That’s right… YOU! Celiac disease awareness month is coming up in May, so I thought I would compile various answers from you and create different posts on a few topics relating to living with celiac disease.
I want YOU to share YOUR feelings about living with the disease… this way we can see we’re not alone!
The first question:
“The most challenging aspect of living with celiac disease is ___.”
Your answers will be published in a blog post in May and will be anonymous, so if you’re uncomfortable leaving a comment here, please feel free to email me (firstname.lastname@example.org).
If you don’t have celiac, but are a parent of a child…a spouse… a friend… etc… feel free to share what’s challenging for you!
I love hearing from you and building this great community with you! 🙂
Thanks for your help!
What bugs me the most is that people treat this as a joke, and call it a fad, a diet. It’s a way of life, not a diet, and they can’t seem to grasp it. I am tired of restaurants and manufacturers jumping in on what they consider a craze. Their staffs are ill prepared to deal with us properly. There are restaurants I no longer eat at because I have been glutened too many times. So far I trust Five Guys and Outback. Red Robin and Chik-Fil-A have made me and my daughter-in-law ill too many times. I hate hearing that I can get gluten free pizza only to find out it is prepared in the same place and using the same equipment. It’s not all bad though. There are great blogs like this one where we can talk, and learn new things. I have made lovely friends online that share my feelings, and we can vent or laugh. We laugh a lot, especially over doctors. I think one of us would know more about what celiac disease is and isn’t, than a trained physician would. We all have at least one doctor story! I am grateful for the people like your mom who really get it, and take the time to educate others. My mother never did get it, but my daughter and sons do, and are endlessly supportive. Despite the downsides, I have much to be thankful for. I am especially thankful for you. 😊
I agree with all of this! I hate how uninformed and overly opinionated others are regarding the matter. I can’t tell you how many times I’ve heard from people (often friends & family members) “One bite won’t kill you Kristina, I think you make it a bigger deal than it is”… ugh ya I hate that comment! Oh…and the doctor stories… yes, I have many of those! Thank you so much for sharing your experiences and I’m so happy we’ve been able to connect! 🙂
For me it’s the social aspect. Everything social revolves around food. It’s a hassle to have to make & pack food for myself & my son. I’m already incredibly busy & don’t need or want more work. I don’t look forward to or enjoy social stuff anymore. I used to really LOVE going to pot lucks & sampling all the foods. In all honesty I dread it now & will very often look for a way out if I can.
I can really relate to this Diane! Although I try to put things into perspective and not make it a big deal, I really do dread and often get anxious about social events that revolve around food. Thanks for sharing and it makes me feel better to learn that I’m not alone! 🙂
The most challenging (and frustrating) aspect of celiac disease for me has been the absence of finding good health care providers!!! Looking back, my body was out of sorts for years – but the last two yrs before a diagnosis were BAD! I lost a considerable amount of weight, suffered poor health and debilitating GI issues …. and after repeat visits to my physician and GI Dr – I was carelessly (repeatedly) sent away with “Its just IBS!” I KNEW that diagnosis was incorrect. I did my own research, approached my physician of 30+ years with the request for a celiac blood test! Positive! The endoscopy that followed confirmed my small intestine was extremely damaged due to celiac disease! Two doctors missed this – and one was a GI specialist! After 8 months on a GF diet, and still feeling pourly – MY research suggested a celiac should have thorough blood work! Again – I had to ask!!! MY Inquiry revealed I was VERY low in B, D-3 & folate which necessitated supplementation. The last two years, prior to a diagnosis, I suffered serious and repeat sinus infections which I feel was celiac/auto-immune related. This is ongoing. Repeat use of antibiotics is the last thing I want to do – but none of the doctors/specialists are willing to look at the celiac link. Where does a celiac sufferer find knowledgeable medical help and medical support (an informed physician!)? (Feedback welcome!!)
Next struggle would be the social aspect – so many gatherings/relationships/social activity involve food! Along with that …. I have been hesitant to resume traveling with my friends and feeling confident I will find safe food!
I think the celiac community would benefit from a support group – a place to share information and offer support and education.
Thank you! Rant over! 😉
Linda you are so correct. I was sick my whole life yet not properly diagnosed until age 40.
When I was a child my mother took me to the doctor many times. They couldn’t find anything & truly believed my mother or I or both were nuts.
When I was an adult I tried again & was told I have IBS & I need to drink more water. Anyone that knows me knows I drink tons of water. Such a joke.
Finally I became severely weak & ill & truly believed I was dying. But I was fighting for my son’s sake. Medical research is something I’m pretty good at & I came up with celiac. I wasn’t too sure though, but didn’t want to ignore it if it might be true. I went gluten free & a few weeks later accidentally ate Gluten & I saw how severely it affected me. I then went to my doctor & still had to demand to be tested. They could only do a blood test because I was already gluten free & there is no way I could tolerate enough gluten to do the endoscopy/biopsy.
And I still struggle with issues related to all the damage that was done. Deficiencies, etc. and it’s so hard to get help. I finally found a great naturopath that is helping me.
I can relate to you both so much Linda & Diane! I went to countless doctors and they always said it must be IBS because I “looked” healthy. At home I mainly ate fresh, whole foods so I knew it was food related since I mainly got sick when I ate out and then the doctor told me it must be social anxiety. So frustrating! If it wasn’t for Dr. OZ (I saw a segment on his show about celiac and I had all the symptoms!) and my mom who is a nurse and wouldn’t give up until we found a doctor who would listen, I would still be suffering! I agree that having a support system of other people living with celiac disease is helpful since only we can really relate to each other!
It impacts every aspect of your life! How you shop, how you look at food, how you cook, bake, etc. Also, meeting friends for drinks and a quick bite to eat is now strenuous. Every time I eat out, I am so scared that I was exposed to gluten and will get sick. Most people are understanding, but it’s hard to feel different and have to ask for special treatment…..
I agree and can relate to all of this! Thanks for sharing Laura!
Hi the most challenging aspect prior to disgnosis was the neurological impact – the brain fog, dizziness, loss of concentration and profound fatigue – I truly thought I was dementing and didn’t feel safe to drive at times. Since diagnosis 2.5 years ago it’s been trying to heal and normalize my titres to no avail even though I am fanatic about no gluten or cross contamination. Now diagnosed as refractory celiac. Neurologically much better but travelling and social events at others’ homes or restaurants are challenging. Oh well life sucks sometimes and then you just move forward and learn to work with what you have. Thanks for asking.
I have been experiencing daily the debilitating and grueling pain that comes with this terrible condition.
At times I am so ill I am sweating and shaking and in so much pain that you literally can’t do anything in the way of giving up.. You get really anxious and then you do what you know. And then you catch the episodes before it is in full force.
I was registered massage therapist and I must tell you that I have been thankful for the education that I learned regarding massaging the stomach. For example and very important. You would massage from the right side to left. If you had your own hand just inside your right hip(groin area) using fingers do circles clockwise up to ribs then using 4 fingers under your ribs pull lefthand across dragging fingers and then down on the left. This has helped me every time. In a way it’s like burping a water bed.. In other words you are helping move it along.
You know that thing called Relief.. Oh dear Lord sweet relief. I have episodes that come when I get too warm or if I am doing something and I am bending at my waist for too long. Now I kneel down.
I have always been an active person. I do make ready cleaning and staging for new construction homes. Sometimes I have to really go quick to make deadlines or I maybe vacuuming a 4000sqft home.. Anyway if I don’t pay attention to my body and take shortbread.. I am in pain and losing time. I love reading what every one has shared, because we suffer and need more than to hear it’s in your head. I know that stress or nervously hurrying will only set you up to be in pain.
OK, I do want to share.. I get my ice pack cold ice water to drink and a fan…
This is my ritual for survival.
And proper breathing is a must. Deep breath through the nose and out through your mouth. It is hard to do when in terrible pain. But the sooner I can do that as I do my stomach massage the sooner I recover
I’m also drinking my water. I can’t do the warm shower for relief because it makes me feel worse. I try not to scrunch over because I end up with my stomach in spasms. That is when I sincerely say Lord please help me I can’t do this anymore with my head going back and forth right to left and focus again on the Lord and my way to help myself.. As I am in the bathroom in pain typing this.
If you get tense with spams the massage done slowly and where it is hurting from spasms apply some pressure and release a bit and again pressure as you move rt to left you (breathing through it
You will find that sweet relief or just kidding.. Gave birth.
Thank you for letting me share
And yes the wet wipes and yes I found that Epson salts helped me too
I think the proper throne is a must.
I think they should be custom made.
I took have struggled to the point that I have made myself bleed
So now I am very careful about straining. I have to see a doctor soon because I know that I have some damage to my small intestines.. I have always been asked didn’t you know that you were hurting. Yes I thought it was going to get better. But it is worse.
Take care and know that I emphasize and I wish that no one to be in pain