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Losing My Grip


BSinCO

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BSinCO Newbie

I have been on a gluten free diet for over a year now, but I am still having many symptoms. I have been diagnosed with hypothyroidism, sjogrens, and I have several problems with my lower back, hips, and muscles in general. I have had chronic pain for over 6 years now.

I was accidentally glutened on Christmas Eve and have been struggling ever since. When I get gluten in my system, my pain increases in addition to the more common symptoms of stomach problems, emotional outbreaks, skin outbreaks, and fatigue.

I feel like no matter what I do, I am going to make something worse. I eat the same things all the time because every time I try something new, I make myself sick. This is not good though because I will probably cause another allergy by eating the same things too much, and even when I eat what I think is ok, I still feel terrible.

I am starting to see all food as poison and beginning to feel hopeless in general.

Help! :lol:


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misdiagnosed6yrs Apprentice
I have been on a gluten free diet for over a year now, but I am still having many symptoms. I have been diagnosed with hypothyroidism, sjogrens, and I have several problems with my lower back, hips, and muscles in general. I have had chronic pain for over 6 years now.

I was accidentally glutened on Christmas Eve and have been struggling ever since. When I get gluten in my system, my pain increases in addition to the more common symptoms of stomach problems, emotional outbreaks, skin outbreaks, and fatigue.

I feel like no matter what I do, I am going to make something worse. I eat the same things all the time because every time I try something new, I make myself sick. This is not good though because I will probably cause another allergy by eating the same things too much, and even when I eat what I think is ok, I still feel terrible.

I am starting to see all food as poison and beginning to feel hopeless in general.

Help! :lol:

As soon as the veteran posters read this, they will be able to help you. B)

I know the feeling.

I have only been diagnosed since Aug but am having many food issues right now. It kinda makes you hate life. :( I started to try an elimination diet but I messed that up.

The only thing I can say, and you see this a lot on here. If you can go gluten free after thinking you'd never be able to do it. You can do anything. Your health matters and whatever people suggest.. do it.

No matter how hard or even depressing, You need to figure out what YOU need to do, to be happy. So when you get advice. Go for it, full steam ahead. Besides, who's more important than you?

Take care. Good luck. Keep you spirits up!!

Bobbi :P

BSinCO Newbie
As soon as the veteran posters read this, they will be able to help you. B)

I know the feeling.

I have only been diagnosed since Aug but am having many food issues right now. It kinda makes you hate life. :( I started to try an elimination diet but I messed that up.

The only thing I can say, and you see this a lot on here. If you can go gluten free after thinking you'd never be able to do it. You can do anything. Your health matters and whatever people suggest.. do it.

No matter how hard or even depressing, You need to figure out what YOU need to do, to be happy. So when you get advice. Go for it, full steam ahead. Besides, who's more important than you?

Take care. Good luck. Keep you spirits up!!

Bobbi :P

Thank you for the kind words. When I started the diet, I was gung-ho. I was giving others advice on all of the sites I found and the recipes I was trying. Lately, I seem to be going through the grief period that I think I should have gone through a year and a half ago. I am not really sure how to handle it.

BS

GlutenWrangler Contributor

You sound like I did a year ago. I know exactly how you feel. I know what it feels like to want to give up. In fact I did give up. I stopped eating because it was too much to handle, and ended up in the hospital weighing 100 pounds in life-threatening condition. Now I receive my nutrition through an IV. I haven't had anything to eat in over 6 months. I am a true example of how bad it can get.

But I sometimes wish I fought harder to keep eating. And that's exactly what you should do. You DON'T want to end up like me. There are still things that you can eat, and you shouldn't worry about developing an allergy to those foods. If you can, eat organic foods. They are better for your body and they may help you to feel better.

You listed the other conditions that you have, and I'm assuming you take several medications. Have you confirmed that all of your medications are gluten-free? Also, have you checked all of your soap, lotions, shampoo, makeup....etc? Just make sure you're not coming in contact with any hidden gluten.

It sounds like you have other GI issues besides Celiac Disease. Have you been tested for food allergies? That might be a good idea if you haven't. It may also be a good idea to be tested for Candida. Candida can cause multiple food sensitivities, along with fatigue, joint pain, and a host of GI symptoms. It may be tough to find a doctor who will test you for it, but don't give up until you find one. You need a good, dedicated, open-minded doctor to help you through this tough time. Use every resource you have, including this forum. Just keep fighting, and eventually you will work your way through this. Just don't give up on it yet. I hope this helps, and I hope you start to feel better soon. Good luck,

-Brian

-Brian

Jestgar Rising Star

I saw a huge improvement in my health when I cut out soy. Now I also limit most grains and dairy as well. Even with limited foods I still feel even better when I eat all organic. Something about all the chemicals in/on our food.

BSinCO Newbie
You sound like I did a year ago. I know exactly how you feel. I know what it feels like to want to give up. In fact I did give up. I stopped eating because it was too much to handle, and ended up in the hospital weighing 100 pounds in life-threatening condition. Now I receive my nutrition through an IV. I haven't had anything to eat in over 6 months. I am a true example of how bad it can get.

But I sometimes wish I fought harder to keep eating. And that's exactly what you should do. You DON'T want to end up like me. There are still things that you can eat, and you shouldn't worry about developing an allergy to those foods. If you can, eat organic foods. They are better for your body and they may help you to feel better.

You listed the other conditions that you have, and I'm assuming you take several medications. Have you confirmed that all of your medications are gluten-free? Also, have you checked all of your soap, lotions, shampoo, makeup....etc? Just make sure you're not coming in contact with any hidden gluten.

It sounds like you have other GI issues besides Celiac Disease. Have you been tested for food allergies? That might be a good idea if you haven't. It may also be a good idea to be tested for Candida. Candida can cause multiple food sensitivities, along with fatigue, joint pain, and a host of GI symptoms. It may be tough to find a doctor who will test you for it, but don't give up until you find one. You need a good, dedicated, open-minded doctor to help you through this tough time. Use every resource you have, including this forum. Just keep fighting, and eventually you will work your way through this. Just don't give up on it yet. I hope this helps, and I hope you start to feel better soon. Good luck,

-Brian

-Brian

I am so sorry to hear how bad things have gotten for you. I really appreciate your advice and support.

I was reading through some of the posts and started researching Candida and gut dysbiosis. Ironically the site I found that has great information on this and other Celiac issues is a gastroenterologist right here in CO Springs. He is the Dr. for CeliacSpru.com I saw his partner about six months ago and was not happy with his knowledge about nutrition. I called this afternoon and am going to make an appointment with Dr. Lewey as soon as possible. I hope he will help me find out what is going on.

I shop at Wild Oats and eat all organic food. Another frustration is that this store is being taken over by Whole Foods so a lot of the foods I am used to are disappearing from the shelves. I emailed Whole Foods with my concerns, but have not heard back from them.

I will keep fighting. Thank you again.

BS

missy'smom Collaborator

For various reasons the second year has been harder for me even though I feel better now. One is that I had fewer expectations the first year and was greatful for every little improvement. Now that I'm feeling better I have higher expectations and am grieving the things that some grieve earlier on. Everyone experiences things differently. Sometimes it helps to just accept that this is what you're going through now, don't compare yourself to others, allow yourself to experience it and know that it will pass. I feel for you because the healing process can be long and frustrating. But hang in there.

Here are some things I tell myself when I'm struggling, depressed or feeling the effects of being glutened:

You don't have to make any decisions right now.

You don't have to figure it out right now.

Tomorrow is a fresh new day.

There will be other meals and some will be delicious. I just need to eat SOMETHING right now to keep my body going so that I can enjoy things when they come around.( I'm one to have pity party hunger strikes(skip a meal)

As for food. Try to see if you can make variations of the things that work for you. That builds in safe variety. Meatloaf can be mexican, italian etc., roasted chicken or potatoes can be BBQ, herb, etc., leftover chicken can be used for a simple soup, salad, brownies can be served with ice cream one time, berries another. Find ways to repurpose leftovers. When you clean up after a meal, freeze leftovers in individual meal size portions in containers so that you can save yourself some energy by not having to cook another meal. Certain things I don't save for special occasions anymore. I just enjoy them. I've been trying to experiment lately but it ends up being tiring, disappointing and frustrating so I'm going back to the basics again. I type up a list of meals and dishes that we like and work for us and keep in on the fridge or desktop and that way I don't get stuck hungry, tired and out of groceries, wracking my brain to remember what it is that we usually eat. I keep basic ingredients on hand and just pick from the list. That way I'm not as emotionally invested in every meal.


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Nancym Enthusiast

I had a lot of luck improving my health (and autoimmune diseases) using The Paleo Diet. It is something you might want to look into.

GlutenWrangler Contributor

I'm glad you were able to find a doctor who may be able to help you out. Candida and bacterial dysbiosis of the gut are real problems that most doctors overlook. But at least there are some good doctors out there.

It's great that you eat all organic foods. It's just too bad that Whole Foods is taking over Wild Oats in your area. I definitely wasn't too happy with the Whole Foods in my area. I experienced a lot of cross contamination issues with Whole Foods products, like vegetables, grains and nuts. But hopefully the store in your area is better. Anyway keep fighting and take care,

-Brian

BSinCO Newbie
I'm glad you were able to find a doctor who may be able to help you out. Candida and bacterial dysbiosis of the gut are real problems that most doctors overlook. But at least there are some good doctors out there.

It's great that you eat all organic foods. It's just too bad that Whole Foods is taking over Wild Oats in your area. I definitely wasn't too happy with the Whole Foods in my area. I experienced a lot of cross contamination issues with Whole Foods products, like vegetables, grains and nuts. But hopefully the store in your area is better. Anyway keep fighting and take care,

-Brian

I have not been happy with the take over so far. There is nobody on site to talk to about concerns. I am really not happy to hear that there are cross contamination problems. They are supposed to be a health food store. You would think that they would be more aware of and supportive of the growing group of people with severe allergies.

Thank you again for your comments and information.

BS

confused Community Regular

BSinCo,

Do you ever go shop at vitamin cottage in springs, i hear great things about it. I have only been in the one in pueblo, but i heard the springs one is so much bigger and cheaper then the one in pueblo.

paula

BSinCO Newbie
BSinCo,

Do you ever go shop at vitamin cottage in springs, i hear great things about it. I have only been in the one in pueblo, but i heard the springs one is so much bigger and cheaper then the one in pueblo.

paula

No I haven't because it's on the other side of town, but I will check it out. Thank you.

BS

nmw Newbie

BS,

I am a patient of Dr. Lewey and finally went to him after realizing I had multiple food intols after over a year of living gluten-free. He is out on the edge of food intols (compared to most GI docs), he understands firsthand and believes in what we are going through. He has a great blog as well - Google thefooddoc. PM me if you would like more detail, and I'll be happy to give you the whole scoop. On another note, I end up shopping WF, Vitamin Cottage, Wild Oats and other stores to get everything I need, as they all carry different products. It would be worth it for you to check out Vitamin Cottage. I am eating mostly Paleo as well, and it has made a huge difference, along with the use of probiotics and digestive enzymes.

Hang in there - it is tough but with the right help and perseverance you WILL get healthy.

misdiagnosed6yrs Apprentice
You sound like I did a year ago. I know exactly how you feel. I know what it feels like to want to give up. In fact I did give up. I stopped eating because it was too much to handle, and ended up in the hospital weighing 100 pounds in life-threatening condition. Now I receive my nutrition through an IV. I haven't had anything to eat in over 6 months. I am a true example of how bad it can get.

But I sometimes wish I fought harder to keep eating. And that's exactly what you should do. You DON'T want to end up like me. There are still things that you can eat, and you shouldn't worry about developing an allergy to those foods. If you can, eat organic foods. They are better for your body and they may help you to feel better.

You listed the other conditions that you have, and I'm assuming you take several medications. Have you confirmed that all of your medications are gluten-free? Also, have you checked all of your soap, lotions, shampoo, makeup....etc? Just make sure you're not coming in contact with any hidden gluten.

Wow Brian. Thats some amazing information. Thank you for sharing, it just goes to show others that they are not alone. I hope everything works out for you. Will you be able to eat your own foods again?

Take care

Bobbi

misdiagnosed6yrs Apprentice
I have been on a gluten free diet for over a year now, but I am still having many symptoms. I have been diagnosed with hypothyroidism, sjogrens, and I have several problems with my lower back, hips, and muscles in general. I have had chronic pain for over 6 years now.

I was accidentally glutened on Christmas Eve and have been struggling ever since. When I get gluten in my system, my pain increases in addition to the more common symptoms of stomach problems, emotional outbreaks, skin outbreaks, and fatigue.

I feel like no matter what I do, I am going to make something worse. I eat the same things all the time because every time I try something new, I make myself sick. This is not good though because I will probably cause another allergy by eating the same things too much, and even when I eat what I think is ok, I still feel terrible.

I am starting to see all food as poison and beginning to feel hopeless in general.

Help! :lol:

BSinCO

You have received a ton of amazing information. I wish you the best of luck. It makes me nervous to hear all these stories. I don't want to be sick anymore and it seems that celiac is the gateway disease to a whole mess of problems. Psst. and I thought gluten was bad.

I just wanted to check in on you. You are so lucky to have a doctor near you. I don't have any of those.

Take care

Bobbi (inNH)

GlutenWrangler Contributor
Wow Brian. Thats some amazing information. Thank you for sharing, it just goes to show others that they are not alone. I hope everything works out for you. Will you be able to eat your own foods again?

Take care

Bobbi

Hopefully at some point I will be able to eat again. I'm still in the process of finding a doctor who can help me. And even though my situation is really bad, it really makes me feel good to be able to offer help and support for people with questions and concerns about their own health.

BS - I'm sorry to be the bearer of bad news about Whole Foods. But maybe your store will be different than mine. I just remember a lot of the packages said "produced in a facility which also produces wheat, dairy, tree nuts, ...etc. I hope you feel better soon.

-Brian

Carol L. Newbie

New Celiac

Jan 4, 2008

I was diagnosed in October after 10 years of problems (unfortunatley the IBS label is very broad and I think affects many of us). I have only met two other Celiads and am struggling to find someone to understand how devastating this has been for me. It is a grieving process as I learn to say good-bye to a life that I have always enjoyed. My mother's home-made pie crust, Subway sandwiches shared with my children, a cold beer on the boat. As a mother I find that it's easier for me to go without so that I can keep my kid's eating habits the same. I've lost quite a bit of weight. I often wonder if it's easier to just deal with the pain vs. eating gluten-free. I guess I'm searching for some answers to questions that I don't even know how to ask and I'm hoping this forum can help me.

Carol L.

For various reasons the second year has been harder for me even though I feel better now. One is that I had fewer expectations the first year and was greatful for every little improvement. Now that I'm feeling better I have higher expectations and am grieving the things that some grieve earlier on. Everyone experiences things differently. Sometimes it helps to just accept that this is what you're going through now, don't compare yourself to others, allow yourself to experience it and know that it will pass. I feel for you because the healing process can be long and frustrating. But hang in there.

Here are some things I tell myself when I'm struggling, depressed or feeling the effects of being glutened:

You don't have to make any decisions right now.

You don't have to figure it out right now.

Tomorrow is a fresh new day.

There will be other meals and some will be delicious. I just need to eat SOMETHING right now to keep my body going so that I can enjoy things when they come around.( I'm one to have pity party hunger strikes(skip a meal)

As for food. Try to see if you can make variations of the things that work for you. That builds in safe variety. Meatloaf can be mexican, italian etc., roasted chicken or potatoes can be BBQ, herb, etc., leftover chicken can be used for a simple soup, salad, brownies can be served with ice cream one time, berries another. Find ways to repurpose leftovers. When you clean up after a meal, freeze leftovers in individual meal size portions in containers so that you can save yourself some energy by not having to cook another meal. Certain things I don't save for special occasions anymore. I just enjoy them. I've been trying to experiment lately but it ends up being tiring, disappointing and frustrating so I'm going back to the basics again. I type up a list of meals and dishes that we like and work for us and keep in on the fridge or desktop and that way I don't get stuck hungry, tired and out of groceries, wracking my brain to remember what it is that we usually eat. I keep basic ingredients on hand and just pick from the list. That way I'm not as emotionally invested in every meal.

ravenwoodglass Mentor
New Celiac

Jan 4, 2008

I was diagnosed in October after 10 years of problems (unfortunatley the IBS label is very broad and I think affects many of us). I have only met two other Celiads and am struggling to find someone to understand how devastating this has been for me. It is a grieving process as I learn to say good-bye to a life that I have always enjoyed. My mother's home-made pie crust, Subway sandwiches shared with my children, a cold beer on the boat. As a mother I find that it's easier for me to go without so that I can keep my kid's eating habits the same. I've lost quite a bit of weight. I often wonder if it's easier to just deal with the pain vs. eating gluten-free. I guess I'm searching for some answers to questions that I don't even know how to ask and I'm hoping this forum can help me.

Carol L.

Carol, welcome, you have come to a great place for support. Don't give up on the diet, it takes adjustment but the damage that will be done to you if you don't do it will be more than you could ever imagine. For your sake and your families read as much as you can here and post any questions you have or just vent if you need to. There are a lot of us here who will understand.

Genie75 Rookie

Hello,

I am sorry to hear you are having such troubles with food. I too have been there and felt like all food were poisons. I have finally "recovered" after a very bad 2 month bout that went a bit into Xmas. When I have one of those bouts when my body rejects all food, even vitamins, everything, I have tried the post-gastro diet, which consists of day 1 (clearish liquids like gingeral, diluted juices), then day 2 to add in bananas and rice pablum and boullion (gluten free), and day 3 to try and add small amounts of chicken, and more rice pablum and bananas and apple sauce, and then day 4, add soft veggies like zuchini.

I was on this diet I think for almost 2 weeks and I was not making much progress this time. Anytime I went back to solid rice, or anything too fibrous, I was running to the bathroom again,and everything running thru me. Was very disheartening.

Anyways, I was getting pretty hungry and wanted to eat, but didn't want to eat cause I was tired of running to the bathroom all the time and all the gas, etc.

Some suggested that perhaps I had something more wrong with me than Celiac and I researched a bit, and I noticed a lot of my symptoms sounded like Krohn's. I googled Krohn's and it came up with the Paleo diet.

I had a huge success with the paleo diet, after following it for a few weeks. It allowed whatever was wrong with me to heal inside (or to just rest, I don't know, I'm not a doctor). And now I am gradually adding back in more firbrous foods like rice and millet, and rougher veggies that I had been struggling with for quite a while.

The paleo diet info can be found at Open Original Shared Link. Might be worth a try till your insides heal up a bit.

I also have success with the Blood type diet as well, when I am recovered from a bout. I know the hardest part is getting better enough to eat a wide variety of foods again. Open Original Shared Link

Anyways, this is just my experience. I was very sick for November and December and really thought I was never going to get better.

Oh and I forgot. I also take a large variety of probiotics daily now, including 3-Lac which kills fungus in the digestive tract. That probably helps as well, and I'm trying to avoid suger also.

Best to you, Genie

Glutenfreefamily Enthusiast

I know the feeling well, I believe I had leaky gut. I felt great after going gluten free for about a month or two then everything seemed to bother me. I was down to 8 foods that I was ok with and then those foods were inconsistent and I stopped eating before I would leave the house for fear of stomach upset while I was out and never ate anything but drank water till I came back home. It was hard and I just wished I could take a pill that would work instead of food just to know that my stomach would be ok after taking it. Thankfully a few years into the diet my world opened up and I can now tolerate so many foods that I couldnt before. I still have a few issues but not near as many as before and as long as I bring my food I'm ok now with eating in public.

Carol- Welcome to the board there are a great bunch of people here to make the transistion easier.

Genie75 Rookie

Hi Carol,

I am going a bit thru the grief also. I just want to say though, that I don't have a celiac diagnosis from the doctor, and my celiac test results were always negative cause I was eating gluten free before the tests. No-one told me that having negative test results did not mean I was not Celiac. If someone would have told me this years ago, I would have faithfully stuck to a gluten free diet. For the past 11 years, I have been on a syndrome where I get sick, then stop eating glutens and eventually get better, and then eat glutens and get sick again. All because I thought I did not have Celiac disease. I thought maybe I was just sensitive or allergic to them or something. I was following the Blood type diet, and I am blood type O and it is recommended that blood type O's do not eat glutens. It does not say that blood type O people are Celiacs and there's no correlation. It was just a fluke that I found this book, and that his diet made me feel much better.

After a while though, after much suffering from not eating gluten-free, I do not wish to ever let another gluten enter my body again. I am tired of being sick, and really thought I would not recover from the last bout.

I have been grieving too, as it was a month before Xmas that the Celiac association told me I am a "self diagnosed" (reproduced thru diet), and that I may never have a positive test for Celiac disease in my entire life. Unless I want to go thru the pain of eating glutens for 6 weeks to 2 months to get positive test results on my small bowel biopsy.

Anyways, sorry to be so wordy. What I am trying to say is that you may or may not switch back to eating and not eating glutens. You may "fall off the wagon" and eat glutens. But eventually I think you will come to realize that it is not worth it for the amount of sickness.

Also, once you start eating gluten free, after a while, you see there is a whole world of foods that you can eat, and it will become like 2nd nature to you.

The hardest part I have is with people trying to get me to eat things that I shouldn't. Like I won't eat anything that I am not fairly confident doesn't have gluten in it. I tell people it's my body, I'm the one getting sick, and I'm not going to risk eating it.

I am also getting better at communicating with restaurants.

But yeah, it's a huge organization feat and I've got to be more organized for trips, for eating out, etc.

Don't worry you'll get the hang of gluten-free eating. I even tell my bf that someday he'll thank me for all the gluten-free foods I fee him! LOL

Genie

New Celiac

Jan 4, 2008

I was diagnosed in October after 10 years of problems (unfortunatley the IBS label is very broad and I think affects many of us). I have only met two other Celiads and am struggling to find someone to understand how devastating this has been for me. It is a grieving process as I learn to say good-bye to a life that I have always enjoyed. My mother's home-made pie crust, Subway sandwiches shared with my children, a cold beer on the boat. As a mother I find that it's easier for me to go without so that I can keep my kid's eating habits the same. I've lost quite a bit of weight. I often wonder if it's easier to just deal with the pain vs. eating gluten-free. I guess I'm searching for some answers to questions that I don't even know how to ask and I'm hoping this forum can help me.

Carol L.

Offthegrid Explorer

It is really frustrating. I've been gluten-free for a year now, too, and have had many symptoms over the months. I *assumed* I was just getting glutened, but in reality, it is that I have a ton of other food intolerances.

I have not been tested for candida, but I believe it may be causing my problems.

In any case, I eliminated, in this order: gluten, dairy, casein, soy, potatoes, and now I am for the most part trying to avoid rice and corn. I have noticed a big, big, big, big improvement.

It's hard, but it gets easier every day. I'd try to start going back to more basic foods and eliminating the starches.

BSinCO Newbie
It is really frustrating. I've been gluten-free for a year now, too, and have had many symptoms over the months. I *assumed* I was just getting glutened, but in reality, it is that I have a ton of other food intolerances.

I have not been tested for candida, but I believe it may be causing my problems.

In any case, I eliminated, in this order: gluten, dairy, casein, soy, potatoes, and now I am for the most part trying to avoid rice and corn. I have noticed a big, big, big, big improvement.

It's hard, but it gets easier every day. I'd try to start going back to more basic foods and eliminating the starches.

I thank all of you for the support and advice. It is so nice to know that I am not alone. Welcome Carole. I hope you get as much from this forum as I am.

As a result of the posts here and elsewhere I started looking into Candida and I went to Vitamin Cottage yesterday. I started on a Candida medicine that contains positive bacteria to replace the Candida it is going to remove. From the Candida check list I completed and spit test I did, it seems pretty obvious that it is adding to my problems. I have already removed gluten, corn, soy, dairy, tomatoes, and just yesterday sugar and simple carbohydrates. This is causing a lot of stress because I crave sugar constantly (one of the main symptoms of Candida). I am hoping that Dr. Lewey is going to be able to help me manage this new diet and the medications I am taking.

BSinCO

BSinCO Newbie
Hopefully at some point I will be able to eat again. I'm still in the process of finding a doctor who can help me. And even though my situation is really bad, it really makes me feel good to be able to offer help and support for people with questions and concerns about their own health.

BS - I'm sorry to be the bearer of bad news about Whole Foods. But maybe your store will be different than mine. I just remember a lot of the packages said "produced in a facility which also produces wheat, dairy, tree nuts, ...etc. I hope you feel better soon.

-Brian

I really hope you can find a Doctor that will help. It sucks that there are so many uniformed doctors out there. I wonder if Dr. Lewey can do phone consults? I will ask him when I get an appointment. I hope it won't take too long to get one.

It really is nice to be able to offer support as well as receive it here. Thank you for all of your feedback.

BSinCO Newbie
BS,

I am a patient of Dr. Lewey and finally went to him after realizing I had multiple food intols after over a year of living gluten-free. He is out on the edge of food intols (compared to most GI docs), he understands firsthand and believes in what we are going through. He has a great blog as well - Google thefooddoc. PM me if you would like more detail, and I'll be happy to give you the whole scoop. On another note, I end up shopping WF, Vitamin Cottage, Wild Oats and other stores to get everything I need, as they all carry different products. It would be worth it for you to check out Vitamin Cottage. I am eating mostly Paleo as well, and it has made a huge difference, along with the use of probiotics and digestive enzymes.

Hang in there - it is tough but with the right help and perseverance you WILL get healthy.

I would love to hear more information. I am waiting to be transferred from his partner to him. I can't believe I was in the same office and ended up with a Dr. that doesn't have a clue about what we are going through. It turned me off from gastroenterologists in general. How long have you been seeing Dr. Lewey?

BS

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    • Toaster
      No other tests. This was from about 10 years ago, I noticed it when checking through my all bloods to look for patterns.  I will go back to my doctor...
    • trents
      Were there any other tests besides the EMA run for celiac disease? If not, you should request them. At minimum, "total IGA" and "tTG-IGA" should be ordered. A more complete celiac panel would also include the DGP-IGA, DGP-IGG and TTG-IGG. And very importantly, you should not have been reducing gluten consumption in the weeks/months leading up to the testing blood draw.
    • Toaster
      I'm looking into it. I have several quite low vitamin results which I believe may be from malabsorption. B12, ferritin, folate, vit d all very low. Re-occuring mouth issues, gut issues. 
    • trents
      Have you been diagnosed with celiac disease or are you looking into it?
    • Toaster
      Thank you. There is no reference range mentioned unfortunately.
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