Just Diagnosed Today

[aking3028]

I have been dealing with abdominal pain and really bad nausea for almost a year. A couple months ago they did an EGD and said it was normal. I went through many more tests which all came back normal. I then went in for a blood test last Friday and another EGD today and they determined I have Celiac disease. I have no idea what to do and what not to do. I understand that I cant have gluten but if the label says wheat then that means I cant have that either? What if it doesnt list wheat but also doesnt say about being gluten free? Are there special places to buy items that are Gluten free? I am both scared and relieved that they finally found what was causing me to feel this way. Any help would greatly be appreciated.

[eatmeat4good]

Welcome! It is confusing at first, but you will soon learn what the words mean and how to watch for gluten.

Gluten is a term used for the protein in wheat, barley and rye. The protein that makes Celiac/Gluten Intolerant people ill. Therefore you have to avoid a food if you see wheat or it's derivitives in the label. Many products are safe even if they don't specifically say gluten free on them. Companies are starting to recognize that we need gluten free food, so they are labeling as such.

There is a list of safe and unsafe ingredients on the home page here. You will learn a lot from it.

All meat, fruit, vegetables, poultry, nuts and seeds, are naturally gluten free. Eggs are gluten free and so is most dairy, but still read the label. (some ice creams have wheat in them)Also dairy may be hard to digest in the beginning.

If anything has wheat in the label or any of it's derivatives, then you cannot eat it. Watch for Soy sauce as it can be made with wheat. It will be on the label though.

You have to check everything that will be put in your mouth. It is a lot of work in the beginning but life will get easier.

If you eat mostly whole natural foods you will heal faster.

Snickers are gluten free and so are Cheetos. Everybody needs a treat now and then.

Keep reading on here and you will learn how to avoid cross contamination which is very commmon by sharing a toaster with gluten eaters or a collander. This is enough to make you ill too. Vitamins and hygeine products need to be checked also as they can end up in your mouth.

[mushroom]

There are three categories of products: Those labelled gluten free, those that are not labelled as gluten free but which do not contain any gluten ingredients in their ingredient list, and those that do contain a labelled gluten ingredient.

In the second category where there is no gluten free label but also no identified gluten ingredient, sometimes the label will state that the product is made in a "shared facility" , meaning that gluten containing products are made in that plant, and sometimes the label will state that the product is made on "shared lines", meaning that after they do a run of a gluten product they thoroughly clean the lines before running a gluten free product. Sometimes, it is just that the manufacturer does not want to make that claim because the product is not tested for gluten content.

Each gluten free eater has to find out for him/herself which level of processing their body tolerates. Some need a totally gluten free facility, some can handle shared facilities, and for others it doesn't matter if the product is run on the same lines.

But first, you really need to start with whole unprocessed foods so that you can get a baseline of how your body reacts. Start with meat, fish, rice, fruit, veggies, nuts (plain, not roasted/seasoned) and seeds. Then you can start trying some of the processed foods, but you will heal a lot faster if you stick to whole foods for a while. It is best to avoid lactose for at least the first six months (you can try almond/hemp,rice milk - but no Rice Dream which is processed with barley) because your body will probably not be able to digest lactose until your gut heals, and some gluten free stocks and single ingredient spices and something like Pamela's baking mix to get something to make sauce/gravy out of . Keep things simple at first until you get the hang of what contains gluten and what doesn't and to avoid the aggravation and overwhelming feeling initially of having to read every label. After a while it becomes second nature, but at first it can drive you crazy.

Good luck and feel free to ask any questions that come up.

[wheeleezdryver]

I have been dealing with abdominal pain and really bad nausea for almost a year. A couple months ago they did an EGD and said it was normal. I went through many more tests which all came back normal. I then went in for a blood test last Friday and another EGD today and they determined I have Celiac disease. I have no idea what to do and what not to do. I understand that I cant have gluten but if the label says wheat then that means I cant have that either? What if it doesnt list wheat but also doesnt say about being gluten free? Are there special places to buy items that are Gluten free? I am both scared and relieved that they finally found what was causing me to feel this way. Any help would greatly be appreciated.

Where do you live? There might be somone on here from the same area as you, they might be able to help you with local resources!

[keithceliac2010]

Welcome!!! You are in the right place for help and guidance. i am a newbie as well. i have been gluten-free for about 4 weeks now and it is a wonderful change. EVERYTHING in my body and mind feels better. Actually, i started feeling much better in only 24-48 hours(i am not sure if that is normal) of being gluten-free. My favorite store so far has been Trader Joes. They have lots of gluten-free products which are clearly marked as gluten-free right on the shelves. they also have a gluten-free printout that you can pick up at the customer service desk to guide you to all the gluten-free products in the store. the Trader Joes that I go to just added a little section in the store just for gluten-free products. if you dont have a trader joes nearby then look in yellow pages for health food stores and give them a call. Also, some of the sponsors on this website sell gluten free products. Also, be careful with milk products. i treated myself to some Ben & Jerrys gluten-free ice cream last week and had a not so pleasant experience but live and learn. best of luck. you are definitely in the right place.

[T.H.]

Are there special places to buy items that are Gluten free?

Many health food stores may carry more gluten free products than other places, like Whole Foods, sunflower markets, or Wild Oats, if those are familiar to you. But all grocery stores will have some things that are gluten free.

If you google 'guide to going gluten free' there are a number of sites and resources that will pop up, including a book you can order that is updated yearly and lists lots of gluten free products that are main stream, like ore-ida tater tots, for example.

If, as it sounds, your doc has given you no help whatsoever, you'll want to now go and find a new doctor who has a clue, because people with celiac disease, especially adult diagnosed, are prone to other issues, and you'll want a doctor who is aware of those. Vitamin deficiencies are common, for example. A dietician might be helpful, might not, depends on how you feel about it. You'll want to tell your dentist so he/she can make sure that you get gluten free paste/flouride, etc... when you go there. If you have any medication or vitamins, you need to check now to make sure they are gluten free. A good starting point for that is www.glutenfreedrugs.com.

Also, chapstick or lipstick - yours or the person you might kiss - need to be gluten free, too.

Every time you get a new drug, I would recommend that you double check with the pharmacist that they are gluten free. Unfortunately, this is something that many pharmacies (like Walgreens, for example) won't keep track of for you, even if they have it in your chart.

But on the plus side, now you'll likely feel SO much better, too. :-) It's really pretty amazing what a difference it can make in your health.

[aking3028]

I hope I'm not sounding dumb or anything but it's like my brain is going nonstop and I keep thinking of things I need to check or ask. If something has an ingredient that just says flour, do I have to assume it's wheat flour and I need to stay away from it? I'm from York pa and I've heard that wegemans in mechanicsburg has alot of gluten free items. I'm just so overwhelmed. I went today for a blood test for my thyroid and I go Tuesday for a bone density test. Will I have to continue getting these tests every so often just to make sure? Thank you for all of your responses and help. I know it will get easier just very confused and overwhelmed right now

[mushroom]

Our motto here is "There is no such thing as a dumb question". If you don't know or can't find the answer, ask away. Yes, when you see "flour" and it is not preceded by something like "rice" or "tapioca" or "sorghum" or "soya" always assume that it is wheat because it will be. All specialty wheat flours are labelled with their particular kind of flour.

You need a baseline bone density scan to make sure that you have not lost a lot of bone. If you have osteoporosis you will need followup scans occasionally, otherwise you don't have to worry too much.

Same with thyroid - if your levels are okay (and do post your thyroid levels here because sometimes docs will tell you they are okay when they are not) and you don't have to take any thyroid medication, then you don't have to worry. If you do need thyroid medication then your levels should be monitored and your dosages adjusted because the dosage isn't always right the first time and your needs may change on the diet.

[aking3028]

I was reading a few things and it says about staying away from "modified food starch" Is that correct?

[mushroom]

I was reading a few things and it says about staying away from "modified food starch" Is that correct?

Many labels will list the derivation of their modified food starch as in "modified food starch (corn)". If they do not list it and you cannot find out what it is, don't eat it. However, that being said, in the U.S. if it comes from wheat the label will have to say "(wheat)".

[aking3028]

Well I got the results back from my thyroid test and they said it was normal. They said it was 3.09. The bone density test came back normal too, however the nurse said the biopsy they took during the EGD wasn't normal. She will have to have the dr call me. Now I'm wondering what that means. Does anyone have any ideas?

[aking3028]

So back to the modified food starch question I had. If it only lists modified food starch and nothing else like corn or wheat. Do I assume it's ok to eat since it doesn't list wheat? I just got back from wegmans and bought a bunch of stuff there but still have questions. I have found the bread is really dry. Are there any decent breads out there or should I try and make my own, same thing with rolls. I can't believe how expensive the food is compared to " normal" food. Any tips on saving money? Thanks

[psawyer]

Modified food starch is usually corn or tapioca. If you are sensitive to corn, it is a concern. It can be wheat, but this is rare as that is more expensive than the other sources I mentioned. In the US, if it is wheat, the presence of wheat must, by federal law (FALCPA), be clearly disclosed on the label.

While I'm on the subject of once-considered "questionable" ingredients that are, in fact, now known to be gluten-free, let me list a few others: caramel color; maltodextrin; tocopherols; and monosodium glutamate (MSG). Wheat derived maltodextrin is conceivable, but in the US (and Canada) it would have to be explicitly stated that there was wheat.

Rye and oats never hide in other names. Wheat must be explicitly listed. Read the label. The remaining loophole is that barley sometimes is hidden, although that is quite uncommon. Product labeling came out of the dark ages years ago, but there are still some old, obsolete "unsafe ingredient" lists out there.

[T.H.]

Well I got the results back from my thyroid test and they said it was normal. They said it was 3.09.

Re: your thyroid. I think you might want to read this:

Open Original Shared Link

There is argument among endocrinologists about what normal really is. The normal range right now is .5-5. But a big group of endo docs think it should be .3-3 - which puts you right over the edge.

When I last read about this, which was a few years back, so it's been a while, if I remember correctly, one of the reasons they wanted to change the test was because while some people can be 4.4 or so and have normal thyroid function, the majority of the human population actually had thyroid numbers at less than 2, I think it was.

Which would mean that the majority of people with numbers higher than that are actually probably not healthy, thyroid-wise.

It might be worth doing some research, getting a second opinion, you know?