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Hi there, this is my first post here! I am writing it in the middle of the night because, no matter how exhausted I am, how much (dye-free) ibuprofen I take, I have the worst body aches every day can’t sleep. I’ve avoided gluten religiously for 6 years and my reactions to being “glutened”, while varied, have never been this bad. It happened 4 days ago and where my gut seems to be back to semi-normal, I’m just as sore and depressed and confused as ever. Should I try fasting? Supplements? Nothing I normally do for this is working! Help!
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help Concerned Celiacs or misdiagnosed?
Natalia.Hillz posted a topic in Related Disorders & Celiac Research
I was diagnosed with Severe Celiacs last November plus 2 forms of glaucoma and recently degenerative arthritis. I'm only 22 and finding all this out is exhausting and stressful, well recently I decided to take a break from the gluten free diet and ordered a stuffed crust pizza from pizza hut, a few things from taco bell and a buffet at golden corral! And I have not gotten sick! Maybe I rash but the rash was there before hand, now I'm concerned my doctor was wrong and misdiagnosed me somehow? Before I started the gluten diet I was severely sick, throwing up and couldn't eat, I thought I had cancer, can someone help idk who else to go to, is this normal? Getting sick and then not getting sick? Oh and the rash has been there for weeks doctor has no idea what it is gonna see specialist, auto immune diseases are in family, I did have pelvic inflammatory disease could that of caused something? -
Extreme exhaustion - in son and mom
Chawreluk posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I was diagnosed celiac approx. 5 years ago and have been eating gluten-free. My 15 yr old son was just diagnosed 6 months ago and has been doing well with his gluten-free diet. We are both suffering from exhaustion and he feels brain fogginess at times. I have had problems with b12, low iron and ferritin levels, but the seems to be “normal” and I’m still exhausted to the point I can’t keep up with my family, need naps throughout the day, etc. My son is the same. He’s going to have to pull out of sports until we resolve our problems. Can anyone offer some help or suggestions? Thank you. -
Withdrawal Symptoms?
KathleenH posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Hello everyone. I have only been gluten-free for two weeks now but I felt like by day 6 or so I was feeling decently energetic and okay. Now I'm two weeks in and these last couple days I'm absolutely exhausted, irritable, moody. I know this is super early in recovery but why would I have started to feel decent then bad again? Is it normally like a roller coaster, one day you feel good the next you don't? I know your body needs to heal so it makes sense that you would be tired. I guess im nervous about not being careful enough and glutenating myself and not even knowing it because I dont know what good feels like yet and never feeling better. I also notice lately my anxiety is crazy. I'm thinking this has to do with adjusting to my new routine in the kitchen. I think now that I know gluten is whats been making me sick I'm afraid of it. Is that weird? The other day there were crumbs everywhere in the kitchen and pasta left out with some on the counter from my roommate and I basically looked at it as if there was human feces smeared on the counters. I'm afraid to touch anything and I keep washing my hands nonstop. Is this normal? Does it go away when you get into a better routine? Sorry this turned into more of a rant about various things. Hope you can follow. Thanks guys. -
Excessive Exhaustion, Possibly Cancer Again?
Celiac Ninja posted a blog entry in Celiac Ninja's Blog
A lot has happened since I last blogged. There are obivous reasons for me being tired; I have two kids under the age of 3, I'm a celiac, I've got hypoglycemia...yadda yadda. There are not so obvious reasons; chest pain at night, ache down the arm, lymphnodes swollen up neck (Cat scan confirmed), noduel on thyroid (cat scan confirmed), scar tissue in left cerebral hemisphere (MRI scan). My only concern is the swollen lymph nodes. The experience with lymph nodes was non hodgkins lymphoma. I seem to be an angry bear when I eat or drink sugary stuff. My neck seems to swell up more too. I get a head ache or migrane or am generally not with it. I had an frightening experience the other night, I don't know how it's related to the majority of the postings, but I woke up 2 hours after sleeping and the bone in my forearm was numb. The skin, the muscle was normal but the done inside was totally numb. The are ached real deep, so I just kept moving it like it were a normal numb foot or hand experience. After about a while it got better so I laid back down. I had been sleeping on my stomach with my head turned to one side. I don't normally sleep like that. So...my diet has changed based on those responses. I'm cutting the sugar way down. The sugar I get is from the Silk brand coconut milk (original flavor). I eat fruit, have organic gluten-free corn flake cereal. I'm just really wowing you now aren't I. lol I sure miss sugar. But it does not make me feel better. Not at all. I'm taking: gluten-free Women's NutriGold multi vitamins Swason's copper supplements with vegetable glaze (glaze keeps me from throwing them up) EnzymeScience Intolerance Complex Country Life's Ginseng Supreme Complex Vitamin K supplement when I need it *I need to have a regular exercise. It needs to be every week so that my system has time to work out junk in my lymphnodes. Drinking water and stressing out around the house or sitting on my rear doesn't flush the system like exercise does. Note: it is overwehlming to talk to doctors about my health history. They ask too many questions, I provide too much information. Makes for a depressing day for both people. There is no instant cure. It takes time, experience, knoweldge and lots of prayer. "Keep showing me Lord, I don't want to fall behind. You are my Great Healer, you'll get me there at the right time. Amen!" With more thought to this entry; I'm going to look up some various things that could be linked to the experiences with sugar and the arm bone falling asleep as well as my exhaustion. There is a possibility that I have leukemia. I'm appearing to have a majority of the symptoms except the blood test for white blood cell counts and the bone marrow test. I've had a bone marrow test back when I finished cancer treatments at the hospital, they warned me I would need to have a bone marrow transplant if I had to do chemo again. No thanks. I'd like to do what I can that is provided here on the earth and trust God for healing if He desires to heal me. There could be greater reason for me to suffer and bear my cross than just "find a cure! panic..." that's just futial. What's the purpose of a story that's helps educate others and build their faith if everyone found healing from mankind in the hospital? Hospitals have not always existed, neither have doctors. God has. So let's utilize His healing power and seriously show up this world's view of "cure". -
This is my first post. I guess I'm hoping that someone will read this and be able to offer some advice. Perhaps point me in the right direction.. I was diagnosed March 2013; biopsy showed partial destruction of intestinal villi (Marsh lll), blood test marginally positive. My symptoms did not go away on a gluten free diet, in fact I got so much worse that eventually I couldn't get out of bed and was forced to resign from my job, my career. Bloated & painful abdomen, reflux, abdominal pain, exhaustion (arguably the worst symptom of all), dizziness, muscle weakness, confusion, depression, anxiety. Nothing changed on the diet, no improvement whatsoever. In July I was diagnosed with a bacterial overgrowth and felt a bit better on antibiotics but overgrowth & symptoms returned. I eliminated grains, sugar, starch, specific fruits & veggies which calmed down the abdominal symptoms & I continue to manage the overgrowth by eating this way. But the non-abdominal symptoms remain. In October I was diagnosed with iron deficiency, rock bottom iron levels but not yet anemic. Was also diagnosed hypothyroid. I received iron infusions & started thyroid meds (armour thyroid) and I actually started feeling somewhat better for a month or so....but not so much now. My blood levels are now normal, normal = what they were before I got sick. I've been tested to a ridiculous degree for many many autoimmune diseases. While I have a positive ANA, all other tests are negative. No lupus, no connective tissue disease or any other disease for that matter, and no "tender points" indicating fibromyalgia. The damage in my gut is healed, celiac related antibodies are negative and even on the low end of normal. The only abnormality is my B12 blood level which is blowing off the charts (excessively high, around 2000) and it's been like this since diagnosis. I do not take any supplements since my only deficiency was iron, and I didn't take supplements prior to diagnosis either. Strangely enough, my lingering symptoms are in line with B12 deficiency... At this point I have debilitating exhaustion & I'm having to take naps every day, I have trouble carrying conversations or finding words perhaps because I'm simply too tired to, depression & anxiety not responding to antidepressants, muscle fatigue with racing/pounding heart when exerting myself by doing things like....dishes... Has anyone ever seen or heard of excessively high B12 before? Or is there something else I'm overlooking that I should be checked for? All suggestions are welcome. Unfortunately I can't leave it for the doctors to figure out. Some of them are at least honest and admit to not having experience with celiac patients and the others just look at me like I have 3 heads. I've had to push for blood tests (even for things like CBC and iron levels). I find myself having to educate them about the disease and once I had to explain (almost argue) the reason why I couldn't take a prescription that contains wheat starch... Any help/suggestions/info is most helpful. Thank you! Celeste