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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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