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I haven't cheated because of how scary the complications of celiac can be. Sadly for me, the last time I got got was on the 13th of this month, which was two Mondays ago. Before that it had been probably 3 or 4 months. I also live in a combined family with one kitchen and while it was a heck of a learning curve there isn't any reason not to be able to stay 100% gluten free doing so. I am two things in my kitchen. First and foremost, I am paranoid. Did someone touch that? Look at it funny even? I keep everything of mine super separate. Second, I'm (to put it bluntly) anal about everything. I clean the counters, twice, with a clean cloth each time before I'll use them. Forgot to put a sticker on the shredded cheese I brought home? Well, idk if someone else touched it so I won't. Someone else opened a package of steaks? They probably washed their hands and dried them on one of the communal dish towels, I won't eat them. Yeah, I'm super anal. Yeah, I may be depriving myself of things I don't need to be. But I also don't get sick.

My recent mistake was due to eating frozen soup I had made in the spring, I didn't realize/remember during that week of hell that I had made the soup after figuring out that what was making me so sick was that someone had put a pizza stone on my cutting boards or I would have thrown it away then. So it was general stupidity this time, not anything I can really blame on someone else.

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I very rarely get glutened because I'm also extremely anal about it. You see, I suffer from Dermatitis Herpetiformis...and when I get glutened, the blistery rash lasts a nice, LONG time because I'm also on thyroid medication that contains iodine. As a result, the IgA antibody deposits stay active for a very long time, keeping the DH extremely active, too.

Anyway, my glutening occurred when I accepted a Baggie of cinnamon from my husband (from whom I'm separated) seven months ago. He said he'd bought too much, and I assumed that he'd bought it from Costco; however, it turned out that he had bought it from a bulk bin at a supermarket :( . So, after I made a nice casserole with the cinnamon that lasted me five days, I kept getting ill every day and was puzzled about why I felt as though I'd been glutened. After the DH started on the third day and kept worsening, I then realized my mistake. Too late! It's been seven months, and my DH is no better. It also caused my immune system to crash...and my breast cancer metastasized to my lymphatic system. This means I'm in Stage IV...so although my death certificate will state that I died of cancer, it was actually celiac that caused my demise. And all because of some cinnamon....

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I wish I could just give you a big hug. Next best thing though... internet hugs. (((((HUGS))))

Celiac kills and live is too short and too precious to waste not being diligent in the kitchen. Hopefully Gemme you'll take this to heart and realize that CC can be avoided and protect yourself. No ones life should be cut short over food. It's terribly tragic.

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I very rarely get glutened because I'm also extremely anal about it. You see, I suffer from Dermatitis Herpetiformis...and when I get glutened, the blistery rash lasts a nice, LONG time because I'm also on thyroid medication that contains iodine. As a result, the IgA antibody deposits stay active for a very long time, keeping the DH extremely active, too.

Anyway, my glutening occurred when I accepted a Baggie of cinnamon from my husband (from whom I'm separated) seven months ago. He said he'd bought too much, and I assumed that he'd bought it from Costco; however, it turned out that he had bought it from a bulk bin at a supermarket :( . So, after I made a nice casserole with the cinnamon that lasted me five days, I kept getting ill every day and was puzzled about why I felt as though I'd been glutened. After the DH started on the third day and kept worsening, I then realized my mistake. Too late! It's been seven months, and my DH is no better. It also caused my immune system to crash...and my breast cancer metastasized to my lymphatic system. This means I'm in Stage IV...so although my death certificate will state that I died of cancer, it was actually celiac that caused my demise. And all because of some cinnamon....

Oh sweetie..my heart goes out to you! It's just awful that this has happened to you. I wish I could take it away from you. :(

(((hugs)))

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I haven't cheated because of how scary the complications of celiac can be. Sadly for me, the last time I got got was on the 13th of this month, which was two Mondays ago. Before that it had been probably 3 or 4 months. I also live in a combined family with one kitchen and while it was a heck of a learning curve there isn't any reason not to be able to stay 100% gluten free doing so. I am two things in my kitchen. First and foremost, I am paranoid. Did someone touch that? Look at it funny even? I keep everything of mine super separate. Second, I'm (to put it bluntly) anal about everything. I clean the counters, twice, with a clean cloth each time before I'll use them. Forgot to put a sticker on the shredded cheese I brought home? Well, idk if someone else touched it so I won't. Someone else opened a package of steaks? They probably washed their hands and dried them on one of the communal dish towels, I won't eat them. Yeah, I'm super anal. Yeah, I may be depriving myself of things I don't need to be. But I also don't get sick.

My recent mistake was due to eating frozen soup I had made in the spring, I didn't realize/remember during that week of hell that I had made the soup after figuring out that what was making me so sick was that someone had put a pizza stone on my cutting boards or I would have thrown it away then. So it was general stupidity this time, not anything I can really blame on someone else.

Thank's for sharing

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I wish I could just give you a big hug. Next best thing though... internet hugs. (((((HUGS))))

Celiac kills and live is too short and too precious to waste not being diligent in the kitchen. Hopefully Gemme you'll take this to heart and realize that CC can be avoided and protect yourself. No ones life should be cut short over food. It's terribly tragic.

People like you around , i will keep myself on Track. Every word in your reply has a meaning for me.

I have made a copy of this and have pasted on kitchen door..............Now they (wife,children) know i have people on my side.........ha...ha..ha..........

Thank you for yr time n reply

May i add you as a friend .

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Oh sweetie..my heart goes out to you! It's just awful that this has happened to you. I wish I could take it away from you. :(

(((hugs)))

Reading yr answer i have tears in my eyes, after long long time i have enjoyed crying. i never thought i will find a family here . Your feelings for me are strength to move forward .

I am very much OK now and looking to start business again where i left it.

Please do remember me in yr prayers .

Thank you ....................BIG Thank you.biggrin.gif

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I very rarely get glutened because I'm also extremely anal about it. You see, I suffer from Dermatitis Herpetiformis...and when I get glutened, the blistery rash lasts a nice, LONG time because I'm also on thyroid medication that contains iodine. As a result, the IgA antibody deposits stay active for a very long time, keeping the DH extremely active, too.

Anyway, my glutening occurred when I accepted a Baggie of cinnamon from my husband (from whom I'm separated) seven months ago. He said he'd bought too much, and I assumed that he'd bought it from Costco; however, it turned out that he had bought it from a bulk bin at a supermarket :( . So, after I made a nice casserole with the cinnamon that lasted me five days, I kept getting ill every day and was puzzled about why I felt as though I'd been glutened. After the DH started on the third day and kept worsening, I then realized my mistake. Too late! It's been seven months, and my DH is no better. It also caused my immune system to crash...and my breast cancer metastasized to my lymphatic system. This means I'm in Stage IV...so although my death certificate will state that I died of cancer, it was actually celiac that caused my demise. And all because of some cinnamon....

This is the second most difficult reply or letter I have to pen down, first was long time back in 1976.

Your reply was with me all day and night and I do not know how and what to write you, I thought I am the only one on this ill-fated train of life. Before reading yr reply I always asked myself……………why me ? and since yesterday it is like , why me , why you …………..why us.

They say, The treatment is really a cooperative of atrinity--the patient, the doctor and the inner doctor.

-- Ralph Bircher

My prayers and wishes are there for you for your speedy recovery.

Good Luck

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What a sweet thread.

It sound to me like it takes educating our family members just as much as ourselves.

The more others RESPECT the gluten-free lifestyle, the easier it will be for everyone.

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I cheated. I bought peanut butter. The first tube didn't cause me anything. But I noticed the second gave me the funkies in the stomach.

I thought it was temporary and ate yet another spoon full of it yesterday.

My guess was wrong. <_<

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I cheated. I bought peanut butter. The first tube

didn't cause me anything. But I noticed the second gave me the funkies in the stomach.

I thought it was temporary and ate yet another spoon full of it yesterday.

My guess was wrong. <_<

I'm not sure where you live, but I have never seen a PB with gluten in it.

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I have also never seen peanut butter with gluten in it.

Amendment. I have never seen peanut butter that comes home from the store with gluten in it.

While I suppose it's possible some off brand or another I've never seen may be susceptible to CC, it is a naturally gluten free food. Yay!!! (I still advocate reading every label, every time, and calling every manufacturer about manufacturing processes.) The key is that it is never okay to share peanut butter with evil doers... um... I mean gluten eaters in your house. Well, with gluten eaters anywhere really but I suspect the ones we live with are the problematic ones. The really cool thing about this is you can put your name all over a jar (or in my case my special stickers) and then double dip all you want and no one can complain because they can't be using it anyway. Hah!!!

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By the way Gemme... too late I friended you first. Neener neener neener :P

I hope that your family will take those words to heart. We should all cherish those we love and do what we can to protect them.

I didn't say this before but I like the idea of sharing how we got gotten. Not to whine and moan about it, but because it can help others avoid the same mistakes. I did something stupid and idiotic. I even wondered to myself as I pulled that soup out if I had been anal enough in the kitchen when I made it that I would trust me from then. I suppose I shouldn't have!

If we're all perfectly honest, most of us wouldn't trust each other. There are a few veterans around here I'd trust with my life to cook for me, but other than that I don't know any of you from Adam. I wouldn't expect any of you to let me cook for you either. Heck, I wouldn't trust my best friend to microwave a bag of popcorn for me. (I'm seriously not kidding.)

I eye everything with suspicion. My MIL (that's who I share a house with) opened a package of ground beef, I wouldn't eat the other half. She doesn't understand CC. I don't know what she touched. She got PISSED. She was like "I didn't touch it with bread or anything!" You didn't have to. All you had to do was wash your dishes, wring out your dish cloth, then dry your hands on your dish towel while still covered in only god knows how much gluten. Now next time you dry your hands you're covering yourself with gluten and BAM I get sick from eating that beef. Pass.

I eye small children with suspicion. Toddlers spend their days walking around with Cheerios and pretzels. Then they get their little hands washed but keep putting them in their gluten contaminated mouth and touching everything. Not me! No thanks! No, I do not want to hold your gluten eating baby. No I won't pick up your gluten eating toddler's toy they dropped until I've fished a tissue out of my purse. Sure, they're cute and all and maybe I'm too anal but they're CC nightmares. I'm scared to death of children. There. I said it. I am afraid of small gluten eating children who put their hands in their mouths.

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So I have to mark my territory. :lol: I already stopped sharing the butter butter because people in my house threw bread crumbs in it... Whoever touched the peanut butter will suffer my wrath, then.

It's an almost full tube, though.

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Rosetapper23 (((HUGS))) Best wishes to you.

I was last glutened about a month and a bit ago when I ordered a daiquiri and cedar planked salmon with roasted carrots and potatoes with a side greek salad from the gluten-free menu from a supposedly gluten-free savy restaurant. I have no idea what was cc'd but something got me good and it took about 2 weeks to feel really well again.

Before that was a supposedly gluten-free beer. I didn't read the label past "gluten-free" until I started to get a stomach ache. then i noticed that it was started from barley but they somehow removed the gluten to less than 3 ppm. I guess 3 parts per million is too much for me or they didn't do as good a job as they thought. LOL

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Rosetapper23 (((HUGS))) Best wishes to you.

I was last glutened about a month and a bit ago when I ordered a daiquiri and cedar planked salmon with roasted carrots and potatoes with a side greek salad from the gluten-free menu from a supposedly gluten-free savy restaurant. I have no idea what was cc'd but something got me good and it took about 2 weeks to feel really well again.

Before that was a supposedly gluten-free beer. I didn't read the label past "gluten-free" until I started to get a stomach ache. then i noticed that it was started from barley but they somehow removed the gluten to less than 3 ppm. I guess 3 parts per million is too much for me or they didn't do as good a job as they thought. LOL

Yeah, the barley gluten-free beers are controversial. If I remember correctly, the testing they use isn't as specific for barley gluten as wheat gluten...so there's always a chance you're getting quite a bit of gluten. There are lots of threads on here about that testing and beer. Search for them and see if I remembered that correctly.

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RoseTapper, my heart and prayers go out to you. When my dear friend Kelly went through this, I kept looking for my magic wand that I seem to have misplaced. I wish I could find it so I could help you. Please know that not only are your family and friends with you, but your online friends as well. ((((((HUGS))))))

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Ah, the last time I was glutened was 2 days ago. Still suffering; D has quieted down but still have cramps (especially after eating!), tired and irritable! It was my own stupidity. Pressured into going out to eat somewhere with visiting parents (who are in their 80's and clueless about cc). After trying, again, to explain it I gave up. I was already exhausted, had the absolute worst day at work and was starving-I was really in just a weak state of mind. Even though I ordered a steak (no seasoning) and baked potato, I'm sure that the steak was cc at this steakhouse. Within 30-45 minutes my tummy hurt and bloated like I was 7months pregnant. I awoke @5am running for the bathroom-7 trips later (before 10am) it started to subside.

I already visit them less, cause they just don't get it (and are pretty hard headed LOL). Next time I will just go with them and order a glass of wine and tell them I ate at work! (then go to the restroom and gobble down a larabar! LOL)

I don't know how long I'm going to feel like crap- any other glutening incidences were sneaky accidents so it took me a while to figure out what was going on. I guess I'll use this as a learning experience.

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OMG you're hilarious. I just imagine someone running around your kitchen with a bag full of bread crumbs throwing them in the air and prancing around. Opening jars and flinging some in.

The wrath... may it be swift and without mercy.

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My guess nvsmom with that fish would actually be the cedar plank. If the restaurant also prepared gluten contained things on the cedar it would be all sorts of gluteny. No matter how much you scrub and how much you clean, there is no getting the gluten out of wood. Of course, this is all just me guessing also. It could very well have been something else entirely but I'd be way too scared to go near something "planked."

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What kind of peanut butter comes in a tube? Sounds like a cool idea; I've just never heard of it.

My last glutening was my fault. I love Abe's Barbeque in Clarksdale,MS. Last time I had a chance to go, I thought I would be really smart. I took my own Udi's bun and ordered pulled pork and slaw. Standing at the counter to pay (after eating my delicious sandwhich), I saw them heating the pork AND the buns on the same flattop grill. AAAARRRGGGGG. Yep, I have had the bad D for a week now.

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OMG you're hilarious. I just imagine someone running around your kitchen with a bag full of bread crumbs throwing them in the air and prancing around. Opening jars and flinging some in.

The wrath... may it be swift and without mercy.

That's how I think they do it. So many bread crumbs *rages*

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I glutened myself Friday and I knew it would happen. I made the glutens of the house a loaf of homemade bread. Either the inhaling of the flours, the residue of the flours on my lips, or cc'ing myself by touching things I shouldn't after making the dough is what got me. After reading so much on here about cc and the best ways not to gluten yourself, I should have known better. DH knows that loaf of bread was "expensive" for me and there will not be another one made by me. He is also eating that loaf very sparingly :)

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What a sweet thread.

It sound to me like it takes educating our family members just as much as ourselves.

The more others RESPECT the gluten-free lifestyle, the easier it will be for everyone.

Teaching is a two way traffic, i hope you understand my point...........

It should be as you say but..................

I tried but,................. no luck , in a society where Doctors are not updated with Celiac , how come Ordinary people can sail with updated knowledge.

My whole family is Celiac 3 children, wife.....................but they don't listen...........

I feel lucky being here and everyday i learn something new

Thank you for yr reply n time

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    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
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    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics

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    • Hello I’m just curious if anyone else had lightheadedness/dizziness when they quit gluten. This is my 4th week now and I still have these short instances where my head will be a bit dizzy, or just a bit slow when I move; it’s like it’s in slow-mo.  Like really mild vertigo, has anyone else had this or should I be worried? As I’ve had chronic pain for years now, and I’m a bit worried somewhere deep down I have an autoimmune disease. I never had the issue before quitting gluten, which makes me think it is that.  Thanks for your input
    • Knitty is onto something, your probably in a bad mind set with deficiency issues right now. I do chef work, run a gluten free bakery, and over all quite enjoy hosting for people. Meals are simple just omitting the gluten sides and still quite good.

      But yeah keeping eating gluten you could get other issues and made worse....what if your intestines rupture and you have ot use a poop bag on your side? What if you get UC like me and can not eat sugars/carbs without distending and pooping blood (try that anemia I was at a 2 iron wise). What if like me you develop severe allergies to other foods....like corn....its in everything..... STAY gluten free or it will get worse, supplement for now with things you might be deficient in to get your mood up.
       
    • Yeah gluten removed beers are not safe for celiacs. Try a non gluten based one or hard liquor not made from gluten grains. Pain is we can not even accurately test for gluten in these things due ot the fermentation process partially breaking down the gluten proteins. But our bodies still in many cases recognize the protein and it triggers our immune systems to attack.

       
    • All the health issues you listed are related to Vitamin D deficiency!!!!!  Vitamin D deficiency is also responsible for that feeling of hopelessness, depression.    Have you been checked for vitamin and mineral deficiencies?  How are you correcting your anemia?   Celiac Disease causes malabsorption which results in malnutrition.  Celiacs have a problem absorbing fats and fat-based vitamins like vitamins A, D, E and K.  Celiacs often have B12 deficiency anemia because they can't absorb vitamin B12 sufficiently.  There are eight B vitamins that have trouble being absorbed because of the damage to the small intestine caused by Celiac Disease.   Absorbing minerals, like iron and magnesium can be problematic as well.  Iron deficiency anemia may result.  Magnesium deficiency affects your glucose levels in prediabetes and diabetes, muscle action and more....   Here are some studies on vitamin deficiencies and your listed health problems.... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855626/#!po=49.6429 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4165016/ https://www.ncbi.nlm.nih.gov/pubmed/21375201 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3916184/ https://www.ncbi.nlm.nih.gov/pubmed/23337162 Doctors don't recognize health problems caused by vitamin deficiencies.  They're trained to treat the symptoms, but not trained in finding the cause.  I know from personal experience.  I had a laundry list of health problems (including the ones you listed and more besides).   Only after ascertaining that my insurance would cover the cost did my doctor agree to humor me and test my vitamin D level.  It was ridiculously low at six.  Boy, was he surprised!  "Normal" levels are 35-40, but this is too low.  Eighty or above is better. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3798924/#!po=17.9245 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3741914/#!po=23.1481 Once I began supplementing vitamin D, B complex and the other fat soluble vitamins and minerals, my health improved.  I also followed the Autoimmune Protocol diet (AIP). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/ Please don't go back to consuming gluten.  You can improve your health!  You can have a new life!  Different from your "semi-normal" life, but so much better and healthier!  Please get checked for deficiencies and try the AIP diet for several months.  You'll see improvements.  Be encouraged! 
    • As still you are on gluten free diet.  You should go for gene test of celiac disease; HLA Typing Class II. Because for gene test it is not required to be on gluten diet. If you test come back positive then you should go on gluten diet for at least 8 weeks to go for blood tests of celiac disease which includes TTG-IGG, TTG-IGA, Total IGA, EMA -IGA, AGA (ANTI GLIADIN ANTIBODIES ). Best of luck 
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