC IS NOT THE DEFINING SYMPTOM OF GLUTEN SENSITIVITY. It is only the first one recognised and codified. Coeliacs are gluten sensitive as we are and are part of the gluten sensitivity spectrum.

Gluten specialists such as Mario’s Hajivasilliou are now saying that more gluten sensitive people have neurological problems than any other and they would class gluten sensitivity as a neurological disorder rather than a GI one.

hope this helps...

[Rob S.]

Bree,

 

I am also in Florida.   I was diagnosed 2 years ago. The first few months were the worst. Trying to find out where to get things, which things were OK, which restaurants can help, etc. Once those issues are sorted, it gets much easier and more enjoyable.

It takes some people time to understand why gluten is so harmful to us. However, those people have ended up making a gluten free meal for me. 

I travel a lot. I bought a NIMA unit. Initially, I used it to test everything.  You get to know the companies that consistently delivery on their promises. I use it when I go out and it really helps. Just having it and politely letting the waiter know that you need to test it with this cool thing has flushed out more than one chef from the kitchen or manager who then took the necessary steps or admitted it could not. 

In other words, the concern about eating properly never goes away, but it gets easier to deal with.

Remember, as troubling as this is, there are many people who we happily trade their problems for ours.