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!
How Do Your Glutening Symptoms Compare To Pre-Diagnosis Ones?
Posted 19 March 2013 - 06:18 PM
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.
Posted 19 March 2013 - 06:53 PM
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.
Posted 19 March 2013 - 07:26 PM
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.
Posted 19 March 2013 - 07:30 PM
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 . 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.
Multple food intolerances last 25 years
High Eosinophilia last 20 years
Suspicious cervical lymph node 2006
Gluten free 2010
Grain free 2012
Started long term Zyrtec for IgE and eosinophils in the gut
Ongoing 2006 node confirmed Kimuras disease 2013
DQ2 positive, DQ5 and DQ8 negative.
IgE level 4100 in Oct 2012, currently 1900 in Feb 2013
Posted 20 March 2013 - 06:29 AM
Mine are pretty much the same too. No worse but no better.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hashimoto's - August, 2012
Posted 20 March 2013 - 07:44 AM
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.
Posted 20 March 2013 - 03:55 PM
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!
Confirmed celiac disease February 2011 from biopsies (had both gastroscopy and colonoscopy). Strictly gluten free March 18 2011.
Diagnosed with fibromyalgia April 13 2011.
3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.
Osteoarthritis in back and hips.
Chronic insomnia mostly due to chronic pain.
Aspartame free May 2011.
Dairy free August 15 2011. Can tolerate aged cheese Jan. 2012. Cannot tolerate much cheese at all 2013 so am eating lactose free cheese and drinking lactose free milk.
When our lives are squeezed by pressure and pain, what comes out is what is inside.
Posted 21 March 2013 - 03:41 PM
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.
Posted 21 March 2013 - 06:27 PM
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.
Posted 22 March 2013 - 01:44 AM
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.
I ate a hi-gluten banana fritter from Whole Foods, and it was all down hill from there.
Posted 22 March 2013 - 05:54 AM
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.
June 2012 positive visual of celiac disease from gastroscopy
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