New To Forum

[LoCalBee]

I am new to the forum, but gluten-free is something Im very familiar with. Just wanted to stop by and say hello, and introduce myself. Im 27, and have been gluten-free for 2 years. Spent most of my life being diagnosed with many things, but thats the norm right?! Im comfortable in my gluten-free skin, but I have slip ups from time to time. Im also recovering from a bout of denial I experienced during the summer. I somehow convinced myself that it wouldn't hurt to cheat. WRONG, Im paying dearly for what I have done, but Ill be okay. I had a eureka moment when I found this forum, so, Im VERY glad to be in company with those who truly understand that never ending comment made by a well meaning family member who says "Just one bite wont hurt ya, right!!" But we truly know & understand without explanation, what "Just One Bite" will do Nice to meet you all

[Daisy Nae]

Hello, I am also a new member and excited to be a part of this group! I really need more information concerning Celiac Disease. I am sure the support will help keep me on track. I was diagnosed a few months ago. Doing well but feel I can do better!!! I wish us all well!!!

[Dixiebell]

Hi! Welcome! Ask any questions you need to. There are many smart people here.

[Loey]

Hi! Welcome! Ask any questions you need to. There are many smart people here.

Hello,

I'm also new to the forum and new to the diet. We had recently moved to a new state and my old G.I. wanted me to have the capsule endoscopy. She felt that this had gone undiagnosed for a long time and wanted to make sure there was no organ damage. My new doctor didn't think that was necessary because I was doing well when I brought my son in for genetic testing (in August). I was diagnosed in June - moved the day after I got my test results and slowly improved before seeing him - two and a half months after I moved.Then three weeks ago I started going downhill. When I saw him this week he told me my bloodwork showed high levels of gluten (or the markers for it) and there was gluten in something I was eating (as I mentioned above). I decided to be proactive and told him I wanted the capsule endoscopy. It's scheduled pending authorization from my insurance. In the mean time he put me on a 4 wk course of prednisone (weaning down 10 mg a a week - starting at a regimen of of 40 mg a day for a week, then 30 a day for a week, etc). I've taken prednisone for respiratory problems in the past and haven't had bad side effects. I need to feel better for next Saturday. We have really good seats at a Roger Water's "The Wall" concert and it will be the first time we see our son since he left for college at the end of August. I'm hoping a combination of the prednisone and eliminating more foods from my diet will help me do that. Even if I feel better for just one day right now. I also want and need to be able to start looking for a job but it's just not possible at the moment. As an elementary and special education teacher I'll be able to start out by subbing and not take a job if it's a bad day but right now I haven't felt well enough to even submit the paperwork.

This recent flare has really made me homesick. Close friends in our neighborhood had two family members suffering from Celiac and I could always walk over for a chat and when they had us over for dinner it was home cooked and gluten free. We email but it was nice having them around the corner. I had lived there for 20 years and in NJ my entire life.

I'm sorry if this replyis long. I feel a connection to this forum and I think I need that right now. I'm a very positive person and don't want the Celiac to change that. I am going to look into the Celiac Support Group in my state and see when and where they meet. Right now driving too far can be an issue. My husband and I went for a car ride yesterday and I had to stick two books in my seat belt to not have pain.

I'm also being a detective to see what my triggers are (some lists say canola oil is all right but it's not for me) and find out what I've been eating that has gluten in it. I know all of the labeling is not accurate because the FDA doesn't make the manufacturers list barley, oat or rye or if they're processed in the same plant as those grains. I'm just so frustrated today!

Thanks for listening!

Loey

[sa1937]

Welcome to the forum, Loey! You've come to the right place to get answers to some of your questions. Personally I feel it takes time to heal and I know I expected to feel good right away. Wishful thinking on my part. I still don't know if I can tolerate dairy...am going to test it again soon as I've been gluten free for six months now. I bought but still haven't tried gluten free oats and I really do miss oatmeal.

Canola oil is a safe oil. That does not mean you can tolerate it though. Everyone is so different and sometimes it's hard to tell how we get zapped.

Is your whole household eating gluten free? Your best bet might be to eat simple whole foods and skip anything prepared for now and then you won't have to worry about possible cross contamination...shop the outer rim of the supermarket for fresh fruits, veggies, meats and eggs (if you can tolerate them).

When I went gluten free on April 9, I tossed a lot of kitchen stuff I knew I'd never be able to get clean. Bought a new toaster, colander, cutting boards, wooden spoons, rubber spatulas, got rid of some old Teflon cookware, Tupperware and anything else I could think of that could harbor hidden gluten from years of cooking. Have you checked your shampoo/conditioner, cosmetics, lipsticks and personal care products? Some people are really sensitive to a lot of those products. Also, have you checked your vitamins and meds to make sure they're gluten free?

Hope you feel better soon and can get some answers from your dr. as to why you're having problems!

[Loey]

Welcome to the forum, Loey! You've come to the right place to get answers to some of your questions. Personally I feel it takes time to heal and I know I expected to feel good right away. Wishful thinking on my part. I still don't know if I can tolerate dairy...am going to test it again soon as I've been gluten free for six months now. I bought but still haven't tried gluten free oats and I really do miss oatmeal.

Canola oil is a safe oil. That does not mean you can tolerate it though. Everyone is so different and sometimes it's hard to tell how we get zapped.

Is your whole household eating gluten free? Your best bet might be to eat simple whole foods and skip anything prepared for now and then you won't have to worry about possible cross contamination...shop the outer rim of the supermarket for fresh fruits, veggies, meats and eggs (if you can tolerate them).

When I went gluten free on April 9, I tossed a lot of kitchen stuff I knew I'd never be able to get clean. Bought a new toaster, colander, cutting boards, wooden spoons, rubber spatulas, got rid of some old Teflon cookware, Tupperware and anything else I could think of that could harbor hidden gluten from years of cooking. Have you checked your shampoo/conditioner, cosmetics, lipsticks and personal care products? Some people are really sensitive to a lot of those products. Also, have you checked your vitamins and meds to make sure they're gluten free?

Hope you feel better soon and can get some answers from your dr. as to why you're having problems!

Thank you so much for the very helpful reply.

My house is entirely gluten free (to the best of my knowledge). Didn't make me a popular mom with my son over the summer but he tested negative (phew) and is enjoying any food he wants at college (that will change when he comes home for break). I don't even let my husband bring in leftovers from a restaurant if they weren't on the gluten free menu (he's extremely supportive). When we moved I had an initial diagnosis so I gave away all of my old appliances and dishes and bought new ones to start fresh. I literally saw my GI in NJ about the regular endoscopy results the night before we moved and she was alarmed at how long it had gone undiagnosed. She wanted my new doctor to do the capsule endoscopy. I was doing better for a few months. When I took my son in to be tested genetically so he said I didn't need the test.

I had been using canola oil in my cooking because everything I read listed it as acceptable. Not for me. We also frequent Ninety-Nine (they have a gluten free menu with gluten-free fries). We were there last night and I asked the waitress to check the oil they used for the fries and it turns out that they use a combination oil that had canola oil in it. I'm going back to basics and will take your advice and shop the outer aisles. Also, do you know how the elimination diet is done? Do you eliminate all of the foods you think are causing a problem and reintroduce them one at a time? I use eggs a lot and also never had a problem with dairy.

I purchased the Triumph Dining Series (Restaurant Guide, Grocery Guide, and Dining Cards). I can't tolerate some of the items that they say are all right so it's time to play detective. BTW, the dining cards are really interesting. They're laminated and can fit in your wallet. They have the details of what we can't tolerate and the problem with cross contamination on one side in the language of the cuisine on one side and the same information in English on the other side.

Before I became a teacher I wanted to be a librarian so I'm a Resource Geek. if there's ever anything that someone on the forum needs researched I'm pretty good at finding it.

Thanks again for the warm welcome. It's hard enough to move to a new state but right now I'm home most of the time.

Loey

[sa1937]

Thank you so much for the very helpful reply.

My house is entirely gluten free (to the best of my knowledge). Didn't make me a popular mom with my son over the summer but he tested negative (phew) and is enjoying any food he wants at college (that will change when he comes home for break). I don't even let my husband bring in leftovers from a restaurant if they weren't on the gluten free menu (he's extremely supportive). When we moved I had an initial diagnosis so I gave away all of my old appliances and dishes and bought new ones to start fresh. I literally saw my GI in NJ about the regular endoscopy results the night before we moved and she was alarmed at how long it had gone undiagnosed. She wanted my new doctor to do the capsule endoscopy. I was doing better for a few months. When I took my son in to be tested genetically so he said I didn't need the test.

I had been using canola oil in my cooking because everything I read listed it as acceptable. Not for me. We also frequent Ninety-Nine (they have a gluten free menu with gluten-free fries). We were there last night and I asked the waitress to check the oil they used for the fries and it turns out that they use a combination oil that had canola oil in it. I'm going back to basics and will take your advice and shop the outer aisles. Also, do you know how the elimination diet is done? Do you eliminate all of the foods you think are causing a problem and reintroduce them one at a time? I use eggs a lot and also never had a problem with dairy.

I purchased the Triumph Dining Series (Restaurant Guide, Grocery Guide, and Dining Cards). I can't tolerate some of the items that they say are all right so it's time to play detective. BTW, the dining cards are really interesting. They're laminated and can fit in your wallet. They have the details of what we can't tolerate and the problem with cross contamination on one side in the language of the cuisine on one side and the same information in English on the other side.

Before I became a teacher I wanted to be a librarian so I'm a Resource Geek. if there's ever anything that someone on the forum needs researched I'm pretty good at finding it.

Thanks again for the warm welcome. It's hard enough to move to a new state but right now I'm home most of the time.

Loey

You're off to a good start then! Have you eliminated dairy? My dr. suggested it after my positive EGD/biopsy since the villi get damaged by celiac. I do use Lactaid milk but never felt Lactaid tablets were effective. Also some people have problems with soy. I don't think I do but I don't go out of my way to buy products that contain it (it's in so many products).

I really don't eat out either...it's a dangerous world out there for a newly diagnosed celiac! I just feel safest eating when I know what's in my food. We have no total gluten free restaurants here (small town, Pennsylvania) and I don't trust the rest. I still consider myself newly diagnosed as I've only been gluten free for six months.

I have no experience with an elimination diet but others on here do so hopefully one of them will be able to help. Or do a search on here for elimination diets and I'm sure you'll come up with lots of threads.

Good luck!

[Loey]

You're off to a good start then! Have you eliminated dairy? My dr. suggested it after my positive EGD/biopsy since the villi get damaged by celiac. I do use Lactaid milk but never felt Lactaid tablets were effective. Also some people have problems with soy. I don't think I do but I don't go out of my way to buy products that contain it (it's in so many products).

I really don't eat out either...it's a dangerous world out there for a newly diagnosed celiac! I just feel safest eating when I know what's in my food. We have no total gluten free restaurants here (small town, Pennsylvania) and I don't trust the rest. I still consider myself newly diagnosed as I've only been gluten free for six months.

I have no experience with an elimination diet but others on here do so hopefully one of them will be able to help. Or do a search on here for elimination diets and I'm sure you'll come up with lots of threads.

Good luck!

Thanks again so much for your replies. As you can tell by the time this was written I've been waking up early in pain. Today I'm determined to get out of the house to get comfortable sweatpants (I wear a size small but any pressure makes the pain worse). It's already very cold where we live (RI is surrounded by water on three sides so it's always 10 degrees colder than where I use to live (NJ). It's really beautiful here and I want to be able to enjoy what it has to offer. During the summer I would go to the beach (even if I felt bad) but it's pretty cold now. When I do feel better I can bundle up and walk along the shoreline.

I have begun to eliminate milk but I never had a problem with it before the gluten-free diet. I was also able to eat eggs and other forms of dairy . I've only been going to restaurants that have Gluten-Free Menus but there might still be cross contamination. When we go out to eat my husband always has the bread they put out. It's not near me on the table but could that still be too close? I also think that since my diagnosis is so new I need to be especially careful. I cooked my husband Hungarian Goulash last night that I had ordered from a gluten-free website but decided not to eat it just in case. Had a plain baked potato instead.

We have tickets to a concert with my son this Friday (I thought it was Saturday) and I will do anything I need to attend and get a chance to see him. When we first moved he was very angry at us because he didn't get to spend his last summer before college with his friends. On top of that he had to eat gluten-free. It took 2 and 1/2 weeks before he called us when he got to school so I'm really looking forward to getting a chance to see him. I guess when we go to the concert I can make myself a sandwich to eat rather than ordering anything at a restaurant. I've found a lot in my area that have gluten-free menus but I think right now I'll wait for this flare to pass and for the results of the CE.

BTW, what's a EGD/biopsy? I had a colonoscopy, an upper GI series and a regular endoscopy. There were polyps but thankfully benign. I think I mentioned that I insisted on the capsule endoscopy and it's scheduled pending authorization from my insurance. I want to make sure there was no organ damage since the villi already showed damage on my initial testing. I feel blessed that i was diagnosed by my old doctors before I moved. I do find that I need to be proactive and more insistent with my new doctor up here. I'm also realizing that just because they're GI's they deal with a lot of other illnesses and we have to really dig deep for our own answers.

Loey

[sa1937]

Thanks again so much for your replies. As you can tell by the time this was written I've been waking up early in pain. Today I'm determined to get out of the house to get comfortable sweatpants (I wear a size small but any pressure makes the pain worse). It's already very cold where we live (RI is surrounded by water on three sides so it's always 10 degrees colder than where I use to live (NJ). It's really beautiful here and I want to be able to enjoy what it has to offer. During the summer I would go to the beach (even if I felt bad) but it's pretty cold now. When I do feel better I can bundle up and walk along the shoreline.

I have begun to eliminate milk but I never had a problem with it before the gluten-free diet. I was also able to eat eggs and other forms of dairy . I've only been going to restaurants that have Gluten-Free Menus but there might still be cross contamination. When we go out to eat my husband always has the bread they put out. It's not near me on the table but could that still be too close? I also think that since my diagnosis is so new I need to be especially careful. I cooked my husband Hungarian Goulash last night that I had ordered from a gluten-free website but decided not to eat it just in case. Had a plain baked potato instead.

We have tickets to a concert with my son this Friday (I thought it was Saturday) and I will do anything I need to attend and get a chance to see him. When we first moved he was very angry at us because he didn't get to spend his last summer before college with his friends. On top of that he had to eat gluten-free. It took 2 and 1/2 weeks before he called us when he got to school so I'm really looking forward to getting a chance to see him. I guess when we go to the concert I can make myself a sandwich to eat rather than ordering anything at a restaurant. I've found a lot in my area that have gluten-free menus but I think right now I'll wait for this flare to pass and for the results of the CE.

BTW, what's a EGD/biopsy? I had a colonoscopy, an upper GI series and a regular endoscopy. There were polyps but thankfully benign. I think I mentioned that I insisted on the capsule endoscopy and it's scheduled pending authorization from my insurance. I want to make sure there was no organ damage since the villi already showed damage on my initial testing. I feel blessed that i was diagnosed by my old doctors before I moved. I do find that I need to be proactive and more insistent with my new doctor up here. I'm also realizing that just because they're GI's they deal with a lot of other illnesses and we have to really dig deep for our own answers.

Loey

I'm sorry to hear you woke up so early with pain. You might want to be really careful with eating anything processed between now and the concert and hope that you'll feel a difference by then. I know it just takes so long sometimes to figure out what bothers us.

I never had a problem with milk products before either although prior to my EGD, I have no idea what was bothering me...I just assumed it was gluten but it was probably far more encompassing than that. And to clarify a point: Eggs are not dairy...that's just normally where they're found in the store! That doesn't mean that everyone can tolerate them though.

An EGD is an endoscopy and with the scope, my GI dr. also took half a dozen biopsies. The scope can only reach so far though whereas a capsule will pass through your entire digestive system so may reveal more. I haven't had the capsule. I really went for the "gold standard" as my daughter has had a problem with gluten for several years and I wanted it so she would take it seriously. She had the newer celiac panel (Deamidated Gliadin Peptides test), which came up positive. She went straight to the gluten free diet and skipped seeing a GI dr.

If you want to read a good book on celiac, I highly recommend Celiac Disease: A Hidden Epidemic by Dr. Peter Green, Director of the Celiac Disease Center at Columbia University.

I can understand your son's anger about having to move and not see his friends before going off to college. It's tough to be young and have to do that. Hopefully he's made a lot of new friends at college. As far as gluten free foods are concerned, I really don't find the diet difficult or unpalatable. A lot of the foods I've prepared all my life were unknowingly gluten free...just simple meals using basic whole foods. I never was one for buying much prepared foods as I've always found home-cooked to be so much better.

[Detonica]

Thank you so much for the very helpful reply.

Also, do you know how the elimination diet is done? Do you eliminate all of the foods you think are causing a problem and reintroduce them one at a time? I use eggs a lot and also never had a problem with dairy.

Loey

Hello!

I am reading a book right now called GAPS Guide by Baden Lashkov (GAPS stands for Gut And Psychology Syndrome). It's a step by step guide leading up to and through an elimination diet. It's also called the Specific Carbohydrate Diet (SCD).The author talks about how we develop sensitivity or allergies to foods because of underlying problems... and by carefully and slowly building your health back up and healing your body, you can re-integrate many food items! This was really exciting for me to hear... I have become sensitive to many things (not gluten related) over the past year that I never had a problem with before.

Anyway the author has a website... Open Original Shared Link

To give you an idea, I am in the middle of the preparation stage, slowly accumulating supplies and stocking up my freezer with acceptable foods that I'm learning to make, like bone broths and pureed vegetable soups. During this phase I also am experimenting with recipes to get used to the program. When I officially start, I will be ready to successfully adhere to the diet. You start with a very very simple diet and can not eat anything except what is listed for the intro phase. Then, slowly, you add food items one by one in small doses and see if your body reacts to it. If you do, then your body is not ready for it and you have to wait another week (while adding other food items slowly) before you can try re-introducing that specific food again.

During this whole process your body is detoxing and you are introducing nutrient rich food into your diet that maybe you've never had before. It may sound kind of drastic, but obviously I am at a point where I have no choice. My body can't process anything, I'm not absorbing any nutrients and I can't even handle probiotics. I literally wanted to die for several weeks. Now, even though I haven't started the diet yet, I am still eating better and feeling better. I wouldn't say I'm "healthy" but at least I'm not contemplating death. I'm more and more excited to start the program the closer I get.

I don't have a lot of experience with other elimination diets, but I just thought I'd share this one with you. The GAPS Guide is based on a much larger book called "Gut and Psychology Syndrome" by Dr. Natasha Campbell McBride. The idea (according to Lashkov) was to make the SCD more accessible and easier to get into, but Lashkov really encourages actually reading McBride's book as well. (Haven't done that yet myself)

Anyway, hope that helps...

[Emilushka]

An EGD is an endoscopy and with the scope, my GI dr. also took half a dozen biopsies. The scope can only reach so far though whereas a capsule will pass through your entire digestive system so may reveal more. I haven't had the capsule. I really went for the "gold standard" as my daughter has had a problem with gluten for several years and I wanted it so she would take it seriously. She had the newer celiac panel (Deamidated Gliadin Peptides test), which came up positive. She went straight to the gluten free diet and skipped seeing a GI dr.

EGD stands for esophagogastroduodenoscopy, and it really just tells you exactly where the camera goes: through the esophagus and stomach (gastro) to the duodenum (small intestine). If you get both ends scoped (EGD + colonoscopy) you're still missing most of the small intestine because the colonoscopy only gets into the very tail end of the small intestine, at the ileum. That's why the capsule can be useful, but the capsule can't take biopsies and can't be used to zoom in if there's something interesting to see, for example.