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Newly Diagnosed


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11 replies to this topic

#1 kschmitz

 
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Posted 15 September 2004 - 02:41 PM

Hi, I have recently been diagnosed with celiac disease. I have been treated for various symptoms for years, anemia, GERD, early onset osteoporosis, low thyroid, etc; but finally know the source of these problems. Unfortunately, I have been given very little help for managing a gluten free life. I started with a hospital dietician who knew less than I have learned from forums like this. In addition, I asked my pharmacists about the prescriptions and over the counter medications that I must take, and they had no answers for me. I e-mailed several pharmaceutical companies about their products and have received no replies. Please help!! I am severly anemic and need an iron supplement. Can you recommend a gluten free one? What about a calcium and Vitamin D supplement? Is Viactive ok? What about a multivitamin? Where can I find out information about prescription medicines - Nexium, Levoxyl, Fosomax? Thank you.
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#2 clanning

 
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Posted 15 September 2004 - 05:04 PM

I am also new to this forum but do have a few answers. Nexium is gluten-free, not sure about the others. Your pharmacists should be able to give you the drug companys 800# to let you call to see if the others are gluten-free. I looked at Viactive the other day, I don't think that it is but you should be able to call and find out. Also, you probably can take all the iron tablets you want but you will not be able to absorb the mineral. Been there done that. Took 1000 mg a day, no change in my iron levels or anemia. I just recently had a iron infusion. Most people don't have a reaction to the infusion but I did. If your WBC, Hgb, Fe, and other labs are that low... your doctor should recomend an iron ifusion. You do it as an outpatient takes about 8 - 10 hrs.. Its been 7 months since mine and my labs are still good.

The best advice I've ever received is from this group. They've sent me receipes and encouraged me to go buy a gluten-free cookbook, I did.

I'm not sure where I got it but I printed of a list of forbidden ingredients and one of allowed. The forbidden is a lot longer than the allowed.

Try whole food stores, nature's pantry, Hy-Vee if one around. You can get a big book from the Celiac Association that will give you a list of all food products in grocery stores that are gluten-free. (they tell you the grocery stores) My local store (Hy-Vee) bought the book for me to keep me as a customer.

It's very hard as an adult to change your diet. Very depressing at times. But all you can do is try. Read a lot of the other postings here and you'll get more info than you could ever imagine.

Charlotte
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#3 jendenise

 
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Posted 16 September 2004 - 12:49 PM

Slow FE slow release iron supplements are on the gluten-free medications list. I was in your exact shoes for so long, I am so sorry that you have to deal with this kschmitz! Fortuantely now that you know what is the problem you can fix it. First thing: try glutensolutions.com they have Gluten free vitamins. Also, on the Celiac.com home page is the Celiac.com Site index print out the Safe & Forbidden Lists for Gluten-Free Diets and make it your "Diet Bible", there's also a list of gluten free medications under mainstream gluten free products, print the entire list and keep it in a 3 ring binder w/ other printouts. Basically just check out the site index and print everything out and keep it close at all times.
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#4 jendenise

 
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Posted 16 September 2004 - 12:52 PM

Viactive IS glutn free
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#5 kschmitz

 
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Posted 16 September 2004 - 07:06 PM

Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.
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#6 judy04

 
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Posted 16 September 2004 - 07:16 PM

Hi K,

Just wanted to add that Levoxyl is gluten free.I took a calcium
supplement from Freeda vitamins, just do a search and you will
find it, it was gluten free but bothered my stomach so I
quit taking it. If you have anymore questions let us know.
This board has been a godsend for me.
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judy


gluten-free since 11/03, neg biopsy, IGA elevated

#7 hthorvald

 
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Posted 16 September 2004 - 07:56 PM

Does anyone know if the iron supplement, Ferro-Sequels, are gluten free? I called the company and they said it is, but my stomach is always upset. Any other recommendations for getting the iron into me are greatly apprecaited.

Thanks in advance.
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Helen Kendrick
Gluten free since 5/03/04

#8 angel_jd1

 
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Posted 17 September 2004 - 04:26 AM

Iron can be very harsh on your stomach to begin with. If the company says it is gluten-free, it most likely is. I would bet it is just the iron giving your problems.

Other ways to get iron are drinking some orange juice or other vitamin C filled drink along with eating a piece of iron filled meat like beef. The vitamin C helps with the absorbtion and breaking down of the iron. You might also give that a try.

Hope it helps!!

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

#9 hthorvald

 
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Posted 17 September 2004 - 06:53 AM

Hmmm. Maybe that explains my upset stomach. I had severe anemia, which is why I was tested for celiac disease, and told to take these Ferro-Sequels and start a gluten-free diet. I have assumed all this time that my sour stomach was due to the diet change and that I was doing something wrong - maybe not eliminating all glutens.

I'll take your advice about the Vitamin C, because I want to be sure I'm getting enough anyway - especially with cold and flu season around the corner. I'll also check to see if there is a liquid form of iron that might be a little gentler on my tummy.

By the way, I've just had a blood test revealing that I'm not anemic anymore, but my iron stores are still low. So, I have to continue taking the iron at least for 6 months or so.

Thanks for your input, Jessica. Have a great day.
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Helen Kendrick
Gluten free since 5/03/04

#10 lovegrov

 
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Posted 17 September 2004 - 07:10 AM

If you like liver it has tons of iron.

richard
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#11 hthorvald

 
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Posted 17 September 2004 - 07:37 AM

You know, when I was a kid I was always anemic (I guess I know why, now) and my mom force fed me liver, chicken liver, raisins, spinich, and anything else that contained iron. Being from England, it was all fried - except for the spinich, it was just over cooked and slimy. So, you can imagine how I feel about liver :)

However, raisins have resurfaced in my diet, as has spinich - in the form of salads, not cooked, but I doubt liver will ever pass through these lips again. Curiously, my mom still fries up a mean helping of liver and onions. Yum!

Helen.
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Helen Kendrick
Gluten free since 5/03/04

#12 babiesatemydingo

 
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Posted 17 September 2004 - 10:02 AM

if you fry food in cast iron pans you will also get some amount of iron in your diet just by using that type of pan.
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