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Still Sick, What Do I Do?


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21 replies to this topic

#1 Thomas

 
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Posted 21 May 2004 - 11:26 PM

I thought that it might be something I've eaten, so I posted a couple times about certain products. Are there other non-gluten-free things to cut out?
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#2 taneil

 
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Posted 22 May 2004 - 11:03 AM

When I had the enterolab test done, I was told that since I have both genes I am more predisposed to not only celiac disease but also microscopic colitis and other autoimmune syndromes. So, yes you could have something more than Gluten Intolerance...

Have you cut out dairy and eggs? You might try that if you are eating them and see what happens.
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Taneil
Enterolab Diagnosed May 2004
gluten-free/CF and have both genes

Psalm 27:13-14
I would have despaired unless I had believed that I would see the goodness of the LORD In the land of the living. Wait for the LORD;
Be strong and let your heart take courage; Yes, wait for the LORD.

#3 YankeeDB

 
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Posted 26 May 2004 - 06:16 AM

Smith, it sounds like you really need to see a gastrointestinal doctor no matter what. Your situation sounds complex and professional help is in order. I wish it were simpler and possible to suggest something here that would help you, but that is probably not feasible and so not in your best interest. Just my opinion and good luck to you!
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#4 SteveW

 
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Posted 31 May 2004 - 04:37 AM

Go to a GI.You may have more serious issues than Celiac Diesease.

I was Gluten Free for 5 months( after + blood work and + biopsy)- felt worse than ever until I was put on Prednisone.
My GI ran a IBD test and it came back positive for Chrons. I feel better now and have gained back 10 lbs.

I still can't eat Soy,Dairy,Corn, and Gluten.
Also Fruit bothers me BIG TIME. Fruit Juice is even worse, one sip and I feel like I'm being stabed in the stomach. And yes the juice is gluten-free.

All I eat is Rice,Beans,Veggies,Chicken,Fish and once or twice a week Eggs. Boring but effective.
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#5 Chaz

 
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Posted 31 May 2004 - 05:10 PM

With those symptoms you should really see a GI doc.You can certainly have other serious conditions in addition to the celiac disease,or perhaps as a result of it.In reference to the heartburn,this is not something to take lightly.When they did an EGD and discovered I had celiac sprue they also discovered I had a condition called Barrets Esophagus which can be related to acid reflux and heartburn and is a significant risk factor for cancer of the esophagus.They take it seriously enough to check it with an endoscope every year.I also had severe abdominal pain during a crisis period that led to diagnosis.My original GI doc was skeptical about the sprue as a source of the pain and surmised that it might be referred pain from the Barrett's,but he wasn't sure about that either.Apparently nothing is too clearcut when it comes to the GI tract.I would advise seeing a doctor sooner rather than later with those symptoms.
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#6 KayJay

 
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Posted 31 May 2004 - 08:24 PM

I think you should go and see a doctor for sure, I hope you get to feeling better soon and find out what is wrong with you. Also I know it has been in the media lately to be careful when eating fish with high amount of mercury. tell your doctor that you have been eating a lot of fish, that could make you very sick.
get well soon
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gluten-free since 2004!

#7 flagbabyds

 
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Posted 01 June 2004 - 08:11 AM

go to a GI doctor right away!
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Molly

#8 Thomas

 
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Posted 20 June 2004 - 10:09 AM

Thanks for all the replies.
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#9 j9n

 
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Posted 20 June 2004 - 11:12 AM

Is there any way you can call your doctor? I would be concerned about the stomach pain so amny things can cause it.
I have GERD (reflux)and I know that anything acidic is bad. Also tea, coffee and chocolate can cause flareups even if decaffinated. Right now the liquid I drink is water.
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#10 EddieJP125

 
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Posted 23 June 2004 - 02:47 PM

i had abdominal pain and they did an endoscopy and other stuff it turned out that i had an ulcer...
might want to ask a dr. to go through a similar procedure
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#11 Guest_gillian502_*

 
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Posted 24 June 2004 - 10:02 AM

If I had that much pain you couldn't pay me to wait until September! Even though it will not be the doctor you want it to be, see a dr. now. Why wait and suffer? They could at least give you something for the heartburn.
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#12 Thomas

 
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Posted 24 June 2004 - 01:15 PM

Thanks for the advice
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#13 Sara Lydia

 
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Posted 24 June 2004 - 01:17 PM

I hope everyone gets a chance to read this. I am new to this site, and board. I actually came here to find a doctor... but after reading your post wanted to strongly -- STRONGLY-- reccommend the Specific Carbohydrate Diet. It may be that you are a Celiac with many other physical problems making you more sensitive to not only "gluten", but more specific ingredients as well. Reeses Butter Cups are NOT completely gluten free, they have so many added starches in them that all ingredients are not completely listed. Dont think "oh such a 'small' amount wont hurt me". Sometimes you can eat an entire loaf of bread and feel fine... and then a month later take ONE tiny bite of a bagel and be sick for two days. Dont underestimate the sensitivity of your tummy!
The SCD diet is a miracle. I, too, was diagnosed and lived gluten free for years, but pain persisted... and tests came back "okay". So what was the problem?
I read this website: http://www.breakingt...iouscycle.info/ and then bought the book, after only three days I was completely symptom free! It is alot more specific to follow than a gluten free diet, but many recipe resources and very healthy. I even lost 20 lbs in 3 weeks... hard for someone with hypo thryoid [ahem... disease of the thyroid brought on by undiagnosed autoimmune disorders- ie; Celiac]... I would check that out.

please, you and anyone reading this... talk to your doctor and read this website... I challenge ALL Celiacs to just please try this diet for ONE month. fatigue = gone, pain= gone.

no rice, no rice flour, etc... just read.

www.breakingtheviciouscycle.info/

Sara :D
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#14 celiac3270

 
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Posted 25 June 2004 - 05:22 AM

...I don't know about that....I mean, celiac disease cuts out a lot, but then, when you cut out basic things like corn, arrowroot....I mean, these are the only substitutions we have for wheat and barley.....it's hard enough to find out if foods are gluten-free, but when you then have to check labels of the gluten-free foods to find things that are wrong with THIS diet?....I mean, I don't make decisions for others, but personally, I think that sounds kind of crazy.....

-celiac3270
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#15 Sara Lydia

 
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Posted 25 June 2004 - 05:43 AM

Hey- that's all up to you. No offense but I spent 2 years in complete agony. PICK YOUR BATTLES... corn chips and brown rice? constipation one week... then diahrea the next, dimobilizing pain, fatigue? This diet is very specific, but NO worse than gluten free! All you are doing is further elliminating starches and complex carbohydrates. And how much do you wanna bet you cheat every once in a while? I do. Lets not lie to ourselves. Oh- a tiny bite of that yogurt wont kill me.

I have NEVER felt this healthy in my life. I know how hard it was at first to go after this diet in the beginning but I was willing to try anything. I understand how limited you feel. But anyone else willing to go for it, I highly recommend it.

I am only 24 yrs old, cynical myself and not one to be all about "Wholefoods" and farmers markets, vitamins, bla bla bla.

But I wouldnt change anything about this now. I feel perfect. I feel terrible if your pains and symptoms persist. Maybe try this for a week? There is still SOOO much you can eat if you get a yoghurt maker:

http://www.scdiet.or...pes/indexa.html

see?

and ps. if anyone is in the Washington DC/Baltimore area, let me know if you know a good specialist! thanks!
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