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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.

How Do Your Glutening Symptoms Compare To Pre-Diagnosis Ones?
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I'm just wondering if people feel like their glutening symptoms are similar to those they experienced before they were diagnosed and ate gluten regularly.  For example, if you had issues with DH before diagnosis, is that still your main symptom if you get glutened?  I have been as gluten-free for a month (but may still be getting CC'd, I need bloodwork) and have NO idea what to expect from glutening.  Before diagnosis I had no consistent symptoms except maybe stomach pain on occasion. It's pretty upsetting to think it could go from mild and bearable to severe and interfering!  :wacko:

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A lot of celiacs say it takes about a year to fully heal, so you might experience some glutening symptoms as you heal. (I recommend keeping a food log because it's the best time to discover any possible food sensitivities.)

 

Anyway, my symptoms pre-diagnosis were much worse than if I get glutened now. It only takes some cross-contamination to trigger symptoms though. Typically it's rumbles/gas and exhaustion. I can't speak for DH. 

 

I do remember thinking the same thing...kept hearing how symptoms would worsen the deeper I'm into the diet. However I don't find this to be true. The symptoms aren't worse but I've become much more sensitive.

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My symptoms before gluten free seemed very mysterious.  I had nearly constant brain fog and insatiable fatigue.  I swelled and bloated.  I wasn't "sick" enough to be able to rest, but it was so very hard to act normal.  Now, having been gluten free for months I get cramping and diarrhea several hours after my mistake.  I consider this much easier to deal with.  It helps me make sense of what not to eat again.  It is however, more intense and I am unable to work through it.  The day after the experience, I notice swelling and dark circles under my eyes.  I also have a reoccuring itchy spot on my neck.

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I thought I was imagining the itchy spot on my neck last time I was glutened. It was right by my collarbone.

 

I had a plethora of symptoms before going gluten-free relating to malfunction of every organ. When I get glutened now, I usually know right away. Usually I get all the GI symptoms first. Sometimes I get kind of sweaty for a bit and then I'll usually have insomnia that night and brain fog the next day. If it's a CC issue, it's usually a very mild reaction and I'll get tired and have a headache. However, when I discover a new intolerance, my pre-gluten-free symptoms return very slowly until I start to notice them and then I have to figure out what food is causing it. One of the times I discovered a new intolerance, I was having trouble sleeping, my left arm went numb occasionally, itchy feet at night, night sweats, joint and muscle pain, brain fog, anxiety, GI problems, headaches, fatigue, and more. It's all really weird.

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Apart from the persistent sores all over my skin I used to end up on the toilet with huge pain at 2am not even knowing my name or if I was alive or not... quite a strange thing, then I'd slowly become lucid again and then go back to sleep :P. These days gluten has almost no effect on me whatever other than ruining my gut more which I'm still trying to fix. Plenty other foods give me worse problems than gluten now but it was the original cause.

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Mine are pretty much the same too. No worse but no better.

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The ones I had before diagnosis are pretty much the same (migraines, fatigue & irritability).  But I've got a bunch of new symptoms, mostly stomach related, that I didn't have pre-diagnosis (bloating, cramps, gas, C and/or D).  I also get a rash on my rear end that I never had before.  Don't know if it's DH or something else, but it comes pretty reliably a few days to a week after I get glutened.  I've also gotten much more senstive to gluten, so I'll get symptoms with just a little contamination, and it'll take a few weeks before they're completely gone.

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I did not have obvious symptoms when I used to eat gluten.  In retrospect I can attribute things to it such as miscarriages.  Now when I get glutened (it happened once a month or so ago) I get very ill, vomiting, diarrhea, migraine and sinus problems.  At least now I know what to expect! 

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Thanks everyone for your responses, it looks like it really runs the gamut.  It looks like things get less chronic and more acute though.  I'm sure I'll be back at some point to add how glutening compares for me.  :(

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My symptoms definitely went from chronic to acute.

 

Before, I constantly felt bad. Diarrhea, eye-ataxia, a whole host of stuff attributed to low vitamin levels (covered in bruises, no night vision, brittle/thinning/faded hair), random migraines, bloating, constant hunger, weight gain. My stomach area would hurt most days, leading me to be curled up in a fetal position. I also got very confused after eating, and I was constantly exhausted.

 

Now, I have rolling queasiness and nausea starting about 15 minutes after getting glutened. It's much stronger than any stomach problems I had before going gluten-free. Sometimes I still have migraines, ataxia (eye, speech, walking, using my hands), a "high" feeling, confusion, and either constipation or diarrhea after a glutening. Everything goes away in a few days, though, and all my long-term problem (like vitamin deficiency) are gone. I feel mostly fine between glutenings. Lots of things have improved.

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Somebody here once said something like, "the food's I was addicted to and binged on are now the foods that I can't tolerate and cause me problems."  I would like to second that.   I can't even eat dark chocolate anymore.

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I've developed what only makes sense to be DH on one of my fingers, and I get peripheral nerve pain if I've passed some low threshold of gluten. I seem to get tooth and gum pain (just nerve pain in my mouth instead of extremeties) a day after I have been glutened. I once got bumps on my neck and lower skull and ears.

I'm still not over the mental problems being gluten free, but suffice it to say I don't notice any difference there if I've had gluten. Any change in my emotions or tiredness is all better explained through things like PMS and caffeine or alcohol or changes in sleep patterns, and they don't often coincide with the nerve pain.

 

I did have a chronic pain in my colon before being gluten free. And peripheral neuropathy that was constant. My bowels were never really bad before and aren't terrible now. They're not great either. My intestines aren't healed anywhere near to full yet though.

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