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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

1 And A Half Years On The Diet. Starting To Feel Sick All Over Again After Endoscopy Showed No Damage?
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11 posts in this topic

Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be. I know that can also depend on what else I am eating, though. Anyways, my doctor gave me an endoscopy and found that while I have a very sensitive and somewhat irritated stomach (which I've kindof always known.. but thats not enough to cause all the intestinal discomfort and runs), my small colon where the celiac is looked great as if I hadn't irritated it at all. I am so confused. Even my doctor is confused... (I'm going to get a second opinion as soon as I can find a good doctor) Could I be battling with something more than celiac? Or could it just be an extreme sensitivity? I do eat out often, but usually only at Chipotle.. it used to be fine until now sometimes I react and other times I don't. I am so tired of not being able to live my life to its fullest and instead being in the bathroom all day, or in bed with intestinal cramping and feeling sick. I need your guys's help. What should I do? Have any of you dealt with somehting like this?

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Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be. I know that can also depend on what else I am eating, though. Anyways, my doctor gave me an endoscopy and found that while I have a very sensitive and somewhat irritated stomach (which I've kindof always known.. but thats not enough to cause all the intestinal discomfort and runs), my small colon where the celiac is looked great as if I hadn't irritated it at all. I am so confused. Even my doctor is confused... (I'm going to get a second opinion as soon as I can find a good doctor) Could I be battling with something more than celiac? Or could it just be an extreme sensitivity? I do eat out often, but usually only at Chipotle.. it used to be fine until now sometimes I react and other times I don't. I am so tired of not being able to live my life to its fullest and instead being in the bathroom all day, or in bed with intestinal cramping and feeling sick. I need your guys's help. What should I do? Have any of you dealt with somehting like this?

Maybe you should also get an updated colonoscopy - who knows - maybe that might show up why you are having these recent problems. It is not out of the realm of possibility to have celiac and another form of GI distress - you might want to check it out.

Hope you are feeling better soon. :)

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So, what are you eating? Lots of processed gluten free foods? If you are it might be an intolerance to one of the common ingredients in them, like soy, dairy, xanthan gum, corn, eggs, etc.

Also gluten free foods can have a small amount of gluten in them so if you eat a lot of them you can have a cumulative affect.

Sounds like a diet change may be in order.

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I have wondered if it could be a sensitivity to another ingredient in the foods... I know I have a dairy & citrus problem. What would be next for me to try to eliminate? Should I try to eliminate soy since that's in alot of foods I eat? I try to eat natural foods, veggies and fruits, but during the week I do eat alot of processed foods, I suppose. Maybe it could be the small ammounts of gluten in the gluten free foods adding up, too. How do you find out if a food that says "Gluten Free" on it is really gluten free? Hmm.. lots to consider!!

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So, what are you eating? Lots of processed gluten free foods? If you are it might be an intolerance to one of the common ingredients in them, like soy, dairy, xanthan gum, corn, eggs, etc.

Also gluten free foods can have a small amount of gluten in them so if you eat a lot of them you can have a cumulative affect.

Sounds like a diet change may be in order.

I agree with GFinDC , Maybe take a second look at what your eating.Consider that you may have become intolerant to nightshades,soy ect ..

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Yes, soy is a big co-intolerance for celiacs. And it is in so many processed gluten free foods. That was the first one I had to eliminate.

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I am another who had to get rid of soy.

Get rid of soy and see how you feel.

Also minimize "gluten free" foods.

It helped me feel better.

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Hi. You are still really a newbie at this gluten issue. I am 10 years down the road and still have the same questions you do occasionally. There is a group on here for "super sensitive Celiacs" that might help you.

I, too, was starting to react this past year. After speaking with a super sensitive man it occurred to me that the gluten free food I was eating was not clear enough for me. I stopped eating all gluten free food and within 3 days my pains went away. Now I have been adding them back only one at a time. I test the same food for 3 or 4 days in a row. One brand, which I love the taste of, on the third day I started to get pain.

I have found a brand that is ok.... an organic corn flake product. The rest start pain.

I was already pretty tired of not being able to find organic gluten free food, so this has moved me in a better direction of eating organic brown rice and root vegetables instead of "white" gluten free non-organic bread and pasta.

I have had allergy blood tests and stay off of those foods. Even if I eat a little of any of them I don't get gluten symptoms.

I found a website about Dr. Edith Parcells and have been following her eating suggestions. She lived healthfully until she died at 106!

I have found it helpful to get to what I call a "zero" point... I go on a juice fast for a few days. My pain (if I am having it) goes away, then I can start over and add foods one at a time and see what bothers me.

I also take acidophilus every night and I take mangosteen juice with breakfast and lunch.

Hope this helps you.

Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be.

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Hi. You are still really a newbie at this gluten issue. I am 10 years down the road and still have the same questions you do occasionally. There is a group on here for "super sensitive Celiacs" that might help you.

I, too, was starting to react this past year. After speaking with a super sensitive man it occurred to me that the gluten free food I was eating was not clear enough for me. I stopped eating all gluten free food and within 3 days my pains went away. Now I have been adding them back only one at a time. I test the same food for 3 or 4 days in a row. One brand, which I love the taste of, on the third day I started to get pain.

I have found a brand that is ok.... an organic corn flake product. The rest start pain.

I was already pretty tired of not being able to find organic gluten free food, so this has moved me in a better direction of eating organic brown rice and root vegetables instead of "white" gluten free non-organic bread and pasta.

I have had allergy blood tests and stay off of those foods. Even if I eat a little of any of them I don't get gluten symptoms.

I found a website about Dr. Edith Parcells and have been following her eating suggestions. She lived healthfully until she died at 106!

I have found it helpful to get to what I call a "zero" point... I go on a juice fast for a few days. My pain (if I am having it) goes away, then I can start over and add foods one at a time and see what bothers me.

I also take acidophilus every night and I take mangosteen juice with breakfast and lunch.

Hope this helps you.

Great information from all of you.. It's so overwhelming, having just gotton rid of all gluten, to now take on re-cleansing my diet of other possible irritants.

I will definetly look up Dr. Edith Parcells and that diet. Seems like for me and my on the go lifestyle, I often buy the "Gluten Free" brand foods to use as snacks.. I think I got to carried away with the wide range of not-so-gluten free products and I will try to eliminate those. What are good ways to replace them? Is buying "Gluten Free Flours" ok? Maybe I can bake my own bars, and snacks for on the go. And also have a chat with my family to step it up and lessen the risks of cc.

I really appreciate all the help so far!! Please, any advice anyone has to offer, I'm all ears. I just want to feel better!

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I am sensitive to very low amounts of gluten. So is my son. We tried for a year to share a house with gluten eaters. Finally they had to go gluten free at home because my son and I kept getting sick. No matter what precautions we took, we got sick. We also had to stop eating at restaurants. We got sensitive to lower levels as time went on. Food that formerly was O.K. started bothering us. We don't eat processed grains at all. I buy grains whole and sort and wash before eating.

If I were you I would go on a whole foods grain free diet. Eat only meats and produce and see if you improve. Than you can start adding foods one a week to see what bothers you. Keep a food diary. Good luck.

I saw a talk by Dr. Peter Green in which he talked about endoscopies. He said that they had done a study in which they looked at the number of biopsies taken vs whether or not a positive biopsy was found. It went up until they got to 8, I think it was. The average number usually taken was 2. In other words, many biopsies are negative because not enough samples are taken, not because the persons intestine is good. The intestine is really long. If the whole thing isn't damaged, and yours shouldn't be if you are mainly gluten free, then it is easy to miss the damaged part when taking a biopsy.

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I saw a talk by Dr. Peter Green in which he talked about endoscopies. He said that they had done a study in which they looked at the number of biopsies taken vs whether or not a positive biopsy was found. It went up until they got to 8, I think it was. The average number usually taken was 2. In other words, many biopsies are negative because not enough samples are taken, not because the persons intestine is good. The intestine is really long. If the whole thing isn't damaged, and yours shouldn't be if you are mainly gluten free, then it is easy to miss the damaged part when taking a biopsy.

That is good to know! Really eases me to know that just because the endoscopy didn't show anything, doesn't mean there isn't celiac or that there isn't damage. My doctor hasn't exactly been helpful during this process, so, It wouldn't suprise me if there is damage and it just wasn't caught.

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