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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?  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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aliciaD

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Hello Everyone, I am so desperate for someones opinions, thoughts and advice!

Over 2 years ago I started having diahreah followed by constipation. It would trade off with each other and just be a rare occasion. Every Doctor told me it was because I ate poorly and was overweight. Well I got pregnant with my son, and then they kept telling me it was symptoms of pregnancy. I had my son and guess what? you got it! It was still happening. It went from being a few times a month to weekly, to daily diahreah, and now several times a day. I can't even leave my house. Finally my husband had enough and I went to a GI doctor he did a colonoscopy and found nothing wrong, so he basically said oh you have IBS take 8 immodium a day, fiber and a probiotic, you will have this forever and just live your life as normal as possible. I am 27 have 2 kids and a family, a job, apparently I am suppossed to do most of that from the toilet or my bed :( (end sarcasm). Well after my colonoscopy, I bought a book for IBS and sat and read pages and pages on IBS so I started following this "IBS Diet" , considering I had just been cleaned out and everything appeared healthy I could finally get my life back. I still was feeling terrible all week with eating these "IBS SAFE" Foods and felt really discouraged. Yesterday I had a ton to do outside of the house so I was determined not to eat anything until I got home and was near the bathroom. I ate a 4 inch sub from subway, within 30 min, I got a 101 fever and was nauseated, I laid down in bed fell asleep and was woken by the worst pains and diahreahh, my eyes were swullen and itchy. Everytime I ate anything this week that contained gluten I got a fever.

My other symptoms over the past 2 years have been, constipation, diahreahh, swollen eyes, hair loss (they also told em its my hormones form my son eventhough hes 2), unexplained fevers, acne ( ihave never had it before), feeling full even if I barely ate, so full i felt like my stomach was going to expload, gassy, bloated, pains and cramping,

Do you think gluten could be the culprit??? I ate gluten free today and did not get any fevers today, at all. This will be the first time in a very long time this has happened.

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I think you may have just solved your mystery! Your symptoms are definitely consistent with celiac or gluten sensitivity. My eyes get swollen, and I get feverish, too, when I've accidentally ingested gluten. Of course, the diarrhea followed later by constipation is also a problem as is the joint pain, muscle pain, bone pain, headache, stuffy nose, and foggy thinking. Actually, I end up sick in bed for a few days each time it happens.

You've come to the right place to find out how to change your life for a healthier you. Find out which foods contain gluten and try a gluten-free diet for awhile. If your symptoms resolve, then you can seriously begin to make changes in your kitchen to ensure that you don't get cross-contamination. In the beginning, it's usually easier and less expensive to eat natural foods that don't contain gluten. Natural foods have the vitamin/mineral content that you may be lacking, and gluten-free substitutes might not agree with you in the beginning.

Good luck...and please keep us apprised of your progress.

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I would also agree that you have solved your mystery, but you also need to find a good doctor who is knowledgeable in Celiac disease. Finding the right doctor is so important, it took me over a year to find a good gastro, but they are out there. Be an advocate for your health, this is your life and your body, only you know when something is wrong. I wish you much luck, and sending out big hugs and healing thoughts!!

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I thought I'd add..since you have been eating gluten you should call your Dr. ASAP and ask for a full Celiac blood panel to be drawn. A colonoscopy won't show Celiac disase. It does it's damage in the small intestine.

Most Dr.s don't think to check for it.

It sure sounds like gluten might be your problem?

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You should also contact Entero labs and get a stool based test concerning gluten intolerance. It often does not show in blood tests.

The bottom line however is to just go off the gluten completely and see if you do better or not. Obviously nothing else is working. Tests don't always show if one is severely gluten intolerant. Celiac has been given a narrow definition that does not fit everyone that needs to be off gluten. Dr. Vicky Petersen is a good U-tube resource by the way.

Going off gluten means going off all trace gluten too, even your lipsticks and chapsticks and shampoo and body lotions often have gluten in them. Check out the list of hidden gluten ingredients here on celiac.com. Avoid using wooden chopping boards, wooden utensils, wooden bowls as well as fine mesh metal collanders etc. that have been used with gluten, old toasters etc. Your oven is also suspect assuming you have done any glutenous baking. You can put it and any iron pots in it for an hour on the self cleaning cycle to get rid of the gluten that is baked in. Or use a new gluten free toaster oven. Basically you have to clean you kitchen and at least have a safe gluten free area for your stuff that you use.

What many do here is to just eat things like chicken and brown rice and veggies at first--all cooked from scratch to see how they do, as well as to heal since so many foods have trace amounts of gluten in them--often even things that claim to be gluten free. Be careful too of spices. Its best to buy them whole--like fresh ginger -- until you find a truly gluten free source.

Good luck! Even though I don't wish gluten intolerance on anyone, its better to find the hidden cause of all your suffering so it can stop and you can begin to live your life again!

Bea

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Good advice given already.

I would most certainly request the full panel of blood testing. Some doctors hesitate to order this panel or even think of it. My sisters' gastro only gave in and ordered it for her because I am celiac. He told her it was doubtfull she had it too. Crazy!

I was told after my colonoscopy that I had IBS. I went on the diet for it and my pain was worse, so I started eating salads. I felt better and told the doctor, only then did she order the panel for Celiac.

Best wishes to you! Please keep us updated!!

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Before diagnosis I was also barely able to leave the vicinity of the toilet and I couldn't work. Hard to do on the toilet, as you said. Now I am working again. My stupid doctor told me it was IBS too. Good for you to have figured it out on your own.

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You need to stay on gluten until the blood tests are done though. They aren't accurate if you re off gluten before testing. After the blood is drawn you can go gluten-free right away. Unless you decide you want the endoscopy also in which case you should wait for that to be done. Not everyone needs the endoscopy. If you don't need a doctors diagnosis, then your own bodie's reactions are a pretty good reason to not eat gluten.

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Just wanted to add that salicylate sensitivity can also create IBS. I have both quite severely--most don't, but some do. Its not uncommon for those with SS to at least have some gluten sensitivity. Might also be a direction to look into...

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Hi and welcome! It sounds like you've had a rough couple of years, but maybe you're finally on the right track to feeling better. If you've been eating gluten regularly for the past few months call your dr and get a full celiac panel done ASAP! On the blog linked from my profile I have a post called "make the most of your doctor visit" and a series on celiac testing myths including "doctor knows best" that outlines what tests to get. I'm hoping to get another one up today on false negatives as well. I hope you can get some good test results soon!

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Hi and welcome! It sounds like you've had a rough couple of years, but maybe you're finally on the right track to feeling better. If you've been eating gluten regularly for the past few months call your dr and get a full celiac panel done ASAP! On the blog linked from my profile I have a post called "make the most of your doctor visit" and a series on celiac testing myths including "doctor knows best" that outlines what tests to get. I'm hoping to get another one up today on false negatives as well. I hope you can get some good test results soon!

I had a celiac test ran back in march and the doctor said it was negative, I am really disappointed in my GI who did not go ahead and do an endoscopy at the same time as my colonoscopy and think to test me for celiac. I really feel like my doctors have failed me recently, and am going to go on the hunt for a new team.

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    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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