I've Just Been Diagnosed

[aimee-in-ok]

Hi everyone. I found out today that my blood test for celiac disease came back positive. Which is both a blessing and a curse. I've had the big "D" since the day after Christmas and have gone through multiple tests trying to figure out what's wrong with me. I also have Lupus and my rheumatologist suggested that my primary Dr. test me for celiac's and here we are. Now I know what's wrong (the blessing) and now I have to change my whole way of life (the curse). My Dr. is referring me to a GI specialist and said that i'll have to have a scope of my GI tract done and a biopsy. I'm just wondering if anyone can give me some suggestions about what I should need to know and ask of my doctors. Thanks for your help! Aimee

[Jnkmnky]

You don't need to ask your doctors much. Have you found out what vitamins you're low in? Get a full blood work-up, see where you stand nutritionally, *check iron, folate, all vitamins... And begin the diet, keeping it rich in areas you are currently lacking. Go dairy free for the first 6-9 months. Your villi are probably damaged and going dairy free allows for quicker healing. I order all of my foods from Kinnikinnick... Link in my sig. below. I get the white sandwich bread, pizza crusts, donuts, bagels, ktoos, chocolate chip muffins and english muffins regularly. They're really good. Also, Tinkyada pastas are the best. There are many foods in your regular store that are gluten free. You should examine all your personal care products to make sure they're gluten free as well. NO wheat germ oil in your lotions, no Oats in your lotions, check your lip gloss and the like. Good luck.

[Canadian Karen]

Hi Aimee!

I am glad you found us. You will find out more here than you will from any doctor. The medical establishment is far behind in its teaching about celiac disease.

First, you just might have to give up milk for awhile also. Most celiacs who are first diagnosed will be lactose intolerant until their start to grow back (the part of our intestines that process lactose happen to be on the very tip of the villi). Don't worry though, most can go back to milk once the villi start returning....

You have to make sure you go through your life with a find tooth comb. Toiletries, medications, over the counter meds, vitamins, supplements. Even licking envelopes can gluten us. Even kissing someone who just had a beer can gluten us. A crumb from a kitchen counter can gluten us. It may sound overwhelming, but really, it does become second nature after awhile.

Most importantly, DON'T BE AFRAID TO ASK QUESTIONS!!! We have all been there, at the beginning of this tunnel that just doesn't seem to have a light at the end of it. But believe me, it does, and it will get easier as you get better.

Welcome!

Karen

[jenvan]

An excellent starting point is to buy "Wheat Free, Worry Free" by Danna Korn. It will educate you on Celiac, the gluten-free lifestyle, shopping etc. It will teach you quite a bit. Also, ck out these lists on forbidden and safe food for Celiacs/gluten intol, they are very helpful when starting out: https://www.celiac.com/st_main.html?p_catid=12 Also, you will begin to learn some brands will list any gluten form, like Kraft, and others do not. And as Karen said, you will have to go through your products, makeup etc. to ck for gluten. Search online and search back through other posts here, some members may have already done the work for you. Hope those few thoughts help!

[jerseyangel]

Hi Aimee--I don't have much to add to all the good advice already offered here, but I just wanted to say welcome in . Remember to keep eating gluten until you have the biopsy done so you don't get a false negative. Best of luck and come here anytime you have questions. Like Jen said--Wheat Free Worry Free is a great book, especially for someone new to the gluten-free lifestyle. I got it for Christmas, but wish I had read it earlier.

[floridanative]

Well my biopsy results are in today and I indeed have Celiac. I should have known when the dr. said 'I don't know why your other dr. mentioned Celaic, I'm sure you don't have it' that I would end of having it. He almost didn't even do the biopsy......

My advice Aimee is the same as above regarding the test. Eat gluten until you get the biopsy. Otherwise your results will not be conclusive. Since everyone on this site has been so helpful I am already armed with safe, non-safe foods and so forth. Tomorrow will be my big shopping spree for foods, most of my personal products are already gluten-free, just need to double check a few.

I must say by Friday night I had talked myself into thinking there is no way I have celiac disease since the Dr. didn't bother to call me in a timely manner regarding my results. Then when the doc said your results are highly conclusive and you have classic Celiac sprue, well I almost fell off my chair. I cried, took off work early and took a shower to clear my head. I'm sure I'll have a million questions by tomorrow so thanks to any who have helped me in the past (too many of you to name) and who will take the time to help me in the future. Obviously I could not do this without your help! God bless you all. And I have two support groups here in Atlanta so I'll be joining them as well.

[Canadian Karen]

Floridanative,

Did you print out the delphi list for shopping? I found that was a godsend for me, especially since it is in convenient categories so you can find things really quickly (which is especially important when I am in the middle of an aisle with my four kids, having to read ingredients!!!! LOL! )

Hugs.

Karen

[floridanative]

Karen, yes I got the list back in the fall when one doc told me he thought I could have celiac disease. I have everything in a large binder but I have to organize it which I will start on tonight. Thanks to people like you on this forum, I feel I have it easy compared to some who have gone before me. I'm trying to focus on the positive. Now many of my small health issues seem to add up and they should clear up somewhat or go away once I have been gluten-free for a while. Seems wierd a little........like I'm an alien or something like that. Like when I first heard about celiac disease, I could not wrap my brain about it for a while. And although I've had several months to get ready for the news, it still hit me like a ton of bricks when the doc finally called and read the lab report to me word for word.

Deep down I'm really excited to have an answer finally and the news could be much worse. I'm sure I'm in for a lot of ups and downs learning how to cope successfully but thanks to all of you I know I will learn and eventually it will be old hat for me. There is a Celiac expert here in town who is speaking about it at our next support group meeting on Feb. 2nd. So really I feel better prepared than most to have found you all before I really got my dx. Thanks again to all who have helped me so far. I'll need your guidance in the near future I'm sure.

[Canadian Karen]

Just fire away!

We have all been where you are at right now, at the beginning of this long and winding gluten-free road and it does seem so overwhelming at first. Just remember that no question is too stupid to ask, and not too much that we haven't discussed here already, so don't be shy!!

Hugs.

Karen

[BB22]

I'm new too. Self diagnosed, went Gluten-free Casein-free in November. I am a new person.l Ate questionable sauce two days ago & the migraine & vomiting returned that night. My story too long. Age 45, been telling "them" I was not ok for many many many years. I've seen zillions of doctors & had zillions of complaints. (I wish I could count how many times they told me to see a shrink, which I happily did). 2 years ago during chemo therapy the pain got better. Chemo works on fast growing cells, including hair & entire GI tract, so in hindsite it makes sense that the intestines were refreshed. Then radiation started & all the pain & depression and fatigue and headaches and constapation and diarreah and everything returned. Not surprised "they" all said. Things in my head got really bad. So up the anti-depressants and yada yada. BUT NEVER IN ALL THESE DECADES DID ANYONE SUGGEST DIET. My Entire family has not been ok. We've been seeking answers for so long, trying too figure out what it could possibly be. Sister, very sick for 25 years, went gluten-free this past summer & boom got better. I stopped & boom I was better.

I recently got a new job, which meant out of the HMO. My new internist did blood work for celiac, even though I was already on the diet about 6-7 weeks. She agreed, I sound like a classical celiac sprue. However she didn't think an endoscopy was necessary, rather a colonoscopy was in order? comments? I see her again in a few weeks.

She said she did not believe my entire family could have it, but I'm willing to bet. My brother just stopped glutten 1.5wks ago, we'll see. We want other sister to try, and how to get Mom to try? Life without bread is not a life...

But that is not my question. I want the down and dirty, food on the fly info. Who has done the research? Where can I get FREE information. all in one place? Please tell me what hand lotion, soap, shampoo, toothpaste, floride rinse, I can use? Do I really have to call the manufacturers?

I am currently Gluten-free Casein-free & soy free (due to breast cancer). How do I find out if my cancer drugs have hidden binders? What candy can I have? I heard star-burst ok but not licorice? true? What do you pack for a road trip. I also heard McDonald's french fries are ok. I figure breakfast must be the safest meal out. Eggs and greens & fruit. But what to do in a Thai restaurtant. Soy & vinegar must be in everything including the rice? I'm eating the same thing for every meal. A vat of gruel. Soup & veggies & greens & protien & rice. If I'm only slightly lactose intolerant can I put butter & yeast & salt on my airpopped popcorn. What's the problem with herbal tea, all herb tea? What's ok. Tell me what brands. I realize the new labeling act is a huge blessing, but do I really have to worry about crumbs? Are you kidding me. Can I have a margarita or a scotch, obviously beer is out. What about Tobasco sauce?

Please provide more info - i.e. someone mentioned a delphi list - what's a delphi list & where does one find it?

Thanks

[Canadian Karen]

Hi BB22,

Boy, isn't it funny as soon as I read "they" in your post, I know immediately you are talking about clueless doctors!!!! I am glad you are on the right path now and things will only get better from here.

The delphi list is, in my opinion, an absolute must have. Go into www.delphiforums.com

Click "Health & Wellness" on the left hand side.....

The second forum down is the "Celiac Disease Support Group"

Click on that (oops, forgot, you will have to register, but it is free)

Once you are in the celiac support group, if you scroll down, you will see "Gluten Free Products List". Click on that and it will bring you into the list broken down into convenient categories. There is also a section there where you can download the whole document. You will also notice there is a medication section in there, see if you meds are listed there as gluten free. For medications, I also use www.glutenfreedrugs.com

Good Luck!

Karen