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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? - 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

Does This Sound Like A Gluten Sensitivity? In Desperate Need Of Help.
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Hello everyone,

The past 5-6 years I have been struggling greatly with awful depression, anxiety, ADD and inability to learn new things. My self esteem has plummeted to an all time low, which is saying something considering my highschool years. I have been in college for a few years now, and while my first couple of years went pretty great since I took very easy classes that mostly required logic or english, which is something that I'm usually good at, I am now having immense struggles keeping my grades up because it is just impossible for me to remember what I need to. I've even failed a couple harder classes, I just simply could not keep up with the reading and the memorization. For a couple years now I've just been thinking it was my intelligence, that I was cursed with a much lower IQ than my peers and that's why everything is so much harder. In my desperation I have been researching all I can to find out why this is happening. My mom has a gluten sensitivity, although most of her symptoms were physical ones, but she inspired me to look into the possibility of me also having a gluten sensitivity. I think maybe this could be causing some of my problems. I plan to go gluten (and mostly if not all dairy) free in a couple weeks when I have some extra money for gluten free grocery shopping. Below I have listed some of my everyday difficulties... Can anyone with a gluten sensitivity relate?

While cooking I'll read an ingredient from the recipe, walk to the cupboard to get it and by the time I'm there I've forgotten what I'm looking for

Stopped watching movies because 20 minutes into it I'm already lost because I can't remember what has happened

Dislike speaking to anyone I'm not close with since I often have to struggle for the right words or the pronunciation of words. I have to really think hard to form responses. Am absolutely terrified of public speaking as a result. I have also avoided interacting with new people for a few years, the few friends I have I have only gained because I was somehow 'forced' to spend time with them.

Am always tired, could literally take a nap every 2 hours that I'm awake

Have to reread paragraphs in textbooks at LEAST twice, often up to 4 or 5 times before the info sinks in. But by the next page it is gone.

Will look at the time and 2 minutes later have to look again because I have forgotten what it was

Overwhelming anxiety comes on quickly and without warning, so bad sometimes I throw up

Dislike driving; completely avoid left turns because I'm afraid I won't be paying enough attention and oncoming traffic will hit me; dislike 4 way stops, hard for me to remember when it's my turn

Often feel shaky, light headed, and my heart beats quickly

I have been diagnosed with ADD and anxiety (I understand that instead it could just be a food sensitivity) and have been on Adderall and various depression/anxiety medications for the past few years (depression medication since I was in high school and had SEVERE depression which landed me in an ambulance/72 hour psych ward stay after an overdose) , which worked great the first year, but has lost it's effectiveness.

I am definitely addicted to gluten products. In fact, growing up I ate WAY more gluten than anything else, my mom wasn't a big meat eater/cooker, and I probably only ate the recommended amount of protein once a month or so. Now it's probably a couple times a week that I eat enough protein, due to the fact that my fiance is a big meat eater. But I literally used to only eat carbs day in and day out, with lots of dairy products. I have recently discovered I have a dairy sensitivity that has been causing most of my near constant headaches. I can handle limited dairy, say a bit of shredded cheese and sour cream on tacos, but if I eat more than that in one day I have bad stomachaches and headaches for the next day.

Can anyone give me some insight please? I'm so, so desperate. I am returning to school this fall after a year off and will do anything I can to make my last couple of years easier and to get better grades.

Thank you so much in advance!!!

--Sara

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Incredible what food can do sometimes. All your symptoms could be food-related.

Sometimes it's easier than others to find out.

Why bother "handling limited dairy"? Find out what happens w/ zero dairy.

Gluten is more complicated in that testing doesn't really work once gluten-free.

Btw, I've done all your 'brain fog' examples myself & it went away after gluten-free, dairy-free & soy-free. Even had a class (after 2 part-time semesters of all A's) where I was fine when it started & could barely frame the path to a solution by the final.

If food's the problem you can find the answer.

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I've had many of those symptoms myself. Very frustrating isn't it? You should get the full Celiac blood panel right away if you're still eating gluten foods. You could have these symptoms due to gluten intolerance?

Some of your symptoms could also be due to malabsorption or your diet in general? You seem to be lacking in protein/meats which have essential amino acids and the DHEA, ALA, and EPA (omegas) that your brain needs for proper function. B1 (thiamin) affects your brain too.

I hope you are taking a good multi-vitamin, fish oil, and D? If not, you should add them..and please do get some tests?

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Wow, I could have written almost your post exactly when my autoimmune thyroid disease flared two years ago. Memory problems, severe concentration problems, dizzy, heart palpitations, anxiety attacks, tired, depressed, I also gained weight. On top of that I had developed a dairy sensitivity that was really adding to the fog and fatigue. Has anyone done a thyroid panel on you, especially one with more detail than just TSH?

It's worth trying gluten-free/dairy-free though it's ideal if you can get your Dr. to run a celiac panel before you go on the diet. You can't be tested for celiac gluten-free. Gluten-free does not have to be expensive if you eat naturally gluten-free foods like rice and potatoes. It's the gluten-free processed foods that wreck your budget.

I am doing somewhat better now, but I am still not quite myself most days so I can really empathize. Acupuncture has helped dramatically with the depression, and my acupuncturist is also coaching me on general coping skills. I'm working on figuring out some food chemical sensitivities because after keeping a food diary I noticed my worst days were 24-48 hours after eating foods high in tyramine or natural MSG like miso, red wine, aged cheese, or chicken liver. I'd strongly suggest keeping a food diary because it can be really helpful.

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Why bother "handling limited dairy"? Find out what happens w/ zero dairy.

I said that because I was entirely dairy free for almost 6 months and when I started to add a little back in I saw no difference. But you're right, I should just eliminate it completely again with gluten to be sure.

I hope you are taking a good multi-vitamin, fish oil, and D? If not, you should add them..and please do get some tests?

Yes, I take all of those supplements. I've been hearing things about the possibility of B12 deficiencies also lending a hand to brain fog though, so I am going to be adding that in to my daily supplements too.

Has anyone done a thyroid panel on you, especially one with more detail than just TSH?

It's worth trying gluten-free/dairy-free though it's ideal if you can get your Dr. to run a celiac panel before you go on the diet. You can't be tested for celiac gluten-free.

No, I have never had a thyroid panel done but I will look into it more.

I think I am going to have to try out the gluten free diet before getting tested... I am just a poor college student and I am assuming celiac panels are not covered by insurance? And anyways, if I'm feeling better after a few weeks of being gluten-free it must be working right? Regardless if I'm positive for celiac or not I'd want to stay on the diet that makes me feel better.

Thank you everyone for your responses. I am definitely going to look more into things that you suggested and I am encouraged that maybe by eliminating gluten I will start to feel better!

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I think I am going to have to try out the gluten free diet before getting tested... I am just a poor college student and I am assuming celiac panels are not covered by insurance? And anyways, if I'm feeling better after a few weeks of being gluten-free it must be working right? Regardless if I'm positive for celiac or not I'd want to stay on the diet that makes me feel better.

Celiac panels ARE covered by insurance. You should be able to get at least at TTG test through your campus health service. They can also do thyroid testing for you, which I think is really important.

If you go on the diet and it helps you will always wonder about celiac and the only way to find out is to re-poison yourself. Get the test now, while it's easy! :)

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Sara2200, I was dx on March 27th this year, and have been gluten free since...I have MANY of the same symptoms that you do too. Running upstairs to grab something and by the time I get there, whoosh its gone!?!? I love reading novels, and I just finished reading one last night that was 600 pages +, a who dunnit, but the time I found out "who did it" I couldn't remember that particular person, making the whole book redundant. I don't know if my problems are celiac or not, but I sure hope that continuing on the GFD that they will subside. I just figured that Im getting old! LOL 39 yrs OLD! Have had this for a long time though, and I totally get how frustrating it is. It affects your relationships and everything.

I agree with everyone else, get the bloodwork done BEFORE you go gluten free...then you'll know for sure. I never thought in a million years that mine would come back positive, but there it was! Its worth finding out, if even just for your peace of mind.

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I've had many of those symptoms to - in fact I was told I was nuts for years and years before finding out I had Celiacs disease. Sounds like Celiacs and some hypoglycemia going on also. Regarding the memory issues, many of us have sever nutritional deficiencies. My Neuro put me on L-Methyl Folate for the brain fog.

Good luck. Most of it will resolve with gluten/grain/sugar free and nutritional supplementation. ; )

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I tried cutting out all grains and low-carb and felt even worse, I don't get it, read about it and it seems that you need carbs for serotonin-production, went back to carb and felt better initially and then worse again, nothin seems to be working =//

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Thanks for the responses!

I went in yesterday for a celiac panel, so hopefully I'll have those results back by the end of this week. As of today, I am going gluten free. Whew. It's gonna be tough, but I am SO ready to change my life.

Thanks again for all the thoughts and suggestions, I truly appreciate it.

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Great! I'm glad you were able to get the testing. Ask all the questions you need about the diet. I hope it helps.

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Well they finally called me and left a voicemail this morning saying that my celiac panel is negative... However I've been gluten free since the 18th and after some miserable withdrawal days I think I'm finally starting to feel a little better, so I think I must have some sort of sensitivity.

What I was wondering is, and pardon my ignorance, but shouldn't there be different levels of things that could maybe be interpreted better by more of a specialist instead of just getting a negative or positive answer? Should I call back and request that they send me those details?

Thanks. :-)

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Do get a copy of the tests. See if they even ran any Celiac tests. I remember someone who was told her Celiac tests were normal and they hadn't even run any. They didn't know what they were talking about.

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Do get a copy of the tests. See if they even ran any Celiac tests. I remember someone who was told her Celiac tests were normal and they hadn't even run any. They didn't know what they were talking about.

Oh my gosh, wow. That's ridiculous. That has me wondering since I was mailed the results of a thyroid stimulating hormone and basic metabolic panel (both normal), but obviously not the celiac panel, and I had to call to get those results. I did leave a voicemail for the assistant requesting that she mail me the specific details of the result so hopefully I get those soon. The NP I saw (maybe a mistake to have seen a NP but I heard such great things about her helpfulness when it came to more untraditional methods of healing) mostly dismissed me having celiac since I didn't have frequent diarrhea or constipation, but she said she would run the test so I could know for sure. I'll really be irritated if in fact she didn't order the celiac panel as I am definitely NOT wanting to go through withdrawals again or put off feeling better any longer!!

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