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View Full Version : Yet another diagnosis, and possibly more



Hunniebun
07-26-2012, 12:22 PM
So after waiting a couple of months after being referred to a gastroenterologist, I finally saw one on monday afternoon. He asked me a lot of questions, asked about some family history and examined me. He diagnosed me with IBS because of my severe bowel spasms and also thinks I have Celiacs disease, because I have a lot of diarrhea, cramping, soft stools and how I just don't seem to gain or hold weight very well. This has been going on for years and I just thought it was me and my weird body. I am also getting my throat checked because of acid reflux problems.

In November, just 3 days before my birthday, I have to go into the hospital and be put to sleep for a Colonoscopy, Gastroscopy and he's also going to widen my throat so I can have an easier time swallowing, because I really struggle. This is just lovely, I was hoping it wouldn't happen but here I am, all booked and getting it done in a few months. I still have to get the blood tests done too when I go back to see my GP in a short while.

I really hope I don't have Celiacs, that's going to be an expensive diet change that I can't afford, plus giving up a lot of food I like.

So now its Lupus, possible RA, Fibromyalgia, IBS and now possible Celiacs, OH JOY! This is not what a 25 year olds life should be like!

Sorry, vent complete, thanks for listening.

theLword
07-26-2012, 01:07 PM
I'm sorry to hear about this Hunniebun. Hopefully it's just IBS. I've gone back and forth with thinking that I have Celiac's, but the census so far has just been IBS for me (not that either is very fun! haa).

But on a positive note.. I have tried gluten free diets and although they tend to be pricey since they have become sort of in style the past couple of years, gluten free options are becoming a lot more available. I know my local store has a section dedicated to gluten free. There are also a ton of recipies online too.

So, I'm hoping that you don't have to make the gluten free change. At least at the end of all of this I hope you start to feel better, that's the most important part after all is said and done! :)

jmail
07-26-2012, 04:28 PM
Celiac is rather rare, thankfully, so we'll hope and pray you don't have that. Maybe there's just an "intolerance" involved. That's what I have to deal with, and the worst part is not getting to eat pizza every day anymore... tic - but really, instead of a sandwich on white bread, you could do a corn wrap on it (if you can do corn), or if you've been "good" with the diet and can get away with it, maybe a whole grain bread. You'll have to experiment if they clear you.

Steve.b always talks about 'em, and I can vouch for their effectiveness, but using probiotics every day definitely helps me and my ibs and gluten/casein intolerance. If you haven't used 'em, try 'em. Did the doc say why your throat is constricted? Is it from the acid reflux? You get the gut fixed-up, and that might go away. I'm sorry for you having to do that procedure just before your birthday, but you'll find it's really not a big deal. The "bad" thing is the prep for the procedures (slightly messy & bothersome), but the first time I had to do that, I actually felt *way* better after getting all the junk out of me that was causing me issues. Best wishes that it all goes well for you with that. Keeping you in our thoughts and prayers.

Hunniebun
07-26-2012, 08:02 PM
Thanks you guys,

I am glad I will be put to sleep, so I don't have to experience anything but I am wondering...Will I be sore afterwards, both where the sun don't shine and my throat?
The problem with my reflux is that I've never actually felt heart burn in my chest, I just have so much phlegm every time I eat or drink, and it doesn't matter what I have, I cough like I have a bad congested cold. So, he wants to take a look and see what's going on and give me some more space. I used to be on acid reducers but that stopped a while back and I haven't been on anything since.
I'm not looking forward to prepping myself, they want me to start 3 days in advance and I am worried that something embarrassing will happen if I am away from home, which I will be on and off for the first 2 days and home all day for the final prep.

magistramarla
07-26-2012, 08:53 PM
Hunniebun,
My daughter has Celiac and is lactose intolerant. She has had to make major changes in her diet, but now she feels great and was finally able to get pregnant. She is eating gluten and lactose-free while pregnant, and she and the baby are doing great. If the test is positive, PM me and I'll get you in touch with Hillary. She'll be home with the new baby at that time and she'll be glad to share info with you.
One thing - don't go gluten-free before your tests are done. It could cause a false negative.
Hugs,
Marla

jmail
07-26-2012, 11:58 PM
... One thing - don't go gluten-free before your tests are done. It could cause a false negative.
Good point Marla. Your symptoms would definitely subside, and then they'd say "you're fine!" when your belly says otherwise...


... Will I be sore afterwards, both where the sun don't shine and my throat? ... I just have so much phlegm every time I eat or drink, and it doesn't matter what I have, I cough like I have a bad congested cold...
The part where the sun don't shine might feel "wierd", but not hurt. I came out of one, and didn't realize it'd been done already... One word of warning, they will NOT let you leave the facility until you "flatulate" a bit. They necessarily "blow you up" with air for "ease of access" for the instruments. Not to worry though, everyone there is used to it, except the patients... tic - As to the upper, I didn't feel a thing on any of mine. However, I've never experienced a throat "stretching", so I'd guess you may have a feeling of a sore throat, but in a different sort of way, like strain muscles from coughing too much. The 24 hours prior to the test are the ones where you want to stay close to the facilities, so plan on not doing a thing that day, other than drinking your stuff, and reading a good book, with the doorway to "Ye Olde Reading Room" clear and open. You describe phlegm when eating... have they ever checked you for asthma, just in case? 'Course, like Marla describes with her daughter being celiac and lactose intolerant, those kind of often go together, and if you drink milk with your meals, that can cause an increase in phlegm production. You'll find out soon enough. I wish you could get in sooner though...

steve.b
07-27-2012, 06:39 AM
hi hunniebun,

you commented on my thread about ibs,
might be worth rereading
http://forum.wehavelupus.com/showthread.php?12091-I-B-S-relief

when they did my colonoscopy,
they lightly sedated me, not fully put me to sleep,
as your body reacts better when it is slightly arousable.
sounds weird, but it was interesting to see it happen.
i was able to look at the screen the doctor used.
(yes my bowels are very long)
(no, i am not ALWAYS, ful of shit)
lol.

i am not a celiac, but i do respond better to a reduced flour diet.
i have found many of us lupies, have lots less issues when modifying our diet.
i still enjoy some bad things...... just less often.

modification of our diet is not always expensive...
i used wraps instead of bread.
sweet potatoe instead of white.
custard make with gluten free flour is a lot tastier, and even non celiac friends like my custard sweets.

Hunniebun
07-27-2012, 11:56 AM
I had issues with mild asthma back when I worked with the horses, I couldn't breathe properly after being exposed to hay dust for so many years, but since I have been off work for over a year and a half, I don't have any problems or so I think.
I drink milk often because I love it and I also love dairy products, I do NOT like soy...I've tried, and its just nasty but I might have no choice anyway. But I've also noticed that even when I drink juice, water, or eat food without milk, I still have a very high amount of phlegm and at the dentist they told me I have a very high amount of acid in my saliva, that its also wearing away at my teeth.
The other foods I don't think will be as big of a deal to switch to I guess, I just get so little money and organic/gluten free stuff is more expensive than what I usually get. I'd have to apply for a special diet allowance to get extra money, and then wait FOREVER to find out if I'll even be approved or not.

I am not going to change anything in my diet until everything is done, I was warned about that. I wish I could get in sooner though, but every time I see other posts on here about the nightmare that is the American healthcare system, I know that I am lucky I am even being seen at all, and for free.

Thank you all for your replies.

Derrie
07-27-2012, 12:23 PM
I do NOT like soy...I've tried, and its just nasty but I might have no choice anyway.

Hey Hunniebun, have you tried almond milk? I drink that instead of soy or dairy, and I like it much better than soy. My favorite brand of almond milk is Pacific. Also, the brand So Delicious makes really fantastic coconut-based milks. I use their coconut-based coffee creamer, and it is the best non-dairy cream substitute that I have ever found. Far superior to soy.

I hope you find something you like...

Oh, and PS to everyone-- if you live on the West Coast of the US, check your stores for Coconut Bliss ice cream. It's made in Oregon, and it's the only dairy-free ice cream that tastes as delicious and indulgent as the real thing!

Hunniebun
07-28-2012, 06:42 PM
Thanks Derrie, I've never heard of Almond Milk so I'll take a closer look next time I am at the store and maybe give it a try.

jmail
07-31-2012, 11:41 PM
Almond milk is a great substitute, just "thinner" than milk. It doesn't "cook" well usually though, and can make a *mess* of your melted chocolate. Soy for me is a worse allergen than oak or pollen, and definitely worse on my system than cow's milk. It and corn are surprisingly (for me) relatively high on the list of foods to avoid. I don't like soy either, especially that tofu stuff. But I still have to have me an ocassional ear of sweet corn... with butter... and salt... lol

magistramarla
08-01-2012, 03:39 PM
LOL - My dog is allergic to corn. Corn gluten is used as a filler in many of the cheaper dog foods. If he eats any, he's a very itchy dog.
He also has problems with beef products. I have to buy him the more expensive salmon-based, grain-free dog food.
He's a pescedarian German Shepherd!
Hugs,
Marla

jmail
08-01-2012, 09:59 PM
He's just got 'spensive "tastes", Marla... |;^)

Hunniebun
08-02-2012, 09:45 PM
lol @ jmail. I buy my cat grain free/everything bad free chicken food because he has Colitis and anything that is crappy or has fillers is awful for him, I have to be very careful and just keep an eye on him all the time. Pets seem to not be allergic to chicken as often as they can be to other foods.

I am just crossing my fingers and hoping I don't have a gluten allergy, but I also want to know WHY I always have diarrhea or cramps instead of just leaving it at that after my tests, unless IBS can cause all the problems on its own, and the Gastro told me there really isn't anything I can do about that other than eating well. That doesn't give me any relief because I can have diarrhea attacks out of no where when I am out and if a bathroom isn't available right then and there, I will be in trouble. Its been so bad sometimes that I end up getting extremely dizzy, I turn pale white and my body starts to feel very heavy and I will vomit AND have diarrhea at the same time, or just the diarrhea with all of the above.

How is that normal? It can't be...I feel SO sick when that takes me over, and by the time it passes I am exhausted, and soaked in cold sweat.

jmail
08-03-2012, 11:43 AM
What? you don't sweat profusely when it hits?... tic - Very embarrassing, very frustrating, ain't it? My gut is awful, and they say it's just ibs (I've had multiple scopings, and I'm "clean"). I can be completely gluten and dairy free for weeks, and then just "WHAM", get a round of it. The "defining" part of IBS usually though, is constipatioin, 'cause you'll do both, sometimes very closely together too, to where you get the best of BOTH worlds oh boy. Anything can fire it off. So, while I'm not celiac, I have to avoid gluten, since I'm "intolerant" of it. Same with dairy. There are so many other issues you can have that are similar to it, but ibs is the "easiest" of them to deal with. The scopes will narrow it down for you, maybe even get you an immediate answer. They'll talk with you in recovery about the tests.

I cannot, for the life of me, imagine having a pet with the insides I've got. My golly, if my dog or cat did things the way I do with food... man. You have my sympathies guys.

Hunniebun
08-04-2012, 05:48 PM
Oh I sweat big time when it hits, get very dizzy and my vision goes black and if I'm not careful I'll go down. I get so weak I can barely keep myself up, and once I'm done sweating I am soaked and cold, including all my hair. I can never predict when these will happen and I always pray that if its going to, that it will when I am home. Nobody seems to take this seriously and all I get told is nothings wrong with me, which makes no sense. I feel everything that is wrong with me these days has to be related to my autoimmune conditions, THEY are the reason, they have to be, its never nothing now.

magistramarla
08-06-2012, 03:39 PM
Hunnie,
Can you ask to be referred to a nutritionist? Perhaps they can help with figuring out a diet that will work for you.
BTW, one of our cats also has problems - he has cystitis. Luckily, it's an easy fix. I feed both cats the C/D diet. Luckily, they both love it.
My dog does wonderfully well on the grain-free diet. People have stopped me to tell me how beautiful and healthy he looks.
Hugs,
Marla