Four Months In And Feeling Alone

[mollydee88]

Hi everyone,

I was diagnosed 4 months ago, and even though my body feels great most of the time, mentally I'm not doing so well. I already suffered from an anxiety disorder, and I feel like this has made it come back in a major way. Mealtimes make me nervous and as the holidays and the birthdays of some close friends approach, I am feeling like a paranoid burden. I wonder if every health symptom means I have been exposed to gluten or am starting to have another autoimmune problem. How do you cope, especially when other people don't seem to take you seriously? How do you avoid panicking over any physical sensation. I feel better just finding this forum and knowing there are other people like me out there.

[mushroom]

Welcome, mollydee, and you have done what we all do to cope -- we come here This is the place where you will find folks who understand what you are going through, have been where you are, shared your doubts and anxieties, suffered the mealtime rejection feelings, worried about cross-contamination or other autoimmune problems or even if they will ever get better You are among friends.

On here you will learn that your anxiety disorder was most likely caused by gluten and that it should get better, you will find ways of coping with family and holidays, ways to be firm with friends about what you cannot eat. You will learn that patience is not only a virtue but something you must cultivate when it comes to healing, and you will learn that not everything is related to gluten, and not everyone in the world is a celiac or gluten intolerant

Make yourself at home here and take a wander through the rooms - you will find a wealth of information from recipes and shopping lists to coping strategies, and even a place where you can talk about things other than gluten.

[AVR1962]

I think what you are going thru is a very common and understandable feeling. I am 6 months out and have been glutened so many times with mistakes (which teach me to be more careful) that I too have feared that anything I eat could be potentially dangerous. However, while we all aim to never have gluten in our life and to never have to go thru the pain of ingesting it, all we can do is read and do our best to be careful, make what we think are safe choices while we are out espcially and realize every day is a learning process.

Personally I have made several mistakes without even thinking and later kicked myself wondering why it never accured to me but I can say I am learning from those mistakes. There for awhile my diet seemd so limited and I would look in my fridg and feel like there was nothing I could eat but I started experimenting with some gluten-free foods, replaced my four and started making my own baked goods, looked up recipes and as I did this it opened my world of eating in a different way.

I am still very cautious when I go out to eat and feel many times I really don't have alot of options so I actually eat more at home than I ever have and that's okay, it saves me that $ that I can use for something else.

Hang in there!

[GlutenDude]

It's a process. Give yourself time. Four months is nothing. I'm five years in and honestly I think I am finally coming to grips with everything. It's a strange disease that only people who have it can truly understand it.

[BeFree]

"On here you will learn that your anxiety disorder was most likely caused by gluten"

I feel like my anxiety has lessened since going off gluten. What was funny was, for a few days I started to feel very anxious, and when I woke up in the morning I was feeling like I was going to have a panic attack. I found out I had accidentally bought nuts with trace amounts of wheat in them and had been chowing them down for the past few days. I immediately stopped eating them and then felt calmer. I do think there's a connection. Everyone heals at different rates but I do think your anxiety will lessen with time.

[TTNOGluten]

Mollydee,

I feel your pain, I am just a couple of months into this, and unlike you, feel absolutely terrible, everyday is a struggle to get out of bed and move forward, constant abdominal pain that I wonder if it will ever get better, and fatigue and anxiety, so dont' feel alone, I often feel like I am on an island and that no else understands the nature of how lousy it can be. I hate to complain, and even though I have alot of support I have withdrawn to just my house with my kids and wife, which thankfully is all I need right now. I am glad to here your physical symptoms are well that to me seems like half the battle, I think if my belly demons would stop I would be back the happy guy I was before. Patience is not a virtue of mine, I wish so badly it was..

Hang in there, and although I am not a extremely religious person, I will say a little prayer for you!!

[Jenniferxgfx]

I'm 4 months in too! (in a week.) we're like celiac buddies

I had a nice appointment with my allergist yesterday, and I asked him about my numb hand every time I'm exposed to gluten. He said from an allergy perspective he had no ideas, but to make sure it's not something else, and to try not to blame the gluten for everything right off the bat. It's easy to do, and I always do it, but he's right. Gluten is the source of a LOT of my problems but it's not always going to be gluten.

But also? It's hard not to think about this all the time. I'm really deeply affected emotionally by this situation. The very basis of my culture's diet is the same thing that was literally killing me. That's heavy stuff and hard to wrap my head around it. I think it'll get easier as I accept it for what it is and get on with my gluten-free life. But this is more than an illness. It's an illness that really thumbs its nose at our culture! So there's more to it than just learning to be glutenfree, I think. I feel like I'm learning how to navigate to world all over again.

I'm sorry if I'm too philosophical for this time of night.

[Skylark]

Hi and welcome. If the panic gets bad, I use an acupressure/tapping technique called Emotional Freedom Technique (EFT). I don't know why or how it helps, but it does. It's somewhat better than EMDR. Open Original Shared Link explains what it is. They've gone commercial but you can still get the original free manual here. Open Original Shared Link Gary Craig did NOT want people to have to pay to learn this, but he retired and the folks who took over started trying to make a quick buck. Don't feel bad about downloading the free one. I think there are also some free tutorials at EFT Universe but I learned from the old manual.

As far as other people, you can't be a slave to what they think. YOU must be the one to take your health seriously. I find it works best to minimize talking about health in general. I have a friend or two to whom I can vent (they also need a friend to talk about health problems) and otherwise I don't make a big deal of it.

If a friend has a birthday, I take them out somewhere with a gluten-free menu. Holidays ARE tricky. The best bet is to entertain in your home and cook naturally gluten-free food. You can do a full Thanksgiving spread gluten-free with cornbread stuffing, gravy thickened with arrowroot starch, and a gluten-free gingersnap crust for the pumpkin pie. Nobody will even notice the lack of wheat. For Christmas, make candies rather than cookies to give away. There are a lot of easy fudge and truffle recipes that start with melted chocolate chips. There are lots of naturally gluten-free Christmas dinner options.

[saintmaybe]

I'm 4 months in too! (in a week.) we're like celiac buddies

I had a nice appointment with my allergist yesterday, and I asked him about my numb hand every time I'm exposed to gluten. He said from an allergy perspective he had no ideas, but to make sure it's not something else, and to try not to blame the gluten for everything right off the bat. It's easy to do, and I always do it, but he's right. Gluten is the source of a LOT of my problems but it's not always going to be gluten.

But also? It's hard not to think about this all the time. I'm really deeply affected emotionally by this situation. The very basis of my culture's diet is the same thing that was literally killing me. That's heavy stuff and hard to wrap my head around it. I think it'll get easier as I accept it for what it is and get on with my gluten-free life. But this is more than an illness. It's an illness that really thumbs its nose at our culture! So there's more to it than just learning to be glutenfree, I think. I feel like I'm learning how to navigate to world all over again.

I'm sorry if I'm too philosophical for this time of night.

I really agree with you that "normies" , can be deeply disturbed by our disease and diet. I've had CANCER survivors be, if not rude, at least surprised and taken aback at the diagnosis and the diet restrictions. You'd think they would understand, at least on a fundamental level, about your body attacking you.

Anthropologically, not eating wheat for whatever reason really hits people where they live. It can profoundly upset them, on a very deep level. I thinks that's something we, as celiacs, also need to appreciate when we're trying to communicate with the larger community.

[BeFree]

"Anthropologically, not eating wheat for whatever reason really hits people where they live. It can profoundly upset them, on a very deep level. I thinks that's something we, as celiacs, also need to appreciate when we're trying to communicate with the larger community."

I haven't figured out how to explain this to my mother yet (which I'll have to do before Thanksgiving). I know she's going to have a hard time understanding it, and she's going to be upset thinking that I am starving myself or depriving myself of nutrients. (She is the old-school, clean your plate and eat your Wheaties type of mom.) I'll have to get her to understand that the possibility that I have celiac has to be taken seriously. It's something that's hard for people to understand when they're not actually experiencing it.

[Di2011]

Anthropologically, not eating wheat for whatever reason really hits people where they live. It can profoundly upset them, on a very deep level. I thinks that's something we, as celiacs, also need to appreciate when we're trying to communicate with the larger community.

A couple of months ago I dropped into a health food store and the owner was this wonderful French woman (I live in Canberra, Australia). She had to give up caffeine many years ago whilst still living in France which she said was a very difficult thing to do given how important it is to their social culture. She also had another food allergy which took more than 10 years to resolve! She wasn't at all down or negative about it though - which made me so much more positive. I still think of her every now and again when I'm feel hungry or down or looking into the fridge/pantry wonder what I might/should/shouldn't eat today or wonder when I might be able to wear something other than long sleeve and long pants/skirts to hide the skin ! She is gorgeous and one day I hope to look and feel that good too.

[Marilyn R]

"Anthropologically, not eating wheat for whatever reason really hits people where they live. It can profoundly upset them, on a very deep level. I thinks that's something we, as celiacs, also need to appreciate when we're trying to communicate with the larger community."

I haven't figured out how to explain this to my mother yet (which I'll have to do before Thanksgiving). I know she's going to have a hard time understanding it, and she's going to be upset thinking that I am starving myself or depriving myself of nutrients. (She is the old-school, clean your plate and eat your Wheaties type of mom.) I'll have to get her to understand that the possibility that I have celiac has to be taken seriously. It's something that's hard for people to understand when they're not actually experiencing it.

I never knew that I was "lucky" that my mom had celiac disease, and all of my siblings seem to understand it. Funny thing is, my Mom couldn't be compliant, even though she was an R.N. So I get what you're saying about the anthropology of it. She was 100% dutch and grew up on wheat, we had it in one shape or form for every meal. I don't know if it would help to send her any of Dr. Peter Green's articles ahead of time (is she a reader or not?) (Google Dr. Peter Green if she's a reader...)

I will say that my mom was very P.O. at me for not telling her when I was really sick. I think the sooner you have a conversation about this, the better. That will give her some time to digest it and work around it if she's inclined. Do NOT surprise her at the last minute. That will be a recipe for disaster on all accounts.

(All that said, I'd still take my own food if I could.)

I think she'll want to do what's best for you.

[MinnesotaCeliac]

There is something to be said about the comfort of others that share your condition (thanks everyone). I'm three and half months in and am very careful not to be glutened (almost to the point of being OCD, oh my poor wife, but she has been amazing). I had no problem accepting my diagnosis and with buying in to what I needed to do to be healthy and even found myself excited that this might explain issues that I have had over the years (Migraines, anxiety, aches, brain fog...etc). I think I'm hitting a wall in the fact that NOT everything may be celiac related (oh darn I was hoping all my issues would resolved). Sure I have anxiety, because if celiac is not contributing to it directly, learning a new way to live certainly will. We'll all have the emotional roller coaster. I think one has to allow themselves the self-pity every once in a while, but knowing part of growth is struggle. My fear for most people is getting stuck there (myself included). Just know you can be healthy and you are in control. Mentally right now I'm anxious, because I will be traveling for the first time (cruise) and will need to rely on others for my food. I'm looking at this as a growing experience. My sense of control will be to hall food with me if I feel my food options are questionable. I'm choosing to live my life and will find a way to make it work (really what choice do we have). I'm wishing everyone well and hope to learn more from everyone on the board. Thanks for listening to me babble (it's where my head is at right now).

[notme]

It's a process. Give yourself time. Four months is nothing. I'm five years in and honestly I think I am finally coming to grips with everything. It's a strange disease that only people who have it can truly understand it.

amen, brother! i am gluten-free a little more than a year. TODAY, i am having a good day. one in almost two weeks. i have no idea when or what glutened me but it is unmistakable when it goes away.

i actually feel like i am peeling layers of (whatever) off the longer i am eating right. my whole body feels good today and anxiety is down i do think i have a long way to go and the improvements are so subtle.

[mollydee88]

Thanks so much, everyone, for the support and prayers. And hello, celiac buddy! These comments helped me stay positive even when "friends" make insensitive comments like picking up my potato chips (one of my few remaining snack indulgences) and pretending to read off the ingredients as "gluten, more gluten, extra gluten, hmm it says here these chips are just full of gluten". I'm really not to the point where I am comfortable with being teased and singled out like that. I'm going to keep taking it a day at a time. My mom is going to host Thanksgiving this year so we can make sure I have totally safe options, and I even finally convinced her to get tested herself. I had some blood work today which will let me know how I'm doing with vitamins and such since I've been feeling rather anemic this week (trying not to get myself into a hypochondriac frenzy that it's really leukemia and is confirmed by the bruising at the needle site). Again, a million thanks!

[Jenniferxgfx]

Ugh. The only person who can pull that label-reading joke is my husband. I just don't find it funny at all but I know he's not doing it to be mean, and he doesn't do it when I'm upset or overly hungry. He has good timing.

But it's not funny at all when anyone else does it.

Good luck! Anemia is way more likely than leukemia btw, but I had the same worries.

[lucky28]

Ugh~I totally understand the irritation @ other ppl singling you out for your diet. Believe it or not I work in a very close knit,specialized dept. Supposedly with well educated professionals but my coworker's ignorance (both kinds!) is incredible! I always try to be upbeat but some days I really have a hard time. I am taking my commitment to being gluten free very seriously, and for the most part in stride but it is hard (maybe partly due to the fact that there is another Celiac in our small group who is noncompliant!) I really have no urge to cheat but it does leave me feeling like an outsider. One morning recently I was having rice with cinnamon and milk for breakfast the whole dept had to join in on singling it out and acted as though I was biting the head off a chicken or something~unbelievable! I am just so thankful to be able to come to theae boards and know that I'm not alone!