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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Guest DanceswithWolves

As some of my fellow posters remember, I still haven't a clue of what's going on with my health.

My Gastrologist told me that I have IBS and Gilbert's syndrome. Yeah...ok....

Here's what I can't figure out:

My weight has started to drop again. The highest I got to was 126lbs. Now I'm down to 124 again.

For the last few days I have been eating hot pockets. My gastrologist told me to eat whatever I want. More donuts, pizza, anything and not too worry so much. I've been doing this for about a month now.

In the morning I wake up with this horrible hungry feeling like I haven't eaten in days.

I have been even eating chicken pattys with bread because I can't take eating just 1 bowl of cereal. I need something with more substance and protein.

Anyway, this nauseous feeling stays with me even after I eat. I can't say it's the Prozac because I had this before I was on it. So that rules that out. Plus I have the most violent sounding short burps! My gastro doc didn't want to do an endoscopy. He said it wasn't necessary. Sheesh! :(

I just don't understand it.

My father said he had two hot dogs for lunch this afternoon and he was bloated all day. I'm really thinking our whole family is like this.

Anyway...back to me...I have had the worst neck and shoulder fatigue for the last couple days. Today at work, I was in this solemn mood...I wasn't sure if I was depressed or just foggy. When I got home...I did a number 2 and I felt a somewhat better....Does anyone else feel this way? I'm starting to think that the gluten I'm ingesting is actually making me more hungry, thus the weird stomach movement and sounds I get. Maybe I just have a gluten intolerance? Can Gluten intolerance lead to Celiac?

Arrrrrr...I'm so tired of all this. The doctors all think I'm nuts. I sit there and do all the talking, then they sign off on my paperwork. I have an appt. next week...and I haven't made any progress!

I sware they are all in on it. We are all getting sicker because that's what they want! We are return customers shelling out cash for meds that are not fixing the problem. Prevacid, Prilosec, Zelnorm, Pepcid....all garbage! These pills are making us worse and the preservatives that is being dumped in our foods every day is making us addicted and sick at the same time! When will the rest of America wake up???!!!!!!!!! :angry:

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I'm sorry you're having such a hard time. I agree the the doctors are just not handling many of these cases right. I am always interested in people with the symptom of hunger with a gluten intolerance because you don't hear of that all that often and that was one of my little girl's main symptoms. She was absolutely starving all day long. She was bloated and had stomach pain. Although she was eating HUGE portions, she was not gaiining weight and was/is still loosing her hair due to malnutrition. She also suffered from what I would call "depression" and was so irritable and moody all the time. Her drs. actually sent her to a psychologist who recommended a psychiatrist for her!!! I guess the fact that everyone's symptoms are so varied causes this to be misdiagnosed to frequently. It didn't help that her blood tests were negative...

She did test postive to a gluten sensitivity through enterolab and has a double copy of the DQ-1 gene for gluten sensitivity. Her reactions to gluten were what I consider to be severe and I do believe that she would get worse if she kept eating gluten. I also think that she could eventually develop celiac in the future. The genetic research is in it's infancy in regard to gluten intolerance.

However, on a gluten free diet my daughter is a 100% different kid. Is there a reason you are not just doing the diet regardless of that your drs. say? If you're like me, you want a definite diagnosis, but I guess we don't all luck out that way. The most important thing is that you are feel better and are able to function in the way that you want to and deserve to. No one deserves to feel so miserable all the time and you don't need a dr. to give you the go ahead for the diet. That's what's so awesome about this. YOU are in control and can take charge of your health.

I hope that you are able to find the answers you're looking for. More than anything else, I hope you're able to feel better soon! I feel for you because I feel like many of your symptoms are much like Ella's. I too feel that the drs. thought we were nuts. Turns out they just didn't know a gluten sensitive child when they saw one!

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Hi DanceswithWolves,

I haven't seen many of your posts, so I am not familiar with your situation. Have you been tested for celiac disease and/or gluten sensitivity? Or did the doc not test and just give you a dx of IBS?

Anyway, there is a book you might be interested in called Dangerous Grains. They mention that if you are tested for celiac disease (only do so with a biopsy) and the test comes back neg., doesn't mean that you won't develop celiac disease (which is specifically, gluten induced intestinal damage). Gluten sensitive people with negative biopsies may develop the telling intestinal damage years later (while still having all the gluten sensitive/celiac disease symptoms and internal damage). This is why some believe that celiac disease should just be lumped under "gluten sensitivity" ...... Kind of interesting read.

Consider getting some blood work done - this will tell you if you are mounting an immune system response to gluten.

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If you're gluten intolerant, or a so-far-undiagnosable celiac, then yes, it would make perfect sense that eating lots of gluten would leave you hungry - the gluten damages the intestinal lining, preventing it from absorbing the calories and nutrients in the food you eat, so may put food in your mouth, but it doesn't make it to your body, which decides it's hungry because it's not getting any food.

I can't remember if you were STRICT about the gluten-free diet when you tried it, or how long you tried it. But, besides the diet, I would encourage you to remember that your doctors are professionals that YOU HIRED and whom YOU ARE PAYING. They are in YOUR SERVICE. Which means that you CAN tell them what you want done, or you can get another one.

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I would encourage you to remember that your doctors are professionals that YOU HIRED and whom YOU ARE PAYING. They are in YOUR SERVICE. Which means that you CAN tell them what you want done, or you can get another one.

Preach it Tiffany!

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My gastrologist told me to eat whatever I want. More donuts, pizza, anything and not too worry so much.

<{POST_SNAPBACK}>

That's about the dumbest thing a doctor could say to you. I've had doctors and other well-meaning folks say the same to me. "You're so skinny! Why don't you just EAT?" You can eat a truckload of donuts and still be starving your body. You know the old saying, "You are what you eat?" It should actually be "You are what you DIGEST." If you have a problem with wheat - or any other food you react to - you can eat it, but your body won't be able to digest and absorb nutrients from it... so you're hungry. I've often experienced that hungry feeling - I call it my "kicked in the stomach" feeling. I think there's a blood sugar component to it, too.

From what little I've read of your posts, it sounds like you don't want to give up the forbidden foods because you don't have a firm diagnosis yet. I understand how you feel, but you're going to continue to feel crappy until you identify what foods are bothering you and eliminate them from your diet, period.

I'd suggest cutting your diet back to a few foods you know are safe and don't cause you any reactions. Do this for a few days until your symptoms clear. Then try new foods one at a time. I've found it helpful to keep a journal of what I eat and how I feel during the day. That allows you to go back and look for trends you may not notice otherwise.

I've been through six different GIs and have found them all to be very unhelpful. If you don't feel like your doctor is meeting your needs, try someone else. They're all different and have different approaches. However, you may find - like I have - that you must rely on yourself. You must educate yourself and take responsibility for your own health.

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If you're gluten intolerant, or a so-far-undiagnosable celiac, then yes, it would make perfect sense that eating lots of gluten would leave you hungry - the gluten damages the intestinal lining, preventing it from absorbing the calories and nutrients in the food you eat, so may put food in your mouth, but it doesn't make it to your body, which decides it's hungry because it's not getting any food.

<{POST_SNAPBACK}>

I completely agree with what you said, Tiffany. Unfortunately it seems that drs. (at least the ones we were "fortunate" enough to see) could not wrap their minds around the possiblitly that hunger could be a sign of a gluten intolerance. They basically laughed me out of the office and told me that Ella needed to see a psychiatrist because she had OCD in regard to eating. Since she did vomit, she "obviously doesn't have celiac disease" is what we heard. I just want other people to know that this IS a sign or symptom and I wish there was something I could do to make sure that other little kids aren't misdianosed for as long as Ella was or sent to see psychiatrists when it's not warrented.

It's almost as though is a certain blood test doesn't say it's so then it isn't and they are unable to think outside the box. Blood tests don't tell everything....

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I think that you may be intolerant to gluten and/or something else like casein. You also could have celiac disease. You have a lot of the symptoms of celiac disease, the unexplained weight loss, insane hunger, depression, nausea, GI trouble, brain fog. When I have a gluten accident, I get really hungrey like you do, like I haven't eaten in days. I also get all those other symptoms that I mentioned.

If you live in the US, Tiffany is right, you pay those doctors and they don't seem to really be helping you out too much, so you could get new doctors and get a second opinion. If I were in your situation, I would maybe try and find a really good GI doctor that specializes in celiac disease.

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I've already decided that once I have exhausted all of my testing options, and/or the doctors' willingness to help me try and figure this out, I'm still going to go gluten-free. If I can't get a specific diagnosis, I'm basically going to go on a really strict and intense gluten-free diet.

I would suggest for you to do a trial of naturally gluten-free food - meat that hasn't been modified at all (not injected with flavor enhancers or broths like a lot of chicken has, etc), veggies and fruits until you start feeling better.

I'd also suggest that if you buy gluten-free items like bread, pasta, cookies, etc., to get them from a source that is also gluten free, like ordering them from a gluten-free store online. I remember reading a post on this forum from someone who went to her local grocery store to buy gluten-free flour. Not only was the gluten-free flour on a shelf below the regular flour, but one of the bags of regular flour had a hole or something in it and there was flour from that all over the bags of gluten-free flour. Yikes.

Make sure your kitchen doesn't have any potential sources of contamination, and your shampoo and other personal care items are gluten-free too.

It might be hard, but you would at least know that you weren't getting anything that might have gluten in it.

If you can do this long enough (I've heard here that it can take months for symptoms to go away), you should either be able to prove, to yourself at least, that gluten has been causing your problems. OR, if your symptoms don't improve, at least start looking at other possibilities like other food allergies or something.

If I end up not getting a diagnosis and having to figure this out on my own, I'm going to do all of the above. I'm even going to keep a set of utensils, cutting board, etc., in a box in the back of one of my cupboards so my husband won't get into it and potentially contaminate something. Because I'd hate to go through all the hassle of it to still have questions just because I found out six months later that my husband was making sandwiches on my gluten-free cutting board that he "forgot" he wasn't supposed to even touch.

I can't believe your doctor doesn't even want to do an endoscopy. That's horrible.

Nancy

Nancy

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Guest DanceswithWolves

Yep, he said an endoscope wasn't necessary. Instead all I got were questions regarding my state of mind and that I had "Gilbert's Syndrome" . I researched that one and it is a slight affliction that people can get causing yellowing of the skin, eyes and some intestinal problems. But that still doesn't explain my dry skin, brittle hair, ten-minute allergy attacks about 1 hour after I eat, and nervousness. I can't even write anymore.

The reason why I am eating anything is so that way, if I get tested for Celaic, it will come up. They only examined my stool looking for fat absorbtion, which he said was indeed happening.

I'd make this longer...but I have to eat again.....Thanks for all your replies! I love you guys!

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Sounds like it's time to fire your doctor. Most gastro docs love to do endoscopy. They'll scope you any way they can! If you and your insurance are paying for it, you should be able to get it if you want it and need it, and you sound like you need it.

I am not sure why doctors can be so test-phobic sometimes. I mean, if you have someone in front of you asking you if you can fill them up with drugs and then put a tube down their throat to poke around in their stomach after fasting for hours, they are obviously in a great amount discomfort and need the test!

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Have you talked to your insurance company and found out what the procedure is for changing doctors? I'm very lucky that the insurance we get through my husband's work is really good. If a doctor ever were to even look at me cross-eyed, I could change to a completely different doctor the next day if I wanted to. But even some of the more strict insurances will let you change doctors once a year, or get a second opinion, or something. There's usually SOME way to see someone else.

It sounds like your doctor isn't even doing his job. He hasn't even done enough testing to come to an informed decision. And I agree. There is something very, very wrong with a GI doc that doesn't want to do a scope.

Nancy

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Guest DanceswithWolves

Indeed. I thought he was a bit of a jerk. In fact, I just called my hospital where I had the tests done and I got hit with a bill over $300 on top of another $100 I already owe to the Gastro doctor.

I can see why Americans are frustrated with the medical care in this country. Apparently, my insurance only covered a small portion. No wonder people are putting their medical bills on their credit cards and then filing bankruptcy years later!

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Indeed. I thought he was a bit of a jerk. In fact, I just called my hospital where I had the tests done and I got hit with a bill over $300 on top of another $100 I already owe to the Gastro doctor.

I can see why Americans are frustrated with the medical care in this country. Apparently, my insurance only covered a small portion. No wonder people are putting their medical bills on their credit cards and then filing bankruptcy years later!

<{POST_SNAPBACK}>

I know you are still eating gluten for the time being. If I remember correctly you were going back for more tests??

If you still end up with no answers and are stuck with that IBS diagnosis you may want to consider Enterolab testing. I don't know if thats something you're interested in or if its affordable for you. I can tell you its $350 to find out everything you need to know. It will tell you if you're immune system is reacting negatively to gluten, if you are genetically predisposed for celiac disease or gluten sensitivity and if there is damage done as a result of gluten sensitivity. It may end up actually saving you money in the long run. It did for me anyways...no more useless doctor visits where I leave feeling like I just threw away more money. Now I'm back at work and actually able to earn a paycheck again.

Anyways...just thought I'd mention it. :)

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Guest DanceswithWolves
I know you are still eating gluten for the time being. If I remember correctly you were going back for more tests??

If you still end up with no answers and are stuck with that IBS diagnosis you may want to consider Enterolab testing. I don't know if thats something you're interested in or if its affordable for you. I can tell you its $350 to find out everything you need to know. It will tell you if you're immune system is reacting negatively to gluten, if you are genetically predisposed for celiac disease or gluten sensitivity and if there is damage done as a result of gluten sensitivity. It may end up actually saving you money in the long run. It did for me anyways...no more useless doctor visits where I leave feeling like I just threw away more money. Now I'm back at work and actually able to earn a paycheck again.

Anyways...just thought I'd mention it.  :)

<{POST_SNAPBACK}>

Thanks, Rachel...I wrote that down and I will ask about getting that test. I know I have to first get caught up with my current bills. Plus I am going to ask my regular doctor about seeing an allergist.

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I hate you're having such a hard time. I know it's frustrating when you feel that the medical community doesn't have a clue. I started with stomach problems when I was 12 or so and now I'm in my late 20's. I only found out that I have celiac disease about 2 months ago. :(

I know with all the medical bills things can get tight. The other day I figured out that we're actually saving a ton of money by not eating out. We're also eating healthier foods.

Health wise I'm still having a hard time right now. I tried to raid my cabinet for my acid reflux pills, but they we're out of date!! I'm so glad I read your post because they never really helped me but today my heartburn has been out of control!! :P

As darkangel mentioned a journal is very helpful. We did this with my dd diet and symptoms. We took the journal to all her specialist appt's and I think they were able to visualize how often the symptoms were occuring and how serious it was.

I hope you get to feeling better and find the answers you need. :)

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Hi, again, Dancer :-)

Reading more about you here, I want to add 2 things:

You need to learn more about Gilbert's syndrome and all of the food-related problems -

Here is the link I found about that:

http://www.gilbertssyndrome.org.uk/Tips%20...20Syndrome.html

Since it's genetic, has your immediate family been tested for that, also?

------------------------------------------------------------------------------------

If following those tips doesn't help you, I definitely think you should be tested for gluten and casein antibodies -

Investing in the Enterolab stool tests is something I would highly recommend in that case.

Best wishes,

Gina

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