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Newly Diagnosed
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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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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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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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Viactive IS glutn free

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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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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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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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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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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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If you like liver it has tons of iron.

richard

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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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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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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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