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GlutenWrangler

Realized Something

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Hey Everyone,

I just thought of something that might be relevant to my situation. When I got out of the hospital in June, my doctors allowed me to switch from Vicodin to Dilaudid for my pain. I started with 2mg tablets, made my Mallinckrodt Pharmaceuticals. They had no allergens in the inactive ingredients and were very well tolerated. Then I started taking 4mg tablets. But with the change in dose, came a change in brand. The new brand was Ethex, and starch was one of the inactive ingredients. I called Ethex, and they said that they couldn't confirm or deny that it was wheat starch. From my reaction to it, I'm almost certain it was wheat starch. But since Dilaudid is a narcotic, I coulddn't just have the pills replaced. I had no choice but to take them or suffer with pain. So I had to take them for an entire month, 4 pills a day. My health declined rapidly over that period of time. I totally forgot about that. I had the pharmacy order the Mallinckrodt 4mg tabs from then on. But even after switching to the gluten-free pills, I never got any better. Do you think that it could still be affecting me even after about 6 months? I feel like it just wrecked my whole system. Maybe it severely aggravated my Refractory Sprue, and led to a loss in kidney function. I don't know, what do you think? Thanks,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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I think that may be a strong possibility. You need to get your hands on the fact sheet from that drug, you may be able to get it at the NIH website or from your pharmacist. You need to see what adverse actions it is possible for this drug to have, and also what organs the drug may impact, many doctors don't know them. The drug if not gluten-free could have had a combo effect with the gluten in it and adverse action on an organ. It is well worth your checking out. In addition, keep any info you can get on the drug and if it was a problem that was drug sideeffect derived the company that makes the drug and the FDA need to be notified. My doctor thought I was nuts when I told him the Levaquin made me hallucinate, he believed it shut down my pancreas but thought I was nuts about the pretty colors.....until I showed him the drug fact sheet. If I had taken more than one dose I may have been right where you are right now.

By the by your doctor should have found a different drug for you, there are many that you could have taken for the pain that are not compounded with poison. IMHO this doctor really missed the ball on that one. Make sure if this was a result of that action that he knows he did this to you.

From on line fact sheets - this one is from Medline: (bold is mine) Were your kidneys impaired before you took this drug? If so it may not have been a wise choice by your doctor.

"What special precautions should I follow?

Before taking hydromorphone,

tell your doctor and pharmacist if you are allergic to hydromorphone, aspirin, sulfites, tartrazine (yellow dye), or any other drugs.

tell your doctor and pharmacist what prescription and nonprescription medications you are taking, especially other pain relievers; antidepressants; medications for cough, cold, or allergies; sedatives; sleeping pills; tranquilizers; and vitamins.

tell your doctor if you have or have ever had liver or kidney disease, a history of alcoholism, lung or thyroid disease, heart disease, prostatic hypertrophy, or urinary problems.


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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Public Libraries have large book called "Physicians Desk Reference" (usually in the Reference Book Dept.) which is the actual reprint of the drug company's report on their drugs (ingredients, interactions, dosing, etc.) and you may find the ADVERSE REACTIONS for the drugs you are interested in.

As for me, Dilaudid gives me the best pain relief (after surgery). But I never had it in a prescription for home use.


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 2006It 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

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Wow--I think that's a terrible response, that they "can't confirm or deny" that there is wheat in the product. Over the last 2 1/2 years, I've made numerous calls to drug manufacturers--both name brand and generic--and they have always been able to tell me whether the med had gluten or not.

I think you really are on to something with this--it makes sense.

Can't the doctor prescribe something else for you? If you really need this specific med, you could get it at a compounding pharmacy. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Wow--I think that's a terrible response, that they "can't confirm or deny" that there is wheat in the product. Over the last 2 1/2 years, I've made numerous calls to drug manufacturers--both name brand and generic--and they have always been able to tell me whether the med had gluten or not.

I think you really are on to something with this--it makes sense.

I agree.

I think the "can't confirm or deny" is a very poor statement from a drug company!!! :angry:


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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It's a good reminder that there's always a strong possibility that something is doing this stuff to you, and that you can find out what it is. There's always hope - lots of hope, and Hope is good.

Brian, you just keep on truckin' til you find out what it is. :)

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I'm all set now. I'm taking the Mallinckrodt brand now, and it has no allergens in it. The drug itself is fine for my system, and doesn't give me any adverse reactions. Actually it works with my system better than any other pain medication I've taken, and I've taken a bunch of different ones. So I'm not being poisoned by it anymore.

The trouble for me was just that month where I had to take the Ethex brand. I had been out of the hospital for about 3 weeks before I started taking it. And before I started taking it, I was feeling pretty good, and for the first time in years, I was having "normal" bowel movements. As time went on during the Ethex month, I started developing diarrhea. By the time the month was over, I had developed some pretty severe diarrhea, and it's been that way ever since.

I agree that the response from Ethex was ridiculous. I could tell that the guy had no idea what he was talking about. He said he couldn't be 100% sure what kind of starch was coming from their suppliers. I know corn starch or potato starch wouldn't have bothered me in such an extreme way, even though I'm allergic to both. So it was pretty much a gluten challenge for me. I wonder if I suffered any more villi damage. I hope not.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=2898Da

http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=2898

You should read this. (label box doesn't come out on my browser.) It's the government Daily Med NIH page on the Ethex brand of that drug.

Patients with renal impairment are supposed to take lower doses because the hydromorphine takes longer to process out of their bodies. re special risk patients "hydromorphone hydrochloride tablets should be given with caution and the initial dose should be reduced in the ,,,,, those with severe impairment of ... renal functions. "

I don't see any other filler ingredients like acetaminophen ("tylenol") in this drug. Tylenol is extremely hard on the kidneys, (and liver) especially when combined with other NSAIDS such as aspirin, ibuprophen, ("advil") naprosin ("aleve"), etc. But acetaminophen is frequently used in combination with other pain killers as if it's harmless and it is anything but that. The worst kidney problems I ever have had were in reaction to being put on prescription strength NSAIDs, unfortunately the other doctor then told me to take lots of tylenol instead, and at least one has told me to combine the two but that was 20 years ago and I lived anyway. The back pain from the drugs making my kidneys bleed was worse than the back pain from the other problems.

I can see now that we are going to have to start asking the FDA to make the drug manufacturers start putting the "might contain" allergen labels on their drugs, which of course they won't want to do. It's ridiculous that in spite of hyper- attentive label reading we can't tell what the sodium starch glycolate is sourced from if the manufacturer is using whatever was on special last month at John Q Ingredient Wholesaler Importer and Distributor.

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I really don't think that the Dilaudid is causing my kidney function loss. I've been taking Dilaudid for over 7 months, and the loss of kidney function is a very recent occurance. I really think something else is causing it, mainly because I've always tolerated medications well. I've taken drugs with much more potential for kidney damage than Dilaudid. Personally I think it has a lot to do with whatever is causing my GI issues. Or just a combination of things. But I'm awaiting some more test results, so hopefully that should give me some more answers as to why this is happening.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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I agree that the response from Ethex was ridiculous. I could tell that the guy had no idea what he was talking about. He said he couldn't be 100% sure what kind of starch was coming from their suppliers. I know corn starch or potato starch wouldn't have bothered me in such an extreme way, even though I'm allergic to both. So it was pretty much a gluten challenge for me. I wonder if I suffered any more villi damage. I hope not.

-Brian

Brian,

I would call Ethex again. Chances are you will get a different person who will be able to give you a true answer. I always call companies several times if I don't feel their response was accurate. Trust me, it happens too often.

Good luck!


Joni

Dx'd with Celiac Disease 8/01/07

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Actually that's a really good idea. I'm sure someone at Ethex knows what they're talking about. But by the reaction that I had, I'm 95% sure that there was gluten in those tablets. But I am going to call them again, just to confirm it. I just think with all of the new focus on allergens, the Ethex representatives should know that type of information for when consumers call to inquire.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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Brian- When you call, ask to speak to either a nurse or a pharmacist....every company I've ever called has connected me with one or the other. The first person you speak to may not have permission to say anything definitive.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Honestly, the first time I called I think I spoke with a pharmacist, as crazy as that is. You would figure that a pharmacist would be able to help. The way he put it was that he couldn't be 100% sure of which raw materials were provided to Ethex by the distributers. Maybe I'll have some better luck the second time around though.

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

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