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user853

What Should I Cut Out Before Egd?

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Long story short, I have the EGD in 2 weeks after getting a positive antibody blood test, being gluten-free for 4 months and being SO SICK (i.e. worse than while eating gluten), and going back to gluten (YAY! Feel better). My celiac "symptoms" (which are not gastrointestinal) have never gone away.

Anyway, I have read that some food allergies (soy and dairy) will mimic celiac in the EGD biopsy. Is this true? I am actually starting to suspect that I do indeed have a soy allergy. I do not want to be diagnosed with celiac when I really just have a soy allergy. I don't have time to do allergy testing before EGD because the EGD place book out for months in advance and I want this resolved sooner than later.

So, is there anything else I should avoid - besides dairy and soy - that could muck up this biopsy?

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I'm a bit confused with regard to the timing of your testing. When did you get positive antibody test - before or after gluten-free for 4 months? Was it tTG IgA? If is was a positive tTG IgA - that is Celiac - not Dairy/Soy intolerance or allergy. As for best possible endoscopic results with regard to Celaic Disease - if you've been gluten-free for 4 months, it will likely effect the endoscopic biopsy results - much lower chance of detecting active celiac.

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Long story short, I have the EGD in 2 weeks after getting a positive antibody blood test, being gluten-free for 4 months and being SO SICK (i.e. worse than while eating gluten), and going back to gluten (YAY! Feel better). My celiac "symptoms" (which are not gastrointestinal) have never gone away.

Anyway, I have read that some food allergies (soy and dairy) will mimic celiac in the EGD biopsy. Is this true? I am actually starting to suspect that I do indeed have a soy allergy. I do not want to be diagnosed with celiac when I really just have a soy allergy. I don't have time to do allergy testing before EGD because the EGD place book out for months in advance and I want this resolved sooner than later.

So, is there anything else I should avoid - besides dairy and soy - that could muck up this biopsy?

I guess I'm a bit confused here? You tested positive to Celiac blood tests? Then you must be gluten-free to feel healthy.

If you have a damaged gut from gluten, it can make you more sensitive to soy and dairy..and other things, but generally, the gluten(zonulin) opens up "cracks" in the intestine that lets the others enter your blood stream and make you develope sensitivities to them which can be stronger than gluten reactions for some of us. Gluten effects can help mask the effects of some other intolerances, which is why some intolerances don't seem to show up until someone goes gluten-free.

You can get allergy tests for any of these and they can come back negative, but you are still intolerant of them. There aren't any good intolerance tests..at least that's what my allergist says.

The best way to help sort this out is to keep a food log. Write down everything you eat..and any reactions you get. Many food reactions are delayed, so this helps you put the puzzle together. Eating a whole foods diet like fruits, veggies, meats, eggs, nuts will be easiest on your digestive system and will make it easier to avoid the most common food intolerances. Most processed foods have dairy, soy, or gluten, or a combo of all of them, so it makes it harder to figure out what you're reacting to.

I'm assuming the endoscope is being done to look for villi damage and to see the state of your digestive system? If you had positive blood tests, you should be gluten-free. Then, you can omit soy and/or dairy to see if you feel better off them? Trial only one at a time and see if you react.

It might also be good to ask for a small intestine bacterial overgrowth (SIBO) Sometimes a sample can be taken via endoscope, but it's more common to get a hydrogen breath test for it. SIBO can cause one to start reactiing to additional foods besides gluten, so it's good to ask about it.

I hope you can get some answers that help you feel better so you can get on with the things you want to do! :D

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you should not limit anything before the endoscopy with biopsy. This is your chance to see what damage is happening. You should even being eating gluten to fully diagnose Celiac.

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Sorry, I guess I should have been more descriptive..

First, I have been eating a whole foods plant based diet for over 3 years. No meat, no processed foods (except pasta), and no bread or bakery products. Limited dairy (less than 1 cup milk per day, cheese a few times a week), limited whole soy products (2 times a week). My only "gluten" intake was pasta, non-gluten-free oatmeal, soy sauce, and beer.

After having weird (NOT gastrointestinal) symptoms for over a year (but not every day), and a bagillion blood tests, I was dx by my primary care physician with celiac based on "antibody tests". I did not see the results so I don't know what tests. That was at the end of February. I know it is not my thyroid, not a vitamin deficiency (in fact, my vitamin levels are excellent), and not a protein deficiency.

I was strict gluten-free from them late Feb until July 1. During that time, I continued to have my weird symptoms PLUS major gastrointestinal distress (which I never had before). I also gained 7 lbs! Which is crazy since I pretty much ate my same diet but cut out beer and pasta.

Upon discussions with 2 other medical professionals (my endocrinologist and my oncologist), I have been encouraged to go back on gluten and get the EGD with biopsy to confirm celiac. Both those doctors said that while they were not qualified to diagnose celiac, they felt that my primary care physician should have referred me to a gastroenterologist since my symptoms are not classic celiac. In fact, my oncologist (who I trust completely) suggested that I should get a new primary care physician because he was not comfortable with the way she has treated this issue or her follow up (there is a bit more to it than I indicated, but this has now been going on for almost 2 years).

And, since I am back to eating gluten, all of the negative effects I has when gluten free have disappeared.

My CURRENT concern is that I am going to mess up the EGD biopsy by eating something that mimics celiac.

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Some other disorders can mimic Celiac. Can even have gluten as a "trigger" like Celiac. Are even more likely for you to have both disorders. i.e. Eosinophilic Esophagitus.

Do not change your diet before the endoscopy with biopsy.

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HI,

Your digestion should not have changed when you went gluten-free, f you don't have an issue with gluten that is. People with no gluten reactions don't have any change when they stop eating gluten, it just doesn't matter or affect them. You had digestive symptoms on removing gluten, which is pretty typical of someone with celiac or NCGI when they stop eating gluten. There are several reasons for that, but it happens. People's bodies need time to adjust to the gluten-free diet and also to heal. And during that healing process things can get pretty dicey. It's not like you are healing a scraped knee. One site suggested the surface area of the small intestine is about the same as a tennis court. That's a lot of damaged, irritated tissue area to heal.

You said you have nuero issues that are weird? People with celiac sometimes get gluten ataxia, and they also sometimes have nueropathy. Gluten can affect the brain in several ways, none of them good. Gluten can also act like an opiate in the brain and can cause withdrawal symptoms in some people. People with gluten ataxia sometimes have no or fewer digestive issues also.

There is gluten-free beer on the market, and gluten-free versions of many foods are available. IT is not all that hard to live gluten-free anymore. It just takes a little determination.

Depression, Psychizophrenia, insomnia, bi-polar disorder, and anxiety are also linked to gluten.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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I appreciate all of your replies. I still feel unsure about my initial question.

Your digestion should not have changed when you went gluten-free, f you don't have an issue with gluten that is. People with no gluten reactions don't have any change when they stop eating gluten, it just doesn't matter or affect them. You had digestive symptoms on removing gluten, which is pretty typical of someone with celiac or NCGI when they stop eating gluten. There are several reasons for that, but it happens.

I never really though of it this way. The fact that my symptoms (neuropahty) never went away, and somewhat intensified after a few month of being gluten free, I was assuming that it was not celiac. Now I am kind of pissed that it may be gluten + something else. Crap!

I appreciate the info and links (which I had already read). I NEVER cheated when I was gluten free. But, let me tell you, the setiment that gluten-free is "not that hard" doesn't sit will with me. Sorry. I am fine at home when I can prepare my own meals! Easy peasy and yummy! But "eat at home and prepare your own meals" is largely unsustainable in my life. Add the fact that I cannot eat meat and am mostly vegan. Try explaining that to your farm rasied mother-in-law, the chic who orders the food for office lunches, or the waiters in foreign countries (yes, I know about the cards, but it is still difficult). I was out of the country when I got my results, and thankfully waited to get home before starting gluten-free. But, I looked at the menus. I would not have made it. I know the "bring your own food", "shop at your destination", etc. Largely impossible when I travel (for work) with others, rarely have a car, have working lunches, and am required to go to dinners with the "team". In the 4 months I was gluten free I had 12 work lunches where food was brought in. Only 2 of those were in the location I live and I was able to bring my own food. The others were a mix of a "vegetarian" sandwich provided for me or everything with gluten. I have even asked for special foods and often just get a garden salad, which is pretty much just crap. SOrry.. my frustration is showing. I am just trying to say, I am not willing to eat gluten free for the rest of my life on a "maybe" or "it is possible" that I have celiac.

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I am a person with the classic neurological symptoms of celiac, which mimicked MS, plus the brain damage visible on a scan, plus bone loss at a young age, plus other auto immune problems as a result, yet I had no formal diagnosis.

Now, assuming I had it all over to do again, and assuming that this time I would actually throw a positive blood test <_< and then somebody would be interested in the internal biopsy even if I were not skinny nor having a lot of overt lower gut symptoms, :blink: instead of what I went through just to find a primary care physician who doesn't think I'm a nut case for avoiding gluten, if I really wanted to screw up my biopsy, I'd go gluten free for several months before the test.

But since I would rather have somewhat of a life, than to be deathly ill and in a wheelchair, but able to "eat socially," just to supposedly fit into a crowd, it's easier to just avoid gluten and make other accommodations in my lifestyle. It took years to stop having the most obvious neuro symptoms, but, if I eat something wrong, it flares up within hours as a balance problem compounded by my eyes not wanting to track together.... this is a sign of antibodies going after and attacking my brain and nerves.

I have not met, in person, a physician who understands the neurological form of the disease except that I have described my recovery, in detail, to my PCP, and I think he somewhat gets it under the category of "this patient has special food needs and I agree with this." I am sure I could find a new gastro doc in a heartbeat that would tell me I didn't have it, but why waste money and aggravate myself further - the highly recommended neurologist from hell

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I appreciate all of your replies. I still feel unsure about my initial question.

I never really though of it this way. The fact that my symptoms (neuropahty) never went away, and somewhat intensified after a few month of being gluten free, I was assuming that it was not celiac. Now I am kind of pissed that it may be gluten + something else. Crap!

I appreciate the info and links (which I had already read). I NEVER cheated when I was gluten free. But, let me tell you, the setiment that gluten-free is "not that hard" doesn't sit will with me. Sorry. I am fine at home when I can prepare my own meals! Easy peasy and yummy! But "eat at home and prepare your own meals" is largely unsustainable in my life. Add the fact that I cannot eat meat and am mostly vegan. Try explaining that to your farm rasied mother-in-law, the chic who orders the food for office lunches, or the waiters in foreign countries (yes, I know about the cards, but it is still difficult). I was out of the country when I got my results, and thankfully waited to get home before starting gluten-free. But, I looked at the menus. I would not have made it. I know the "bring your own food", "shop at your destination", etc. Largely impossible when I travel (for work) with others, rarely have a car, have working lunches, and am required to go to dinners with the "team". In the 4 months I was gluten free I had 12 work lunches where food was brought in. Only 2 of those were in the location I live and I was able to bring my own food. The others were a mix of a "vegetarian" sandwich provided for me or everything with gluten. I have even asked for special foods and often just get a garden salad, which is pretty much just crap. SOrry.. my frustration is showing. I am just trying to say, I am not willing to eat gluten free for the rest of my life on a "maybe" or "it is possible" that I have celiac.

You need to get copiesof your antibody tests and see what you were + on. Take same test results to any other doctors.

You can test + on one Celiac test from having other AI diseases.

Also, you need to be on gluten for apx 3 months for an accurate Celiac biopsy.

If you are concerned about soy and milk go off them for the same 3 months.

Sometimes it takes a lot of elimination diet attempts and luck to figure it out. Keep a food diary including when and where you eat. I went from no gluten reaction that I could id to flu symptoms with 2 hours to a 24 hour delay and having stomach pain/cramping and reflux for 2 weeks. Those changes happened over 10 months.

And sometimes a GI symptom is temporary while you heal (I guess that's what we're doing) and them disappears overnight. The first year of gluten-free (and I'd assume any F-diet) will be like that.

And yes, of you were getting cc'd or glutened while being gluten-free it could cause you symptoms you've never had before. Sucks.

As far as eating out goes - you find your comfort zone and learn to take food with you and sometimes eat before or after you're out with others. You learn what restaurants can provide safe food, when to risk it, etc. And you learn what works for you. Grocery stores are your fast food - on the road, or around town.

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I've read that soy intolerance can cause similar biopsy results as mild celiac - March 1a, but not the full celiac damage (flattened villi, etc.).

I know your tests showed no deficiencies, but quite often that is just a trick of the body taking vitamins and minerals from tissues to keep the blood levels where it need them to be. This way you get deficiency symptoms first while blood levels will only start to drop later on. Vegan diet lacks B12, which can cause your neuro symptoms. Low magnesium can also cause neuro symptoms and most food is low on it nowaday.

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I appreciate all of your replies. I still feel unsure about my initial question.

I never really thought of it this way. The fact that my symptoms (neuropahty) never went away, and somewhat intensified after a few month of being gluten free, I was assuming that it was not celiac. Now I am kind of pissed that it may be gluten + something else. Crap!

I appreciate the info and links (which I had already read). I NEVER cheated when I was gluten free. But, let me tell you, the sentiment that gluten-free is "not that hard" doesn't sit will with me. Sorry. I am fine at home when I can prepare my own meals! Easy peasy and yummy! But "eat at home and prepare your own meals" is largely unsustainable in my life. Add the fact that I cannot eat meat and am mostly vegan. Try explaining that to your farm raised mother-in-law, the chic who orders the food for office lunches, or the waiters in foreign countries (yes, I know about the cards, but it is still difficult). I was out of the country when I got my results, and thankfully waited to get home before starting gluten-free. But, I looked at the menus. I would not have made it. I know the "bring your own food", "shop at your destination", etc. Largely impossible when I travel (for work) with others, rarely have a car, have working lunches, and am required to go to dinners with the "team". In the 4 months I was gluten free I had 12 work lunches where food was brought in. Only 2 of those were in the location I live and I was able to bring my own food. The others were a mix of a "vegetarian" sandwich provided for me or everything with gluten. I have even asked for special foods and often just get a garden salad, which is pretty much just crap. Sorry.. my frustration is showing. I am just trying to say, I am not willing to eat gluten free for the rest of my life on a "maybe" or "it is possible" that I have celiac.

Hi U853,

I hear your frustration. You are right, starting the gluten-free diet is not easy, it is a steep learning curve for most people, and it takes a while to get used to it. But there is no real choice if you have celiac.

Unfortunately the testing for celiac disease is not the same as a math test, where the answer is either right or wrong (mine were usually wrong). With celiac there are a lot of probablies or maybes in the testing. That's just the way it is right now. The blood antibodies are almost always correct when they are positive, but when they show negative they are sometimes wrong. False negatives are a real problem.

And there is the possibility of more than one condition going on also, as you said. But if you do have an issue with gluten, then the best way to help your body heal is to stay away from it.

I wasn't suggesting that you cheated on the diet by posting that thread. That is just for general info for new people so they can learn about the disease. Eating out in restrants can be a real problem for us though, and a garden salad is a great option when you aren't sure. A big garden salad or 2 is a nice meal. But bringing things like fruit or snacks with you can help fill the void too.

I felt a little odd at first when bringing my own food to dinners or just not eating, but it is no big deal really. People may ask you why you aren't eating and you can just say because I don't want to dag nab it! It's your body after all and you have a right to chose what you put in it.

I am curious though, why can't you eat meat? Is it an ethical issue or something physical? The vegan diet is often loaded with soy, which is a bad thing for some celiacs. Actually soy is bad for most living things IMHO. You can do a little searching on soy and health issues and see what I mean. Dr. Mercola's site has a nice writeup on it.

Because the testing for celiac is not perfect, it is a good idea to try the gluten-free diet for 3 to 6 months. With nuero issues the healing may take longer though, as nerves heal slowly at best, even in healthy people. If you do have another condition, eating gluten-free won't hurt it. People with celiac often enough do have other autoimmune diseases, especially when they are not diagnosed for a long time and continue to eat gluten. The continuing long term damage can cause other autoimmune diseases to pop up, and in rare cases cancer.

Have you had a gene test to see if you carry either of the 2 common genes? The gene testing can't diagnose celiac, but it can tell you if you are a possible celiac. About 30% of the USA population has one of the genes, but not all of them have celiac. Also since it is genetic, your near blood relatives should be tested also.

I think you owe it to yourself to try and feel better. Right now it sounds to me like avoiding gluten is a good thing for your body. At least for 6 months or so to see if it helps. gluten-free is the best medicine you can get if it is celiac, and it is free to do, no doctors needed. It's something to think about anyway. I hope things work out well for you.

I forgot to mention, there is also NCGI (non-celiac gluten intolerance) which there are no tests for at the present time. But researchers have determined it does exist.

Edited by GFinDC

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Thanks Everyone for your thoughts.

The frustrating thing is going from feeling fine on my regular diet for years except random tingling in my body at night to then cutting out gluten (aka a good thing) and being completely miserable and sick. And the random tingling still being around. And, I do mean RANDOM. Like, it has disappeared for months at a time. Sometimes it is every night for months. Sometimes once a week. Sometimes twice a week. Food diaries for months reveals no obvious trigger except "maybe" gluten (i.e. there were days and weeks where I ate gluten with no symptoms, but when I did have symptoms, I almost always had gluten). Which is why I went down the road for testing. My PCP didn't even want to test me.

I am an engineer and I admit that thing in the "grey area" don't sit well with me. I get it that it is not that simple, but my brain hasn't wrapped itself around the issue yet.

The mostly vegan diet... To make a long story short, I do not eat meat or fish and consume very little dairy not for the traditional "vegan lifestyle" reasons. I say "vegan" because people understand that means no meat, fish, or dairy. I don't eat meat because I think it is unhealthy, meat consumption is extremely bad for the environment, the meat and fishing industry are extremely hazardous work environments and I don't like that people die or have lifelong disabilities so I can have a steak or crab, and I am also on a strict low fat plant based diet to reduce my risk of cancer recurrence (which, is the biggest issue here).

I don't agree that "all soy is really unhealthy". Processed soy, the soy that most Americans know, is horrible horrible horrible. I don't eat any of those fake meat soy products. But, a little whole soy products (tofu and tempeh) 2x a week is actually pretty good for you.

Thanks again for your thoughts. I will be interested to hear what the gastroenterologist says when I see him. I think that I will be sent to the neurologist next, which I am dreading...

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Thanks Everyone for your thoughts.

The frustrating thing is going from feeling fine on my regular diet for years except random tingling in my body at night to then cutting out gluten (aka a good thing) and being completely miserable and sick. And the random tingling still being around. And, I do mean RANDOM. Like, it has disappeared for months at a time. Sometimes it is every night for months. Sometimes once a week. Sometimes twice a week. Food diaries for months reveals no obvious trigger except "maybe" gluten (i.e. there were days and weeks where I ate gluten with no symptoms, but when I did have symptoms, I almost always had gluten). Which is why I went down the road for testing. My PCP didn't even want to test me.

I am an engineer and I admit that thing in the "grey area" don't sit well with me. I get it that it is not that simple, but my brain hasn't wrapped itself around the issue yet.

The mostly vegan diet... To make a long story short, I do not eat meat or fish and consume very little dairy not for the traditional "vegan lifestyle" reasons. I say "vegan" because people understand that means no meat, fish, or dairy. I don't eat meat because I think it is unhealthy, meat consumption is extremely bad for the environment, the meat and fishing industry are extremely hazardous work environments and I don't like that people die or have lifelong disabilities so I can have a steak or crab, and I am also on a strict low fat plant based diet to reduce my risk of cancer recurrence (which, is the biggest issue here).

I don't agree that "all soy is really unhealthy". Processed soy, the soy that most Americans know, is horrible horrible horrible. I don't eat any of those fake meat soy products. But, a little whole soy products (tofu and tempeh) 2x a week is actually pretty good for you.

Thanks again for your thoughts. I will be interested to hear what the gastroenterologist says when I see him. I think that I will be sent to the neurologist next, which I am dreading...

No one, in here, can determine if you're gluten intolerant or not... We can give our advice as best we can. There is absolutely nothing wrong with your questions and concerns. Questioning is quite healthy and, truth is, if you took what we say as the gospel without questioning...well...that wouldn't say much for you, IMO... ;)

With that said, I would like to bring up a few things.

Those of us, here, who have lived the hell (some still are) believe that gluten is a poison... It's really that simple.

From what I've read from you...in this post and others...you have either willfully consumed gluten and been exposed to cross contamination. Have I read this, correctly? If you have consumed gluten, willfully or not, you have not been gluten free. And, if you are gluten intolerant that just isn't good enough to provide you with a clear, objective view of "gluten free". You, more than likely, would not see any benefits. And...you very easily could "worsen" because you would be getting sicker.

I, also, wonder if you truly understand the difference between gluten intolerance and an "allergic" reaction. Two VERY DIFFERENT THINGS.

Gluten intolerance elicits autoimmune responses in the body of the gluten intolerant individual. Autoimmune responses take a very long time to resolve, in most cases...if ever. But, there is zero chance they will resolve, get better or get no worse IF you are not gluten free and you are gluten intolerant.

I understand wanting to "know"...that's smart. Find your answers...everyone of us understands that.

I wish you well...

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This is why I hate Michael Pollan and the NYTimes low-fat fear of mortality lifestyle pages..... your cancer treatment could have triggered your new food intolerances, celiac is a known risk factor for cancer(s), I've already outlived one parent by age by 12 years, and for the love of God, please start ingesting some quantities of 'good fats' into your diet, so your brain retains optimal function.

Otherwise, I'm outta here.

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Hi U853

Thanks for taking time to explain the no meat thing. Some people do have physical problems with eating meat so I was wondering if that might be your case which would in turn help us figure out a way to help you. There is a tick in the southern USA that can make people intolerant to red meat, Actually there is no help for that I guess but at least knowing about it is something.

I am adding a link to the Eat to defeat Cancer web site. It might be helpful to you. Some fella did a bit of research on foods we eat and found that some of them do a better job of controlling cancer development than the high priced meds we are sold. Anyway, they started the site to help people learn about good foods to eat for preventing cancer. Anti-angiogenesis is the phrase they used I think. Some foods help stop the development of new blood vessels that feed tumors. That's the anti-angiopgensis part.

Eat to Defeat cancer org

Actually Dr. Mercola agrees with you that some soy is ok. Fermented soy is supposed to be pretty alright. But unfermented soy is not. Tempeh is fermented, tofu is not. They say the fermenting process reduces the toxicity of the soy. That's not good enough for me to eat it on a regular basis personally. I eat very little soy, but I do have a reaction to it and it made me very sick for a while. Other people with celiac are mixed, some have reactions to soy and some don't. Our bodies don't all react the same way.

This "Miracle Health Food" Has Been Linked to Brain Damage and Breast Cancer

There is something called leaky gut which involves pieces of protein getting through the intestinal barrier into the blood stream. That can cause a person to develop reactions to just about any food really. There is a lot of hype about leaky gut and cures for it on the web, but most of the real knowledge about it came from research done by Dr. Alessio Fasno.at the University of Maryland. So if you want to read up on it search for articles by him or on the term zonulin.

We all share your frustration with the current testing for celiac disease. It would be nice to have a clear cut answer that doesn't require eating gluten for months. And then the testing is still not 100% reliable. Quite a few people on this forum went many years without a celiac diagnosis by their doctors, or they were given wrong diagnosis and put on expensive drugs to treat the wrong thing. While their celiac continued to create damage in their bodies. Not fun.

And we have been talking about NCGI on this forum for years also. Researcher are just now starting to prove that it exists. But there is very little research on it right now, and the best source for info is word of mouth from sufferers. There isn't much money in celiac disease since there are no treatments except the diet right now. So funding for research comes from celiac support groups instead of medical companies.

One other thing you might want to check into is Enterolabs testing. They are a non-profit that does stool testing for immune reactions. Their results are not accepted by some doctors though.

And the other thing is an elimination diet, which costs no money and can give great results. But it does take some time and patience. There are lots of threads on elimination diets on the forum.

I hope your get your answers and feel better soon.

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THANKS EVERYONE for your replies. Got my results back from the endoscopy. It says "celiac" . BLAH! My Gi doc noted that the damage was very minimal/minor. So, hopefully we caught this early and I will be able to repair the damage quickly.

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Hey, well I guess at least you know now.

I am at the start of the journey too, biopsy 3 weeks time.

I hope like me you find lots of support on these boards (I have a scientific background and should know there is mostly grey, but it doesn't stop it all driving me nuts)

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Glad you got your results and that you are now certain that you must remove gluten. Even if you once again have periods of time that some symptoms get worse - they will improve/disappear with time gluten free. And you are right - it is good news that the damage was minimal/minor and will hopefully speed healing time.

Thanks for sharing your results - very speedy healing to you :)

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unless your B12 was over 500, and your methylmalonic acid normal, and you are under forty.......you might be B12 deficient, especially being a vegan. good luck

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Hi U853,

That's great, now you know what the problem is and how to fix it! Well, at least you have an idea how to fix it. Minimal damage is good, but it is still celiac disease and needs to be treated as such. It's good the diagnosed it early6 before y6ou developed additional problems. I know you are traveling a lot but maybe you can find hotel rooms with a small kitchen where you can cook your own meals. There are celiac support groups in some areas that can provide names of restraunts with gluten-free options. And you can search the web for gluten-free places to eat in any area. Sticking with whole foods and avoiding processed foods its a great way to get started on gluten-free.

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