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Newly Diagnosed

Nicolette

By Nicolette
in Coping with Celiac Disease

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Nicolette Rookie
Nicolette
Posted

Hey everyone,

I was diagnosed two days ago by a blood test and my doctor wanted me to have an endoscopy to be, in his words, 'positive, positive'. But because I also have emetphobia, I refused this. I don't need a tube shoved down my throat just to prove what they already know!

I'm 33 and for since I can remember, I've always been underweight and skinny and ill. Stomach pain, nausea, tiredness, depression, skin problems, anaemia, etc. I had my four children without a problem which surprises me now that I know my diagnosis, but thank God they arrived safely.

I must say, I don't mind making the change to my diet. After all this time not knowing what was wrong with me and just assuming it was the way I was meant to be, I'm glad to have a direction to go in, especially one where i don't have to pop tablets. This can be controlled by food alone. Am I being naive though? Everything i tend to read about other people's experiences ,mention that they were all shocked and horrified at having to make such a change.

I feel quite positive about it.

I'm really looking forward to gaining weight and getting some curves! Currently, I'm 5'9" tall and weigh just under eight stones, which is what...120 odd pounds? I', about three stone underweight and totally fed up of people saying what a lovely skinny body I've got or "why are so thin?"

Now i have an answer! :D

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tarnalberry Community Regular
tarnalberry
Posted
I must say, I don't mind making the change to my diet. After all this time not knowing what was wrong with me and just assuming it was the way I was meant to be, I'm glad to have a direction to go in, especially one where i don't have to pop tablets. This can be controlled by food alone. Am I being naive though? Everything i tend to read about other people's experiences ,mention that they were all shocked and horrified at having to make such a change.

I feel quite positive about it.

<{POST_SNAPBACK}>

No and yes. And in that order because the answer is more no than yes, but not entirely no.

Some are positive about it - often because it's not a radical change for their diet, or because they were so sick that any solution is an improvement. But even us optomistic folks experience times of... both sadness and frustration and anger. For me, it's not quite as much at the restrictive diet I'm on as at the restrictive diet (revolving solely around wheat) the rest of the world is on. Wheat is so ubiquitous that it can be frustrating to deal with that. Much like moving to a foreign country where everyone speaks a language you do not, you're "left out" and there can be anger (why can't they speak the same language, or eat a wider variety of food), frustration (I can't find someone to speak to anywhere!, or I can't find anything to eat anywhere), and sadness (I'm lonely because I have no one to talk to, or I'm lonely because I'm the odd man out and no one can relate to me). The complicating factor here: the "life sentence". That magnifies the extent of that analogy I'm using by saying that you'll never again live somewhere you speak the same language, even if you do end up getting really good at pantomime. ;-)

skoki-mom Explorer
skoki-mom
Posted

Hi Nicolette,

Nice to meet you :) I'm glad the diagnosis is the answer you're looking for and I really do hope you will begin to feel better soon.

You are right, changing your diet is not the end of the world. I try very hard to be optimistic about things and remind myself I could have a disease that is much worse. After all, how many diseases can be treated by diet alone?? Sure, the diet is not a cure in that if you ingest gluten you will get sick again, you will *always* have celiac disease, but if you take care of your diet, you can be very healthy with celiac disease. I am additionally lucky that so far it seems that the only thing I have is celiac disease, some people here have additional issues of other food allergies or intolerances, diabetes, other types of inflammatory bowel disease, etc. Having said all that, I have cried (more than once) over a favourtie food I want desperately I am literally frothing at the chops for it (mostly dessert related stuff) and I find the whole thing to be quite honestly inconvenient, time consuming, and expensive. There is the whole emotional relationship we have with food that comes into play as well with this disease.

I have only been dx for just about 4 weeks and have found lots of great advice and support here, I'm sure you will too.

Nicolette Rookie
Nicolette
Posted
  • Author
Hi Nicolette,

Nice to meet you :)  I'm glad the diagnosis is the answer you're looking for and I really do hope you will begin to feel better soon.

You are right, changing your diet is not the end of the world.  I try very hard to be optimistic about things and remind myself I could have a disease that is much worse.  After all, how many diseases can be treated  by diet alone??  Sure, the diet is not a cure in that if you ingest gluten you will get sick again, you will *always* have celiac disease, but if you take care of your diet, you can be very healthy with celiac disease.  I am additionally lucky that so far it seems that the only thing I have is celiac disease, some people here have additional issues of other food allergies or intolerances, diabetes, other types of inflammatory bowel disease, etc.  Having said all that, I have cried (more than once) over a favourtie food I want desperately I am literally frothing at the chops for it (mostly dessert related stuff) and I find the whole thing to be quite honestly inconvenient, time consuming, and expensive.  There is the whole emotional relationship we have with food that comes into play as well with this disease. 

I have only been dx for just about  4 weeks and have found lots of great advice and support here, I'm sure you will too.

<{POST_SNAPBACK}>

Thanks for that. I know what you mean about frothing at the mouth for certain foodstuffs. I'm not relishing that because I'm a HUGE chocoholic and I'm sure I'll soon discover that my favourites are probably on the danger list.

Nikki

ILOVEOMC Enthusiast
ILOVEOMC
Posted
:D Hershey chocolate candy bars are gluten-free so that is one thing you can have right now. There are also some hot chocolate mixes that are gluten-free , I think someone listed them here once but I can't recall what they are. Good luck!!
Nicolette Rookie
Nicolette
Posted
  • Author

Again, thanks, but I'm not from the US so I don't get Hershey bars over here. I'm from the UK. :)

  • 2 weeks later...
jerseyangel Proficient
jerseyangel
Posted

Hello everone-I am a 49 yr. old homemaker posting for the 1st. time. I was dx w/celiac disease 6/2/05 and gluten-free since that day.I have to say that this group is very knowledgeable and supportive and has been a big help to me these past few months. I suffered from nausea,dizziness,and anemia for 15 years or so, all the while my Drs. believed I had sinus & allergy problems. 2 years ago I developed "D" (cronic & unpredictable), wt.loss,worstening anemia,anxiety,brain fog,tingling in face,forearms and legs and terrible fatigue. My GP (had no clue what was up) sent me to Gastro. He did endo. and colo.-Pos. dx of celiac disease (As I suspected by then after doing my own limited research.) The 1st. 3 mo. post dx were kind of "2 steps forward,1 step back" but in the last mo. things are starting to get a bit better. I know that it takes time-I learned that here :) Thanks and good health to all!

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nettiebeads Apprentice
nettiebeads
Posted
Hello everone-I am a 49 yr. old homemaker posting for the 1st. time. I was dx w/celiac disease 6/2/05 and gluten-free since that day.I have to say that this group is very knowledgeable and supportive and has been a big help to me these past few months.  I suffered from nausea,dizziness,and anemia for 15 years or so, all the while my Drs. believed I had sinus & allergy problems. 2 years ago I developed "D" (cronic & unpredictable), wt.loss,worstening anemia,anxiety,brain fog,tingling in face,forearms and legs and terrible fatigue. My GP (had no clue what was up) sent me to Gastro. He did endo. and colo.-Pos. dx of celiac disease (As I suspected by then after doing my own limited research.) The 1st. 3 mo. post dx were kind of "2 steps forward,1 step back" but in the last mo. things are starting to get a bit better. I know that it takes time-I learned that here :) Thanks and good health to all!

<{POST_SNAPBACK}>

Hello and welcome. We're here to help and as you probably surmised, any question is an okay question. None are too personal or out there. And of course, if you need to vent, please feel free too. I'm happy for you in that you got a GI that figured it out for you. Good health to you too! :)

cornbread Explorer
cornbread
Posted
Again, thanks, but I'm not from the US so I don't get Hershey bars over here. I'm from the UK.  :)

<{POST_SNAPBACK}>

...and you're not missing much with not having Hershey's either, let me tell you! Cadbury's do a gluten-free list at their Open Original Shared Link

A surprising amount of gluten-free choices! :D

FaithInScienceToo Contributor
FaithInScienceToo
Posted

Welcome, Newbies!

This board rocks!

So many helpful people, and it feels good to be able to help sometimes, too :)

Sending lots of love your way!

Gina

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