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Prednisone As Treatment?


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31 replies to this topic

#16 Guest_gillian502_*

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Posted 30 October 2004 - 10:00 AM

That is so depressing to hear about Entocort. I was really hoping to take it, and I'm not going near Prednisone. Did the company tell you that recently? I spoke to them about 2 months ago when they said they were beginnning to believe it was gluten-free but were not completely done with their investigation of it. Is there a generic yet that you know of?
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#17 SteveW

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Posted 30 October 2004 - 12:37 PM

I called 2 weeks ago. Trying to avoid another go round with the devil drug but...... I was a little shocked that a company doesn't know EXACTLY what is in there product!!!!

No generics yet. I wouldn't recommend generic drug for us Celiacs unless it's clearly stated as gluten-free.
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#18 debmidge

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Posted 01 November 2004 - 03:12 AM

It's absolutely evil :angry: for a drug company, prescription and OTC, not to know what's in their product. The FDA regulates them, so perhaps it's in our best interest to let the FDA know that we are unhappy with these types of answers:

1) We don't know if the product is gluten free.

2) We don't know if our suppliers ingredients are gluten-free because they change from time to time.

3) We'll have to call you back when we know (I got that one from a vitamin company and it's been about 3 weeks and I am still waiting; I call THEM every week. This company is Puritan's Pride. Never order again)

4) And I got this one recently (not verbatim): We are aware of a lot of food allergies. Many people are alleric to nuts and it's deadly (the Cust Ser rep. pretty much told me to count my blessings that the gluten sensitivity is not deadly like peanut allergy! Oh, and they can't put ALL ingredients that are sources of sensitivity on the label. This company was Fiber Choice chewable fiber tablets)

5) and this is the best one: We can't guarantee that cross contamination doesn't occur during the manufacturing process.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#19 Guest_gillian502_*

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Posted 01 November 2004 - 11:13 AM

I also want to add that somebody needs to do something about all the clueless pharmacists out there. I'm sick of having to get all the information about the company that supplies the product, their number and address, etc., so I can make all the calls and await the responses about gluten in their meds. Why aren't the pharmacists being trained to do this? Shouldn't this be part of their job? I take a lot of meds so this is a constant annoyance for me. My local pharmacist has never heard of gluten and doesn't even know what it is, even though I've asked about at least 10 times now. They should at least know what this stuff means. I'm tired of doing these people's jobs for them.
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#20 lovegrov

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Posted 01 November 2004 - 12:44 PM

I've always considered it my job to find out whether a product has gluten. I don't trust somebody else to do it.

Do you expect your grocer to know whether there's gluten in all the products he sells? If not, why would you expect the pharmacist to know? Remember that there's something like 100,000 medications on the market.

richard
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#21 angel_jd1

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Posted 01 November 2004 - 02:31 PM

I work in 2 pharmacies as a pharmacy technician. I would NEVER ask my pharmacist to do the footwork for me. They are WAY too busy and stressed to take time out of their day to sit on hold for 45 min with a drug company to find out ingredients.

It is sooo much easier for everyone involved if you find out the drug manufacturer and call them yourself. Then you aren't getting second hand information. You can also ask any questions you feel are necessary, and it's one less headache for a busy person who needs to do their job. :)

Just my 2 cents !

-Jessica
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#22 Guest_gillian502_*

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Posted 01 November 2004 - 03:09 PM

Sorry but a grocer is not the same to me as a pharmacist. I think it is lazy for a pharmacist to never have heard of the word gluten, that's just my opinion. I didn't mean any disrespect by it, but I'm getting tired of people who haven't heard the word gluten and haven't bothered to learn. If I'm the only one who feels this way, so be it.
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#23 debmidge

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Posted 01 November 2004 - 05:36 PM

Sorry, I too think it's the pharmacist's job to look up the info. I am sure that the PDR lists ingredients and every pharmacy has this book, or has access to it on line. Pharmacists are licensed and it's part of their job. I'd even compromise if the pharmacist or assistant would "assist" me by providing me with the drug company's toll free (or not toll free) phone number and I'll find out myself.
My pharmacist pulled this one on me, as he didn't know what gluten was and said he didn't have the generic drug company's phone number and couldn't help me. Well I "fired" that pharamacy that day and get my prescriptions elsewhere. If I can't turn to the pharmacy for help on their own prescription, then who can I turn to?
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#24 Guest_Libbyk_*

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Posted 01 November 2004 - 05:51 PM

pturse-
back to your original thread, I was also put on Prednizone when I was first (very conclusively) dianosed. I was taking (I think) 20 a day, then tapered after a couple months. I had some mild side effects, but it made a dramatic improvement in my well being, I was able to keep food in me longer, instead of feeling like a hose.

I took myself off of it, and 11 months later, I feel way better than I have in years, but not all the way where I want to be. I was having frequent relapses, some traceable to contamination, others not. I went back on a very low dose (5 mg, once a day) and have felt no side affects, but also not as fragile.

I hate to say it, but I feel better. And I am very anti drug. My doctor explained it to me as the steroids reducing the inflamation enough for my body to be able to take over. I hope this different perspective is helpful

Lib
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#25 lovegrov

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Posted 02 November 2004 - 07:02 AM

I didn't say the pharmacist shouldn't know what gluten means. But should the pharmacist know every single ingredient that MIGHT hide gluten? Do you really think the pharmacist is the one who should call the manufacturer? Not me. I want to hear what the manufacturer says, particularly since pharmaceutical companies are the worst about CYA statements. I don't want the pharmacist translating or interpreting for me, especially if he or she knows nothing about celiac.

As for looking it up in the PDR, that's all fine and dandy. My pharmacist does this for me any time I ask (actually he usually just puylls the insert for the medication). But that isn't much help when it says one of the ingredients is "starch."

If your pharmacist is refusing to help you in any way then you should definitely find a new one. At a minimum they should show you ingredients and help with phone numbers (although they truly do not always have a number for some of the generics). They should also have a notation in their system about your celiac disease. My main point was that I don't expect and don't want my pharmacist to be the one calling the manufacturer.

richard
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#26 pturse

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Posted 02 November 2004 - 10:27 AM

Lib
Thank you for your response. I guess everyone is different in terms of reacting to certain drugs. If I could handle a small does such as 5mg then perhaps I my be interested in talking more with my doctor about it. I never like taking drugs. But I am seeking some relief. First I plan to try the scdiet . . . see what happens and then when I have to go back to my GI in about 1.5 months we'll talk.

I appreciate your honesty and response.

pturse
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#27 pturse

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Posted 22 November 2004 - 08:39 AM

Hey everyone, thought I would give an up date. I have really been feeling awful lately for no apparent reason. I know I have not had any gluten intake and yet the cramping & "D" has become out of control some days. I actually had to stay home from work one day because of it and that has never happened. Before going gluten-free I never really had cramping problems just "D" and bloating. Lately, the cramping is terrible and the distenstion and bloating are way out of control.

My doctor said according to my last blood work, my Celiac is out of control. We may do a biopsy (it has been over a year since my last) to see if my villi is even responding at all to the diet because he said that I may be one of those few that the gluten-free diet just does not work. In which case, the next step is steriod like Prednizone. He is against going that far as am I.

So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet? I am sticking with for the time being and waiting until I get a biopsy which will probably be in January but that is what is running through my head. I do not want to take steriods and have to deal with those side affects. The side affects of Celiac are fine enough right now. I honestly feel like I am getting worse and feeling worse compared to when I wasn't gluten-free. Some days are good and some days are bad but lately it seems like the bad are out weighing the good.
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#28 lovegrov

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Posted 22 November 2004 - 09:07 AM

I can't keep track of what everybody's looked for so I'll just ask -- have you considered other intolerances and have you checked for bacterial overgrowth?

richard
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#29 pturse

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Posted 22 November 2004 - 09:20 AM

Yes. I have checked for bacterial growth. There was none. As for other intolerances, I am lactose intolerant and already avoid dairy. What foods seem to bother me the most are vegetables. All vegetables. I do not eat meat so my options are limited.
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#30 Canadian Karen

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Posted 22 November 2004 - 12:03 PM

First off, you sound so much like me.....

I was in your shoes not too long ago, thinking for sure that I had refractory celiac disease, as my system was just not responding to the gluten-free diet. Even when I was gluten-free, lactose free, sugar free, caffeine free, the diarrhea just continued to be uncontrollable.... It has literally been years since I have had a solid b.m....

My GI sent me to a celiac specialist here in Toronto. He did a colonoscopy and they found collagenous colitis. It is quite rare, so most GI's don't even consider it. Only 2 out of 100,000 people get it apparently. If they are doing another colonscopy on you, make sure you ask your GI to take several biopsies to test for collagenous colitis, which has to be identified by a special pathologist under the microscope. Collagenous colitis does not show up while doing a regular colonscopy as it can only be viewed through a microscope.

I have started the first treatment, and I am 4 weeks into the 8 week treatment. Unfortunately, there is absolutely no change. So it looks like the next step: steriods..... I go back to see him the beginning of January.

Good Luck!
Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

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