Newly Diagnosed

[lyn1170]

Hi,

Just got diagnosed with Celiac disease and need advice on books or sites that could give me some good information. Also any personal advise you could give me would be greatly appreciated.

[Ahorsesoul]

I suggest you keep reading here. One of the best sites. Welcome to the gluten free world. I have yet to find a book that is really great. Info changes so fast by the time a book is published it already old news.

[Googles]

Welcome!

I'm sorry that you are going through this,but glad that you have found us here. I think this website has been the best find I made when I found out last year that I had Celiac. I found that the gluten free product guide was really really helpful when I started trying to buy food. It gave me a place to start when I was trying to buy food. I also read Gluten Free for Dummies and it had a lot of good information. We are here to answer questions.

[T.H.]

Welcome to the club.

So far, the best information I've found is on forums like this one and others. Many medical sites are pretty sparse in details, and the disease is, really, still being studied and learned about. I see many times where celiacs are noticing a trend and dealing with it before doctors are. The community has been really helpful and looking out for each other that way, as a result, I think. I have had so many people offer encouragement and information that it's been very uplifting.

As for food? Gluten free bloggers have some of the best recipes I've come across, much better than cookbooks that I've tried, to date. I bought a few gluten-free cookbooks, and I almost never use them. Just go straight to the blogs. I found a couple of the gluten-free bloggers, and then started looking at THEIR list of bloggers, and it goes on from there.

As for advice, things that I ran into in the beginning, etc... Well, here goes!

1. Has your doctor scheduled you for a follow-up visit? Has your doc. tested you for vitamin deficiencies? If the answer is yes, you've likely got a pretty good doc. If the answer is no, you may want to consider finding another one. As an adult celiac, we're more likely to have vitamin deficiencies that we need to supplement for, and you'll need to be tested 6 months and often 2 years after going gluten free, to check your level of healing. Good docs are aware of this, uninformed docs, not so much.

2. Do you have a dietician? They can be very useful, if you can find one that is gluten knowledgeable.

3. Things to think about with gluten: if it touches your mouth, it better not have gluten. So makeup/chapstick that might touch your lips (yours or someone you might kiss) can't have gluten, shampoo can't have gluten if you ever get some in your mouth while rinsing, if there is lots of flour dust in the air and you inhale it, that can gluten you too. Sometimes you will hear people concerned about gluten absorbing through the skin - there is argument whether that is an issue or not. Most people think not. However, many more of us worry about the stuff on our skin accidentally getting in our mouth - like I can't stop myself from nibbling on my nails when I'm nervous, and if there is lotion with gluten on my hand, then I get sick off the gluten.

4. Most of us start getting more sensitive to gluten the longer we're off it. It's a good thing, honestly, because the level of damage done inside doesn't seem to correlate to how you feel. So getting sensitive so you know what to avoid next time is not a bad warning system, yeah?

5. There are different levels of sensitivity in the celiac community. Some people can avoid gluten ingredients and obvious contamination and they seem to be just fine. Some people are more sensitive to gluten and have to be extra careful in what to avoid. For example, 'Gluten Free' means less than a certain amount of gluten. It is an amount that doesn't seem to cause damage to celiacs, but some of us react to that little, anyway.

6. I've read from a few people that avoiding gluten free substitute foods and going to other naturally gluten free food types, like rice, meats, fruits, veggies, etc... can be helpful. You do that at first, then a few months down the line start on the gluten-free breads and crackers and such. I didn't do this, but a few people who did said that you kind of lose the 'taste' of the original bread, so when you try the gluten-free bread, the taste difference isn't as noticeable. It always sounded interesting to me!

7. Another reminder of: if it goes in the mouth, beware of gluten. The dentist needs to use gluten free stuff on you. And there can be some oddball gluten issues, like tea bags. I understand some tea bags are sealed shut with gluten, so you'll need to avoid those. Unfortunately, with things like that, you often have to call up the company to find out whether it's an issue or not.

8. You want to go dairy free for a few weeks or months right now. The tips of the villi - where you are damaged as a celiac - are where you digest lactose. So when you are still healing, you are usually lactose intolerant and dairy may make you feel a bit ill, and usually makes your healing take longer.

9. If you feel worse before you feel better, that's normal for many celiacs...although feeling better right away is normal too! It just depends on how you go. Many of us end up finding other food issues that we never knew we had - celiac disease can mask the symptoms - so if you start feeling bad after a certain food, I'd say trust yourself and stay away. On that note, some celiacs have trouble with gluten-free oats and quinoa. Most don't, but it's something to be aware of.

10. Lastly - it's SO much better, physically, to be gluten free. Honest. It takes some work to get used to eating this way, and it will always be different, but there is so much that is affected by this disease, most celiacs I've talked to have so much in their bodies that improve once going gluten free. Depression, aches and pains, neurological problems, gut pain, exhaustion and concentration. It's really stunning how much can get better.

I hope that your road from now on is smooth and pain free and full of good eats!

[lyn1170]

  On 7/19/2010 at 5:13 AM, Ahorsesoul said:

I suggest you keep reading here. One of the best sites. Welcome to the gluten free world. I have yet to find a book that is really great. Info changes so fast by the time a book is published it already old news.

Thank you for your advice. Finding this site is awesome I have already gotten great information to start me off.

[lyn1170]

  On 7/19/2010 at 5:20 AM, Googles said:

Welcome!

I'm sorry that you are going through this,but glad that you have found us here. I think this website has been the best find I made when I found out last year that I had Celiac. I found that the gluten free product guide was really really helpful when I started trying to buy food. It gave me a place to start when I was trying to buy food. I also read Gluten Free for Dummies and it had a lot of good information. We are here to answer questions.

Thank you! I did order "Gluten Free for Dummies" so I am glad you are recommending it. Still so confused on my food choices so I am reading alot and getting a wealth of information from this site.

[lyn1170]

  On 7/19/2010 at 5:57 AM, T.H. said:

Welcome to the club.

So far, the best information I've found is on forums like this one and others. Many medical sites are pretty sparse in details, and the disease is, really, still being studied and learned about. I see many times where celiacs are noticing a trend and dealing with it before doctors are. The community has been really helpful and looking out for each other that way, as a result, I think. I have had so many people offer encouragement and information that it's been very uplifting.

As for food? Gluten free bloggers have some of the best recipes I've come across, much better than cookbooks that I've tried, to date. I bought a few gluten-free cookbooks, and I almost never use them. Just go straight to the blogs. I found a couple of the gluten-free bloggers, and then started looking at THEIR list of bloggers, and it goes on from there.

As for advice, things that I ran into in the beginning, etc... Well, here goes!

1. Has your doctor scheduled you for a follow-up visit? Has your doc. tested you for vitamin deficiencies? If the answer is yes, you've likely got a pretty good doc. If the answer is no, you may want to consider finding another one. As an adult celiac, we're more likely to have vitamin deficiencies that we need to supplement for, and you'll need to be tested 6 months and often 2 years after going gluten free, to check your level of healing. Good docs are aware of this, uninformed docs, not so much.

2. Do you have a dietician? They can be very useful, if you can find one that is gluten knowledgeable.

3. Things to think about with gluten: if it touches your mouth, it better not have gluten. So makeup/chapstick that might touch your lips (yours or someone you might kiss) can't have gluten, shampoo can't have gluten if you ever get some in your mouth while rinsing, if there is lots of flour dust in the air and you inhale it, that can gluten you too. Sometimes you will hear people concerned about gluten absorbing through the skin - there is argument whether that is an issue or not. Most people think not. However, many more of us worry about the stuff on our skin accidentally getting in our mouth - like I can't stop myself from nibbling on my nails when I'm nervous, and if there is lotion with gluten on my hand, then I get sick off the gluten.

4. Most of us start getting more sensitive to gluten the longer we're off it. It's a good thing, honestly, because the level of damage done inside doesn't seem to correlate to how you feel. So getting sensitive so you know what to avoid next time is not a bad warning system, yeah?

5. There are different levels of sensitivity in the celiac community. Some people can avoid gluten ingredients and obvious contamination and they seem to be just fine. Some people are more sensitive to gluten and have to be extra careful in what to avoid. For example, 'Gluten Free' means less than a certain amount of gluten. It is an amount that doesn't seem to cause damage to celiacs, but some of us react to that little, anyway.

6. I've read from a few people that avoiding gluten free substitute foods and going to other naturally gluten free food types, like rice, meats, fruits, veggies, etc... can be helpful. You do that at first, then a few months down the line start on the gluten-free breads and crackers and such. I didn't do this, but a few people who did said that you kind of lose the 'taste' of the original bread, so when you try the gluten-free bread, the taste difference isn't as noticeable. It always sounded interesting to me!

7. Another reminder of: if it goes in the mouth, beware of gluten. The dentist needs to use gluten free stuff on you. And there can be some oddball gluten issues, like tea bags. I understand some tea bags are sealed shut with gluten, so you'll need to avoid those. Unfortunately, with things like that, you often have to call up the company to find out whether it's an issue or not.

8. You want to go dairy free for a few weeks or months right now. The tips of the villi - where you are damaged as a celiac - are where you digest lactose. So when you are still healing, you are usually lactose intolerant and dairy may make you feel a bit ill, and usually makes your healing take longer.

9. If you feel worse before you feel better, that's normal for many celiacs...although feeling better right away is normal too! It just depends on how you go. Many of us end up finding other food issues that we never knew we had - celiac disease can mask the symptoms - so if you start feeling bad after a certain food, I'd say trust yourself and stay away. On that note, some celiacs have trouble with gluten-free oats and quinoa. Most don't, but it's something to be aware of.

10. Lastly - it's SO much better, physically, to be gluten free. Honest. It takes some work to get used to eating this way, and it will always be different, but there is so much that is affected by this disease, most celiacs I've talked to have so much in their bodies that improve once going gluten free. Depression, aches and pains, neurological problems, gut pain, exhaustion and concentration. It's really stunning how much can get better.

I hope that your road from now on is smooth and pain free and full of good eats!

Wow, Thank you so much for your advice! I am still wrapping my mind around this diagnosis. I actually got diagnosed after going to a new doctor for my thyroid issues. After he ordered a full blood panel he was astonished not at my thyroid level, but at how low my vitamin/mineral and red blood count was. He then suggested I get tested for gluten intolarance. I am surprised to find out that what I thought for years were symptoms of my thyroid are actually attributed to gluten including probably my thryroid levels. I am still trying to get used to my new diet and intergrating the multitude of vitamins & minerals icluding B12 shots that I take everyday. I am so greatful for all the information you have given me it is extremely helpful. Regards, Lyn

[Monklady123]

As a newbie myself I don't have much specific advice, except to second whoever said to read this site. I went back all the way to the last page of this forum and just browsed my way forward. lol... I've also browsed in the "people with kids" forum (or whatever it's called) and got TONS of good ideas there for snacks, and things like that. And don't forget the baking and cooking forum. Very good info about baking in particular. (not that I've tried any of the ideas yet, but I'm getting a new stove/oven on Friday, so then I will.) Good luck.