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Don't Know If I Have Celiac Disease

lauralee

By lauralee
in Coping with Celiac Disease

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lauralee Newbie
lauralee
Posted

I don't know if I have Celiac Disease or not. My gastroenterologist told me that from the blood tests they did that yes, I did have it even though the only symptom I was showing was unexplained anemia. She did an endoscopy and biopsies. When I went back for the followup in her office the next week (this past Thursday) she said that she the endoscopy and the biopsies were all fine. She said she doesn't know if I have Celiac Disease or not. Supposedly of the three tests they do, two of mine were positive and one was negative and one of my positives was just barely positive. So, she suggested I eat gluten-free for two months and then come back to check my blood again.

Basically...can I seek help and guidance here because I'm having a heck of a time deciphering indgredient lists, etc. I've tried to be gluten-free all week but there's a lot of things I still question if I can eat or not and I want to do this as carefully as I can so I can get as accurate results as possible when I go back for my followup.

Sorry to ramble...and thanks.

lauralee

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jerseyangel Proficient
jerseyangel
Posted

Lauralee--For heaven's sake, of course you're welcome here! Feel free to ask anything. Actually, since you have a positive blood test, you have it as far as I'm concerned. There's a ton of info on foods, personal care products and tips on how to avoid CC at home and away. Welcome :)

Guest Robbin
Guest Robbin
Posted

:) Welcome. You will get a lot of help and support on this forum. Nini has a "newbie" kit that will help you. I think you can pm her to get it. Also, you can check out the main website -on the list of choices there is a lot of information you can print out and read to make things easier. It is sometimes a comfort to know that you are not alone. We are all here to help each other. Take care,

Also, I agree with Patti, a positive blood test of any kind is a POSITIVE. Not sure what your doc is thinking.

queenofhearts Explorer
queenofhearts
Posted

This is SUCH a welcoming, comforting place, not to mention an incredible fount of information. I'm newly diagnosed myself & this forum has been a real lifesaver. I see a complete range of folks posting here, from the undiagnosed & curious to old hands sharing years worth of hard-won wisdom! Stick around; you'll be glad you did!

Leah

schuyler Apprentice
schuyler
Posted

Welcome!! As Leah said, everyone here is really nice, so don't be afraid to ask questions. There are plenty of people here who are in the process of getting a diagnosis, so you are not alone. Good luck with everything.

Danielle

jenvan Collaborator
jenvan
Posted

Of course you are welcome here! And, ck out these very helpful ingredient lists--big help for shopping: https://www.celiac.com/st_main.html?p_catid=12

Guest nini
Guest nini
Posted

absolutely you are welcome here, and just e-mail me at nisla@comcast.net for the newbie survival kit in the subject of the e-mail just put "request newbie survival kit" and I will e-mail it to you as soon as I can!

also, since you do have positive blood work (even low positive) you have this as far as I'm concerned too... Too many medical Dr.s are still reluctant to dx this unless they see full blown damage... they are therefore missing too many people in the earlier stages of this... you are lucky, you can start getting better sooner!

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lauralee Newbie
lauralee
Posted
  • Author

Thanks everyone! You've made me feel welcome. And I will email you in a few mintues, Nini, requesting my newbie kit.

Am I the only person who has trouble deciphering the ingredient labels on foods? Unless it says at the bottom of the list in bold..."contains wheat" I sometimes have no idea what I can and can't have. I've got three books and alot of paperwork with lists on them but sometimes I still cannot identify certain names/ingredients. Can I eat Dannon fruit yogurt or do I have to get plain yogurt and add my own fruit? What about Country Crock mashed potatoes? Should be just potatoes, right? Not according to the ingredients list and I can't decipher all of the things listed.

Thanks,

lauralee

TCA Contributor
TCA
Posted
Thanks everyone! You've made me feel welcome. And I will email you in a few mintues, Nini, requesting my newbie kit.

Am I the only person who has trouble deciphering the ingredient labels on foods? Unless it says at the bottom of the list in bold..."contains wheat" I sometimes have no idea what I can and can't have. I've got three books and alot of paperwork with lists on them but sometimes I still cannot identify certain names/ingredients. Can I eat Dannon fruit yogurt or do I have to get plain yogurt and add my own fruit? What about Country Crock mashed potatoes? Should be just potatoes, right? Not according to the ingredients list and I can't decipher all of the things listed.

Thanks,

lauralee

Trust me, we all KNOW how overwhelming this is at first. The way I started out is that if it had more than just a few ingredients, then I stayed away from it. It was too hard to know. As I went along, I found more and more mainstream things that were really good. I probably spent more on specialty food in the beginning because I didn't trust mainstream stuff. I recommend starting a notebook with info in it. Then start going through your pantry. Call the 1-800 # ont he back of the packages and ask if the product is gluten-free or not. I divided the things I could use up and separated those from the rest of the foods. I also asked the companies to send me lists of their gluten-free foods when I called. This helped in shopping a LOT. I have a list of foods that I put together for my son. It has a lot of kid type foods on it, but it might be helpful. It also includes a list of companies that will always list gluten in the form of WHEAT, RYE, BARLEY AND OATS. I tend to stick with those brands, so I KNOW what I'm getting. Just PM me and with youre e-mai address and I'll be glad to send it to you. Nini's list is great too.

I hope you feel welcome already! Let us know if you have questions.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome aboard!

Going off gluten has had one--no, two-- tremendously positive effects for me (besides for the obvious health bnefits, I mean).

One is that I have become a much better cook (and I wasn't bad at all before, judging by my husband's waistline!). I decided that it was EASIER to stay home and cook what I wanted from scratch rather than go to a restaurant and special-order or stand for hours at the grocery reading ingredients.

The other is that I am saving a ton of money not eating out or buying prepared foods!

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