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I'm New Here And Need Advice!

Violet

By Violet
in Coping with Celiac Disease

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Violet Rookie
Violet
Posted

Hi everyone. I'm feeling a bit at the end of my rope at the moment. I was told I should stop eating gluten by an energy worker a few years ago. I know that sounds wacko..but at the time I was feeling so poorly that I agree'd to try it. I have felt better and better from it. I was already eating a natural, organic "health food" diet, so it wasn't all that difficult. However, I have now given up sugar and find it quite difficult to come across decent tasting bread that is gluten AND sugar free. When this woman told me I shouldn't eat gluten, she did say I was able to tolerate spelt. I didn't eat it tho. Recently, I had some spelt bread and pretzels and it was like heaven. Have you ever heard of spelt being ok? I was starting to think maybe I could get away w/eating gluten again but then I got a blood test back saying I was extremeley low in iron and b12. I poked around and found that people w/celiac are often lacking in those due to an inability to absorb them. If that is the case, will the iron pills I'm taking even help? I have EVERY symptom of iron deficiency and its not fun. The most recent is irregular heartbeat. I'm sorry if this a jumbled...I'm in a rush and trying to get it all out. So..any thoughts on iron? B12? Spelt? TIA!!

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KaitiUSA Enthusiast
KaitiUSA
Posted

Spelt is for sure not ok. It's just like eating wheat. Spelt is a form of wheat.

Celiacs can have a problem with absorbing nutrients (if untreated) and that may be the cause of you being low in b12 and iron.

If you are in fact a celiac, have you eliminated all of gluten? Obviously you are still on some gluten because you are eating spelt so you should eliminate that.Gluten is hidden in many things like flavorings, modified food starch, etc. Gluten is not only found in food but in products like makeups, shampoos, soaps, etc and can easily get into your mouth.

The iron supplements and b vitamins would not help if you are not absorbing it. After being completely gluten free I think then you would benefit from them to help your body get those nutrients.

Do you still have symptoms being gluten free?

Violet Rookie
Violet
Posted
  • Author

Thank you for the quick reply.

I did have lots of symptoms even when I wasn't eating spelt (its new for me, just in the past weeks). Most of my symptoms are that of iron deficiency. I can't figure out why, when I was totally gluten free ( I use totally pure soap etc..) I was still so low in iron? Maybe I was getting it w/out knowing. I dont know tho, I don't go out to eat often, cook in cast iron. Most of the gluten freel things out there are based w/rice. Perhaps rice effects me? I want to have a baby, so I really need to get this figured out, at least how to absorb iron! I'm not usually such a whiner, but I feel like just giving up today.

Carriefaith Enthusiast
Carriefaith
Posted

If you have low iron, celiac disease is a possibility. If you really want to follow the gluten-free diet and see if it improves your iron levels, I would eliminate all sources of gluten. That includes reading labels and looking for gluten on every product that goes in or near your mouth. I would check shampoo, conditioner, make-up, suncreen, toothpaste, ect.

There is a safe and forbidden food and ingredient list on this web site, https://www.celiac.com/st_main.html?p_catid...-16105622901.3e. Also, if you need help determining what is and isn't, gluten-free feel free to ask us. There are many companies that will not hide gluten in their ingredient list, meaning they will come out and say wheat, rye, barley, or oats. Kaiti has that list if you are interested.

And Kaiti is right, spelt =gluten

Guest gfinnebraska
Guest gfinnebraska
Posted

Just an additional note to the excellent info you have already received. I noticed you said you cook in an iron skillet. That skillet can contain particles of gluten in it. You should really buy a new pan and try that for a while as well. Make sure you aren't using any old wooden spoons that are contaminated, etc. It really takes a while to narrow down all the gluten/contamination issues. You will also need a new toaster ~ if you are using one. Gluten is in so many items that you would never think about. Reading the "safe" lists is an excellent way to start as well.

Good luck and good health!! :)

jenvan Collaborator
jenvan
Posted

Also... It is a possibility that you will need an iron infusion for your anemia. I had to get one this spring b/c my iron would not go up. I am getting a follow-up test this week to see if I have to have another infusion as well. Sometimes it can take a while, and take several of these procedures to get someone's iron up to normal levels.

Violet Rookie
Violet
Posted
  • Author

Wow..so much to think about! Thanks everyone!!

How is the iron infusion differnet from iron pills?

I'm confused about the cast iron pan...it has gluten, or holds onto old gluten? Sorry, that one really confuses me, lol.

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KaitiUSA Enthusiast
KaitiUSA
Posted

An iron infusion will directly put it into your bloodstream. This would be beneficial if you are not absorbing nutrients. IV's are a good idea to. Supplements just won't cut it if you are not absorbing anything because they will go right through you, so that's where those things become beneficial

As for the pan, what she was saying is if before you made gluten containing foods on it then residue from that stays on it.

Merika Contributor
Merika
Posted

Hi Violet,

If you are not completely gluten-free right now, and are eating the equivalent of a slice of bread a day (I think), you should get a blood test for celiac. You may have celiac, you may just be gluten-intolerant. Spelt is an ancient form of wheat that has very low gluten levels.

It seems you are unsure what level of gluten-avoidance you should be doing, and a test could give you the firm answer you need.

Before being diagnosed, I had switched to spelt bread and did much better on it than regular bread. I wouldn't eat it now though! If you are merely gluten-intolerant, maybe spelt would be ok? I don't know that much about gluten-intolerance though, just that your insides don't get damaged like with celiac.

Merika

Violet Rookie
Violet
Posted
  • Author

I really appreciate everyone taking the time to reply.

What kind of test? Is it as simple as a blood test? The only gluten I have eaten has been the spelt. Is that enough for the test? Probably yes huh?

I used to be able to get some really yummy pizza crust at Whole Foods that was gluten-free. Does anyone have a good brand of pizza crust?

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