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Newbie, Just Diagnosed...what Is Normal?
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Hi everyone,

I was just diagnosed with Celiac Sprue just last week. Blood test was positive, so was edg. :( I am just beginning to get my kitchen de-glutened(sp?). I am using separate pans, utensils, cutting board, etc. But it seems that after everything I eat I feel naucious. I am only eating potatoes, fish, chicken, eggs, some brown rice, and gluten free bread. I just started to add in veggies that are roasted and then pureed to make sure I don't get sick.

My biggest complaint has been diahreah. I was diagnosed with Collagenous Colitis in 2004. I am just wondering with colitis and Sprue will I ever feel better?

Is there just a period when you feel icky?

I must say this sight has been wonderful. I have learned so much already.

thank you so much for any insight.

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Since the most doctors are not too familiar with Celiac, they often send us on our ways to fend for ourselves. I find this a terrible thing to do, but it does happen.

Going gluten free if totally overwhelming. Everyone here started at the beginning.

It will take some time for your intestines to heal and the longer you are on the diet the better you will feel.

Gluten hides everywhere. Please check your shampoos, lotions, toothpaste or anything that can get into your mouth.

Please feel free to ask for information on a starters list for gluten free products. There are a lot of wonderful people here who share their time to offer assistance in helping people understand this crazy disease.

Welcome to our world and feel free to join in.

Lisa

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Welcome to the forum. It may be that your body is just ridding itself of toxins, gluten is toxic to us. Maybe you should try eating very simple things for a few weeks. The gluten free bread may be to heavy for you to eat just yet. Be patient, you stick with it and make sure you are totally gluten free, you will feel better in time.

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Welcome to the forum. It may be that your body is just ridding itself of toxins, gluten is toxic to us. Maybe you should try eating very simple things for a few weeks. The gluten free bread may be to heavy for you to eat just yet. Be patient, you stick with it and make sure you are totally gluten free, you will feel better in time.

I was thinking that too. I did not eat the gluten-free bread today, and will avoid it for a while. I just found out that I had been taking vitamins with gluten, so I will have to find different ones. I feel like there is soo much. And I just had a baby 4 months ago. Talk about overwhelming. I just wish I could pay someone to cook for me and figure everything out. :P Of course I don't have the cash for that. So, as long as I am gluten-free I will feel better? Okay

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OMG, you are dealing with soooo much. With a new baby and a new gluten free diet. That would be overwhelming to anyone. It has been a long time since I have had babies, and that in itself if a hard transition.

How can we help? Can we offer you easy to fix recipes that are gluten free and easy and quick?

Let me start:

Hillshire Farms Sausage, pan fried

Boiled potatoes

Salad - Newmans Dressings

Scrambled Eggs

Oscar Meyer Bacon

Ortega Hash Browns

Beef, Chicken, Tuna, Salmon, Pork and there are so many options.

There is a wonderful thread here about recipies, please check this out.

Please let us know how we can help you.

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don't get discouraged - it took me 6 months before the D went away, and I'm still having some problems (been 8 months gluten-free now). Of course, I'm pregnant again so it's hard to tell what it just pregnancy symptoms and what is celiac related. I"ve heard it may take up to 2 years before you really start to feel better, so give it time.

And I agree about the bread - i didn't start trying gluten-free breads until about 3-4 months into it, and even then (and now), i only eat about a slice or 2 (or one english muffin) a month. You have to freeze it anyway, and toast it, so I just never think about it and i definitely don't crave it ;)

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Hi everyone,

I was just diagnosed with Celiac Sprue just last week. Blood test was positive, so was edg. :( I am just beginning to get my kitchen de-glutened(sp?). I am using separate pans, utensils, cutting board, etc. But it seems that after everything I eat I feel naucious. I am only eating potatoes, fish, chicken, eggs, some brown rice, and gluten free bread. I just started to add in veggies that are roasted and then pureed to make sure I don't get sick.

My biggest complaint has been diahreah. I was diagnosed with Collagenous Colitis in 2004. I am just wondering with colitis and Sprue will I ever feel better?

Is there just a period when you feel icky?

I must say this sight has been wonderful. I have learned so much already.

thank you so much for any insight.

How new are you? My first week off gluten was sheer hell and the month or two after, only a bit better. It felt to me the way I imagine coming off of heroin might feel. As a matter of fact, I looked up heroin addiction and getting off of heroin and the only symptom I wasn't having was high blood pressure. Well, I thought that was the only one I wasn't having. But being a nurse, I had someone take my blood pressure the next day. It was 140s/90s (I'm normally 100/50) so I even had that symptom.

Another thing is that there are so many hidden sources of gluten and if you are cooking in a kitchen with gluten items or trying to cook gluten items for others, give it up for a while. You may well have to give that up for good. After a few years, I can be around gluten foods though I am hesitant to be around gluten flours because I worry about air borne gluten.

Also, pay attention to your medications. You may have some that contain gluten. Your pharmacist can help you with that.

And lastly, since you are here, read everything and then start getting Living Without magazine (the magazine has a sucky name but it is a fine resource) and scour the internet for information. I like Bette Hagman's cookbooks but there are many more out there these days. And lastly, if you are around Whole Foods (and who isn't these days?) go talk with them and let them walk you through the store.

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don't get discouraged - it took me 6 months before the D went away, and I'm still having some problems (been 8 months gluten-free now). Of course, I'm pregnant again so it's hard to tell what it just pregnancy symptoms and what is celiac related. I"ve heard it may take up to 2 years before you really start to feel better, so give it time.

And I agree about the bread - i didn't start trying gluten-free breads until about 3-4 months into it, and even then (and now), i only eat about a slice or 2 (or one english muffin) a month. You have to freeze it anyway, and toast it, so I just never think about it and i definitely don't crave it ;)

Yeah, it's really funny that I never realized I wasn't much of a bread eater. I'm pleased with the Whole Foods Bakehouse brand bread and yet I only buy it about once a year and then I find I don't make it through the loaf.

Now, Amy's frozen gluten free dinners I would be lost without. I work 12 hour shifts and despite my best intentions I frequently don't make food for work so having those saves me.

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OMG, you are dealing with soooo much. With a new baby and a new gluten free diet. That would be overwhelming to anyone. It has been a long time since I have had babies, and that in itself if a hard transition.

How can we help? Can we offer you easy to fix recipes that are gluten free and easy and quick?

Let me start:

Hillshire Farms Sausage, pan fried

Boiled potatoes

Salad - Newmans Dressings

Scrambled Eggs

Oscar Meyer Bacon

Ortega Hash Browns

Beef, Chicken, Tuna, Salmon, Pork and there are so many options.

There is a wonderful thread here about recipies, please check this out.

Please let us know how we can help you.

Thank you so much. Yes, I wish this was all a bad dream. I just want to feel better, but I think with all of this unfortunate news, I have gotten worse. Probably because I am so emotional and all. I will just take each day as it comes. I will check out recipes, but I feel at first I must be careful.

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How new are you? My first week off gluten was sheer hell and the month or two after, only a bit better. It felt to me the way I imagine coming off of heroin might feel. As a matter of fact, I looked up heroin addiction and getting off of heroin and the only symptom I wasn't having was high blood pressure. Well, I thought that was the only one I wasn't having. But being a nurse, I had someone take my blood pressure the next day. It was 140s/90s (I'm normally 100/50) so I even had that symptom.

Another thing is that there are so many hidden sources of gluten and if you are cooking in a kitchen with gluten items or trying to cook gluten items for others, give it up for a while. You may well have to give that up for good. After a few years, I can be around gluten foods though I am hesitant to be around gluten flours because I worry about air borne gluten.

Also, pay attention to your medications. You may have some that contain gluten. Your pharmacist can help you with that.

And lastly, since you are here, read everything and then start getting Living Without magazine (the magazine has a sucky name but it is a fine resource) and scour the internet for information. I like Bette Hagman's cookbooks but there are many more out there these days. And lastly, if you are around Whole Foods (and who isn't these days?) go talk with them and let them walk you through the store.

I am very new, but was only eating Kashi crackers that I know of that were wheat. My nutritionist took me off all wheat about 1 month ago to try to stop the D. We did not even know I had Celiac Sprue. Since being diagnosed, I have been extremely sad. Just starting to feel a little better emotionally. The news is horrible. I know there are worse things. But, a nurse just called me on the phone and told me she would send out a pamphlet but that I needed to go gluten free right away. i did not even know exactly what it meant. Now, after reading this site, I am starting to realize. I added on pureed vegetables and potatos recently. I don't think they are going over very well. Will go back to just brown rice and meat and see how I do. This sucks. Thank you for your help!! Can I get the magazine online.

I do live near Whole Foods. Have you ever eaten anything from there food bars. I looked at the ingredients and got vegetables with balsamic vinegar. Would you trust it?

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Yeah, it's really funny that I never realized I wasn't much of a bread eater. I'm pleased with the Whole Foods Bakehouse brand bread and yet I only buy it about once a year and then I find I don't make it through the loaf.

Now, Amy's frozen gluten free dinners I would be lost without. I work 12 hour shifts and despite my best intentions I frequently don't make food for work so having those saves me.

When do you think I can start with Amy's frozen dinners? And what do you eat for breakfast? I am not much of a meat eater, just chicken. Are there any safe cereals to start with as a newbie?

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don't get discouraged - it took me 6 months before the D went away, and I'm still having some problems (been 8 months gluten-free now). Of course, I'm pregnant again so it's hard to tell what it just pregnancy symptoms and what is celiac related. I"ve heard it may take up to 2 years before you really start to feel better, so give it time.

And I agree about the bread - i didn't start trying gluten-free breads until about 3-4 months into it, and even then (and now), i only eat about a slice or 2 (or one english muffin) a month. You have to freeze it anyway, and toast it, so I just never think about it and i definitely don't crave it ;)

Wow, congrats on the pregnancy! 6 months, OMG. That is crazy. I have only had this D for three months this time.

Would you mind telling me what you were able to eat. I have lost so much weight, I would like to gain a few pounds.

thank you

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I'm really new to this myself to be very (very) honest. I'm lucky that two of the grocery stores near me (Canada, Ontario) have unexpectadly large 'gluten-free' aisle in thier organice foods section. I have a puffed rice cereal that i eat for breakfast and my dad bought a smoker so we're making gluten-free beef-jerky (I'm SUPER anemic) I'm actually quite blessed, the food guides as some places are phenomenal and actually three of them are celiac-run so the staff know what I'm talking about when i ask.

I can't image going through this with a new baby :( keep your hopes up, I'm having really really good days where I feel like I should :P

This Forum is so helpful and people are so understanding *Thank You All* :lol:

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jlynn - I started out just eating fresh fruits and veggies and meat and rice/potatoes (don't forget sweet potatoes - I eat a lot of those now, and spaghetti squash - yum!), but after about a month of that and severe depression b/c of it :) I added some gluten free packaged food like Envirokidz cereal bars and Pamela's pancake mix and gluten-free pasta. I also eat corn tortillas (any brand - just read the ingredients to make sure they are pure corn and no wheat, etc. added) for sandwhiches. I now also buy Lundberg rissoto mixes (in my regular grocery store in the organic/natural foods section) and I eat "regular" things like Cheetos, cocoa or fruity pebbles, pirates booty, and frozen/canned veggies and fruit (now that it's winter). All of that stuff might have some cross contamination issues, so it just depends on how sensitive you are. They don't bother me. I don't care for most of the Amy's meals.

Typical day's meals for me:

breakfast is some kind of fruit and/or a rice cake with peanutbutter (all are gluten-free that I've seen) and/or yogurt

lunch - quinoa salad (home made with chopped veggies) or sometimes the Thai Kitchen noodle bowls (very easy and can find them in the regular grocery store - make sure yoiu get the kinds that say gluten free on them)

snack - Pirates Booty or fruit or Envirokidz animal crackers (order on Amazon)

dinner - stir fry or hamburgers (I never used buns anyway) and baked beans and broccoli, etc.

snack - ice cream or popcorn

There are gluten free soysauces out there - just read ingredients and look for gluten free on them. Look in the Recipe section here for great ideas - I've started eating avocados a lot and hummus with carrots now. Spaghetti squash can be used as spaghetti or sauted in olive oil and spices for a side - I make a yummy casserole with it and mozzarella cheese and spaghetti sauce.

whenever I really crave some doughy, gooey, hot bread, I make the Chebe rolls (add cheese or garlic powder to the dough before baking). I'm going to attempt to make a pizza crust with it tonight - my first try at pizza (other than the nasty frozen gluten-free stuff you can buy in the store).

Keep reading here and feel free to ask anything!

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jlynn - I started out just eating fresh fruits and veggies and meat and rice/potatoes (don't forget sweet potatoes - I eat a lot of those now, and spaghetti squash - yum!), but after about a month of that and severe depression b/c of it :) I added some gluten free packaged food like Envirokidz cereal bars and Pamela's pancake mix and gluten-free pasta. I also eat corn tortillas (any brand - just read the ingredients to make sure they are pure corn and no wheat, etc. added) for sandwhiches. I now also buy Lundberg rissoto mixes (in my regular grocery store in the organic/natural foods section) and I eat "regular" things like Cheetos, cocoa or fruity pebbles, pirates booty, and frozen/canned veggies and fruit (now that it's winter). All of that stuff might have some cross contamination issues, so it just depends on how sensitive you are. They don't bother me. I don't care for most of the Amy's meals.

Typical day's meals for me:

breakfast is some kind of fruit and/or a rice cake with peanutbutter (all are gluten-free that I've seen) and/or yogurt

lunch - quinoa salad (home made with chopped veggies) or sometimes the Thai Kitchen noodle bowls (very easy and can find them in the regular grocery store - make sure yoiu get the kinds that say gluten free on them)

snack - Pirates Booty or fruit or Envirokidz animal crackers (order on Amazon)

dinner - stir fry or hamburgers (I never used buns anyway) and baked beans and broccoli, etc.

snack - ice cream or popcorn

There are gluten free soysauces out there - just read ingredients and look for gluten free on them. Look in the Recipe section here for great ideas - I've started eating avocados a lot and hummus with carrots now. Spaghetti squash can be used as spaghetti or sauted in olive oil and spices for a side - I make a yummy casserole with it and mozzarella cheese and spaghetti sauce.

whenever I really crave some doughy, gooey, hot bread, I make the Chebe rolls (add cheese or garlic powder to the dough before baking). I'm going to attempt to make a pizza crust with it tonight - my first try at pizza (other than the nasty frozen gluten-free stuff you can buy in the store).

Keep reading here and feel free to ask anything!

Wow!! Thank you so much! That was very helpful. I would love your recipe for quinoa salad. I am still staying away from raw veggies though. Depression is huge!!!!!! I think I was a little post pardum already after my baby was born last September. this really put me over the edge. Everyone is so great here!! Hopefully it becomes less overwhelming over time.

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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