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Here We Go Again!

mela14

By mela14
in Coping with Celiac Disease

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mela14 Enthusiast
mela14
Posted

It seems that no matter what i do about my diet I am affectred in negative ways.

I have been gluten-free, soy free, dairy free, peanut free but am still getting sick.

The thing is that when I ate less I felt better but in light of the fact that I have lost so much weight I have been trying to eat more. Especially since I now know that I have food intolerance. I try to eat things that don't have offending ingredients but am still getting hit with horrible symtpoms.

I had my typical grilled chicken last night with baby greens (just a little olive oil). For desert, instead of cake we had dried figs, prunes and apricots (sweet tooth was acting up!) I've been avoiding starches too as I have been having terrible reactions!

while watching Idol my hubby brought out some Ciao Bella frozen lemon sorbet. I read all the ingredients.....nothing to worry...so i had a few teaspoons with him. by bedtime I started to cramp and became totally bloated! Then I started to feel sick. I tired to sleep but woke at 3:00 with muscle pain, a migraine, nausea and a sick feeling to my gut. My stomach was also buring so I took a Zantac (but only after I looked it up in the products manual....it was gluten-free). By 7:00 am I had more cramps and total explsive "D"! (don't mean to be gross).

today I am sitting here scratching my head again..unable to go to the office (again). The ony thing that I can think of is that in addition to probably having too much fiber with the dried fruits.....I probably cannot tolerate the potassium sulphate and sulfer dioxide that is used as a presevative. I checked those ingredients too before I had the fruit and they seemed safe but even though they are gluten-free I am reacting to them. I'm sure the lemon sorbet caused the burning....as it was very tart....Thank goodness I really didn't like it and didn't eat much.

It seems that each day something is getting me. i wish I weren't so hungry then I wouldn't look for things to eat. I have been clearing all the food that i eat with the nutritionist first. She recomended the sorbet and thought the dried fruits were a good idea. I guess we are finding out how sensitive I really am.

No more dried anything for me! I am learning this all the hard way! Hopefully I will get a diet in place so that my intestines won't be screaming afterwards!

anyone else have problems with dried fruits? or sorbet? the ingredients in the sorbet are:filtered water,lemon juice, sugar, pectin, guar gum.........so much for trying to be dairy free!

I'm getting a little discouraged here and tired of feeling sick! :(

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skbird Contributor
skbird
Posted

Hi Mel -

One thing I thought of, sometimes dried fruit is dusted with flour to keep it from sticking. Could that be the cause of that misery? Really sorry!

Stephanie

PS I saw in your signature that you have been diagnosed with IC. There is unfortunately a chance I have that, too... blech! I'm hoping it's something else! I have had four UTIs this past 6 months - but it turns out they aren't UTIs as there is no infection. There's a chance it's a hormone imbalance and frankly, I'm hoping for that...

mela14 Enthusiast
mela14
Posted
  • Author

Hi Stephanie,

thanks for the heads up on the dried fruit. I never thought about dusted flour but it could very well be. My muscles feel like they have been poisoned! I woke up moaning that I felt sick , nauseous and achy... and was rocking back on forth on the bed (a gluten reaction for me). I am still wiped and in pain. my head is going to explode!

I'm sorry that you might have IC. I think that all of these conditions are related to a messed up immune system. 4 UTIs are a lot for one year especially if there are no bacteria present. That was the case with me....but then again I had bladder problems as a child and started with urethral dilations at age 9! Again, I feel an underlying immune problem that was never recognized.

Did they do a cystoscopy? or hydrodistention...that seemd to help when they did it for me.

Hormones play an issue and I finally feel that my IC is better since being on the Estrogen patch! :P So, if you are perimenopausal you might want to look into that.

The other thing is diet....which is something I have been doing too. Try to avoid acidic foods. they will irritate or trigger a response. I take Prelief (it's gluten-free) with meals to cut down the acidity in my foods and beverages.

Soy is a big trigger for IC :angry: ...so be careful with that. I actually had to get a bladder instillation 2 weeks ago to calm my bladder down after i accidentally had soy.

I see one of the top IC doctors in the country who has been helping me a lot...but the real help for me came from Estrogen and reducing acid. I don't take any of the IC meds as I get terrible reactions from them (they probably have gluten or one of the many other things I am allergic too!)

Email me if you ever have any questions.

Hope you feel better soon! ;)

Bette Explorer
Bette
Posted

Hi Mel,

Sorry to hear of your huge dietary deliema's!! I wanted to pass along a link I came across, and bookmarked when I began searching the web like crazy for info. on this gluten intolerance stuff. I have not checked it out, nor am I affliated with it in anyway, but thought it was something I might have to look into in the future. It is a canadian Dr. who provides you with a liquid supplement to use (gluten, lactose free) while you go through a dietary cleanse. Can't vouch for it, but since you are so reactive to everything at this point, might be worth looking into. Open Original Shared Link.

I also have had 3 bladder hydrodistention, and I also get relief too. My bladder symptoms wax and wane. But definately have flared up again with my endometriosis coming back, so I agree, hormones have a lot to do with it.

Bette

mela14 Enthusiast
mela14
Posted
  • Author

HI bette,

thanks for the info on the nutramed. I will check it out. hopefully it doesn't have soy either!.

soy is a really bad irritant for people with IC. do you follow the IC diet? i can give you some diet tips whenever you like.

Hydrodistentions helped but I haven't had that done in years. The treatment of choice now....in the office... is bladder instillations. There are different things that they can put in there to calm the bladder down.

I've never been able to tolerate IC meds. they made me so sick....who knows what was in them.......hhhhhmmmmm

Why is your endo flarig up? Are you on hormones?

After my hysterectomy I did not get HRT for 2 years....i had terrible migraines...daily...more pelvic pain and burning...and worsening of IC. since going on an Estrogen patch in Nov...things have gotten so much better. The migraines were the first thing to get better.......everything else took a little longer but I can see such an improvement. If I slip up with my diet though my bladder starts screaming!

Incidentally.....after much research of my pathology reports........and continued symptoms I really don't think that endometriosis was the main problem. I think it was probably gluten related and drs misdiagnosing. It's such a crazy scenario that I get upset just thinking about it.

let me know if you need an IC info. :D

jenvan Collaborator
jenvan
Posted

Mel--

I am sorry to hear the mess you are in the midst of. When it rains, it pours huh? I had a terrible bout of health in high school. Had 2 ovarian cysts rupture, several endoscopies, dialations etc. etc., all coupled with cystitis that seemed to come from nowhere. Went to like 4 urologists, had a urethral dialation (ugh!) and went on months of antibiotics b/c they thought it might be caused by a low-grade infection. Eventually the cystitis went away for me, I haven't had problems with that for years... Unfortunately I'm not sure why it went away! Wish I had some wisdom on that. I did see you and Bette talking about hormones. The one correlation I can think of is with birth control... I started taking it for my cysts and not too far after the cystitis stopped. My other thought at the time was that it was related to anxiety, as I was a bit of a mess during that episode.

Hope this weekend is a better one for you...

mela14 Enthusiast
mela14
Posted
  • Author

Anxiety and stress will make the cystitis worse but it has to be there to begin with...for whatever reason. If you are lacking in hormones not only will it cause vaginal atrophy but it will do the same to the bladder. I think the estrogen helps to keep the bladder supple, which in turn causes less pain. Imagine how your bladder would hurt if it was dry and crackly...with all the fluids that pass through it. For me, I have to make sure that my diet is NOT acidic or my bladder acts up. The estrogen has made that better. I am now able to tolerate some veggies, like tomatoes (in moderation) and not be in agony!

I'm glad that you came out of that horrible bladder experience....whatever the reason was.

Hang in there! :D

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junevarn Rookie
junevarn
Posted

Hi Mel,

Do you know if there was fructose in the sorbet? I am intolerant to fructose. I was in San Francisco once , ate some and had to find a bathroom fast. I had to go into a hardware store where I had explosive diarrhea and then started throwing up. :(

Just a thought.

Take care,

June

pixiegirl Enthusiast
pixiegirl
Posted

Hey Mel...

I'm not sure what you can and can't eat, but if your interested you can tailor my suggestions to your dietary needs... I've been gluten-free since Sept 2004 and I've had really only 2 set backs, the first time on Thanksgiving (at my brothers house) and those symptoms I was able to get under control in about a week. And then 2 weeks ago I was again at my brothers house and we ate out every night and I spoke with every restaurant (chefs, maitre'd, servers..) and yet I feel like I got glutened every night, I went from bad to worse.

Anyhow here I am after 2 weeks still feeling sick as a dog... I still have the runs, sleeplessness, fatigue, stomach pain... I'm not doing well and I know for a fact I've not had any gluten since I've been home, but I'm not getting much better.

So just the other day someone on this forum suggested I go on a low residue diet, I did some research and decided to just start out with chicken and white rice.... and i'll add to it once I feel a little better. Well its only been 24 hours but I've not had a single dash to the bathroom and I've already added bananas and applesauce.

Even though I haven't had gluten since I've been back from Florida I think that my insides just got so damaged that they just won't really heal without a totally bland diet, I just couldn't handle the spices and such. So now I will add things back slowly and see what bothers me and what doesn't. When I get a reaction to something it happens rather fast so it will be easy for me to tell.

Anyhow you might want to try this for a few days and see if it helps.

Susan

mela14 Enthusiast
mela14
Posted
  • Author

Thanks Susan,

I'm already doing a very plain diet. I can't even have the rice. It is too starchy and blows me up!

I found that the figs I was having......were making me violently sick. They WERE dusted with flour! Who knew....thank goodness Stephanie pointed it out to me ...I stopped eating them and was finally able to sleep through the night....without getting up sick at 3 am....

I am watching everything I eat....but today got sick at a catering hall restaraunt. I placed a post elsewhere.........but very quickly....I took all the precautions and ate what I thought was OK. then got sick. The only thing I could think of is cross contamination....I am realizing more and more that I am sooooo sensitive to the smallest amount and that most people do not go to the extreme that we go to.

Hopefully, this won't be as bad as during the week. I just can't take much more.

I have lots of functions to attend in the next few weeks.......I am learning the hard way how to do all this. Maybe I should just stay home...... :angry:

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