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Help with gluten coming out. Painful.

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Hey, all. I'm on the celiac Facebook group but I feel better talking here because I can write way more and it's more discreet. I haven't been diagnosed with celiac, because my doctor had me eat gluten for only two weeks and I was already gluten-free for a while before that test, so it came back negative. In 2010, my endoscopy was normal, just inflamed. Doctor said Gastritis. In 2015, I had a colonoscopy and the gi doctor said my colon is pink and healthy and said 'ibs' 


I have ehlers danlos syndrome, and brain damage, math disability, severe. Learning disability, somatic symptom disorder, Ptsd, panic disorder, agoraphobia. I don't know if these are important for this post, but I like being very honest and detailed. 


When I eat gluten, I can eat it for about three days, and I seem to feel good, really good, almost like a normalcy, like a high on life. Well, I ate gluten meals for a week, I reintroduced it after not eating it for a while. I'm Vegan and I was eating very clean. No sugar, veggies, fruits. After a week of gluten, my stool smelled horrendous like it always does when I consume it. Smells like motor oil, so foul, makes me gag. Stool gets lighter, HUGE and painful, no matter how much water I consume. I get itchy with a fee tiny blisters on my skin, and I've always been very constipated since I was little along with bleeding sores on my scalp. I also get scaly or flaky itchy 'cuts' on the top of my ears, in the inside of my ears. If I scratch at them, I bleed and pus comes out and it's super stingy. 

Joint pains get worse, panic attacks, suicidal thoughts, carpal tunnel, severe bloat. When I wait long enough and quit eating it, I poop a lot and my stomach goes instantly flat. Eating it, I can go from 142 lbs to 150 within a day, not exaggerating. I get so bloated, that wearing even leggings or pajama pants or underwear makes me feel short of breath, it pushes down on my stomach. My hearing is extremely sensitive, with constant ear ringing. I will jump at even the slightest noise. This only happens after I consume gluten. If I over eat on vegetables, I feel pain but ok, but gluten, I end up having panic attacks and feel 'delusional' if I watch a horrid film, I feel like it's going to actually happen. It's crazy, but not eating it long enough, and I feel normal again. 


My stool has started to slowly become darker now, not as light. Mostly after I poop, I have severe pain that can spread from my rectum to my lower right abdomen and even to my hip, and lower back. A nurse assumed I had pelvic inflammatory disease, turns out I didn't, it was my bowels. When I come off of Gluten, I start having chills all over, freezing, then I poop and I'm even colder. I have reactions to potatoes, rice, corn, yams, quinoa, so much pain and bloating. Cannot eat sugar, certain fruits. More than half an avocado and I feel awful. Oats are horrible. Can't eat cream of rice. Any kind of rice. Tempeh hurts me as well. 


I have four teeth that have rotted out and broken off. Thankfully the front one, a dentist filled for very cheap since I was 18. I'm 33 now and it's still filled. I've always experienced tooth aches, infections. When I eat gluten, I can't pass gas, I feel it trying to come out but it won't. I used to be able to and it made me feel way better. I have to also manually remove poop sometimes. I was going normally before and eating it, the rabbit pellets and huge stool started coming back. 


In Feb this year, I admitted myself to the ER for severe pains and anxiety and xrays showed I had stool backed up. I went to the ER five times in Feb and March, and every time, I had large thick stool stuck in my intestines. 


I've had missed periods, and severely heavy painful periods, fatigue, especially after pooping. My finger tips goes numb, my toes go numb and migraines.


After I eat gluten, I'll have sneezing fits about an hour later, and the sneezing lasts for a week and it happens every single week. I know I should avoid gluten, and I am, but I wanted to see if this sounds like celiac or just I tolerance. I'm not seeking medical advice. I've had very useless doctors who can't do the celiac test properly and dismiss my concerns and they all say it's ibs, change my diet. I also think I'm experiencing cross reactive symptoms from foods like corn and rice and potatoes. Also, I cannot ever eat beans. They hurt me severely. Pain, gas, massive pregnant looking belly. 


I just want to know, mostly, when you quit eating gluten, when do you feel better again? I miss myself. :( I've always been kind of sick but I miss even having the symptoms I can manage, not this overwhelming horrible nightmare. Thank you to anyone who even reads this. I don't want to feel alone in this.


I wanted to add that it's been four days since I ate lasgana, not gluten free, and the food ingredients from that dish are still coming out in my stool. 

Edited by Meak

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):

Since you tested on a gluten free diet...they do not count, testing requires you to be eating gluten for 12 weeks to get the antibodies up. Obviously not a option, if it is giving you so much pain, but a gluten challenge might be worth it, your call.


If you are celiac, reactions vary but worst of them can ease off after a few days, but will have other symptoms for months til the antibodies go back down..I heard some take 6 months.

You have some issue with gluten, if you do not want to get tested then going gluten free with the assumption you have celiac is a good idea. Constipation used to be my number one issue growing with undiagnosed celiac...BM every 2-3 days up to 11 days was normal back then. Celiac constipation is normally directly related to magnesium deficiency. The one you must take to fix this is Natural vitality calm, start off 1/4tsp (1-2g) a day and slowly up it 1/4tsp (1-2)g a day til full dose or go beyond til you get loose stools then back back down 1/4tsp (1-2g) this is referred to as dosing to tolerance.

Your neurological symptoms can be from 2 things.
1. Gluten ataxia, where your body might have been attacking the brain in a confused auto immune response to gluten. I have this myself...math can not be done with more anymore, I can no longer do computer programing, and my thoughts would loop like crazy and not move forward when I was on gluten. It also caused nerve damage with loss of feeling, heat sensitivity, and some spinal damage for me it seems.
2. B-vitamin and other nutrient deficiency like magnesium etc. can lead to nerve damage. Celiac means you will not be absorbing it effectively with a damaged intestine. I would suggest a Liquid version like what I take Liquid Health Neurological Support and their Stress & Energy formula 1tbsp each 3 times a day. Also consider their vitamin D and perhaps a multivitamin.

You mentioned recent issues with grains/sugars.....sounds like Ulcerative Colitis that I got. Probably not but I had to remove all grains from my diet, all fruit, sugar. My Ulcerative Colitis would flare up from not just the standard triggers of gluten, dairy, soy, but also the rare triggers of fructose and glucose. For now try a paleo/keto diet removing all grains, beans, soy, fruit. Try adding in more healthy fats like nut butters and seed butters that are smooth and easy on the gut for keeping your calorie up.
Other thoughts to the cause could be a SIBO or Candida issue which would require the same low carb diet to starve off the offenders.

Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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