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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.

Symptoms?
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29 posts in this topic

Hello All,

I have been lurking for a few days now, but since I am more confused than ever, I thought I would make that big leap.

I was looking for a comprehensive list of symptoms but I am reading that they are so vast depending on the individual. I hope none of you mind my adding my own story to this mix in the hopes that someone will say, "Hey, I did that!" This is a big jumble because I never paid attention to when anything happened.

I'll start with nerve damage in both of my feet. I've had surgery on one but not the other. I have no idea if this is in anyway related and as such, I feel silly bringing it up. After the surgery, the doctor stated that he didn't know how I was walking, other than building up a high pain tolerance, because I have almost no fat pads on my feet. I do know that my grandmother had the same problem so maybe this has nothing to do with it.

I don't know when this started - years back - sometimes when I stand up, I have to "wait it out." I feel like I am going to collapse. It is a strange feeling and I don't know how to describe it other than to say that I feel like I am going to collapse. Up until I had my daughter, I would refuse to sit down. It passes within a few minutes, but it is a dizzy, incredibly weak feeling. I also have severe joint pain during these episodes and also times without the feeling I am going to collapse.

About 10 years ago, I went to a doctor who said I was having "brain seizures" and I needed to relax. My jaw would lock and I would start trembling. People wouldn't notice unless they were talking to me. I would try to talk back - and actually thought I was pulling it off quite well - but then I was told that I was mixing up my words. For instance, I could put a sentence together but instead of saying "car," I would say something like "butterfly." As I would start coming out of it, I would have these intense cravings for Whole Milk and/or Liver. The doctor didn't even run any tests on me. He just said they were brain seizures and my body's way of telling me that if I didn't learn to relax, it would do it for me.

By the way, I am extemely anxious, perfectionist, and all of that. In other words, I stay stressed out.

Then I had to have my gall bladder removed. Three days after the surgery - and this is so embarrassing to say - I started the "chronic diarrhea" phase of my life. It has completely taken over my life. I had just started my final semester of my Bachelor's degree with one week into the semester when I had to have emergency surgery. I had just moved. In other words, I was stressed more than normal.

I am writing all of this because I have finally gotten the nerve to go to the gastro doctor. I didn't know where else to go. I have been dreading any type of exams, as well as the colonoscopy, but finally decided that my days have got to be planned around husband and daughter - and not the bathrooms along the route! The doctor tells me after a 10 minute talk, that he suspects I have either Crohn's or Ulcerative Colitis - both of which I researched to discover have been misdiagnoses of celiac disease. I only have one symptom - the major bathroom problem - for both of these conditions. But in looking at some of the lists for celiac disease, I have more than a couple.

I should also say that I am not losing weight. I have never been a tiny person, but after the birth of my daughter, I gained something like 60 pounds. I only gained 15 during pregnancy. The doctor said that it was just taking my hormones longer to catch up with the birth.

I guess at this point I am venting? I am just ready to move forward with my life. I put so much hope in going to this doctor thinking that he could "fix" me, and now he is suspecting me of conditions that I don't even two symptoms for. Can someone help me? I am supposed to go back to him in two weeks, at which point he will schedule a colonoscopy. I have already done the labwork so I will get the results then.

When I first found this site, I was going to just go gluten-free and see if that improved anything. Then I read here that I shouldn't do this until testing is completed. Could someone offer any sage advice? I would appreciate any suggestions. And I apologize for such a long post.

Thank you!

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well--i will try this again--there is a post monster lurking here today--ate my post 2 times now--anyways--you sound celiac to me--the diarrhea is a definite synptom--you sound like i used too--email me if you would like to talk---darlindeb25@aol.com -----deb

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You said you were not losing weight....not all celiacs get this symptom. Some get weight gain, and some can be a perfect weight and still have it.

Some celiacs don't get symptoms so that's another thing that makes it hard to diagnose.

It sounds like you are a candidate for it. Yes, doctors misdiagnose for things like Crohns and IBS all the time..so make sure they check you for celiac and that celiac is not overlooked if you have it.

And make sure he gives you a full celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Alot of doctors only do some of these tests which can lead to misdiagnosis...also a gene test would be good for you to have done. 98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene.

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Celiac is, of course, a possibility and you should be tested. But for the anxiety have you ever tried either a medication or learning relaxation techniques? I know some people object to the medications, but after experiencing a severe personal loss, Zoloft is the only reason I'm semi-functional right now.

richard

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I personally am not willing to ingest gluten for the test....I know it bothers me so I've been "self diagnosed." I hate the way I feel after having gluten so I don't think I need a formal diagnosis..that's just my opinion. I'm not sure if there is a reason to be diagnosed other than validation..amybe someone else can shed some light on that. I also, like you, pretty much plan my life around where's the nearest toilet and i hate it. I've found that when i'm gluten-free I don't have that problem nearly as much (if at all). I too gained very little weight with my last pregnancy, but afterwards gained about 25 pounds, very quickly. I went from a gestational diabetic diet (low carb ie very little if any gluten) to just eating "normally"..I had debilitating stomach aches for almost two years before I figued it out!

I hope my experiences have at least made you feel that you are not alone.

Best wishes!

Laurie

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Get the testing done while you are hopefully still on a gluten diet.

It can rule out the long term problems associated with chronic "D". A gluten free diet can be helpful for IBS. A clear cut diagnoses will give you a peace of mind (after time grieving for a previous life).

Testing was not a good experience for me. I went on a gluten free diet before testing. I am self diagnosed because of my daughter's diagnoses. Her genetic test was positive for DQ2 and DQ8.

Laura

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Thank you all so much for responding. I was going to say that none of you would know how much that meant to me, but then again, if someone stumbled across all of this as I have, then you would! I don't know proper ettiquette for these boards, so feel free to correct me. I am including questions and responses to the whole thread.

Kaiti, thank you for the list of tests to request from the doctor. I've only seen him once so far, so I am not really sure how he will take my request, but I will be assertive!

Laura, why was the testing not a good experience? Is it not just bloodwork? At this point, I am thinking that I will undergo almost anything. I have been grieving for my previous life for the past 7 years - the pre- chronic "D" era. I met and married my husband after all of this started so he is amazed when we talk about things I used to do in terms of being active. The first website I came across seemed like I could just do this on my own without going to the doctor, but then I started thinking about my daughter. If I do have celiac disease, I would like to know so that I could do something about my daughter? At this point, I don't know what. She doesn't have any symptoms - she's 4 - but neither did I. I just don't want her to end up like this.

Richard, I did try a prescription of Paxil to help with the anxiety, but discontinued its use after about 5 months. I finally decided that I wanted to treat the problem. My anxiety was a secondary symptom to the other problem. I have always been high strung, but not anxious about leaving the house.

And Deb, thanks for the additional support through email! I might take you up on that.

I thought of one more thing after my original post that I hadn't thought of before. I don't know if any of you are into alternative medicine but I had gone to a kinesiology specialist. I won't go into the process because I realize how much like quackery it sounds. This was a year ago. After the testing, she told me that my body was full of toxins as a result of a digestion problem. She is not a medical specialist so she didn't mention any condition in particular. The interesting thing, besides saying that about toxins and digestion, was that when she went to plan my diet, she said that I could not have anything with wheat, etc. because my body doesn't like it! And I didn't tell her any of my symptoms before doing this.

I am excited that I might finally have some answers. I keep thinking - how hard can changing my eating habits be, as opposed to what I am already going through? Then I realize how much processed food I eat! I am not even going to think about vacations and restaurants at this point.

Thank you all so much!

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Hi, I have been through some similar things...I also had problems that sent me to the neurologist, but it wasnt the same symptoms as you experienced..mine were more severe tingling, like my whole body was vibrating all over, and numbness, things like that...I also had to have emergency gallbladder surgery, and the diarrhea can caused from having the surgery, because you dont have a gallbladder anymore...My mother had diarrhea for a year afterwards, and everyone I know that has had the surgery has had problems with it. I also had problems with it, and still do off and on..I just had my surgery last September. I also am very stressed most the time, but I have changed my way of thinking, and prayed ALOT, and it has helped me. I hope you get some answers soon..but wanted to let you know that if the diarrhea didnt start until after you had the surgery, it could be because of the surgery...I would still check in to celiac disease though based on other things you have said. Good luck

Sabrina

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I don't know when this started - years back - sometimes when I stand up, I have to "wait it out."  I feel like I am going to collapse.  It is a strange feeling and I don't know how to describe it other than to say that I feel like I am going to collapse.  Up until I had my daughter, I would refuse to sit down.  It passes within a few minutes, but it is a dizzy, incredibly weak feeling.  I also have severe joint pain during these episodes and also times without the feeling I am going to collapse.

The dizzyness you are experiencing is something that I used to frequently experience when I would stand up. It is not a siezure, it is called vaso vagal (sp?) syndrome. It is an abnormal adrenaline response caused by your blood shifting when you stand up. It causes the heart to beat so hard it becomes inefficient and causes oxygen deprivation in the brain.

A siezure is very different. Siezures are basically electrical disruptions in the brain. They can happen anytime, anyplace. I had extensive test for siezures and it definitly was not the problem. Vaso vagal only happens in very specific instances like quickly standing up. Pain can also trigger a response like dropping something heavy on your toe. Since I have gone gluten-free I have not had any dizzy spells.

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Thank you, Ianm, for the information on vaso vagal! I must not have made myself clear on that being separate from what the doctor termed a brain seizure. It is still good to have another answer. So the vaso vagal is not related to celiac disease? I am just happy to be getting answers.

Thank you for your response!

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I don't know if it is directly related but I was so fatigued, brain fogged and generally unhealthy that it made me very susceptible to the vaso vagal.

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Before you undergo testing like a colonoscopy or endoscopy, do the simplest thing: get the blood work done. It is SO easy. Then, if you have a positive in the blood, it would make more sense. From what I've seen, symptoms of celiac disease are ALL over the board b/c of the many other related conditions it brings. So I don't think any symptoms are abnormal!

I'm not saying don't get a colonoscopy; if your dr. thinks you need one then by all means. But why not do the easier test first? You really have nothing to lose by getting the blood test.

It all depends on you and how you want to go about it.

I had the blood test say positive and went gluten-free b/c my dr. was on vacation for a month. I feel SO much better gluten-free I decided I don't care if I'm diagnosed or not. I am still going to get the endoscopy just to make sure my insides are OK but even it says negative for celiac disease I will still stay gluten-free.

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Thank you. That is my plan. On the 26th, I return to the doctor to get the results of the last bloodwork. When I go in, I am going to request the Celiac panel and take a list of what that entails to make sure he gets everything.

I am sure that he will want to do the colonoscopy after chronic "D" for seven years, and I don't have a problem with that. I just want to make sure that he does the celiac panel, too.

I am also planning on doing the genetic testing for myself and my daughter.

Thank you for your response!

Misty

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I'm a newbie, but some advice...be proactive. Ask for what you want, which is the tests, and don't back down if he brushes you off with a "you can't possibly have that response" I got that answer even after I brought up celiac disease only to finally demand the tests and get positives! Don't give up on it, even if you don't have it, knowing will be peace of mind to investigate other diseases and treatments.

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I think I am a bit confused about something. I have read some posts where some of you have said that you got positive blood test results, but wanted to get an endoscopy for a solid diagnosis. What else would make the celiac panel positive beside gluten intolerance/celiac? Would it be possible to have positive blood work, and not have any issues with gluten? Sorry if this is stupid but I just dont get it..

Sabrina

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Hi Mpost! Welcome to the board!

In regards to the chronic diarrhea, BOY! do I know what that is!!!

I have had permanent diarrhea for a decade now. I have been on the diagnosis roller coaster that so many celiacs have been on. In my early 20's, after a trip to the Carribean, is when my problems started. Abdominal pain, chronic diarrhea, trips to ER for attacks, etc. I was first diagnosed with celiac in my early 20's but after a year on the gluten-free diet without any results, the diagnosis was then changed to IBS, then Crohns, etc. etc. etc...... It wasn't until a few years ago the bloodtest confirmed it was indeed celiac, so back on the gluten-free I went. After 2 years of AGAIN no results (still permanent diarrhea), my GI doctor sent me to a professor at St. Mike's hospital (I have been told that he is the best in Canada!). After further testing, a colonoscopy discovered I have collagenous colitis, which only affects 2 out of every 100,000 people. It can only been diagnosed by a pathologist through a microscope as it cannot be seen by the naked eye during an examination as it affects your cells..... I am currently trying to get it under control with steriods (prednisone....). If you google up collagenous colitis, it probably will sound very familiar to you!!!

It would be interesting to do a poll to find out what type our personalities are here on the board as I am very much like you also..... anxiety, perfectionist, etc.etc.

Karen

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I think I am a bit confused about something. I have read some posts where some of you have said that you got positive blood test results, but wanted to get an endoscopy for a solid diagnosis. What else would make the celiac panel positive beside gluten intolerance/celiac? Would it be possible to have positive blood work, and not have any issues with gluten? Sorry if this is stupid but I just dont get it..

Sabrina

Yes. Positive bloodwork is really all you need for a positive diagnosis of celiac disease. Traditionally, though, doctors like to perform an endo. as well; if damage is found in the intestines there's basically no doubt about it then. The thing is, even if no damage is found, the patient should still go gluten-free on the basis of pos. blood--and the damage might have been missed, etc. It's not possible to have pos. bloodwork and no issues w/ gluten...well, if the testing was messed up or something, I guess you could get a false positive, but if you accurately get tested pos. for it, you have an issue with gluten, whether you feel it or not...

Not stupid at all... ;)

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I am going to be assertive. I would like the colonoscopy after 7 years of chronic "D" just for my own peace of mind. I plan on taking my notes to the doctor with me. If he is willing to discuss them with me, then great. If not, I will shop for a different doctor that is more willing to discuss my health.

And I am going to look into the collagenous colitis.

I am finally getting over my fear of wondering what is going on with my body and ready to do something about it. I have been looking at the gluten-free sites and I think that there are some great alternatives out there. At least they seem great if they taste well enough, but I would be willing to forego a little taste just to get out of the bathroom once in a while!

I am preparing for the right mindset. I don't want to go gluten-free until after the tests but I am catching myself examining all foods. I have already gone through my pantry. I have scared myself about later eating anything besides salad with my own salad dressing that I will bring to a restaurant. Tonight I was on the phone with a friend who was telling me the dinner menu for the night. I was making a mental checklist in my head - Can't have that. Might be able to have that, etc.

Just making my preparations.

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Yeah, I had a sigmoid as part of the IBS study that told me I was positive for celiac (blood tests). It gave a tremendous peace of mind, I have to tell you.

I saw a post earlier about the vaso vagal syndrome, when you get dizzy after standing up quick or after standing in one place at the same time. Is that related to celiac? I started noticing that problem in college, after I had mono (which I think is what set of my celiac). I was in band and starting having to get off the field because I was about to pass out. It has also happened a few times at Six Flags, once at the dreaded DMV line, and once at a choral concert I was performing at. For a long time I thought I was dehydrated, but it was actually just that I had been stading in the same place for a long time.

I am waiting to see if my doctor calls me about these test results to see if he wants an endo. Otherwise I am just gonna stick to a gluten-free diet and tell other docs about the positive blood work. I have a gyno appt. today - I wonder if she will able to help. I just found out on Fri.

I have read in some places that celiac can cause anxiety. I don't have it bad, but I am hoping the gluten-free diet will help me out a little.

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Julie, you sound like me. I didn't really notice a big improvement until I gave up on Dairy. Try going off for a week or two. I also had the York test and found that I was intolerant of Cow's milk, yeast, corn, egg whites, and of course wheat. I am trying to stay away from these things. I can eat cheddar cheese and I drink Calcium fortified OJ because Calcium pills make me sick. Hope you feel better soom.

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I don't know how this can be happening, but I am reading so much that I actually answer a question. On some of the websites I have found, it says that other food allergies could be present along with the celiac disease. I can't remember if the reading said it was caused by the celiac disease. Lactose intolerance was mentioned several times though.

I have another question, please. Can the doctor perform the biopsy at the same time that he does the colonoscopy or is that a different route altogether? LOL The website I read on the colonoscopy said that it stops at the end of the large colon, if I am not mistaken. But I spoke with a friend of mine who is a nurse, and she said that she felt like the doctors could do it at the same time, but they schedule it for different procedures so that the insurance can be billed twice. Does anyone know?

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One more question - good grief they just keep coming, don't they?

In February, I had an exploratory surgery connected with my ovaries. Before the surgery, the anestheoligist (sp?) said that I had an elevated white count. Does anyone know if this is a general problem just telling you that something is going on in your body or if it is associated with celiac disease or any of the digestive disorders specifically?

Thanks. One day my questions will run out - hopefully!

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Hi!

Lactose intolerance would be mentioned several times as it is the one that happens most due to celiac. With celiac disease, the immune system sees gluten as a toxin sends out "attackers" to attack the gluten which, by this point, is in your intestine. But unfortunately, while attacking the gluten, it also attacks the villi (which is the little fingers through your intestines that breaks down/processes/digests your food. The part of your intestines that breakdown/digest lactose is at the very tip of these villi. So even with celiacs that do not have severe damage, lactose intolerance usually shows up very early due to the fact that the part of the villi that processes the lactose is the first to go......

Also, a colonoscopy goes "up" from below and an endoscopy goes "down" the throat. I haven't heard of anyone having them done at the same time. Having had both of them, I would have to say that I don't think I would want to the experience of having tubes in "both ends" at the same time! :o;)

Don't apologize in any way for asking questions! That's what this board is all about! Our motto is "No question is too stupid to ask". We have all been down this road and know how difficult it is to travel.......

Peace.

Karen

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About the elevated white count, a slightly elevated one usually is a sign of an infection. A really elevated white cell count can be something entirely different. It is best to check with your MD about the count and what it means. If it was anything really serious they would not have done the surgery and probably started you on an antibiotic. Hope this helps..

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Thanks, Judy. They did start me on an antibiotic through an IV right before the surgery started. Now I am thinking that it was a silly question. LOL I could have had a ear infection and it would elevate the white count! Of course those results don't come with a diagram to give any indication of the source. LOL Thanks for your patience.

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