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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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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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