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missceliac2010

Member Since 03 Jul 2010
Offline Last Active Sep 13 2010 05:46 PM
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#633711 Hospitals

Posted by missceliac2010 on 22 August 2010 - 03:42 AM

I am sorry you are all having to go through this. Yes do speak with the dietian but also be aware that some hospitals are better than others at getting the diet right. If you feel at all uncomfortable talk to your doctor about getting permission to bring him food from home.


Thanks SeaShell! Sorry to hear about your child, and thanks for the kind words about my boy. He's a trooper, and he'll get through it fine. It's mommy having mental breakdown that I'm afraid of...haha....j/k.

And thanks Raven! Good idea. I had already planned on bringing myself a lot of snacks, bread, fruit, etc, so I can avoid CC while bedside for a week with him. The last thing he needs is Mom being sick! Glad to hear you had good luck with the hospital dietitian! That gives me great hope!
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#633708 *sigh* Went To The Gi, More Confused Than Ever

Posted by missceliac2010 on 22 August 2010 - 03:31 AM

Howabout you take a biopsy and test it against allergens? That IS what I want really. right? grrrr


I'm with the rest. If you're going to prep for a colon, then go for the upper GI as well. Personally though, I fear that all tests might show up negative with you being gluten-free already. It happened to me. I was in the hospital sick as a dog and deemed "nothing by mouth" (NPO) and fed liquid nutrients and glucose through my IV. Just those 3 days was enough to cause false negatives/borderline results.

I'd get a second opinion. Heck, I'd forget the tests and just roll with gluten-free. I get anxiety the minute I walk into a hospital, and the prep for the colon... not fun. But good luck and I wish you clarity and guidance to make the right decision for yourself!
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#633703 Just Diagnosed, Questions Inside Post

Posted by missceliac2010 on 22 August 2010 - 03:11 AM

Is it really necessary to get new pots and pans and plates and silverware?
What if any books have been lifesavers while dealing with this disease?
How long were you gluten free before feeling relief?
If you have children, did you have trouble conceiving?
Do any of your family members also suffer from Celiac's?

Lindsay


Welcome to your new and improved life Lindsay! Here is my best shot at answering questions:

1. I didn't get new pots/pans/silverware. I have a dishwasher, which I put to the highest temp setting and cleaned everything. As far as my baking stuff is concerned, I scrubbed them with something called "bar keeper's friend." It's less abrasive than comet. We have been fine (my son is also newly diagnosed at age 11.) I am a single parent, and totally starting over was not an option. I have also heard that you can put baking stuff in the oven at some crazy high temp for like a half hour... that ought to kill it! I had to throw out a few of my favorite lip glosses... gluten. Ugh! I also check my shampoo/conditioner to make sure anything I buy is gluten-free. I too got a new toaster. $7 at Target. Cheap, right?!

2. I have yet to buy a book. I find everything I need right here on my trusty computer!

3. I was only gluten-free for about 3 days when I noticed major changes! I kept accidentally glutening myself because of "newbie" moves! One I stopped being a ..... u-huhm... jackass... I am all good! I also had to cut out dairy, and now use soy or almond milk, and other soy alternatives. (Soy yogurt, sour cream "product" made my tofutti...I think, etc.)

4. I am not trying to conceive, so I can't tell you. I do not that my sister is wanting a kid, but her GI doc is advising against it. I don't think we are "that bad" and we can still make babies! I have my tubes tied, so if my bf and I choose to have kids in a few years we will need IVF. That costs money, so it has to wait. But when I do try to get pregos, I know I will get the support I need right here, on this board. You might want to check out the section on this forum specifically about pregnancy. That would be a good starting point, in case someone missed this question because they only look at the one board.

5. My Dad started this. I tease him often for the "great genes Dad!" Kidding of course. Actually it's been kind of nice. I have been having him over for dinner more often because we are all "in the same boat!" (And he's going through a divorce, so he kind of "needs me" right now!) My youngest son (11) saw how well Mom was doing on the diet, and decided to try it as well. Sure enough, no more tummy aches, backaches, unexplained vomiting, and he's even growing! I never had him formally diagnosed... he just tried it and feels great! Whatever works! My sister has another auto-immune disease called Chrone's. My maternal Grandfather has had severe ulcerative colitis since he was 40 (he's 80 now.) It's in the genes... for sure, in my opinion!

Ask away on here about any questions you might have. Chances are good that someone here has been there, done that!

Good luck and welcome to the boards!
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#633700 Hospitals

Posted by missceliac2010 on 22 August 2010 - 02:49 AM

Hello Friends,

I just found out that my youngest son, Tyler, has to have his 3rd open heart surgery. He has a severe heart condition and will require another new pulmonary heart valve placed in 2-3 weeks. His old valve, placed in 2006, has totally failed...

My question is related to the hospital diet. Has anyone had experience with requesting a gluten free diet while hospitalized? Tyler is not "formally diagnosed", as I chose to not put him through any invasive testing, and he is responding to the diet so well, I do not find it necessary. I know most hospitals have a dietitian... Do I simply meet with him/her and explain his gluten allergy?

Any suggestions/exp are welcome! Thanks!
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#633173 How Does This Happen?

Posted by missceliac2010 on 19 August 2010 - 04:47 PM

I was fine my whole life. Walking around with some constipation problems but nothing I wouldn't attribute to having my gastric bypass surgery 3 years ago. My GI tract went a little haywire after that surgery...for good reason...they removed like 2 feet of small intestine or something.

Anyway, I was ok, when suddenly in November, I got this horrible "D" and pain. Bad pain. Then I started throwing up, and didn't stop. It got to the point that I couldn't keep down liquids and had to be hospitalized. I was put in the hospital with horrible vomiting, and horrible pain. Non-specific, gut pain. Then the tests started. A colonoscopy, an upper GI, an ultrasound on my gall bladder. Finally they decided to do a "hida-scan" (I have no idea how its spelled, I just know it sucked...) I spent 2 hours on a hard plastic "table" off of pain meds for 8 hours, crying in pain, when they told me that my gall bladder had to come out. So 2 hours after that I was on an OR table getting my gall bladder removed. After the gall bladder surgery, I felt pretty good. I gained some weight, and things went back to pretty normal (or at least "normal for me".)

Then it started again in June. Pain. Vomiting. But then something new... a distended belly! I mean, we are talking like lookin' 4 months preggo's! Not cool! I just lost all that weight, am finally in a bikini, and now I am all bloated AND in pain?! So the crap began again...tests, know one knew what was wrong, blah blah... It got very frustrating.

Finally I ended up back in the hospital. The GI doctor (who I can only see in the hospital, because he doesn't take my insurance outside of it) said "o, you probably have celiac... your last upper GI biopsy was "borderline", did you start the gluten-free diet?" I was mad! No I said, no one had told me!?!? So he did another upper GI biopsy and a blood test for celiac and sent me on my merry way, telling me to go gluten free. I had the test results sent to my regular doctor (because that GI doc doesn't take my insurance still...grr....) and my regular doctor told me that the results were negative! Negative I said?! How?! I have every symptom of Celiac Disease. I feel 110% better in the 2 weeks of gluten-free while waiting for these stupid test results! If I accidentally gluten myself, I feel like crap! Doc explained to me that the tests for celiac are not very sensitive... and unless I was ingesting ALOT of gluten in the days before the test, and that he hit just the right spot with the biopsy, it's a good chance it's a false negative. I was NOT ingesting a lot of gluten in the days before, because they had me "NPO" (nothing by mouth) for 3 days while hospitalized waiting for them to figure out what was wrong with me again.

Anyway, my doctor's daughter has Celiac, and he knows the disease very well. He said "based on my positive reaction to an elimination diet, he is diagnosing me with Celiac Disease". He then offered to repeat the blood test if I wanted to intentionally gluten myself for a couple of weeks... I said no thanks and moved on.

I've been gluten free for almost 3 months, and I feel amazing! My chronic back pain is in remission, I have normal bowels, my weight is regulated, I am back in a bikini, well...its awesome! I don't know what happened, and I don't know what set it off...but I do know the hell I was going through before the diagnosis...and even that had to come some weird back handed way. Strange little disease. ;) (kidding...seriously...this disease is no joke... it's "not playin'!")

Good luck. Hope you get better reason why type replies, but that's just my story.
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#631795 "But You Can Eat Whole Wheat, Right?"

Posted by missceliac2010 on 15 August 2010 - 02:47 AM

I can maybe sort of understand an average person may not know this but a doctor? One who deals with gastric bypass patients who have to drastically change their diets? You'd think they'd be up on basic food intolerance knowledge.


Doctors....LOL! Even though I have a print out, right on my refrigerator door that tells me the lactose content of "commonly eaten foods", and yogurt is pretty low in lactose, I still eat soy yogurt. Although, I will admit, because of a lack of not-gross cheese substitutes out there, I still indulge in "regular" cheese, with the help of "Lactaid." I tried once to eat a regular yogurt, and got sick as a dog, even with the Lactaid. I guess we are all different, and we all have to make choices about how far we are willing to "push" our diet. Lactose, unlike gluten, does not make my belly extend, which is the symptom I find most painful and annoying. My clothes don't fit, my back hurts, ugh, it's hell. But Lactose...if I screw up its just a few trips to the potty with D. I take 2 lactaid before a sandwich with a slice or two of cheese, and that is fine, but if I am having a "cheese plate" (a common snack with my BF and I...(different cheeses and rice crackers...yum..), I have to take 3 - 4 Lactaid. It's probably better if I avoid 'cheese plate lunch' day, but hey, it's a risk I am willing to take!

You can find out the general amount of lactose in commonly eaten foods. That way, you have a formal, educated answer to the lactose content of food, and you can make your own choices. I found a great table here:http://digestive.niddk.nih.gov/ddiseases/pubs/lactoseintolerance/

They have an excellent chart about half-way down the page. I printed 3 and hung on my fridge, one on bf's fridge, and carry one in my purse. Good luck!
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#631591 I Have To Pop My Knees And Lower Back All The Time...

Posted by missceliac2010 on 13 August 2010 - 07:44 PM

So after being gluten free for about a month it's becoming more obvious that a lot of my symptoms are more related than I thought. One of these is the issue of popping my knees and back-


I am 35 and have had bad back problems since I was 25. Before going gluten-free, I was in such chronic pain that I was on a heavy dose of a pain patch called Fentanyl. It's serious stuff...look it up.... AND I took, on average, 100 percocet per month, and it didn't touch my pain. Anyway, since going gluten-free, I am now totally of the extra percocet (I have a mere 30 vicodin per month for "flares", and I don't even need that much!) I am also tapering off my pain patches with great success! Me and my doctor think that within a month, I will be free of all pain medicine. And I could have gone off of it faster, but the heavy drugs I had to be on to keep me out of pain have such gnarly side-effects, that I have to taper very slowly, or else experience strong withdrawal symptoms.

Before my Celiac diagnosis, I thought I was sentenced to a life of pain killers and back pain. I had to stop being active (At one point in my life, before the Celiac "flared", I was running 10 miles per week), and did not much more than sit on the couch. Sitting through a family event was almost impossible, and my pain kept me home and sad more than I can tell you.

So is cracking of the joints/joint pain Celiac related? I say hell yes! My back used to be terrible. I was told I had a bulging disk (which I still have, but it's very minor) and severe arthritis in my back and joints. I didn't have arthritis, I had Celiac Disease! I got my life back since going gluten-free, and I hope you notice changes too. And if you "keep crackin", as long as it's not painful, I hope you learn to live with your "cracky-ness"! LOL! :0)
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#630982 "But You Can Eat Whole Wheat, Right?"

Posted by missceliac2010 on 11 August 2010 - 06:31 PM

I've only been to Sephora once, but the gal working asked my dd if she wanted to try some makeup on. I told her no, because of gluten, blah, blah, blah... She said, "Oh, let me show you all the gluten-free stuff we have!" I was shocked! Her SIL happened to have celiac as well, so she knew everything about all the products, and dd was more than happy to be her guinea pig ;) Soooooo, if you're ever at the Vancouver (Washington) mall, check it out :)


So glad you had a good experience! I have noticed that you will find the occasional "island" where someone has a "friend, family member, etc" who has Celiac. I got very lucky and my DOCTOR was one of those rare islands! His daughter has Celiac, so instead of knowing little and/or being ignorant on the subject, he had a wealth of information! He went into this whole thing about how they were about to go on vacation in Hawaii, and he and his wife had been calling around to local restaurants to see if they can accommodate gluten free! I mean, this guy knew his stuff! I love my doctor! Yay me! But unfortunately, more often than not, I get the deer in the headlights look when I say gluten free or allergic to wheat. Hopefully all of the press that the Clinton daughter is giving the disease will bring it into the spotlight. Fingers crossed. :)
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#630821 New Glutening Symptoms

Posted by missceliac2010 on 11 August 2010 - 06:22 AM

I'm hoping I don't have to buy all new pans and stuff. I did get a new toaster just for me.


Hey LauraBeth,

I have wondered the same thing.... I am a substitute teacher, so I haven't worked at all since school got out. Thank goodness school is starting up again here soon, because my "reserves for the summer" are running low. Of course, this Celiac Diagnosis has helped deplete my reserves, especially in the beginning, because I had to stock all of the necessities and it got expensive! I chose to not replace my frying pan, because I simply couldn't afford to. I use "barkeepers friend" (which is a lot like comet but less abrasive) on the cookware and it seems to be fine. When I have an excess in cash again, I'll probably run over to a discount store and get a cheap, but not too cheap, frying pan, etc. That way, I can stop obsessively scrubbing my poor old pan. I haven't noticed any CC from the old pan, but perhaps its mild and I'm barely noticing... but I don't think so.... even though I have learned that I am VERY sensitive.

Good luck to you, and I hope everyone's symptoms get better soon! I have a bad back (bulging disk, and arthritis) but I'm amazed at how much better my chronic pain has gotten since going gluten-free. When I get glutened, sure enough, my back flares up and I'm back on medication. Joint pain, bone pain, etc.... Again, I am baffled by all the ways gluten can hurt us! ((hugs))
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#630769 Uggh Now D And Cramping Again!

Posted by missceliac2010 on 10 August 2010 - 11:47 PM

My son gets D from apple juice too! Same thing, always has. Even as a little baby, people would say "don't you give him a juice bottle?" And I'd say "not unless I want to dehydrate and kill him!" :0) Just a few weeks ago, shortly after I was diagnosed with Celiac, that same son, now 11, decided he wanted to try gluten-free too. He's feeling so much better! He used to fart up a storm and complain of back pain, tummy pain, D, and was generally very cranky and emotional. Since going wheat free he's like a new kid! Thinking back to that apple juice thing....I wonder if he's had food allergies all his life, and I just didn't notice. O no, now I have "Mom guilt!"

Regardless.... I think getting D from juice is pretty common. It's a TON of sugar, despite it appearing "healthy." Lots of manufacturers make lower sugar versions of juices now. Perhaps you can try those? Now I'm not sure about the gluten content etc.... That would have to be researched, but I know that neither me nor my son do well with juices. Get well soon!
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#630768 Help With These Symptoms! Tmi

Posted by missceliac2010 on 10 August 2010 - 11:40 PM

Hi There,

So sorry to hear you were so sick. I continue to be amazed at how sick food can make you?! Food allergies are no joke! I know you still have the lingering heartburn, etc... Of course I'm not a doc, but in my experiences, when I am glutened, or eat dairy, etc.... I am pretty messed up for a while. I think I'm healed, and then I'll throw up out of the blue, or I'll have terrible cramps and D. I'll think, jeze-louise, I ate so well today, and then I remember, o yeah, you're still healing from your last screw up you ding dong! LOL!

I hope that's all it is. Have you tried over the counter Zantac or Prilosec? You can get generic versions at Target or Wal-Mart that are much cheaper, and they can do wonders for heartburn. When I get heartburn, the standard stuff doesn't touch my pain (tums, mylanta, etc...) I have to go straight for the big guns, and for me that's Zantac. Good luck!
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#630561 "But You Can Eat Whole Wheat, Right?"

Posted by missceliac2010 on 09 August 2010 - 08:28 PM

I walked into Sephora ...Without acknowledging me or looking up from her task she said, all of the X items (I forget the brand she said) are all natural and therefore gluten free. I turned and walked out of the store. I have since bought a credit card shaped magnifying 'glass' that fits in my wallet so I can read the small print myself.


This just irks me! In this economy, the fact that stores like Sephora are even still alive is amazing to me! They are expensive, and then to add bad service on top....who would buy their stuff? I feel like bad customer service is like a disease lately in retail. I am a struggling new teacher, who can't find a job in this terrible economy. The school districts are laying off teachers and increasing class sizes, not taking a chance on a fresh newly minted excited history teacher who is ready to school the teenagers of the United States with the utmost enthusiasm. The fact that anyone has a job is something to celebrate! I don't know, that's just my two cents. :0)

I'm sorry you had this experience. I too have learned to just help myself in any retail environment. Asking for help is simply not going to get you anywhere. Of course, if I could afford to shop at places like Nordstroms, perhaps someone would kiss my booty and help me, but I can't afford that, so I have to stick to the Ross and Target's of the world! This turned into a rant. Sorry ... LOL! I'm not usually this negative, I swear!
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#630053 One Good Thing.

Posted by missceliac2010 on 07 August 2010 - 10:50 PM

but I'm proud of myself for doing it.


Hi! I agree with you. I am proud of myself too. After years and years of being overweight and unable to control my eating, I had gastric bypass surgery. It changed my life. I learned that food is fuel...not my friend, not my confidant, and it doesn't have control over me! I have control over IT! The post surgery diet is very limited, and I did very well sticking to it. I got the weight off and maintained the loss over the past 3 years. I won...food didn't! (Yes, I got help...the surgery....but it still requires will-power and the desire to be successful.)

When I was diagnosed with Celiac, I had similar feelings. I thought, I can do this! Food is fuel. I just need different fuel! I love the fact that people will say "HOW DO YOU DO IT?" Or "I would DIE without wheat!" I always laugh a little inside and think, yes you can, and if you can't...you are weak. Celiac Disease teaches you to be strong. Of course we have our weak days. I cry, I get upset and frustrated...etc... But most of the time, I'm strong! And I'm damn proud of myself.

So all I have to say is "You go Gluten-free peeps!" We rock! Another allergy? Another sensitivity? Bring it on! We can handle anything!

:0)
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#629851 Greetings...newbie Here!

Posted by missceliac2010 on 07 August 2010 - 03:09 AM

So, there's my story. I'd be curious to hear of other's stories, shared symptoms and any steps I should be taking to best manage my health? Although I'm quite thankful that my GI doc diagnosed Celiac, he basically gave me a pat on the back, told me to research the disease, follow a gluten-free diet and I should be fine. I'm actually going back to see his partner next week, because I'm sure there's plenty else that I could/should be doing in order to be as healthy as can be. If I'm not asking too much, I'd like to live a long and pain-free life!


Welcome and congrats on heading down the road to better health! I too had a lot of 'mental' symptoms. I was a manic depressive. Highs were high, lows were low. I was told I was bi-polar, had an anxiety disorder, and suffered from depression. I was on a myriad of pills including prozac and xanax. I started to really feel out of control after my last hospital admittance. I had to go in because I was so sick I could no longer hold down just plain water. I was vomiting, in extreme pain, my tummy was so distended I appeared to be about 4 months pregnant, and I was a lunatic! The whole time I was in there, I felt out of control mentally. I hated everyone. I hated the doctors, nurses, my mother, my boyfriend....tried to rip the IV out and walk out twice... I mean, I was losing it! I knew I was acting nuts, but I couldn't stop myself. Very scary and strange feeling...

Anyway, my GI doc who performed an upper GI with biopsies and blood test for celiac while admitted said that last year he had performed another upper Gi (I was also in the hospital with unexplained symptoms, but that time I ended up having my gall bladder out) my biopsy results showed "borderline Celiac Disease". I never knew about the results, because once I leave the hospital, my insurance won't pay for me to see that particular GI doctor. So I left the hospital this time with the order to try a gluten-free diet.

(BTW, my biopsies and blood work were both negative for Celiac, but through a long talk with my primary doctor, being on these boards and living life gluten-free, I have diagnosed myself with Celiac! I have researched those tests they do, and most admit they are not sensitive enough, and often give out false negatives. They require the patient to be very sick and/or the GI doc to be very lucky in where he grabs his biopsies from in your GI tract. I never was able to talk to the GI doc I like so much that I can only see in the hospital regarding the results, but with my regular doc's blessing, I am living life as if I have Celiac Disease.)

Once I started (actually my mother and BF started to do research while I was still "out" from the procedure), I realized that I was a classic celiac!! I had almost every symptom of Celiac disease! After going gluten free for over a month now, I feel back in control of my body! I am not taking the as needed xanax anymore, and I am seeing my doctor next week about weening off of the prozac. I'm me again! YAY! Having the psychological symptoms go away for the most part has been the best! Feeling crazy and out of it and not in control of your body is a very scary thing. I was considering suicide on an almost daily basis! Now, I am optimistic and ready to face life again, even if it's a less than perfect life! LOL!

Good luck to you, and I hope you notice the extreme changes that I did after going gluten-free!
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#629850 Misery Loves Company...what Do I Do?

Posted by missceliac2010 on 07 August 2010 - 02:59 AM

I have been gluten free for 4 months or so and last night after coming in contact with some cross contamination I am in major pain! Hit quite quickly (in the restaurant) and even though I made it home before getting worse I woke up today with horrendous bloating and pains. Is there anything I can do to speed up the healing process? It has been 24 hours and I am still quite uncomfortable.


So sorry you feel cruddy! When I'm glutened I tend to start a regimen of gas-x (for the bloating), pepto (because someone told me to...lol), lots of water (cause it flushes you out), and a pretty darned liquid diet (because I can't really handle "real" food anyway when I'm that bad, so boost shakes are my friend.)

Good luck to you! Get well soon!
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