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Your First Few Days

lushgreen

By lushgreen
in Coping with Celiac Disease

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lushgreen Apprentice
lushgreen
Posted

It's just been a few days since I got Enterolab results and a day since I got biopsy results which show gluten and casein intolerance. I've been gluten-free/CF for five days. I haven't yet noticed any symptom change. One change that I have seen is that I'm feeling very emotional - I can't stop crying. I don't know if this is due to the dietary changes or a reaction to the diagnoses. I've worked very hard the past year, proving that I have celiac (or something akin), as well as getting the multiple other things diagnosed. I've seen many doctors, had many vials of blood taken, am driving myself further into debt with the medical expenses. My family hasn't been the most supportive, pre or post diagnosis. I've had a difficult time getting empathetic responses to my disclosing of my newly diagnosed condition. I have been worried about the impact of this on my social life. I'm generally a pretty private person and not looking forward to having to explain my diet restrictions when out. It's hitting hard that I don't quite have the sort of emotional support one should to weather life events such as this. I'm worried about what's ahead - I've got a bone density test for osteoporosis next week. I'm worried, somewhat irrationally, about discovering food allergies to legumes, rice, corn, or nightshades, without which I don't know what I'll do. But much of this is nothing new, in that, I've been living with it for awhile now. It's just one big stew of stuff, I guess!

I'm wondering what it was like for the rest of you, post-diagnosis. I suppose I should be feeling some relief, that now I finally know...but I'm not. I'm hoping that this emotionality is de rigeur and par for the course.

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Laura Apprentice
Laura
Posted

I guess my experience was kind of the opposite of yours. I wasn't looking for a diagnosis - I just thought it was bad luck that I'd been hospitalized twice in 2.5 years with violent GI issues, and my doctor tells me to stop eating wheat, barley, and rye!?! I didn't believe her, to be honest, because I didn't believe I was sick. So my first couple of weeks even, my main memory is of stuffing my face with gluten foods while telling whoever happened to be nearby "I shouldn't be eating this." And my mom talked me around (even though she later confessed she sort of didn't believe the diagnosis either) by taking it as a cooking challenge and making all kinds of great things for me.

The first real physical effect I felt, though, was not a great one. First it took my body a while to recover from the stomach flu that led to my diagnosis (it really was a stomach flu, it was just like a level 5 stomach flu due to my weakened system). Then I had some kind of massive hormone fluctuation that did entail some emotion stuff. But I only really see that in retrospect, because at the time I was so accustomed to physical misery that it just seemed like another meaningless thing my body was inflicting on me.

Sorry not to be more helpful.

klemmen Rookie
klemmen
Posted

hello,i am sorry you are having a rough time. I don't know how useful this is but as i never thought i would have celiacs disease, i just assumed i had picked up some infection that just wouldn't go away and they could give me something and it would clear up, and when they said celiacs, i have never been so relieved, just give a name to everything after feeling so ill, and as it took so long to get an appointment for an endoscopy (about 8 months and even then it was a few moths before my intial date scheduled) i just cut out a large amount of gluten as it really made me feel ill, so when the celiacs was confirmed, the change in my diet wasn't so big for me, and i remember just being extra happy i knew what was wrong. Sometimes it bugs me that i seem to be able to eat less and less food as less agrees with me :huh: but my mums a nurse and i remember her telling me about a lady who hadn't been allowed to eat for years and she was only allowed to suck icecubes..and i think of that and realise how lucky i am to be able to eat even if it does go right threw me :ph34r::rolleyes:

Maybe your emotions are just finally a release of everything now that you finally have a diagnosis, I think trying to prove you have celiacs to a Dr must be draining, as you said you have a lot of medical expensive and you feel unsupported by people, as well as adjusting to a new diet, which i would say would be pretty tough on the emotions. Regarding symptom change it has only been five days, and it takes a while for things to heal so don't worry about that, just see how it goes, and i'm sure you will start feeling better. Perhaps while you adjust to the diet, you could limit eating in restaurants or if out with friends take a lunch with you, and that would ease off you having to explain your diet, if like you said you are worried about that at the moment, and then when you get more used to what you can eat and you're feeling better you can eat out?

I know my doctor just did the bone density scan for routine value, considering our absorption is greatly decreased, and mine did show bone thinning, as i'm in my teens i guess thats not good, but don't let it worry you, as perhaps its routine also..i'm not from the US, so i don't no if these are done just to see after your diagnosis. I don't think it's irrational to think about not being able to eat other food, but as with gluten and dairy or casein or foods that you've found you can't eat, you adjust...before i was diagnosed a main part of my diet was bread...and now i don't even miss it, or want to eat it....however not eating chocolate..wellll <_<:P:rolleyes:

maybe just take things one bit at a time, and see how they go, i'm sure as your body adjusts and you start feeling healthier, you will feel more high spirited, and i don't know if it would help as i don't know your family but maybe expain to them how hard things are as they might not realise. Sometimes i know for me, i assume when something is bothering me my friends or family should know but unless you tell them i guess how are they meant to, to someone who doesn't have to cut all the foods out of their diet or incur huge medical expenses...it might not seem obvious that it would be a problem. I don't no, i have never been good at explaning :unsure: but i hope you start to feel better soon :)

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