Getting Started

[TinaB]

I found this website the end of last week and have read as many of the posts as I can but am limited to doing this at work since home is not set up. I guess I am in Denial right now, still hoping that this can't be me.... my story:

Less than a month ago I saw a GI to verify a bleeding ulcer. This past summer I was found severly anemic (hemaglobbin was 7), got 2 units of blood, meds, tested positive to H-pylori, meds THEN my stomach really started bothering me. I don't recall having many stomach aches, bloating, etc until after this last bout of anemia. My PCP said it was probably due to an absorption problem. Saw the GI, said I had classic ulcer symptoms, but set me up for an endoscope that week - he was concerned which in turn scared me to death. He was surprised to find out that on top of the gastritis and a hiatal hernia (neither of us guessed at that one) he did a biopsy in my duodenum that showed 'blunting' of my villi. But the lab says this can be a result of Celiac Disease or (forgot the wording on this) damage from NSAIDS. I have a lower back problem and have lived on Naproxin for years....... so that could be true.

Looking at these posts, Celiac causes such a variety of problems beside the benchmark stomach ones. Looking back I can see this could be me including the back problem, brain fog, hair loss, continual allergy attacks, brittle fingernails, etc.

I went back for a blood test (can't remember what he wanted that for) a little over a week ago and should get results back this week. I'm waiting until this test's results came back to clean out my cabinets. I have cut the obvious wheat and gluten out of my diet. Mentally made lists of what to stay away from.

I feel in my gut (pun intended) that this will be me.

How do you guys do this? What do you eat for breakfast???? I can't do eggs everyday. I was a big cereal eater but it seems all contain at least modified food starch. Even yogurt has that. In order to heal don't I have to be totally gluten-free? fortunately my husband said he'd do this with me. he said he'd probably benefit from this diet too. Can this backfire on someone non-celliac?

My BIG question is...... HOW do you get started? What was your first week like?

sorry I rambled, and thanks for this site. It has really helped.

Tina

[jenvan]

Tina--

Welcome! We're glad you've stumbled upon us here. First off, def let us know when you get the results back. Celiac can be a hard diagnosis to get b/c people have such varied symptoms. It can be difficult to transition to a gluten-free life...but a myriad of us have done it...and if its necessary for you, you will also figure it out.

Some things to start with... Go here to see helpful lists on safe and forbidden ingredients for gfers. Reading labels will become a way of life for you. https://www.celiac.com/st_main.html?p_catid=12

When you begin going gluten-free, you will also need to elminate those products which have gluten--ie. shampoos, conditioners, body washes, makeup, lipstick etc. We can help you with those. This is important b/c products we use on our bodies can make their way into our mouths, and additionally, some folks have skin reactions to gluten. If you have Celiac, you must be 100% gluten-free, no splurges or sneaking. Even a miniscle amount of gluten can do you harm.

It can take some adjusting, but personally, b/c I like cooking, eating at home isn't a big deal. The hard part I find is going out to eat--always a bit of a gamble. There are some restaurants with gluten-free menus, but always be sure to remind them of using clean pans, utensils etc. Contamination is an issue. PF Changs, Mitchell's Fish Market, Outback Steakhouse, Ted's Montana Grill, Maggiano's, Carraba's, Fletchers have gluten-free menus.

Hope these hints help get you started. You may want to peruse the recent threads of favorite gluten-free products too. If you are interested, there are a host of gluten-free specialty foods out there--breads, flours, cakes, pies, cookies, crackers etc.

And I highly recommend doing some reading--get "Wheat Free, Worry Free" by Danna Korn. It is an excellent resource on Celiac and the gluten-free life.

[Guest Viola]

Hi Tina, and welcome to the board.

There are a few gluten free Cereals. Nature Path has a couple, and Enviro Kids carries some. Also, if you can get hold of a loaf of gluten free bread ..Kinnikinnick (found in the freezer department) has a good Tapioca white bread, you can make yummy french toast for breakfast. Remember to take the bread out of the egg mixture with a spatula and not a fork. Trying to take it out with a fork will break the bread.

You'll find that we are all here to help each other and a lot of us have learned by trial and error and can pass on those tips to help reduce your errors when handling gluten free products

[jenvan]

Something else...don't be too hard on yourself up front. There's a chance as you go gluten-free, you will miss a few things, and it will take you some time to weed out all the sources of gluten... You can also go back to more natural and fresh foods and introduce new ones as you find they are safe. Get a notebook, print off info you find and receive to stay organized.

As for my breakfast. I have cereal with rice milk. Some other ideas are fruit smoothies, yogurt with fruit or gluten-free granola, peanut butter and an apple, frittatas. I make up egg frittatas--eggs, cheese, meat, veggies etc in advance and freeze to pull out and reheat later...you can make them in muffin cups too to have individual sizes. A gluten-free yogurt--Yoplait, all theirs are safe. Before I went cf, I ate it. They are one of the very very few yogurt brands that would state gluten-free. There are a host of gluten-free cereals out there, but my recommendation is to stick with the speciality gluten-free brands, not the mainline ones. Some of my favs: Perky's Nutty Rice, Erewhon Crispy Rice (like rice krispies) and their Rice with Berries, or Rice Twice, Healthy Valley Rice Crunch'ems (like rice chex). A good way to ck out new gluten-free products would be to go to a local health food store. Another idea is to ck out the Gluten Free Trading Post. They are a totally gluten-free grocery in Milwaukee. You don't have to order from them, but go to their website and upload a pdf copy of their catalog: Open Original Shared Link It has literally hundreds of gluten-free products by category and will help you find some new products to try and begin to identity gluten-free ones. I often use it as a guide when looking for new things. I have ordered from them as well and was pleased with their service.

[TinaB]

Thank you for your replies and help. I've got a lot to learn. I called my GI's office and test is in and he's going to call me today or tomorrow. We'll see what it says. The bad thing about this is I've never been a veggie eater but then I've never been fond of bread either. I know I felt really good a couple of years ago on the first phase of the South Beach Diet which is no bread, just eggs, meat, dairy and veggies. Guess that should have told me something.

I can do this and in no time at all I'll not even think about this. (My mantra) Right now I don't want to eat at all.

Thank you for caring and having this site!

Tina

[kathy1]

When you begin going gluten-free, you will also need to elminate those products which have gluten--ie. shampoos, conditioners, body washes, makeup, lipstick etc. We can help you with those. This is important b/c products we use on our bodies can make their way into our mouths, and additionally, some folks have skin reactions to gluten. If you have Celiac, you must be 100% gluten-free, no splurges or sneaking. Even a miniscle amount of gluten can do you harm.

I thought you only had to eliminate the nonfood items that contain gluten if you had dermatitis herpetaformis. My husband does not have dermatitis herpetaformis, so are you saying that I need to eliminate the gluten in all the nonfood items for him as well? I thought I had a handle on all this but now I am confused. My husb has no symptoms of GD, only a positve blood test.

[Lovinglife]

Tina, my dear, I COMPLETELY understand. FIRST begin by writing what you CAN eat. You will be surprised at the length of the list. To begin: fresh meats, fresh chicken, fresh fish, fruits, vegetables, gluten-free pastas (taste ALMOST THE SAME), cheese, many ice creams, many forms of chocolate candy bars, gluten-free cakes and brownies and pastries (yes, they do exist. you have to order online or search in a Whole Foods or a Turcos, most health food stores...especially for the pastas). The list WILL lengthen as you become more savvy. Take it step by step and VOW to yourself that you'll treat yourself the way you deserve to be treated, which is healthily and according to a gluten-free diet.

Hang in there. It WILL get easier and more manageable.

Sending love,

Florence

[Guest Viola]

Kathy 1, you need to eliminate those non-food items that can end up in or around the mouth. Such as chap sticks, and sun screens. Hand creams if he uses them, that sort of thing. People with DH, the skin problem part of Celiac are usually more fussy about shampoos etc. But tooth paste needs to be looked at by all of us.

Hope this helps to clear things up. If I had children with Celiac, I would also look into bubble bath and shampoo as they tend to put everything in the mouth.

[Lisa]

To add to Shirley's post: I use..........

Pantene/Dove Shampoo and conditioner

Oil of Olay, Dial Soap

Berts Bees - lip balm, and colored gloss

Lubriderm - lotion

Bare Essentials Make-up (which I can't find here)

Clinique - Lipstick

(Loose your chapstick) - a sad day in my life.

This may give you a start until you can research on your own to find your own personal brands that are gluten free. It took me a few month of very intense study to find a starter place and then I was able to branch out with additional knowledge. Be patient...it will come. You won't find this in a book, in a doctors office for sure, hospital dietitian, or neighbors and friends..........your answers are here and research on the internet.

If you have a question, surely one of the 8,000 of us can answer your questions. My advise is to ask as many questions you may have, be patient as healing may take a long time and be diligent for your health and your long life.

I am now very cool with the diet. I am now dealing with friends who invite us out for dinner and say "just try one bite, it can't hurt you". I am learning to stand my ground, but yet, be pleasant to my host.

Good luck to you and take things in stride. The hard part is to get you mind where you body needs to be.

Patience..........and you will feel better.

Let us know..

Lisa B.

[loraleena]

I found this website the end of last week and have read as many of the posts as I can but am limited to doing this at work since home is not set up. I guess I am in Denial right now, still hoping that this can't be me.... my story:

Less than a month ago I saw a GI to verify a bleeding ulcer. This past summer I was found severly anemic (hemaglobbin was 7), got 2 units of blood, meds, tested positive to H-pylori, meds THEN my stomach really started bothering me. I don't recall having many stomach aches, bloating, etc until after this last bout of anemia. My PCP said it was probably due to an absorption problem. Saw the GI, said I had classic ulcer symptoms, but set me up for an endoscope that week - he was concerned which in turn scared me to death. He was surprised to find out that on top of the gastritis and a hiatal hernia (neither of us guessed at that one) he did a biopsy in my duodenum that showed 'blunting' of my villi. But the lab says this can be a result of Celiac Disease or (forgot the wording on this) damage from NSAIDS. I have a lower back problem and have lived on Naproxin for years....... so that could be true.

Looking at these posts, Celiac causes such a variety of problems beside the benchmark stomach ones. Looking back I can see this could be me including the back problem, brain fog, hair loss, continual allergy attacks, brittle fingernails, etc.

I went back for a blood test (can't remember what he wanted that for) a little over a week ago and should get results back this week. I'm waiting until this test's results came back to clean out my cabinets. I have cut the obvious wheat and gluten out of my diet. Mentally made lists of what to stay away from.

I feel in my gut (pun intended) that this will be me.

How do you guys do this? What do you eat for breakfast???? I can't do eggs everyday. I was a big cereal eater but it seems all contain at least modified food starch. Even yogurt has that. In order to heal don't I have to be totally gluten-free? fortunately my husband said he'd do this with me. he said he'd probably benefit from this diet too. Can this backfire on someone non-celliac?

My BIG question is...... HOW do you get started? What was your first week like?

sorry I rambled, and thanks for this site. It has really helped.

Tina

Try Woodstock Water Buffalo yogurt, Its yummy, gluten free and easy to digest. You can get it whole foods.

[MACE]

To add to Shirley's post: I use..........

Pantene/Dove Shampoo and conditioner

Oil of Olay, Dial Soap

Berts Bees - lip balm, and colored gloss

Lubriderm - lotion

Bare Essentials Make-up (which I can't find here)

Clinique - Lipstick

(Loose your chapstick) - a sad day in my life.

This may give you a start until you can research on your own to find your own personal brands that are gluten free. It took me a few month of very intense study to find a starter place and then I was able to branch out with additional knowledge. Be patient...it will come. You won't find this in a book, in a doctors office for sure, hospital dietitian, or neighbors and friends..........your answers are here and research on the internet.

If you have a question, surely one of the 8,000 of us can answer your questions. My advise is to ask as many questions you may have, be patient as healing may take a long time and be diligent for your health and your long life.

I am now very cool with the diet. I am now dealing with friends who invite us out for dinner and say "just try one bite, it can't hurt you". I am learning to stand my ground, but yet, be pleasant to my host.

Good luck to you and take things in stride. The hard part is to get you mind where you body needs to be.

Patience..........and you will feel better.

Let us know..

Lisa B.

JUST WANTED TO LET YOU KNOW THAT QVC HAS A FULL LINE OF BARE ESSENTIALS MAKE UP . YOU CAN GO TO QVC.COM TYPE BARE ESSENTAILS IN THE SEARCH AND IT WILL BRING IT ALL UP FOR YOU.

[TinaB]

Thank you Florence, Jen, Lisa, Shirley, Viola, Mace, Loraleena and anyone else. TY, TY, TY

Bare Escentials has its own website: bareminerals.com.

That's probably the only thing I've got in my bathroom that's gluten-free. Thanks for the info ya'll. I do have a prob w/where to shop. I'm in a small town in AR, an hour away from Little Rock but there is a Wild Oats there that I have been to before but it seems that I remember the bulk flour could easily be contaminated. Can you buy these substitue flours in pre-packaged sacks? I guess I should just wait til I get over there this weekend.

There's sooooo much to think about!

I actually woke up pretty good this a.m. in spite of staying up past midnight watching the Orange Bowl. My allergies have been on a rampage (maybe this will improve??) and other issues but I still woke up...... bouncier? Maybe I've started turning the corner on this acceptance thing.

Still have not heard from my GI but it's been late in the p.m. when he called last time. I'm mixed up about dealing w/celiac disease and the Hiatal Hernia diet (fruit and water especially). Does a hiatal hernia heal and go away? Anybody know?

Tina

[jenvan]

Tina-

You can absolutely get gluten-free flours prepackaged--brands like Bobs Red Mill, Authentic Foods, Ener-g etc. Ask someone when you get to Wild Oats for their gluten-free food list--it will help guide you thru the store to find gluten-free products.

[TinaB]

ok guys, I got my test results, didn't talk to GI only to his nurse so I don't have the numbers but they were positive Celiac. It was the tests that I've seen here like ITG or whatever. So I told them I need help controlling my stomach. Since posting yesterday I went majorly down hill. My stomach started hurting w/what I assume is the hiatal hernia - just under the sternum then progressed as the day wore on to hurting on both sides of my stomach. by night the pain was going through to my back. I thought I'd eaten something that was bothering my gastritis that maybe hadn't healed yet. No. I just came back from blood tests for CBC, CMT, amylse and lipase which I am told are for kidney and pancreas w/CAT and Ultra sound set up for next week looking for gallbladder probs.

so why do I feel like I'm absolutely falling apart!!!! I have never had so many probs w/my health until about 2 years ago with increasing stuff to now including a cancer scare which thank God was not. Is this all Celiac? What does gallbladder probs, not necessarily stones feel like? what else is going to go wrong?

Brother, I sound whiny!!! sorry. thanks for listening and if anyone has had a similar experience please clue me in. Tina

[Lisa]

Tina:

I too have a LARGE Hiatal Hernia. My DR. prescribed Omeprazole 20mg. (generic for Prilosec), one in the morning and one at night. This seems to help my Hernia symptoms (gas, burning, bloating)

Other than that, the only help for a Hernia is surgery. Try to get a perscription from you DR. and if that will not help you inquire about surgery. I am good doing what I am doing.

Hope this will be helpful.

Lisa B.

[tarnalberry]

so why do I feel like I'm absolutely falling apart!!!! I have never had so many probs w/my health until about 2 years ago with increasing stuff to now including a cancer scare which thank God was not. Is this all Celiac? What does gallbladder probs, not necessarily stones feel like? what else is going to go wrong?

Celiac can cause a lot of secondary symptoms, and until you've got the diet firmly established, it's hard to say what is and what isn't being caused by it. At least you now know for sure you need to be completely gluten-free. I would encourage you to stick to unprocessed, naturally gluten-free, whole foods (fresh fruits/veggies/meats/eggs/beans/gluten-free grains) for a while to minimize contamination of the packaged products you eat as well as to make it easier on your intestines.

[Guest Viola]

Tina, I'm so glad you got your results. Finding out what is causing the problem is half the battle. Now you can concentrate on the diet for the Celiac, and get on with trying to get that Hernia under control.

To start with, sleep with your shoulders and head raised. Not just with a pillow, put blocks under the feet of the bed frame at the head of the bed. Mine is raised about 6 inches. Hopefully you have a bed you can do this with. It keeps the acid from burning your upper chest and throat while you are sleeping and you wake up with it in better control. Yes ... see if you can get the meds from your Doctor and hopefully these will control it. I'm on meds now and so far so good. If it doesn't work you'll have to see if surgery is an option.

Keep us up to date on the Gallbladder problem. It's one I haven't heard of.

And don't feel like you're whining, unless we know what you are going through we can't try and help. And even if we aren't any help, we can at least support you! Lots of Hugs ... hang in there, it can only get better from here.

[Rusla]

Tina, the first week is not so bad and being gluten-free is not so bad either. I have had even great success in a few restaurants and not been glutened. I was glutened at work by someone eating on the desk and me putting my hands on it and touching my face, is an almost instant DH. I eat lots of veggies and fruit. I am probably eating more healthy now than ever before.

Bette Hagman's cook books have great recipes in them. I am also a big fan of the Enviro Kids gluten-free cereals, Celimix pancake mix and the Enviro kids snack bars. There are also good gluten-free breakfast bars.

We are all here because we all have a common problem whether we are diagnosed or not Celiac.

[celiaccecilia]

Hi Tina,

Good to have you on the forum. I was diagnosed in August and it is getting easier for me with time. The diet can be difficult, but it is definately worth it. I mourned the loss of food for a time, but now I know it is really not worth it to me to eat any form of gluten. Please be patient if you don't feel great right off. It may take some time.

It really is best to stick with pure foods in the beginning. This will help you know if you have any additional intolerances/allergies. Everyone here on the forum is a great help.

Good luck, and hope you get feeling better soon!