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Newly Diagnosed


kschmitz

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kschmitz Newbie

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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clanning Rookie

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

jendenise Rookie

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.

jendenise Rookie

Viactive IS glutn free

kschmitz Newbie

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.

judy04 Rookie

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.

hthorvald Rookie

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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angel-jd1 Community Regular

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:

hthorvald Rookie

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.

lovegrov Collaborator

If you like liver it has tons of iron.

richard

hthorvald Rookie

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.

babiesatemydingo Newbie

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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    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
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    • Colleen H
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      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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