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The Medical Community Are Clueless

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Posted 10 May 2005 - 05:49 AM

Last June I became sick with a sinus infection and required antibiotics. The dr. prescribed penicillin to which I had a reaction. So, he called in a "Z-pack" (zithromax). I questioned the pharmacist on the z-pack, asking for her to specifically check for gluten-containing starches. I even named them for her and gave her a list to cross-check. She insisted the meds were gluten-free.

Three days later, I'm sick with non-stop diahrrea. I was so weak I could barely walk. I went back to the pharmacy. I demanded to see the drug insert. There, the 3rd ingredient listed was "starch" -- unspecified and, as it turns out, made from wheat. I was so angry!!

I quietly explained to the pharmacist the exact nature of celiac disease and the impact ingesting gluten can have on my well-being. I threatened to file a complaint against her license since she lied to me (she couldn't have read the insert!) I also spoke with the pharmacy manager and made sure they understood a law suit would be on them if she ever violated the warning on my records and gave me contraindicated drugs again.

Needless to say, they've been very careful since.
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Posted 10 May 2005 - 06:08 AM

Zithromax? That is gluten free...just confirmed it with the Delphi forum updated list of what is safe.

I was on that for like a week last year and the manufacturer confirmed it was gluten free then as well.
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Posted 10 May 2005 - 08:24 AM

Yep, Z-packs are gluten-free. (the starch isn't wheat whenever I've checked). I've got to take that stuff... not infrequently. ;-) (stupid respiratory infections... grumble.)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

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Posted 10 May 2005 - 03:02 PM

Zithromax is about the only antibiotic I CAN take. Although one of the side effects listed on the insert is potentially severe diarreah, not from gluten but from the type and level of antibiotic. I also verified this with the company that it was gluten free.
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Posted 10 May 2005 - 03:31 PM

Yep, most antibiotics run that risk - I get a bit of loose stools, but nothing too bad. Biaxin, on the other hand, I believe is also gluten-free but won't let me keep anything in my stomach. It's awful for me.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA



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Posted 10 May 2005 - 08:34 PM

Zithromax is one of the only antibiotics that my 2nd son can take. So I checked on it as soon as he started the gluten-free diet. It is gluten free.

I do get a lot of GI problems from antibiotics, even the gluten-free ones. The stronger the antibiotic the worse the GI problems. I have had a couple of bad infections in the last 6 months and had to take some really strong antibiotics. I had horrible intestinal pain that lasted for more than 3 weeks. They also made me feel extremely ill while I was taking them. I could have switched to a different antibiotic, but the alternatives do the same to me, so I had to just deal with it. My point is that it isn't always gluten in the medication that can make you ill, sometimes it is just the normal side effects of the drug.

Can I ask, who told you the starch in the Zithromax was made from wheat?

God bless,
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Mariann, gluten intolerant and mother of 3 gluten intolerant children



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Posted 11 May 2005 - 08:38 AM

Back to RNs - a good friend is graduating at the end of the month with his BS in nursing and he has been taught that only children have/get Celiac's. He's a very easy to talk with person so I'm thinking of sitting down with him and giving him an education in gluten-intolerance. The nursing school in my town is a top-rated school and I know this friend of mine is a top student, as well, so they simply aren't doing enough to educate about gluten and Celiac's.

I was pretty discouraged about learning this when I talked with him initially but hope that I can help to educate him on GI so he can maybe help even just one person. Plus, he will be working at my local hospital so maybe, if I am ever there in an emergency, he can help look out for me on this.

It would be wonderful if GI/Celiac's were better understood but I have also heard on diabetes/hypoglycemia sites how often hospitals have problems with those diets as well, and they are much better known. So this really doesn't surprise me (though it does dismay me!!!)

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Diagnosed by food challenge, 10/04
Gluten-free since 10/04
Gluten-sensitive genes: HLA-DQ 1,3 (Subtype 6,9)
Interstitial Cystitis, 7/07
Fibromyalgia, 6/11



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Posted 11 May 2005 - 09:11 AM

I think I'm going to make up a card that says:

No gluten means don't give me anything that contains any kind of flour or food starch.

That would be a huge help. Ya can't just say wheat... cause people offer you WHITE bread... it's not wheat bread. Yikes!
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Living in the beautiful Ozark mountains in Arkansas
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diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!



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Posted 12 May 2005 - 09:48 PM

Here are some samples from documents I keep on my system. I keep a standard gluten free restaurant card in my purse. I also keep a sheet of medical information that has the following information:

**REQUIRES GLUTEN FREE MEDICATIONS AND FOODS** is centered and clearly visible at the top of the sheet

-My name and date of birth

-Name and phone number of my insurance company

-A short summary of my medical history including the celiac disease/DH, fibromyalgia, neuropathy, hypothyroidism, neuropathy, etc. I make it clear that I sometimes lose the ability to communicate so that I am not mistaken for someone who has had a stroke or entered a vegetative state or something.

- Emergency contacts with their relationship to me and their contact information. I have my husband's work and cell numbers as well as my son's and parents'.

-Allergy list including medications and the celiac disease grains

-List of current medications and the name of the doctor who prescribed them

-List of physicians who treat me with their addresses and contact information

-The phone number for my local pharmacy

One item you do not want to have on this sheet or anywhere in your purse is your SSN. If your purse if ever stolen, your identity can also be stolen more easily if this info is readily available.

I keep a similar but more detailed list on my computer and just update it regularly and print it out each time I go to the doctor. This one does not contain the insurance and contact info but has more detailed current symptoms. I makes it much easier than having to remember every med and symptom change when I get to the doctor's office. Also, this means that every doctor has the same information in the same format.

For those of you who are parents, here is the wording of the notarized authorization letter I keep on me at all times for the kids.

In case of an emergency, my minor children Jennifer or Joseph Ford may be left in the care of any of the following persons until I am able to care for them again. These are in no order of preference.

(Then there is a table with several contacts so that surely they can find one of them. An example is below.)

Person(s) Phone Number Relationship to children
Charles Ford (770) 852-6815 Father
Joshua Ford (770) 377-8298 Brother

You get the picture.

Hope this helps.
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South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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