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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.

Extreme Brain Fog?
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14 posts in this topic

I couldn't decide what seemed like that best category was.. even though I'm technically pre-diagnosis.. I'm already in the steps to recovering because gluten is clearly an issue for me. I'm on a gluten free diet per doctor's suggestion.

 

I'm 17, I suspect that I have celiac or at least gluten intolerance. I began homeschooling two years ago due to being so sickly. We didn't know why I had such a wide array of symptoms.

 

 

My blood test for celiac came back negative and we have yet to hear about the intolerance. I'm still not convinced that I don't have celiac though.

 

Right now I absolutely cannot think. I've been on a gluten free diet for less than a week because my doctor suggested that I try it. I'm certainly not 100% gluten free due because I still use the same toaster as the rest of my family and things like that. There's a chance that I may have eaten a microscopic amount of gluten because I was eating raisins and some other things that were not specifically labeled as gluten free this morning.

 

I have school work to do, I have to write an english paper, I have to do my math work and my tutor is coming later. I'm SO exhausted. I can't even bring myself to think. I just sat there staring at a blank document forever with my head spinning. Now, I'm lying down for a nap until my tutor gets here in an hour.. my mother is mad at me because I haven't gotten ANY work done in the past four weeks because I've been feeling so unwell. My stomach issues have begun to resolve since starting to eat gluten free.. and the brain fog has even lifted... This morning though, I must have had something I shouldn't have.

 

I'm getting a headache and I feel like I'm in a complete fog. How am I supposed to handle this. It's not my fault that I feel this way, I TRIED to work but I can't. I can't even focus on the things that I actually want to do like drawing or playing the guitar. How am I supposed to resolve this before my tutor gets here? How am I supposed to make my mother understand? I'm not being lazy. Does anyone else here ever get a brain fog so bad that they simply cannot work/do school/etc.?

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You're going through gluten withdrawal. It is an actual physical thing, not just emotional. Brain fog, mood swings, headaches, and constant hunger are the usual symptoms. It usually lasts two or three weeks.

 

What tests did your doctor do?

 

If you're going gluten-free you need to go 100% gluten-free. Read the newbie 101 thread in the coping section to learn how.

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I have a 17 year old son who has this problem.  I have thought he was lazy and faking many times.  It is hard to look at someone with this problem that you can't see and believe it.  His doctor believed him and helped us learn how to avoid gluten contamination in his diet.  His school administrators wouldn't believe it, but many of his teachers did.  They saw how when healthy he would be at the top of his class, but when he went to school glutened, he would completely fail.  He can't write at all glutened, and when healthy he writes brilliantly.  I had to pull him out of school early this year because the administration would no longer allow him to make up for missed days.  Fortunately they didn't do that until he was old enough to legally drop out of school.  Lucky for my son, I also have celiac disease and also get brain fog.  My symptoms were nowhere near as bad as his and I still got through many years of school without serious problems.  It still helps me understand what's going on with him.  As a parent you have a big fear of not encouraging your child enough for him to be a success.  You feel that if they aren't going to school, they won't be able to get a job and it will be your fault.   We are working on the diet challenges and he will do a high school equilvalency exam and go to community college.

 

I hope that you can recover soon and that you can explain to your parents what is going on.  I hope that you can find a solution that will work for you.  It can be very difficult and you need support.  I wish you the best.

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I couldn't decide what seemed like that best category was.. even though I'm technically pre-diagnosis.. I'm already in the steps to recovering because gluten is clearly an issue for me. I'm on a gluten free diet per doctor's suggestion.

 

I'm 17, I suspect that I have celiac or at least gluten intolerance. I began homeschooling two years ago due to being so sickly. We didn't know why I had such a wide array of symptoms.

 

 

My blood test for celiac came back negative and we have yet to hear about the intolerance. I'm still not convinced that I don't have celiac though.

 

Right now I absolutely cannot think. I've been on a gluten free diet for less than a week because my doctor suggested that I try it. I'm certainly not 100% gluten free due because I still use the same toaster as the rest of my family and things like that. There's a chance that I may have eaten a microscopic amount of gluten because I was eating raisins and some other things that were not specifically labeled as gluten free this morning.

 

I have school work to do, I have to write an english paper, I have to do my math work and my tutor is coming later. I'm SO exhausted. I can't even bring myself to think. I just sat there staring at a blank document forever with my head spinning. Now, I'm lying down for a nap until my tutor gets here in an hour.. my mother is mad at me because I haven't gotten ANY work done in the past four weeks because I've been feeling so unwell. My stomach issues have begun to resolve since starting to eat gluten free.. and the brain fog has even lifted... This morning though, I must have had something I shouldn't have.

 

I'm getting a headache and I feel like I'm in a complete fog. How am I supposed to handle this. It's not my fault that I feel this way, I TRIED to work but I can't. I can't even focus on the things that I actually want to do like drawing or playing the guitar. How am I supposed to resolve this before my tutor gets here? How am I supposed to make my mother understand? I'm not being lazy. Does anyone else here ever get a brain fog so bad that they simply cannot work/do school/etc.?

 

I just recently found out I have Gluten Intolerance.  For the first week I felt very sick, but don't worry, it gets better.  I am going through a similar thing with homeschooling.  I have been homeschooled for the past 2 years due to Dizziness and seizures, more than likely caused by the Gluten.  I have been going gluten free for about a month now, and I am feeling so much better, I am going to be able to go back to school.  Don't give up, the first week is the hardest.

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hey! my blood test was also negative, but my biopsy positive. Blood tests aren't that reliable.

 

Your symptoms sound exactly like mine when I react, and yeah, my brain fog gets pretty bad. When you first go gluten free, it's extremely easy to make mistakes, you probably aren't even realizing that you are.

 

In addition to going gluten free (only items that are labeled or their website says gluten free - just because the ingredients look okay doesn't mean it's gluten free) try taking multivitimins and iron. vitamin deficiencies are what lead to brain fog, I believe - if you're a celiac you have a cery hard time absorbing nutrients

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 going gluten free (only items that are labeled or their website says gluten free - just because the ingredients look okay doesn't mean it's gluten free)

 

I just wanted to clarify this a bit for the new folks so as not to confuse or scare anyone...  I believe what Nick is referring to is the possibility of cross-contamination with some products.  In some cases, there may not be any gluten-containing ingredients on the label but certain ingredients may be processed on equipment that is also used to process something else that has wheat in it and the item that should be gluten-free gets contaminated.  Several brands are very good about labeling their products with warnings if they use shared equipment or a shared facility.  Other brands aren't so great about it.  It takes a bit of research in the beginning but you quickly figure out what brands are safe and which aren't - as well as which ingredients are more likely to be cross-contaminated.

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sweetie, if you are still using the same toaster, you are basically shooting yourself in the foot.  YES, a crumb or something you can't even see CAN start a chain reaction in your body.  you need to eliminate ALL gluten from your system, and that includes possibly changing your personal care items such as soaps, shampoos, makeup, etc.  you will also want to use separate kitchen items if you share a kitchen with people who eat/cook gluten containing foods.  do yourself a favor and read the newbie thread - it is in the 'coping' section and it's right at the top.  

 

gluten affects you systemically, meaning it messes up your whole body.  for some of us, it takes days & often weeks to get back to "good".  plus, if you're going through withdrawal now, you won't want to keep perpetuating it!  get rid of it all and i bet you will feel really awesome :)  if gluten is your problem, you will see a huge positive change.  good luck!

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Hang in there.  I hope your fogginess will clear as my 30+ years of fogginess did.  Sometimes when I felt the fogginess the worst, it was just before a break in the clouds!  Have your vitamin levels been checked?  One doctor told me that vitamin B is a big key for fogginess.  Celiac causes the body not to be able to take in as many nutrients.  Digestive Enzymes can be a big plus also.

 

Get Better,  Do your best on the school work.

 

D

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I'm actually getting really frustrated because my doctors don't seem compliant with administering more tests. As much as an endoscopy seems horrible and I've feared the 'cameras-inside-body' thing... I honestly want one done because this could be the reason why I've been SO sick for so many years. I want to ski competitively next year and I need clarity for that. In fact.. I believe that I could be a pretty phenomenal skier if I could just lose the fog. The blood test didn't convince me. My mom is also sick of hearing me talk about it. How can I push to look into everything further?

 

Additionally.. my mother is a HUGE issue. She's getting sick of me talking about it and shuts me up every time I try. She doesn't believe the whole brain fog thing and says that I have to be driving again as of tomorrow. I can't. I don't like driving in general but when I drive when I feel foggy it gets really dangerous. I'll suddenly wind up five minutes down the road and not even remember what happened in the five minutes before. The fog is why I fell skiing and tore my meniscus and fractured my tibia. It's absolutely real and my mother doesn't get it. She's also basically forcing me to eat what she thinks is gluten free. She keeps using the same cutting boards.. and I don't have any other options if I'm cooking on my own because it's all we've got. We can't get a new toaster either until we "know the answer".. but we won't know the answer unless I'm actually eating gluten so I can get tested! I've been "gluten free" for a little over a week. She's also basically got her fingers in her ears when I try to tell her this stuff because she won't believe it until she hears it from a doctor.. but then the doctor told her the same thing that I told her today and I WAS RIGHT.

 

I understand that it can be hard for my mother to deal with all of my health issues.. but it's even harder for ME to deal with my health issues. She tries.. but it's hard when she completely shuts me down when I try to explain something.

 

(by the way.. I'm sorry, I think I put this in the wrong category.. I believe that the coping category would be more appropriate for this thread)

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Hang in there.  I hope your fogginess will clear as my 30+ years of fogginess did.  Sometimes when I felt the fogginess the worst, it was just before a break in the clouds!  Have your vitamin levels been checked?  One doctor told me that vitamin B is a big key for fogginess.  Celiac causes the body not to be able to take in as many nutrients.  Digestive Enzymes can be a big plus also.

 

Get Better,  Do your best on the school work.

 

D

 

I believe that my doctor only checked my vitamin D levels.. which were low. When I got my blood drawn that day last week I recall only seeing three test tubes out of the corner of my eye (I didn't look completely because it freaks me out)... Do doctors only test for one vitamin per tube? Or does one tube address all the vitamins? If it's only one vial per vitamin.. she only tested for vitamin D. 

 

This ties in with in to the frustration with my mother... If I tell her that I want my vitamin B level tested or anything else she'll just shut me up until she hears it from a doctor.. I also don't know why my doctor didn't test me for more things... She hasn't been the best in the past and we had a lot of issues with her when I had mono in 2011... we even considered finding a new GP.. but we never did. I'm sort of at the mercy of both my mother and my GP.. I don't feel like I'm getting the proper care.. and there's nothing I can do about it.

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Depending on the test, they may do more than one per tube. But the doctor has to order it.

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Will you mom read and believe documentation?  There's a lot of information on the Mayo Clinic website as well as others that provide medically-proven information on Celiac.  There are books available too.

 

How soon will you be 18?  Once you're legally considered an adult you should be able to go to the doctor without your mother and advocate for yourself directly with your doctor.

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My husband didn't want to hear more about it in the past either.  Now, he listens some and agrees!  He can sometimes see what is happening!   I guess it is hard enough for we who go through this to understand.  It is even harder for people near us to understand it.  They don't feel it yet. 

 

I don't have all of the answers for your situation but would encourage you to learn all you can.  I hope you can find a friend to share with, but if you don't one or another on the forum has helped me cope many times.  Do what you can.  Keep learning and keep doing.  When you feel better, it will be easier to cope.

 

  You can ask your doctor's office for copies of your test.  I do this with mine and look things up until I can understand and take action if necessary.

 

Can you take some vitamin D?  May as well if you can.

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I totally understand what your symptoms are. And if you are on a gluten-free diet/lifestyle you will unlikely have negative results. Unfortunately you have to have gluten in your system to test pos. The being tired and lethargic will pass, IF YOU KEEP THE GLUTEN OUT. It is so hard, especially being young, and if you have no other celiacs in your life. No one understands that a protein such as gluten can cause all the things you are experiencing. The fog, yes it could be withdrawls but it could also be from contamination. I was on 5+ meds before becoming completely gluten-free and now only taking supplements... What I do suggest for the lack of energy is a vitamin B complex, specifically from the brand RAINBOW LIGHT, it is amazing, I find it at natural grocers, or similar places. If you are experiencing a "fog" or mental retaliation to gluten, I strongly advise to get rid of it. ASAP, as I experienced and some others do, it can turn into seizures or other neurological symptoms...

BE STRONG! It will be worth it in the long run!

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