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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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sforce    0

I'm actually nervous about writing this, because I can't seem to be coherent anymore. This is getting ridiculous.

In October, I started a med called Savella for fibromyalgia. My pain went down to almost nothing, but I started having serious problems with D and nausea, plus my heart rate and blood pressure went up. I accidentally went gluten free close to the beginning of my trial with Savella. The D stayed, but while I was on a low-carb diet [fitness program] for two weeks, my energy started to increase a lot. I thought it was the Savella, but once I started back on a regular diet, my energy level dropped off to nothing again.

I finally had to stop the Savella because of side effects, but the D stayed even after my heart related symptoms went away. I'd been researching Celiac by this point, and decided to go gluten free on purpose.

The D was gone within two days, but my energy didn't get better. On December 23rd, after doing more research [here...have I mentioned that you guys are wonderful?] I decided to start back on gluten in the hopes of getting my antibodies up if I'm making them.

I'm currently waiting to set up an appointment with my doctor to have a celiac panel done. Here's my question, though [sorry if I'm rambling]

My symptoms have multiplied since going back on gluten. Can a two week gluten-free trial cause such a weird reaction? My temperature has been at 99.6 since I started back on gluten. Normal for me is in the 98 range, but usually below 98.6.

My heart rate has been wonky [a little high, lots of palpitations, and it feels like it's beating 'hard' right after I eat. Usually lasts a couple of hours].

The D came back within a week or so, and I've gotten back to having to go 5-6 times a day.

The thing that's driving me nuts, though, is I can't type anymore [ridiculous typos...like I've forgotten where the letters are] and yesterday, I was measuring my kids' weight and height, and in the time it took me to measure them, walk four feet to my desk, and write down the numbers, I'd forgotten what the measurement was!

I had to walk back and forth from the wall to my desk three or four times for each number.

I've noticed that my ability to remember stuff has gotten a lot worse since I was in my late teens to early 20s, but this is a new low. I used to have a near perfect memory, and could memorize an entire page in about 15 minutes.

Also, I remembered [miraculously] that about five years ago, I had another bout of unexplained, chronic D that lasted three or four months and went away on its own. Can Celiac cause GI symptoms and then it just stops after a period of time? My doctor never did any blood work the first time [he was old school] so I have no idea what caused it, and I don't remember changing anything diet-wise at that time, but I do know that after that, I started losing weight without trying.

I thought I was doing something different by chewing my food thoroughly, but I lost 30 pounds without doing any exercise. It took about six months to lose the weight, and I got down to the weight I wanted and then stopped losing, so maybe I did cause that by eating differently, but part of me wonders if it was gluten intolerance.

I feel like absolute dog poo. Can't think, can't eat [nausea is back, too], can't leave the house because of D [immodium helps some with that, though] muscle pain is out of control, and no matter what meds I take, my temp stays at 99.5-99.6. I'm cold and exhausted and depressed and grumpy, which is not fun since I have three kids and a quadriplegic brother to take care of. Oh yeah, I have a fever blister that seems to be trying to conquer my entire chin, itchy skin [but no blisters that I can see. When I scratch, hives seem to pop up, but they don't stay...there are some bumps, but I can't tell if they're from scratching or just coming on their own].

Can two weeks gluten free cause symptoms to get this out of hand? I'm trying to hang on for the few days that are left until I can get tested, but if this is really what's going on, I'm really REALLY beginning to understand why so many of you refuse to go back to gluten no matter what.

I plan on going gluten free regardless of my test results, because I know it will more than likely take care of my D. I have another question about the memory loss, though. Can Celiac cause it, first of all, and if it can, is it possible for my memory recover? I can't even begin to tell you just how much I miss my brain.

Thanks for reading, and for any help you might have to offer.

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rosetapper23    236

Your story could have been written by many of us here on the Forum. (All those on the Forum who felt like dog poo, please raise your hands!) And, yes, the symptoms can wax and wane throughout one's lifetime. Gluten acts like a neurotoxin on both people with celiac and those who are simply sensitive (usually because they have leaky gut), which is why memory can be affected in so many of us. Also, it's not uncommon to be ultra-sensitive to gluten after removing it from your diet and then adding it back in. Sometimes that's the determining factor for those who have been on the fence about going on a permanent gluten-free diet--their socks got blown off by the symptoms when they resumed eating gluten (yep, "dog poo syndrome").

However, in addition to symptoms of celiac, I also wonder if you might have Hashimoto's thyroiditis. The memory problems, fatigue, muscle aches, etc., are all indicative of a thyroid condition, which is common with people who have celiac. Please have your doctor test you for it. Also, you might ask for iron and ferritin tests--whenever my anemia gets really bad, I can't type at all because I make too many typos.

With regard to your rash, I notice that you described it as starting as a fever blister, which is a form of the Herpes Virus. The skin condition that many of us celiacs get is called Dermatitis Herpetiformis because it is rash that is herpes-like (itches, stings, and burns). You may, in fact, have this condition....or perhaps you have a zinc deficiency from celiac that is causing the bumps. Whatever the condition is, I suspect that a gluten-free diet might just help clear it up!

I hope you start feeling better soon!

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sforce    0

Thank you for taking the time to answer me. I know you guys get tons of questions each day, and the fact that someone answers almost every one is really amazing.

I've had my thyroid checked several times since my symptoms started getting really bad, and they've always come back within 'normal' range, which is so large that really it kinda means nothing.

I called my doctor today, and her nurse [who is always very kind and has always listened to me ramble on the phone before today] told me the 'best' way to test for celiac is scope and biopsy, then she said there were blood tests that might help diagnose [and mentioned Anti-Gliadin IgA].

I told her about the celiac panel Mushroom listed on another post the other day, and she just said she'd talk to the doctor and see what she wanted to do. I even explained why total serum IgA was important, and she just repeated that she'd talk to the doctor...so tomorrow, I go in to get God only knows which tests and just hope something comes back positive.

I feel a little crazy, because I actually hope it is Celiac. At least then I'll have a cause for all this crap I've been dealing with and a way to fix it [barring permanent damage]. So much of this is so freaking random that if I had something to treat every symptoms I have, I'd be downing 30 pills a day.

I've had a fibro diagnosis for a few years now, and what I've learned is that it's complete trial and error to treat. You just keep trying random meds to see if they help. No one knows what causes it, or even how it works, so there's no real treatment. Frankly, I don't have enough energy to go back to the doctor every month or two and keep trying to find something else that might help.

Celiac isn't fun, I know, and gluten is in just about everything, but at least I'll know what my enemy is and I can fight it. I'm just so incredibly tired of watching myself slowly becoming more and more sick and being utterly helpless to do anything about it.

Sheesh. I'm usually not such a whiner. I was just really bummed when I got off the phone with the nurse today. They're usually great about helping me out with whatever I need, and I felt like I got the brush off. Hopefully she wrote down the list I gave her and I'll get a nice surprise when they start filling vials tomorrow.

Thanks again for all your help, and for listening to me whine a little. :(

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rosetapper23    236

Don't worry--none of us here on the Forum would think that you're whining. Believe me, we've all felt like you sometime in our lives. Many of us went for years with horrible symptoms that doctors told us were all in our heads. I hope that whatever the test results are, you will still go gluten free. My muscles, tendons, and joints were a mess until I went gluten free--one orthopedist actually thought I had muscular dystrophy because of how rigid my muscles were. Since going gluten free in 2004, almost ALL of my symptoms have been alleviated, and--except when I'm glutened--I no longer have problems like fibromyalgia or tendonitis. There IS hope! Please let us know how your tests turn out, and we'll use our collective heads to try to help you further.

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ravenwoodglass    1,221

Don't worry--none of us here on the Forum would think that you're whining. Believe me, we've all felt like you sometime in our lives. Many of us went for years with horrible symptoms that doctors told us were all in our heads. I hope that whatever the test results are, you will still go gluten free. My muscles, tendons, and joints were a mess until I went gluten free--one orthopedist actually thought I had muscular dystrophy because of how rigid my muscles were. Since going gluten free in 2004, almost ALL of my symptoms have been alleviated, and--except when I'm glutened--I no longer have problems like fibromyalgia or tendonitis. There IS hope! Please let us know how your tests turn out, and we'll use our collective heads to try to help you further.

I agree and could have written this post except they thought I had MS not MD. In addition to celiac I also have a connective tissue symdrome, Ehlers Danlos, so a lot of my joint and muscle problems were attributed to that, fibro and arthritis. Even with brain lesions and flat line electromylograms they still were telling me it 'was all in my head and I wanted to be sick, here have a prozac'. All of my issues have resolved once I was finally diagnosed celiac. The diagnosis was a long time coming for me because I am one of the 20 to 30 percent that have negative blood work. Do try the diet after your testing is done and don't go gluten light until then as you want the best chance possible for a positive test. After you are done with testing give the diet a good strict try for a couple months no matter what the results.

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sforce    0

My doctor ended up ordering the Anti-Gliadin Antibody [a, b whatever that means...maybe IgG and IgA?] and the total serum IgA. At least we'll know if I'm making antibodies at all.

I won't hear anything until the first of next week because she's going to be out of the office again until Monday, but I went ahead and stopped eating gluten yesterday. I figure a week shouldn't screw up my results if they're positive and she decided to do more testing.

Going from gluten-free back to eating gluten was a freaking nightmare. I don't want to have to do that again. Ever.

I'm not sure I'm desperate enough for a diagnosis to knowingly make myself sick again, you know? I feel absolutely awful today, but my lowgrade fever is going down [it was running 99.6 the whole time I was eating gluten again, which isn't a high fever, but it is above normal for me].

I think the thing that kinda slapped me hard was that I got really depressed, really fast. I've struggled with depression since I was about six [way back before they knew kids could even have depression so nothing was ever done]. I hate being so angry and sad and helpless to get out of it.

That was something I noticed this last time I went gluten free was that I was just happy and content for no reason. That's such a rare feeling for me, and this angry person I've become in the past couple of weeks must go!

Thank you so much for your support and for listening to me whine the other day. I can't even tell you how much it means to me to have found this forum. I'm looking forward to getting to know you!

Shelbi

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ravenwoodglass    1,221

Gluten is a neurotoxin for some of us. I know what you mean about the depression I struggled with it from childhood myself. Now that overwhelming depression is the first sign I have gotten glutened. Thankfully it now lifts within 24 hours, just in time for the migraine and GI stuff to start. I have been amazed at the difference being gluten free has made in not just my physical but also mental health. Whether you are positive on testing or not it sounds like the gluten free life is going to help you a great deal. I hope your feeling better soon.

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sforce    0

Yeah, I have no doubt that I'm at the very least sensitive or intolerant to gluten. I ransacked my kitchen and got rid of all my gluten-y foods except for one shelf that belongs to my husband [the very top shelf of one of the cabinets where nobody can reach...I figure if he's going to eat that crap in my house, he can work for it. Bwahaahaa!!!]

I was up all night the night after I cleaned out my kitchen with a killer flu bug and I'm just now human enough to type. That gave me a couple of days' worth of clear liquids and a LOT of sleep.

You'll never guess what I dreamed about, though.

The first one I really remember is that I dreamed my husband was bringing stuff like raisin bran and mac-n-cheese into the house and not putting it on 'his' shelf, so I kept eating the gluteny stuff by mistake. I was yelling at him and telling him I didn't care if the shelf was high, he could get a freakin' chair and stick the stuff up there where it goes so I wouldn't keep eating it.

It was crazy, 'cause in the dream, I was really hungry [probably true, since I haven't had any solid food in about two days] so I kept eating the first thing that looked good, and then I'd realize it had gluten in it!

In the second one, I dreamed that we were staying at a friend's house, and in the dream, I was confused and thought we were moving in, so I went through all of her cabinets and threw out all of the gluten-containing foods. No more cream of mushroom or hot dog buns 'cause I chucked 'em.

Then in the dream, they came home, and I realized that we weren't moving in, but were just staying for a visit, so I'd thrown away most of her food, and she was trying to find something to feed her kids, but couldn't, because most of it was in the dump.

The dream ended with me being really embarrassed and offering to give her some money to replace the stuff I'd thrown away, and trying to get my husband and kids rounded up so we could leave as quickly as possible. I'm still a little embarrassed I threw away a bunch of food that didn't belong to me...even if it WAS a dream. :)

Apparently, the flu does strange things to my mind. :rolleyes:

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sforce    0

The doctor's office called and said my results were 'just fine'. She's mailing them to me, though. I'm not surprised the tests were negative, and frankly, I don't really care.

I went gluten free on my birthday, the day I got tested [01/04/2011] and got the flu a couple of days later. Three days ago, which was about four days after going gluten free, and the day I finally recovered from the flu all the way, I had ENERGY for the first time since last October [when I went gluten free for a couple of weeks without realizing it].

I was afraid it was a fluke, but yesterday, I had energy [i was tired in the afternoon, though, 'cause I was averaging 5 hours of sleep for a few nights], and today, I am cleaning my house and making my kids do their chores because I have enough energy to enforce the rules AND do work!

Oh yeah, my kids are gluten free, too, 'cause I got rid of everything with gluten [except for hubby's shelf] and my ten year old son, who has been depressed like I was since he was tiny [maybe six or seven?] told me that he feels happier since going gluten free.

I can't even tell you how incredible that makes me feel. He was starting to scare me a little, and I was trying this as a last resort before counseling.

Words simply cannot describe how I feel right now, but those of you who have gone gluten free and gotten better know exactly what I'm talking about. Thank you so much for your support!

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mushroom    1,205

How wonderful for both you and your son. You must both feel like a cloud has lifted off you. :)

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sforce    0

How wonderful for both you and your son. You must both feel like a cloud has lifted off you. :)

Oh man! A big ole lead cloud! I'm tired right now because I worked all day, but watching my son act more and more cheerful as each day goes by makes my heart sing. :lol:

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ravenwoodglass    1,221

Oh man! A big ole lead cloud! I'm tired right now because I worked all day, but watching my son act more and more cheerful as each day goes by makes my heart sing. :lol:

I am glad you guys are seeing such positive changes. My son shortly after going gluten free remarked that he never knew what 'being happy' felt like. Since he was in his late teens then it was quite a heartbreaking statement. So happy for you and for him.

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mcc0523    13

In addition to Ehlers-danlos syndrome, perhaps you should look into autonomic dysfunction (or dysautonomia). My particular brand is something called Postural Orthostatic Tachycardia Syndrome. Postprandal fluctuations in bp and pulse are not uncommon. Dysautonomia is common with us who have EDS (I can't remember exact percentages right now, but MUCH higher than a *normal* population), and can cause inability to regulate body temperature, pulse, blood pressure... even digestion. Anything that is controlled by the autonomic nervous system can be affected by this. Any underlying malabsorption issues that comes along with celiac/gluten-intolerance can fuel symptoms even more.

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Financialman    10

Don't be concerned because you think you are whinning. Celiac Disease is a life change and not a diet...a difficult life change. You have a lot of company and help with the people on this forum so don't hesitate to ask your questions. I was diagnosed with Celiac Disease in November 2009 and it was all the caring other Celiacs, not the medical professionals, that helped me cope with this life style change. It does get better so be patient.

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jlee2    1

I'm sure you have had your B12 tested with everything else, but if you haven't I would suggest it. I have absorption issues alongside my celiac and IBS and when my B12 is low if I forget to get an injection I am clumsy, have 0 energy, can't think straight, incur memory loss, and just float in a general brain fog. This is the same for 2 of my cousins. As soon as we get our Injections it's easier to make it through the day!!

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