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DarkIvy

Had Endoscopy Today

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Today I FINALLY got the endoscopy done. I guess it went alright... not like I remember too much of anything. Mom says I woke up and asked "where is the dog?" but I don't even remember that. We don't even HAVE a dog!

They gave me some papers with pictures of everything they saw and some reccomendations. The actual biopsy results will come back in a week and a half. I think they took 6 samples from my small intenstine.

The doctor said he didn't see any inflamation in the small intestine, and really doesn't suspect celiac. They also saw a lot of bile in my stomach, which they said was very unusual. They want me to take Prilosec for it and schedule an appointment to do further testing. Apparently they want me to eat something that's been filled with radioactive matter and find out how fast it goes through my system. I don't really trust this doctor much in the first place, so I want a second opinion before I do anything like that. I wonder: could the extra bile be something simple? I wasn't able to drink as much of the laxative that I was supposed to last night... was that the reason nothing cleared? Or is my digestive system just so messed up right now that it's not functioning properly? My dad thinks that once I've been gluten free for a while, maybe this too will solve itself. Any thoughts?

The good news is, before I was sedated, I talked to the doctor a bit and he said that while he doesn't suspect celiac, if I feel better without gluten, I shouldn't be eating it. He said that it could very well be an intolerance. In all the paperwork, it states that I should go gluten free, and he signed it, so that should be good enough to have special arrangements be made at the sorority house. Yay! I can't wait to start feeling better!


Liz

GLUTEN FREE 06/13/07

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You know, there is no way your doctor can see if it is celiac disease with the naked eye. The biopsy results could very well still come back celiac disease.

But I am glad your doctor signed the paper saying you should be eating gluten-free. Don't bother with the Prilosec for now, your dad is right, eliminating gluten may well take care of the excess bile.

As for those other tests, I would hold off on those for a while. You may just improve so dramatically on the gluten-free diet, that no further testing will be needed.

I hope everything works out for you and you will start feeling well soon.


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 agree totally with what Ursa said. I would also skip the prilosec for now, just get thee gluten free and you will most likely find you do not need it. There can also be some nasty rebound effects from this type of med. If you get stomach pain when glutened often Pepto Bismal can relieve it very quickly with just one dose and the only side effect may be some darkenting of the stool.

Ursa, that is a wonderful picture of you, you look so happy.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi DarkIvy,

Glad to hear you had the biopsy done. The wait for the results seems to take forever. If you have problems with college or the house regardign your gluten-free diet, look into getting a 504 plan. It can mandate how the school will address your diet and issues that go along with it like housing.

I've had that radioactive test done. It sounds like a Gastric Emptying test. The doctor is trying to see if your stomach is working properly. I don't know whta your symptoms are...the reason you suspect Celiacs? But I would have the gastric emtpying test done now. It is not bad. You go to a Nuclear medicine lab, mine was at the local hospital. They microwave an egg w/radioactive material. Comes out like a scrambled egg. You can add salt and pepper to taste. You eat the egg and then they have you lay still and the take pictures to see the rate that your stomach is emptying. My stomach barely emptied anything in an hour. (My gallbladder wasn't working either, so they took that out.) In my case, I have Gastroparesis. I had considerable pain from it. I took medicine and later found out about Celiacs. Now, I used herbals to help with my stomach emptying problems and they are sporadic.

Best of luck

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Hi DarkIvy,

Glad to hear you had the biopsy done. The wait for the results seems to take forever. If you have problems with college or the house regardign your gluten-free diet, look into getting a 504 plan. It can mandate how the school will address your diet and issues that go along with it like housing.

I've had that radioactive test done. It sounds like a Gastric Emptying test. The doctor is trying to see if your stomach is working properly. I don't know whta your symptoms are...the reason you suspect Celiacs? But I would have the gastric emtpying test done now. It is not bad. You go to a Nuclear medicine lab, mine was at the local hospital. They microwave an egg w/radioactive material. Comes out like a scrambled egg. You can add salt and pepper to taste. You eat the egg and then they have you lay still and the take pictures to see the rate that your stomach is emptying. My stomach barely emptied anything in an hour. (My gallbladder wasn't working either, so they took that out.) In my case, I have Gastroparesis. I had considerable pain from it. I took medicine and later found out about Celiacs. Now, I used herbals to help with my stomach emptying problems and they are sporadic.

Best of luck

I've never heard of the 504 plan... what is it? Would it be directly through the school? I'm thinking it might not matter to have to school get involved, as I'll be in a sorority house and each house basically runs itself. All special accomodations are made through the chapter itself, and the university doesn't get directly involved with anything.

The reason I suspected celiac in the first place was because my grandma has it and I have a lot of the same symptoms she does. I went through a trial period of being gluten free for about three or four weeks and the symptoms all disappeared.

Thanks for the info about the stomach emptying thing. I was feeling pretty wary of it since they told me all of this when I was still waking up from the sedation... I don't really remember much of what they said! It's all in the paperwork they gave me but I can't ask it questions, lol. I'm not entirely trusting of the GI I've currently got, since there were some other major issues with him. I still just think it's best to hold off for a while. In any case, I need to wait for them to find out if our insurance will cover this and I really want a second opinion.


Liz

GLUTEN FREE 06/13/07

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Get a second opinion. Find someone else who can personally recommend a Gastro in your area- preferably one who knows about Celiacs :)

The 504 plan can be used in the colleges, but it may not be necessary. Like you said you will be living in the soroity house and it is managed differently. A 504 is used mainly for special needs when things at school need to be modified for learning purposes. The food allergies and celiacs fit in this category. I am looking into getting a 504 for one of my kids with a nut allergy. In her case, the 504 would spell out how medication is stored adn who is trained to administer it, how the lunch room is handled, food related parties and snacks in the classroom, field trips, etc. But she is six. You would only need a 504 if you are having major problems at the school regarding Celiacs and special foods - like needing to be in a dorm with a kitchen so you can cook your meals. .. or being a freshman who is required to live in a dorm when you really need an apt due to your Celiacs.

If you need it, you request a 504 evaluation meeting with the school, you state why you need the 504 and what you want covered and then it goes from there.

Hope you start feeling better soon

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Get a second opinion. Find someone else who can personally recommend a Gastro in your area- preferably one who knows about Celiacs :)

The 504 plan can be used in the colleges, but it may not be necessary. Like you said you will be living in the soroity house and it is managed differently. A 504 is used mainly for special needs when things at school need to be modified for learning purposes. The food allergies and celiacs fit in this category. I am looking into getting a 504 for one of my kids with a nut allergy. In her case, the 504 would spell out how medication is stored adn who is trained to administer it, how the lunch room is handled, food related parties and snacks in the classroom, field trips, etc. But she is six. You would only need a 504 if you are having major problems at the school regarding Celiacs and special foods - like needing to be in a dorm with a kitchen so you can cook your meals. .. or being a freshman who is required to live in a dorm when you really need an apt due to your Celiacs.

If you need it, you request a 504 evaluation meeting with the school, you state why you need the 504 and what you want covered and then it goes from there.

Hope you start feeling better soon

Ohh 504... Basically that's what our school calls "disability". I'll be a junior, I won't be living in the dorms anymore, so I don't have to worry about that. I looked up my schools policy on this sort of thing and didn't see anything even LIKE celiac listed on the website. Mainly it's for students who are ADD or "learning disabled" and need test taking accomodations, or for a physical disability that makes getting to class more difficult. I thought about registering... sometimes if I eat gluten I get sick for days and can't go to my classes, and even though I go to a huge university, a lot of the professors will count "excessive absences" against you and lower your final grade because of it. I've heard of some universities counting celiac as valid reason to miss class, so it won't hurt your grade. I'm not sure mine does. I think I'll check into that once I get the results.


Liz

GLUTEN FREE 06/13/07

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You might want to look into it for test taking purposes. BTW, It is doubtful that your school had a policy on Celiacs. The 504 does apply to celiacs and food allergies in a public institution. Private schools handle it differently. Most people have never heard of Celiacs although that is getting better. I can't imagine getting accidentily glutened prior to final exams or a major paper.

I would think the 504 could be used to deal with gluten reactions like serious medicine head lack of focus problems, final exams, and stuff like that. Maybe a tape recorder is allowed for certain times when you are having problems?? But, I don't know how a professor would not feel that you just want an extension on a paper rather than you really are sick. It's a fine line. Maybe just talking to all of you professors at the beginning of each semester is all you need, but the 504 gives you legal rights that's why it can be helpful.

Good luck with it.

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You might want to look into it for test taking purposes. BTW, It is doubtful that your school had a policy on Celiacs. The 504 does apply to celiacs and food allergies in a public institution. Private schools handle it differently. Most people have never heard of Celiacs although that is getting better. I can't imagine getting accidentily glutened prior to final exams or a major paper.

I would think the 504 could be used to deal with gluten reactions like serious medicine head lack of focus problems, final exams, and stuff like that. Maybe a tape recorder is allowed for certain times when you are having problems?? But, I don't know how a professor would not feel that you just want an extension on a paper rather than you really are sick. It's a fine line. Maybe just talking to all of you professors at the beginning of each semester is all you need, but the 504 gives you legal rights that's why it can be helpful.

Good luck with it.

I think you may be right about just talking to the professors in the beginning and leaving it at that. I've found that open communication is usually the best thing you can do when it comes to school... if you come right out and talk to the professors right from the start of things, they're usually more open to cutting you some slack.

Besides, I'm not sure how much "disability services" can do for me in a university with 25,000+ students. Most professors are reasonable about such situations, anyway. If it becomes I problem, I may try to pursue the "disability" thing but otherwise it's probably not worth the effort.


Liz

GLUTEN FREE 06/13/07

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Honestly, I would consider sticking with this doctor despite his horrible bedside manner. Now that he has done the scope and seen for himself something isn't working properly, it sounds like he is commited to solving the problem. I would do the other test he is suggesting. It could very well turn out that the biopsy is negative,and you won't be able to get a doctor's diagnosis for celiac. You may just not have enough damage yet, and if that's the case, changing doctors won't neccesarily help. Even if your dad is right, and going off gluten will solve your problems, it might take awhile for the effects of the diet to take, and in the meantime, you'll have the piece of mind that there is nothing else the matter with your stomach. I hate to say it, but often with surgeons, the jerks are the best ones. They don't know how to talk to people, but once they can look inside you, they know what they're doing. Going to another doctor would mean having to convince them all over again to take you seriously. I personally couldn't handle that.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Apparently they want me to eat something that's been filled with radioactive matter and find out how fast it goes through my system.

Hahaha! At about 2 months old my daughter had that done. You should have SEEN the look on my face when the tech handed me a bottle full of the stuff to feed her and said "don't get any on your skin"....

It IS a very simple, easy procedure that does not do you any harm. If they do it routinely to a 2 month old, I'm sure it is just as safe for an adult. Good luck with it :) Be sure though, that if they prescribe you Reglan, that you talk at LENGTH with them about the side effects of that medication and what signs to look for. It has common neurological side effects. It gave my daughter seizures actually. It is a good medicine when it works without side effects, but it needs to be monitored.


~Sorry for the million questions, I really want to learn as much as I can!~

04/07 - Diagnosed Fibromyalgia

05/07 -Diagnosed Celiac from test & symptoms - scheduled for biopsy

~Also intolerant to milk, soy & beef

Daughter - 2yo - tested negative 03/07 for Celiac

-allergic to milk and soy

-retesting Celiac soon due to symptoms~

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Thanks guys, for the input. I've decided to go ahead and keep the appointment... why not, I suppose.

We'll see what happens!


Liz

GLUTEN FREE 06/13/07

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