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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should I Get A 2Nd Opinion
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18 posts in this topic

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KikiUSA    4

My 16 year old daughter had both upper and lower GI done last week. The doctor took biopsies to check her for Celiac since I have it and she has been losing weight really fast. She now only weighs 98 pounds and she is 5'6". After my daughter came out of the proceedure the doctor showed me pictures of what she did and said that my daughter had alot of bile in her stomach and she had IBS and we would know about the Celiac at a later date.

My concern came in when she gave us a prescription that I took to be filled and the pharmasist was saying they could not fill it and that it was a dangerous pill for my 16 year old to be on and continued to say that I need to sign an agreement with the doctor on this medication stating that I understood the dangers of it!

The medication is Lotronex, it is the only medication for IBS I was told. Has anyone ever been on it? I really am afraid to put her on this medication and thinking I should get a second opinion.

Any input would be much appreciated.

thanks

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IrishHeart    1,634

Wow..when a pharmacist balks at filling a prescription, that would get my attention.

Here's a link to what the drug's side effects are--and the first few list gastro problems--now, why on earth would anyone want MORE gastro problems??

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000163/

Sounds like a pretty scary drug to me!

DEFINITELY a 2nd or 3rd opinion!

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maximoo    39

Jut out of curiosity I would call the Dr & ask why this med was chosen. The Dr could've made a mistake. Tell him/her you are not giving that poison to your DD. If the dr. cannot come up with anything better, then kick him/her to the curb. And you should get a 2nd opinion & maybe a new dr too.

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KikiUSA    4

Thanks everyone for responding....I will be getting a second opinion for sure!!!!!!!!!!!!

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ravenwoodglass    1,219

What that doctor should have done is told you to get your daughter on a trial of the diet, IMHO. IBS is not a diagnosis it is a symptom but instead of telling you to try the diet she gave you a script for a toxic med with scads of side effects and most likely a nice high copay.

Since she has had the biopsy, and with that doctor I would get copies of all blood work and the actual biopsy report, a trial of the diet is what you should do next. With your being a diagnosed celiac the chances that your DD is also is fairly high.

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Takala    413

Would suggest you further research as to whether this physician has had any sort of disciplinary action or just to moved to your state, or has attended a legitimate medical degree dispensing higher educational school of learning. :ph34r:

Good that the pharmacist caught it.

Eleven years ago the FDA knew that the maker of this drug had a problem:

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm110887.htm

11/29/2000

The manufacturer of Lotronex (alosetron) tablets -- a drug used to treat irritable bowel syndrome in women -- has voluntarily decided to withdraw Lotronex from the market after discussions with the Food and Drug Administration (FDA) on how to best manage risk.

This drug has been associated with reports of serious side effects such as intestinal damage as a result of reduced blood flow to the intestine (ischemic colitis), severely obstructed or ruptured bowels (complications of severe constipation), and death.

What is Lotronex?

Lotronex is a prescription medicine used to treat women with irritable bowel syndrome (IBS) who have diarrhea as their main symptom (diarrhea-predominant IBS). Lotronex has not been shown to help men with IBS.

What is IBS?

IBS is also called irritable colon and spastic colon. IBS causes lower abdominal pain and discomfort, urgency (a sudden need to have a bowel movement), and irregular bowel habits, such as diarrhea or constipation. In some people IBS causes mostly constipation; in others, mostly diarrhea; some people have alternating periods of diarrhea and constipation. Lotronex was approved only for women with diarrhea-predominant IBS

_________

the updated FDA Lotronex recommendations from 2 years later, 6/7/2002

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm110859.htm

1. What are the Food and Drug Administration (FDA) and GlaxoSmithKline (GSK) announcing today? (June 7 2002)

FDA and GSK are announcing FDA's decision to approve GSK's application to make the prescription drug Lotronex (alosetron) available again in the near future. Because of serious safety concerns, Lotronex will only be available through a restricted marketing program. Lotronex is only approved for women with severe diarrhea-predominant irritable bowel syndrome (d-IBS) who meet certain criteria. It is estimated that only 5% of IBS patients have severe IBS, and fewer have severe diarrhea-predominant IBS.

2. What are the restrictions for marketing Lotronex?

GSK has agreed to implement a Prescribing Program for Lotronex. Physicians enrolled in the program must attest to having certain qualifications and agree to fulfill specific responsibilities. Physicians enrolled in the Prescribing Program for Lotronex will agree to inform patients of the risks and benefits of Lotronex and to have patients sign a Patient-Physician Agreement indicating that they understand these risks and benefits. Enrolled physicians will then affix a sticker, which identifies the physician as a participant in the Prescribing Program for Lotronex, to each Lotronex prescription. This sticker will allow the pharmacist to identify that the prescription was written by a physician enrolled in the Prescribing Program for Lotronex.

3. What is Lotronex?

Lotronex is a medicine that slows the movement of stools through the bowels. Lotronex does not cure IBS and it will not help every person who takes it. For those who are helped, Lotronex reduces lower abdominal (stomach area) pain, abdominal discomfort, urgency (sudden need to have a bowel movement), and diarrhea of IBS. Patients who stop taking Lotronex may experience return of their IBS symptoms within 1 or 2 weeks.

4. Who should take Lotronex?

Lotronex is only approved for women with severe diarrhea-predominant IBS.

The following should be true for patients who take Lotronex:

The main IBS problem is diarrhea

IBS has gone on for a long time, 6 months or longer

A physician has informed the patient that symptoms are not due to other medical problems

Other IBS treatments have been tried and none has helped

IBS is thought to be very bad if a patient has one or more of the following problems:

Lots of painful stomach cramps or bloating

Inability to control the need to have a bowel movement or have "accidents" where underwear gets dirty from diarrhea or bowel movement (stools)

Inability to lead a normal home or work life because of the need to be near a bathroom

Unless all of these things are true, Lotronex should not be considered for use.

Women whose main IBS problem is constipation should not use Lotronex. Lotronex has not been shown to help men with IBS.

5. Why did GSK stop marketing Lotronex?

Lotronex was voluntarily withdrawn from the market by GSK on November 28, 2000, after discussions with FDA concerning the severity and number of adverse reactions resulting from the use of Lotronex. Lotronex has been associated with reports of serious intestinal conditions, including severe constipation and ischemic colitis. These conditions can lead to hospitalization, blood transfusions, surgery, and even death.

6. What is ischemic colitis?

Ischemic colitis is a condition resulting from reduced blood flow to the intestines, which causes serious intestinal damage, and sometimes death. Some of the signs and symptoms of ischemic colitis are new or worsening abdominal pain, fever, vomiting, bloody diarrhea, rectal bleeding and low back pain.

Since you are already celiac and your daughter is 5'-6" and under a 100 lbs and withering ("symptoms"), and this disease is hereditary, I doubt that slowing down the procession of the poison thru the intestines to the point of the potential for ischemic colitis is going to be very helpful. Notice the part I bolded above "a physician has informed the patient that symptoms are not due to other medical problems" how could the physician make that assumption without a genetics test, a trial of a gluten free diet with consideration given to other food intolerances such as lactose, soy, etc, and the RESULTS OF THE BIOPSY.

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ravenwoodglass    1,219

Would suggest you further research as to whether this physician has had any sort of disciplinary action or just to moved to your state, or has attended a legitimate medical degree dispensing higher educational school of learning. :ph34r:

Good that the pharmacist caught it.

Eleven years ago the FDA knew that the maker of this drug had a problem:

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm110887.htm

_________

the updated FDA Lotronex recommendations from 2 years later, 6/7/2002

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm110859.htm

Since you are already celiac and your daughter is 5'-6" and under a 100 lbs and withering ("symptoms"), and this disease is hereditary, I doubt that slowing down the procession of the poison thru the intestines to the point of the potential for ischemic colitis is going to be very helpful. Notice the part I bolded above "a physician has informed the patient that symptoms are not due to other medical problems" how could the physician make that assumption without a genetics test, a trial of a gluten free diet with consideration given to other food intolerances such as lactose, soy, etc, and the RESULTS OF THE BIOPSY.

In light of this I would also report the doctor to the AMA. This med should never have been prescribed for your daughter since your doctor doesn't even have the results of the biopsy yet. Wonder how many Lotronex goodies that doctor has like pens, pads etc.....

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IrishHeart    1,634

Like I said...when a PHARMACIST balks at it...it can't be good!!!

Good research, Takala!!

I would take this info into the office and WATCH the doctor as she reads it. This is a gross incompetence!

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mushroom    1,205

Wow, Kiki, I am glad you came on and asked. That sounds like one awful medication and one really bad doc :o

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Chiana    15

In light of this I would also report the doctor to the AMA. This med should never have been prescribed for your daughter since your doctor doesn't even have the results of the biopsy yet. Wonder how many Lotronex goodies that doctor has like pens, pads etc.....

The laws on that changed over a year ago. Pharmaceutical companies can't give away goodies anymore. My boyfriend's sister used to be a pharmaceutical rep.

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Darn210    174

Just also wanted to add that you shouldn't worry about offending your doc by wanting a second opinion. In a conversation with my former OB/GYN (she left her practice to go to law school :( ) she gave me some great advice . . . If a doctor is upset that you are going for a second opinion, then you don't want them for your doctor in the first place.

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ravenwoodglass    1,219

The laws on that changed over a year ago. Pharmaceutical companies can't give away goodies anymore. My boyfriend's sister used to be a pharmaceutical rep.

Good. Now if they would just get drug commercials off TV........

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KikiUSA    4

I am glad i did ask you all about this! I will be calling for a new doctor tomorrow for my daughter. I felt so uncomfortable with all of this and I am glad I turned here for help...Thanks everyone!

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I am glad you did not just give her the medication considering the pharmacist's reaction and the side effects of the drug. I would talk to her she is a teen and has a right to be involved in her treatment. My family did not know gluten intolerance runs in the family, so I did not know my food was making me sick, so I suffered for years. My boyfriend found a book and I gave a gluten free diet a try and it made me feel a lot better. It is inconvenient and annoying at times, but I would not cheat because I know how sick I was. I think your daughter might like how she feels if she gives up gluten and some of the other often offending foods (some people even seem to be able to return to some foods once their gut heals). I think she deserves to know the risks of treatment including medication and to have a role in her treatment.

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Skylark    935

I'm a little late to this thread, but you really don't want to put a kid on a black-box labeled drug (the big FDA warning box) unless there are no other options.

Also, Lotronex is not the only drug to treat IBS-D. Not by a longshot. When I was a child I took an old, much safer medicine called Bentyl. It helped quite a bit.

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Agreed! Our pharmacist caught that our dr had prescribed 10xs the correct dose of xyzal for our son, and combined it with a med with side effect of suicide despite our mental health history. Not only had she done that, she'd given us samples which we'd been giving him and he'd been sleeping so hard that he couldn't be woken! She also failed to notice that corn was a problem. Some allergist. Drs make mistakes and they don't know everything.

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cyberprof    62

I am glad i did ask you all about this! I will be calling for a new doctor tomorrow for my daughter. I felt so uncomfortable with all of this and I am glad I turned here for help...Thanks everyone!

So when do you get the biopsy results?

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