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super_sally888

My Dr. Prescribed Zelnorm

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Finally saw my dr. today - about 5 weeks late. The test results only showed IBD (chronic inflammation) - which he also saw in the endoscopy, but only showed in the biopsy from the colonoscopy. He said the IBD could be treated with antibiotics in case it is caused by bacteria. They didn't see bacteria or amoeba with the biopsy. He said at least anything serious has been ruled out! No more for him to do...

Then he said it could all be caused by stress and prescribed zelnorm. I said isn't this for IBS. He said yes! And admitted that IBS is a trash basket diagnosis (the blight of having an educated patient!). I said I wanted to find out the causes rather than treat symptoms. Asked him about food intolerances. He wasn't really interested but said I could see an allergologist if I wanted (on my own). Said they don't test for celiac here. Was up to me to take zelnorm if I wanted and if symptoms were unbearable.

Am so frustrated! I feel strongly that food is involved. Got really itchy after lunch (no wheat or related as far as I could tell). Wish I knew what was going on.

I guess I am really on my own on this. I don't want to do really strict elimination diet... will be difficult. But maybe no choice if I can't get anywhere with this. Any ideas? Stomach pain and D is improved with no gluten (though I guess could still be getting contaminated).. but still having some problems. Having major energy crashes after eating... particularly lunch times (that lead in muscles feeling). Am so useless in the afternoons - is very demoralising.. though seem to feel better by evening...

Now I am definitely stressed! Anyway, I will get there...

Have a nice weekend!

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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Sally, do you still consume dairy and/or soy? Those are the most likely other foods to be causing problems. If eliminating those won't help, try taking all lectins out of your diet. Including all the nightshades. To find out more about lectins, follow the link in my signature.

I find that especially eggs, rice and potatoes give me diarrhea and joint pain besides gluten foods (and gluten is a lectin).

Really, you have no choice but trying an elimination diet at this point. Forget about your doctor. He is like most of them, no time to really care and find out what wrong, let's mask symptoms instead. Easier, and makes them (and the big pharmaceutical companies) more money.

You are in control of your body and what you eat. You have choices, make the right ones. You don't need your doctor to try an elimination diet. True, it's easier if your doctor cooperates and guides you. But you can do it on your own, I did it, and many others here as well, and we managed to figure out our intolerances.

Don't get discouraged, and, most importantly, NEVER give up! You're worth the effort.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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i had to laugh to myself when i read this---not at your problem, but at the doc saying they don't check for celiac here??!! since when can't ANYPLACE not check for celiac. sounds like what he was really saying was "i don't think you have celiac, so i don't want to check for it." how weird!! i agree with ursula---try an elimination diet----and when you find info on how to proceed with it----will you please pass it on to me. i do not have celiac, but i think that some of my problems could be food related, too.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Hi Chrissy & Ursula,

Thanks for your responses.

Yes, I think I shall have to do an elimination diet. I think I will start with the most obvious suspects and avoid; all processed/colored junk foods/candy, gluten, dairy (except eggs), soy, seafood. This is so I can still have enough choice of foods (meats, fruit, vegetables, rice). I think one has to persist for a few weeks, and then add in foods one by one. With several days between each food being added in. At the same time I will also keep a food and symptom diary to note any symptoms or reactions.

I am an Australian living in Philippines. Apparently they really don't test for celiac here. It is not a widely known/recognised problem in Asia. I guess I should be grateful that my Dr. (maybe soon to be my ex-dr) has even heard of it. But why even mention it if he is not going to test for it, or give any advice (other than now he thinks I am hypochondriac, IBS).

I guess like they also don't test for parasites / bacterial infections and just give antibiotics... Any thoughts on use of antibiotic just in case the chronic inflammation seen with the biopsy is caused by bacterial infection??? I have not filled this prescription. Am uncomfortable with using antibiotics on a "just in case" basis. Could bacteria be the cause of inflammation throughout the GI tract??

Chrissy, I will do some more research on this elimination diet and reply further.

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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If it is gluten that you are reacting to, then you need to be aware that most soy sauces contain wheat (sorry if I'm repeating what you already know--it took me a while to figure that one out). What are your typical lunches? I tend to react the same way if I have a high-carb (even if the carbs are gluten-free), low-protein lunch.

It must be so frustrating to hear, "Sorry, we don't test for that disease here, we don't care that you might actually HAVE it, we don't test for that here, Here--take some drugs for something else!"

At least, you found this board, which offers more knowledge and support than you'd get from most US doctors!

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Sally, if you really want to be sure, and can afford it, I would suggest you get tested by Enterolab. They will do testing world wide. I know, it would be pricey to send your samples back by courier, but it would be worth it.

With the elimination diet, be aware that eggs and rice CAN be causing intolerances (I am very intolerant to both). So, if you don't feel better within a couple of weeks, you might have to eliminate those as well. I know it would be a bummer, but better than feeling sick.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Ursula,

Thanks. Wow, I didn't even bother looking up enterolab, assuming it is just for US. Ok - will check out and see how expensive and if it is feasible. At least I would know - for my own purposes!

Fingers crossed the rice and eggs are ok... else things will be really limited....

Fiddle-Faddle. Thanks for your input. No soy sauce for me... already knew that one. Lunches, food, mostly rice based now.... Guess am still slipping up somewhere - or maybe is something else... anyway, step by step I will work this out. At least now I am on the right track for finding out the culprits and making it right.

Thank goodness for this board.

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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Hi Ursula - thanks for your input,

I ordered enterolab celiac full panel today. It is expensive! But worth it to know if I am on the right track.

I know I'll get the package ok by courier, I guess. I hope I can send it out ok from Phils. I guess they know it will be ok or they wouldn't allow international clients...

Me just being paranoid...

What a day! My secretary is pregnant about 8 months - has preeclampsia... praying for her.. possibly emergency c-section coming up!

S


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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Am so frustrated! I feel strongly that food is involved. Got really itchy after lunch (no wheat or related as far as I could tell). Wish I knew what was going on.

I guess I am really on my own on this.

Sally

Dear Sally,

Don't feel like you are alone, you aren't! I have Both Celiac Disease and Dermatitis Herpetiformis (celiac disease/DH), that went untreated and suffering for more than three decades (plenty of hospital time!). I live in Talisay City, Cebu (Philippines for the rest of the readers) and what I have learned since it was discovered has really changed my life.

You will be hard pressed to find a doctor in the Philippines that knows anything about Celiac. Even though Spanish blood flows in almost every Filipino! In the USA and Canada I have Filipino Friends who are Celiacs and although Filipinos react a little differently, it is estimated that one in 97 has Celiac - doctors just choose to ignore it!

I am an American, but I have a Filipino adopted son, and one of my workers has a sickly son, both are affected by what we call Celiac Reactive Gluten because we find in the Philippines "Gluten" is usually confused with MSG (Ajinomoto or "betsin") which it is not.

Don't give up, it is worth it to find solutions! It is harder here. We do not have the labeling laws that Australia and the USA have, so you have to be wiser. We have started a list and we in the Philippines are helping each other. My health has improved greatly in the last few months as we discovered more and more Pinoy ways of dealing with Gluten.

I will send you a PM and maybe we can help each other.

Take Care,

Lan

PS: Most of the Readers here have no idea what it is like living in the Philippines. To get an idea, imagine living on the moon with an internet connection and a computer "doctor" whose software hadn't been updated in a long time! Ask an average doctor about Celiac and you will often get a largely blank look...

Hang in there Sally!

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Dear Sally,

Don't feel like you are alone, you aren't! I have Both Celiac Disease and Dermatitis Herpetiformis (celiac disease/DH), that went untreated and suffering for more than three decades (plenty of hospital time!). I live in Talisay City, Cebu (Philippines for the rest of the readers) and what I have learned since it was discovered has really changed my life.

You will be hard pressed to find a doctor in the Philippines that knows anything about Celiac. Even though Spanish blood flows in almost every Filipino! In the USA and Canada I have Filipino Friends who are Celiacs and although Filipinos react a little differently, it is estimated that one in 97 has Celiac - doctors just choose to ignore it!

I am an American, but I have a Filipino adopted son, and one of my workers has a sickly son, both are affected by what we call Celiac Reactive Gluten because we find in the Philippines "Gluten" is usually confused with MSG (Ajinomoto or "betsin") which it is not.

Don't give up, it is worth it to find solutions! It is harder here. We do not have the labeling laws that Australia and the USA have, so you have to be wiser. We have started a list and we in the Philippines are helping each other. My health has improved greatly in the last few months as we discovered more and more Pinoy ways of dealing with Gluten.

I will send you a PM and maybe we can help each other.

Take Care,

Lan

PS: Most of the Readers here have no idea what it is like living in the Philippines. To get an idea, imagine living on the moon with an internet connection and a computer "doctor" whose software hadn't been updated in a long time! Ask an average doctor about Celiac and you will often get a largely blank look...

Hang in there Sally!

Lan, how sweet of you to post and be so helpful! It makes me happy to see such great caring for fellow celiacs.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I agree, try the elimination diet.

I went to complete raw food / live food (rabbit food?) and that proved everything to me! I feel like a gluten magnet! Standing on a sidewalk near one of the many open air bakeshops is enough to cause me a reaction! There is flour in the air! (And on my hair and hands too!)

I use the Bragg Liquid Aminos (a soy sauce taste imported from the states) with some Natural Apple Cider vinegar and Calamansi (also called: China Orange, Acid Orange, Tropical Lemon, calamondin or use lemon juice if available). Over veggies it is great!

For a while it is strictly fruit and veggies. They say it may take a few months, but for me it was much quicker. In a few weeks I knew Gluten was ruining my life! After you are sure you are reactive to something, then start adding things (the things you want) one by one, eggs, milk, peanuts, and things that you suspect have gluten. Be careful of ALL grains at first. Likewise anything made from grains like rice noodles (made on the same machine with the wheat flour noodles!). Do not rely on the government or manufacturer - this isn't America. I went into a full blown Gluten reaction eating native Cocoa Chocolate. I found out that some vendors add flour to increase profits! Now we only get our Cacao from a secure source (my mother-in-law!)

Likewise if you are out of the USA - be careful of ALL processed foods. The same brand of Ketchup that is safe in the USA may have plenty of Gluten in the Philippines.

In the Philippines there is a tiny Gluten Free Philippines Community on the Kubo 4 Community site. It is not much and just starting, but it is still the only Philippine resource there is. If you live in Vietnam or another country where Celiac or Gluten Free information is almost non-existent - try to change that by giving something that will help your Celiac / Gluten free community in your country.

Help someone else... When we who suffer start sharing our success and failures then all benefit.

I happen to meet a Celiac online who is living in Vietnam - it is hard but we are in the same "region" and I told him the best he can do is educate the local doctors so that you can make a Motivated Celiac Club or local group. With Gluten Free, by helping others, we really help ourselves.

As Tiny Tim says every Christmas,

God Bless Us Every One!

-Lan

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