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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.

New To The Forum From Mid-Missouri!
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7 posts in this topic

Hello all!

I've been creeping this forum for a year and a half now and finally decided to sign up yesterday after getting way too sick from drinking Malibu and cranberry juice at the bar the night before last. I'm tiny and not great with alcohol but I had a drink and threw up at least six times before I was able to head home. Yesterday was miserable sore everywhere, woke up sick to my stomach, and coughing and congested (i think I'm allergic to my bedroom), no appetite, headaches. Was hoping this morning would be better but coughing (this clears when I get up and leave my room. Anyone have tips for keeping a super clean room? I just washed all my sheets and run my rainbow vacuum to try to clean the air some) and throwing up stomach acid, and already have a headache. I'm not trusting bars anymore!

But yeah...I just wanted to say hi and get my story out there just to get some confirmation that I'm not crazy and that I'm on the right track because as most of you know doctors tend to be rather useless a lot of the time.

So...here we go! >.<

So I've always been skinny. 5'6" and a 100lbs through most of highschool. My mom fed me healthy food, and I never ate or snacked a lot, but I could put away a ton of breakfast foods or desserts (used to be favorites) if you put them in front of me. I tended to have a weak stomach in the mornings and couldn't shower in the morning because it would make me sick and was always somewhat constipated (going 1 every two days was average) but thought nothing of any of that at the time. I was busy, active, and healthy for the most part.

Things changed at the end of 2010. My boyfriend had been trying to help me gain weight but it hadn't really been working. I finished up that fall semester extremely stressed and had taken too much adderall as a study aid those last two weeks and my boyfriend broke up with me the day before I went home to my parents. Things went down hill from there. Most of my friends from high school wouldn't hangout with me or kept bailing on plans so I was hanging out with some not so great people because I was stressed and miserable at home. (They gave me some not so fun drugs like GHB :/) And during all of this I was starting to have a very hard time eating food it just hurt so much so I had to lay down for like an hour after I would eat otherwise I'd throw up and had stopped having any sort of normal BMs. It got over six days. I didn't talk to my parents but they didn't seem to notice anything wrong with eating christmas dinner in ten minutes and then laying down for two hours.

The only good thing I got from those terrible friends was a suggestion that I may have celiacs and I started looking into it. I was so weak and miserable and resorting to MDMA (haven't touched anything like this since then. so no worries there!) to be able to go out and function on a normal level. Obviously that wasn't helping anything at all, but at the time I was miserable and couldn't do anything without it hurting, was wanting to kill myself, and really didn't have anyone to go to or anyone who could help me out. My parents treated me going gluten free undiagnosed at the beginning of 2011 like they treated me being vegetarian in high school. I lived off of rice and clementines for a few days. I ate very little and my parents kept getting mad at me for not eating the food they were preparing for me. But I could keep that down, it didn't hurt, I had finally been able to go to the bathroom and I looked noticeably better weight wise. I was without a scale but when I finally got to one and obviously put on a few pounds I was 96lbs. I don't want to know how bad I was before that, but I know I did quite the number on my body.

When I got back home from break I was miserable still. People were mad at me for things I did over that break. I had an apartment full of food that I couldn't eat and no idea what to do and my ex had moved out the day before I got back after living there for a month. I was starting classes, living a lone for the first time, had almost no food, and was so sick that I didn't have to energy to stand long enough to cook my own food. I had permanent headaches, couldn't get my weight above 100lbs, terrible back, neck, and knee pain, was so dizzy I couldn't stand up without getting light headed, still couldn't properly BM and it was always yellow and coated in fat. Mornings were terrible. I would start throwing up first thing when I woke up and wouldn't be able to get down anything for a few hours. I was so tired. I wasn't sleeping at night waking up every two hours like clockwork and burning up drenched while freezing at the same time. I was able to get into see student health at my college but the doctor was completely useless other than a blood test conforming I didn't have diabetes, thyroid problems, ran an inconclusive blood test to see if I had celiacs ( had already completely cut gluten out for at least a month. He told me that I should add some back into my diet which I did not listen to and said blood levels of things were a little low but that everything looked okay, but I obviously was really malnourished. All of this went on for a few months. Still feeling miserable and trying to balance school, life, relationships, and everything on my own wondering if going gluten free was the right thing, if somethings else was wrong, and if I was crazy. Did I mention that I was always an anxious and somewhat depressed individual (i could handle it alright though) but it went through the roof when I got sick. Especially when I was feeling worse or when I had some cross contamination (which would set me back a few pounds and made things even worse for a few days)

Sorry about that rambling. >.<; Finally in June or July I was able to finally get some conclusive test results. I was allergic to wheat and to peanuts. I had replaced my love of oreos with recesses. I never noticed anything but I don't imagine that was helping .

I've slowly been recovering over the last year and a half. It hasn't been easy. I've finally got my weight up to 110-113lbs! The most I've ever weighed! But I've switched my major to nutrition and dietetics so I can learn what nutrients I need more or and what I'm missing and all of that and hopefully be able to help people out who have faced the same things I have. I've been seeing a counselor and my useless doctor prescribed my paxil in less than 15 minutes which I refuse to take. I've also started on allergy drops in the last two months for environmental allergies (I reacted to everything. But grasses DUH!!!!, and dust mites, and cats (given a low dose because I already knew about that one) swelled up to a little smaller than a quarter. With the food test I once again reacted to everything and I reacted to the wheat after not being anywhere close to any (other than cross contamination occasionally) in over a year.

I'm still not 100%, but (other than right now from that stupid drink) I've been doing so much better! I still get weak and dizzy super easy and can't get my weight up higher. My stomach always kinda hate me when I eat, but I can get up and going and have productive days without falling and/or breaking out in tears or a panic attack every ten minutes. I'm pretty sure I'm still malnourished to an extent and one days when I can keep down all my food I try to consume a 2000+kcal diet. Which isn't easy when I'm trying to avoid processed foods (I had to live off of them for a few months starting off. My food bill was scary high! Gluten free microwave meals aren't cheap but it was that or not eat at the time) and trying to eat lost of fruits an vegetables, meat, rice, and potatoes oh and I can handle dairy again but I can have a lot of it makes me sick. My dairy consumption is just string cheese and greek yogurt. And I now enjoy hemp, coconut, and almond milks instead! Also, my BMs are still very yellow and fatty despite being much better at eating properly and avoiding gluten. I imagine that I had minor wheat allergies long before things got bad and that 20 years of damage to my small intestine is going to take a while to heal.

But I'm studying nutrition to figure all this out! I try to volunteer at local animal shelters when I can! I've started aikido and doing yoga on my own in the mornings! Things to get healthy and active. Now some of the main problems I'm facing is having to eat and fix all my food alone since I can't just go to taco bell and don't want to make people accommodate my allergies and it's extremely hard to get people to come over to mine to eat because they don't want to waste my money and food but I just want some company and people who understand that this is going to take a while to get better and not think that I'm just doing all of this to myself and that I'm using it as an excuse! Which I'm not! I work really hard to make it through the day to eat enough, not get sick, and take care of friends who are struggling too and have no ride but me most of the time to get necessities!

So sorry for the extremely long post! I think I added most of my symptoms and what I've been doing to get better. Any good tips for getting healthy and improving nutrient absorption? Any good ways to deal with always being left out when it comes to food? Also, moving this weekend and I'm going to have a roommate does anyone have good tips for making sure we don't make each other sick? She's allergic to tree nuts.

Thank you for taking the time to read this!

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welcome, that is quite a story. One thing I'm confused over is whether or not you have celiac disease? I noticed you said you had a wheat allergy and to many with celiac this is a bit of a no no. Regardless it sounds like you are on the right track, it's hard to make such a drastic change in one's diet.

As far as tips for avoiding you and your roommate contaminating each other, that's a bit of a hard question as a lot of situations can be pretty different. For example, are you going to try to keep the whole place gluten/nut free? If not I would definitely recommend you have your own dishes, toaster, etc. Don't be afraid to beat a topic into the ground, MAKE SURE you are on the same page.

Tree nuts, to my knowledge is a pretty easy allergy to manage comparitively but I would still try and take the time to understand your roommates needs in this regard and I am sure they will be more than happy to accommodate your needs.

I hope I was of some help, though I am sure there are others on here who know much more than I.

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Thank you! :)

So far I've just confirmed a wheat and peanut allergy. Apparently the doctor I was seeing ran some sort of test for celiacs and that a few things were off but it wasn't terrible. I'd been away from all wheat and anything with gluten for about three months then. I'd ask the doctor what tests but he's rather useless and told me to keep eating wheat. I'm already having difficulties with insurance and such with my allergy drops and haven't found anyone who knows their celiacs and allergies so im not bothering with more testing for now because what im doing to get better probably wouldn't change any.

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Thank you for telling us your story. It is a little confused so let's try to sort through it. You have lots of actual allergies, to dust, cats, other environmentals - Is your allergy to wheat in this same category, i.e., hives, itching, rash, sneezing, anaphylaxis? Or are you referring to celiac disease when you say a wheat allergy? Because celiac disease is not a wheat allergy, it is an autoimmune disease which causes your body to attack itself. You should go to the office of the doctor who did the testing and get a copy of the results of all the tests to see for yourself what they say - you cannot rely on what someone tells you..Any actual tests for celiac disease would be testing for an IgA or IgG or tTG reaction. I know that you were eating gluten lite when they were done but if you could post them on here they might give us a starting reference point.

It is not clear to me how strict you are being with gluten free? Have you made sure that you have eliminated all gluten? You should have noticed a big difference when you did that. Can you tell us more about that? What are your current symptoms? Have you had tests for other problems, nutritional deficiencies, etc.?

With a little more information hopefully we can give you some help. :)

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Thank you for telling us your story. It is a little confused so let's try to sort through it. You have lots of actual allergies, to dust, cats, other environmentals - Is your allergy to wheat in this same category, i.e., hives, itching, rash, sneezing, anaphylaxis? Or are you referring to celiac disease when you say a wheat allergy? Because celiac disease is not a wheat allergy, it is an autoimmune disease which causes your body to attack itself. You should go to the office of the doctor who did the testing and get a copy of the results of all the tests to see for yourself what they say - you cannot rely on what someone tells you..Any actual tests for celiac disease would be testing for an IgA or IgG or tTG reaction. I know that you were eating gluten lite when they were done but if you could post them on here they might give us a starting reference point.

It is not clear to me how strict you are being with gluten free? Have you made sure that you have eliminated all gluten? You should have noticed a big difference when you did that. Can you tell us more about that? What are your current symptoms? Have you had tests for other problems, nutritional deficiencies, etc.?

With a little more information hopefully we can give you some help. :)

My wheat allergy is very different from my other allergies. Those bother me in the normal ways, sneezing, congestion, heacaches. With wheat I have none of those symptoms it's all gastrointestinal. The symptoms I suffered from wheat and while I was beginning to cut it out of my diet was weight loss, nausea, headaches, muscle and joint pains, constipation but of (TMI) yellow mush, mental and emotional difficulties, difficult mornings, troubles sleeping, and night sweats all the fun symptoms of being malnourished and unable to keep down most of my food. I started going gluten free right after I my "friend" suggested I looked into it and while I definitely struggled with cross contamination for around six months and still have the occasional cross contamination (usually eating out which is a rare treat now and that drink i mentioned) I haven't intentionally consumed any wheat since January 4, 2011.

edit...also I follow a completely gluten free diet despite only confirming wheat. I figure it's a safe to assume I may have problems with gluten specifically and so I avoid rye and barley as well to be safe.

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Okay, so what you are telling us is you have symptoms of celiac disease (not a wheat allergy), and that your doctor has run some tests which were not very conclusive. It is still important to get copies of those results and post them here so that some of the people on the board here who are expert in interpreting those results can have a look at them. Your doctor may (or may not be) very familiar with celiac disease and we might be able to help you interpret them.

There are lots of places to look for hidden gluten. In all scrips, OTC medications, things like soy sauce and salad dressings and marinades, toothpaste and lip gloss and other makeup, even cat litter if you have a kitty and don't wash your hands after changing the litter box. Kissing your boyfriend if he has not brushed his teeth and is a gluten eater is another biggie. Lots of hidden gluten traps to be aware of. Did you deglutenize your kitchen and replace the utensils like plastic and wood that you cannot get the gluten out of, buy a new colander and new toaster?

Yes, I think it is safe to say you do not tolerate gluten, whether you are celiac or not, given the symptoms you have outlined. Which of those symptoms do you currently still experience? Have you found out if you have any nutritional deficiencies you need to supplement?

I know, a lot of questions, but they are important ones. :)

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Hopefully I'll be able to get a hold of the different tests I've had done because I'd love an informed opinion on all of those!

I'm gluten free to the point that I know that all my hygiene products are safe and I don't eat anything unless it says it's gluten free or I've spent a good amount of time googling anything I'm not sure about. And thankfully I didn't have a lot of wood stuff, most of the plastic I had then I don't use or it's been thrown away (currently in the process of slowly eliminating all virgin plastic from my life), and I cleaned my toaster but I rarely use it (haven't in months) and I'm getting a brand new on when I move. I'll still find out new things I can't eat but thankfully I find more new things I can eat nowadays!

I still suffer from fatty BMs. I'm more weak than I should be and I'm still easily dizzy. My stomach is still unhappy a lot of the time. If I don't eat small frequent amounts things go down hill. I still get some night sweats. umm...trying to think of everything. My period is particularly bad. I don't get cramps or anything like that I just get all of the symptoms from eating gluten when I know I haven't accidentally consumed any. My insides and immune system just fall apart for a few days and then leave me feeling super weak for the rest.

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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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