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Firmly Gf With Continuing Symptoms


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44 replies to this topic

#16 YankeeDB

 
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Posted 18 August 2004 - 06:41 AM

For people trying to gain weight with digestive problems, I like to recommend coconut oil. It's an easily digested fat. You can eat it straight or in a salad dressing (but will have to figure out a low-acid accompaniment besides vinegar) or use it to stir fry.

I echo the recommendation to be checked for other food allergies. From a York labs test I recently learned I need to eliminate yeast (includes vinegar, sigh), pears, sunflower seeds, cashews, soy, dairy and eggs. Some of these I had already suspected.

For what it's worth, the natural sweetener Stevia works well for me but Splenda seems problematic. I do drink aspartame with seemingly no effects but should probably experiment with eliminating it for a while. I've recently learned nearly all carbonated drinks are bad for the tooth enamel anyway.

Just a few miscellaneous thoughts. I hope you feel better!
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#17 celiac3270

 
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Posted 18 August 2004 - 01:41 PM

The restrictions aren't too bad, as long as it makes me feel better. Besides, I don't believe they are permanent, even. Once my intestines can absorb normally, I'll be able to go back to more acidic foods and high-sugar foods.

YankeeDB -- I have been checked for food allergies. When the GI was trying to figure out what was wrong with me, he tested for food allergies. There were none.

This is off topic, but I was talking to some kid today...I've known him a few years, but we're not great friends. I was eating some gluten-free food; don't remember what, and he asked something like "when are you allowed to eat normal foods again?" And I had explained this to him.......just kinda shows how little people understand it.....not really pertinent to symptom/food discussion, but sort of interesting.

Thanks for all the replies. I know I'm not alone, but it helps to hear the stories of others who deal with the same thing.

-celiac3270
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#18 flagbabyds

 
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Posted 18 August 2004 - 01:48 PM

Your vomiting sounds a lot like mine did before I went gluten-free
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#19 celiac3270

 
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Posted 21 August 2004 - 05:18 AM

Latest update:

Yesterday, starting around when I woke up, I started to feel little twinges. It was the last day of camp (a day camp where I'm a CIT.....you get paid). Anyway, I've gone before with twinges and by noon felt fine again. So, I went. By 11:30 the pains started getting really bad. Now, the really little kids (3-4 years old) go home on a 1:30 schoolbus as opposed to the 4:30 bus. So, I decided to go to the camp nurse, asking if I could go home on the 1:30 bus with the younger kids--sick kids have done that before. So, first off, they take my temperature......even though I said that I already know what's wrong with me. They tell me just to drink water (as I had been doing) and eat lunch....maybe that's why I wasn't feeling well (yeah, right). I explained the whole celiac thing as well as I could while not feeling well and they asked me why I would want to go home when I could just relax at camp until I feel better (for my own bed, AC, my own toilet to vomit in, duh!!!! :angry: ) Anyway, so I had to leave and she didn't really give me any options or mention that earlier bus. Well, not ten minutes later, I vomit into the toilet and go back to her office. This time I'll bring up the earlier bus. So, I told her I vomited and she started asking if anyone "saw me vomit". I explained that I was in a stall so nobody pulled open the door to watch me, but there was a kid who heard me. I ask to go home on that bus. She then called me manipulating in terms of the bus......jerk.....and then called my mom. She said "celiac3270 claims to have vomited and would like to go home". Claims; give me a break! I felt like saying "smell my breath".......claims. My mom put her in her place "if he said he vomited, he vomited". I got to go home. I got home and ended up vomiting every 15 minutes, not much came up, but I was vomiting very frequently. The abdominal pains were excruciating and lasted until about midnight. I had the abdominal pains worse than I had had them for five or six years, when I had them that bad in first or second grade. I kept crying and wishing I could just be knocked out or something so that I wouldn't have to deal with this. Anyway, this story is just an example of how mean people can be.........claims to have vomited........manipulating........give me a break!!!! :angry: That really infuriated me. Oh, by the way, my vomiting wasn't chunky at all--just little vomits of liquidy stuff, rather than huge vomits of chunky stuff.

The doctor has prescribed Prilosec (gluten-free) 20 mg. twice a day. On the box it says once a day, but he prescribed twice a day. He thinks that my upper intestines are so raw and sensitive from all of this, that that's why I'm getting all this vomiting. The doc. has been great. Thank you, everyone, for listening to me and for making such encouraging replies.......until now, my acid-free diet had been helping a lot--I don't know why it got worse, but i'm gonna go take my Prilosec :).

-celiac3270
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#20 Canadian Karen

 
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Posted 21 August 2004 - 05:38 AM

Oh celiac3270, I am so sorry you had to go through that!! Obviously, that person didn't know who she was dealing with!! She obviously doesn't know how you are heads and shoulders ahead of other children your age..... She probably was just treating you like she treats any other kid who says they aren't feeling well..... which, by the way, doesn't sound like she is doing a very good job, since she should take every child seriously when they say they don't feel well.....

Did you read my post about going to the dr? I wanted to let you know that he told me not to have any bananas, apples, cherries, plums, prunes OR THEIR JUICES..
Now, that is because of the diarrhea, so I don't know if that would apply to you in regards to the Tropicana Freshed Pressed Apple Juice..... Did you try it? Maybe that is what didn't agree with you...... and if it turns out to be that, I will feel like c*r*a*p........

I hope you are feeling better today..... As usual, I am sending hugs your way that you will be feeling better real soon!!!!

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#21 deb

 
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Posted 21 August 2004 - 07:08 AM

Hey celiac3270,
Sorry you are having such a rough time. The Prilosec is a proton (sp) pump inhibitor. If the problem is to much acid production in your stomach than the Prilosec should help. I was proscribed it a year ago after I had my stomach scoped. They were looking for ulcers as an explanation for my pain. No ulcers but they did find a small hiatal hernia. I had to take 2 pills also for 3 months. I think it helped some what with stomach pain but did nothing for my other intestinal symptoms. Something our family uses for upset stomach, nausea or stomach pain is papaya enzyme. you can eat 3 of them right after meals to help also. they taste good also. Hope you get to feeling better really soooon!!!

Take care,
Deb :wub:
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#22 Canadian Karen

 
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Posted 21 August 2004 - 07:19 AM

Hi celiac3270,

I just thought of something else..... Have they looked at your gall bladder for the source of your problems? I have a friend who went through very much the same thing with the vomiting and the acid, etc. and her gall bladder had to be removed. She feel 10 times better after the surgery.....

Just a thought.......

Hugs.
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#23 celiac3270

 
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Posted 21 August 2004 - 09:48 AM

Did you read my post about going to the dr? I wanted to let you know that he told me not to have any bananas, apples, cherries, plums, prunes OR THEIR JUICES..
Now, that is because of the diarrhea, so I don't know if that would apply to you in regards to the Tropicana Freshed Pressed Apple Juice..... Did you try it? Maybe that is what didn't agree with you...... and if it turns out to be that, I will feel like c*r*a*p........

I actually haven't tried the apple juice, cause I know it can be kinda heavy on the stomach. The main sugar thing my doctor wanted me to stay away from was the sugar in certain high-sugar fruits like watermelon and grapes. The skin of apples wasn't too good for me, he said, either. Bananas are okay, he said, but I haven't had any fruit since my sugar-limited thing. He didn't actually say to stay away from all sugar or most sugar; just mentioned those fruits, but I figure it would make sense to avoid unnecessary sugar like the stuff in icings, candies, and sodas (although I did have soda while I was sick cause it helped....you just let it sit awhile so the carbonation goes and you don't get gassy).

I had to take 2 pills also for 3 months. I think it helped some what with stomach pain but did nothing for my other intestinal symptoms. Something our family uses for upset stomach, nausea or stomach pain is papaya enzyme. you can eat 3 of them right after meals to help also. they taste good also. Hope you get to feeling better really soooon!!!

I'm glad to hear that you took Prilosec 2 pills for 3 months, cause although I trust my doctor with prescribing it, I was sort of scared to read the label and see that you're only supposed to take it daily for 14 days if you're over 18. I guess, it did say, though, to talk to your doctor for longer periods of time or if you're under 18.

I just thought of something else..... Have they looked at your gall bladder for the source of your problems? I have a friend who went through very much the same thing with the vomiting and the acid, etc. and her gall bladder had to be removed. She feel 10 times better after the surgery.....

I don't think they've looked at my gallbladder. How do they check that (bloodwork, some sort of scope) ? I'll talk to my mom about that. Thanks for the suggestion.

-celiac3270
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#24 celiac3270

 
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Posted 21 August 2004 - 09:52 AM

Karen: My mom wrote down your gallbladder suggestion and she'll ask the doctor about that next time we see him.

Thanks to both of you for replying.

-celiac3270
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#25 Alexolua

 
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Posted 21 August 2004 - 12:02 PM

I was sort of scared to read the label and see that you're only supposed to take it daily for 14 days if you're over 18.

celiac3270, not trying to scare you or anything! But what's the label say for those under 18? Usually drugs get tested on adults, and they don't always make sure it's safe for kids. Or at least, that's how they use to do it. Assume kids to be "smaller adults" which isn't true.

Think it'd be good to drill your doctor on what kind of testing was done with it on kids, to be safe? Or don't mind me, I can be a tad paraniod. =)

Oops.. edit, lol.. it does tell you to talk to your doctor on the label if under 18, so be good to do that before taking it, LOL.

Edited by Alexolua, 21 August 2004 - 12:04 PM.

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#26 celiac3270

 
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Posted 21 August 2004 - 01:49 PM

Alexolua, under the directions, it says:

Adults 18 years or older

and then stuff about once a day, it may take 1-4 days to feel relief, though some feel better in 24 hours, etc.

Probably the reason I was scared of it was because I weigh so little, anyway. The doc. does know my weight, though, so I guess he should've taken that into account.
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#27 celiac3270

 
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Posted 21 August 2004 - 01:59 PM

I should probably also mention that I'm using Prilosec OTC, not the prescription. The doctor fully realized that it was 20 mg. and recommended the dosage of two daily. I'm going back to him, this week, I think, cause he goes on vacation at the end of the week, so I can double check on that. Perhaps, on the over-the-counter version they try to be more cautious with labelings? I don't know.....I think I can trust the doctor, but I'll ask him about that.
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#28 kvandorselaer

 
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Posted 21 August 2004 - 08:33 PM

Hey! I have to tell you that i was diagnosed 3 years ago this week ( i only know because i was so sick and in the hospital), and I am just now getting rid of most of the symptoms you have described. I can only say that it really does take time for your body to adjust and not have the bloating, vomiting, ridiculously uncomfortable feeling.. hang in there cuz it will get better. :D
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#29 Alexolua

 
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Posted 21 August 2004 - 08:45 PM

celiac3270, yeah if yer seeing the doctor, best to be double safe and check with him. =)

I do know drugs that were for depression, were marketed to kids when they were only tested on adults. Assuming kids as little adults, but kids chemically have differences since they are still growing and developing, unlike adults.

That's why I speak up. Though I don't know if that practice continues, or happens with other drugs. But better safe than sorry!
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#30 celiac3270

 
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Posted 22 August 2004 - 08:36 AM

Hey! I have to tell you that i was diagnosed 3 years ago this week ( i only know because i was so sick and in the hospital), and I am just now getting rid of most of the symptoms you have described. I can only say that it really does take time for your body to adjust and not have the bloating, vomiting, ridiculously uncomfortable feeling.. hang in there cuz it will get better. 


Wow, kvandorselaer.........3 years?!?! And I think six months is a long time. Sorry it took you that long, but thanks for sharing that.

I will be seeing my doctor this week.....my mom wants to ask him about possible problems.......gallbladder as Karen sugested, ulcers? I don't know much about these, but maybe the doctor could tell me. Thanks for your concerns, Alexolua, I'll ask him. :)

-celiac3270
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