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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I was sad to read on the label of the Trader Joe's Pink Himalayan Salt grinder that it is processed on a machine that processes wheat. :-( I guess I now have to read the label on things that should be a no brainer.
I'm not on any medications. I will see the liver doc and a immunologist in the next two weeks. Overall am feeling better though I begin to have foot and joint pain along with "attack" symptoms when I get glutened. I was shocked to find out that Trader Joe's pink salt is processed on a machine that processes wheat. Also, sashimi can still be cross contaminated from a cutting board or towels the sushi chefs use. I may never eat out again! I knocks me back over and over!
I'm beginning to wonder if I shouldn't try an SCD diet for six months since I seem unable to eat grains, soy, coconut, dairy, eggs, honey, many fruits, tomatoes, etc. My diet is so limited and restricted right now. Frankly, I'm afraid of food at this point.
I've read that it may take a year to recover and being to add some of the above items back in but I really wonder if anyone fully recovers on a gluten free diet or if there will always be some lingering fatigue and stomach issues. ugh!
Thank you all for the posts. I'm starting to feel a bit better. I haven't had an "attack" for two weeks. I did eat some gluten-free pizza at CPK and threw up but rebounded by mid day the next day. I'm still quite fatigued and somewhat brain fogged but dry skin, yeast and sciatica are my chief complaints right now. I will go for the endoscopy and biopsy after the holiday. Fingers crossed we get to the bottom of this. No matter what, the elimination diet and gluten-free eating are here to stay. When I now reflect back on all of the times I've had a stomachache or what I thought was food poisoning over the last few years, I'm amazed that I didn't figure out it was the bread. All this time, I thought it was something else. Ugh.
(not 100% sure about the last result - it has the same collection date/time than the 3rd one - maybe this is after they administered a Cortisol shot to test my response to it - the first time they tried to give me this test I thought it was going to kill me! My chest got hot and tight so I asked them to stop)
Thank you both for the replies. I'm touched that you would take the time out of your Thanksgiving holiday to show your support. I have considered that the source is something other than gluten foods. I'm now on a meat, avocado and potatoes in jackets diet down from the mixed veggies, meats, and avocados. I'm drinking Aloe vera juice and mixed greens in between small meals. I'm also drinking herbal or green tea with Stevia. I've quit the green tea to get rid of the headache after staying up for two nights. I've recently replaced my hand soap, shampoo, cutting boards, and wooden utensils. I don't wear cosmetics but have lip gloss with soy bean oil. Should I discontinue that? I've also been receiving castor oil packs for my abdomen - I don't notice any results there but don't really care for those packs. Any other thoughts and suggestions while I wait in purgatory? I'm hoping for genetic results and a new liver panel on Monday or Tuesday. I'm striving to enjoy endless hours of historical drama.
Thank you both for your replies. I will look at my blood tests today. I just spent yet another night completely awake, terrified to sleep with the shortness of breath that I'm having. It scares the heck out of me.
I can't go back on a gluten diet. I'm certain it will kill me. I will go with the genetic test results and try to figure out why I'm still having attacks believing that I'm on a gluten-free diet. Can the glutening last 3 or 4 days?
I do know that I'm sub-clinical hypo-thyroid and my liver panel is five times the normal level. The not knowing is getting to me as much as the symptoms. I don't know how long I can go on like this. It's so disheartening and scary.
I will look into the magnesium today and some gluten-free probiotics. I'm hopeful I can get a referral to the Celiac center without a biopsy. Fingers crossed. Thank you again for your replies and support. I'm freaking out alone while everyone else sleeps the night away. :'-(
I've never had this happen to me until my recent hospital visits related to celiac disease. It is now a recurring thing despite being gluten-free for nearly two weeks. It's very scary and I'm finding that I'm totally sleep disturbed since this has all been going on. I've been awake the majority of nights for days on end after gluten attacks. I feel like I'm in a nightmare sequence. I'm awake with panic and shortness of breath truly afraid that if I fall asleep that I will die. When I finally start to dose, the paralysis sets in while I'm still awake. it's very scary.
Over the last 28 days, I been in the ER 4x and hospitalized once. It all started with what I thought was a heart attack and me being whizzed away from my home and six year old in an ambulance. When released from the hospital the last time, I was told they suspect Celiac disease but weren't sure what's wrong with me. They suggested I go gluten free and that if I felt better, then I'd know what it was. Since being home, I received the blood tests which were all negative but with liver numbers five times what they should be. I'm awaiting the results of Celiac genetic testing (I have five family members on my mother's side that have Celiac disease). I am also seeing a liver and GI specialist next week. No one knows what is going on, least of all me.
This has been an absolute shock since I've never been ill before and have not been able to work since the "attack" early this month. Also, after going gluten free 12 days ago, I took a Tylenol Extra Strength for a mild headache and joint discomfort which instigated a new round of "heart attack" symptoms and subsided the next morning but left me with what feels like a spike through the left side of my head. Do any of you share a similar story or have similar symptoms? I'm thinking I want to forgo the endocopy and liver biopsy to see if the gluten-free diet helps and causes my liver numbers to drop. Have any of you had success with this? Any thoughts or advice would be greatly appreciated. I've outline my "symptomology" below.
Sick, Shocked and Scared
One year prior to November 1st “Attack”:
Loss of menstrual cycle
Hair loss & shaking hands
Crashing fatigue after school (three months prior)
Frequent stomachaches after eating (or some radical bouts of food poisoning) & gas
Irregular stools: constipation to diarrhea, blond to dark in color.
Excessive coughs, colds and flus
November 1st “False Heart Attack”:
Started with a mild concentrated chest pain and a feeling of unwellness.
Increased temp, a numbness down left arm, shortness of breath, irregular & increased heart beat.
After November 1st :
Intermittent chest pain and shortness of breath (only three large “attacks” - # ER visits)
Numbness in left arm and both hands (nearly unusable left arm on Sunday ER#2)
Numbness of varying levels in feet
Loss of large motor skills
Loss of fine motor skills
Very slow movement
Slow thought & mental confusion
Ex: At 4th emergency room intake, I heard the clerk state that my mother would have to have me sign the intake form. After she was seated next to me, I asked her when I would sign the form. She then told me that I already had signed it. It came as a total shock to me.
Ex: I had difficulty remembering my address right after the attack. I would search my mind but couldn’t remember it or misstate it.
Nausea and dry heaving (primarily the first four days after Nov. 1st
In ability to walk (primarily the first week after Nov. 1st)
General malaise & excessive sleeping (12 to 14 hours)
Involuntary full body spasms, leg reflex spasms while awake, involuntary jaw clenching
Seeing and feeling like I’m moving (when not) increased when eyes are closed
Some Kidney discomfort
A feeling of being perpetually hung over
No sleep (or sleep cues) for a few days after Nov. 1st then excessive sleeping
No hunger cues (can eat some but not much)
I was unable to eat for several days after Nov. 1st (stared feeling better)
Oddities I previously forgot to mention:
Water tasted metallic or poisonous the first few days after Nov. 1st
Urine smelled like feces the first few days after Nov. 1st.
When the chest pain and shortness of breath are present, the numbness seems less
I have clarity of thought and some energy for gross motor but then “crash” afterward.
Thank you for the replies. I was honestly feeling better before the Tylenol. I just had a minor headache, fatigue and joint aches. Now I feel like I have a spike stuck through the left side of my head and extreme nausea. The neuropathy is back as well. I honestly don't think I could feel worse unless you added back the "false" heart attack symptoms that I had that landed me in the ER in the first place.
I am dying to get the genetic results and current liver panel back from the labs next week. I am hoping to avoid a liver biopsy as well since the liver panel is high 60s when it should be in the teens.
I'm scared, frustrated and angry that this is happening to me. I know you all understand that. Given that I've never been sick my entire life, nor have I ever been hospitalized, this has come as an absolute shock to my family and I. Fingers crossed that I recover sometime soon, resume my normal active life and return to my job.
Thank you all for your support. It's a lonely place to be right now. :'-(
The bottle is brands new. Tylenol Extra Strength. Corn starch, powdered cellulose, pre gelatinized starch, shellac, sodium starch glycolate are the items posted. I'm not sure than why I'd have such a horrible reaction. :'-(
It was name brand. But the links I posted above reflect that someone called Tylenol recently and they will not guarantee that their end product is gluten free. When I'm well, I will contact the gluten-free medicine website to ask them to update this fact. Until then, I will be recovering from a horrible set back. :'-(
I've been gluten free for 12 days. Last night after my second outing since the hospital I took one Tylenol Extra Strength for a headache and joint pain. I was finally feeling better overall but very fatigued before last night.
After taking a tylenol, I have chest pain, shortness of breath, pressure in my chest, panic, fear to sleep, stomachache, nausea and numbness with stiffness in my left hand. I had previously read that Tylenol was gluten free on a gluten-free meds website. After the attack I re-read the bottle and read "Starch". I then found the following links.
I'm a mess today. Just like I was in the hospital 13 days ago. I'm scared that I've gone back to stage one. I hope it wears off soon so I can feel better and start feeling my left hand again. Anyone have the same experience?
Was on a limited gluten diet prior to hospitalizations.
Blood tests came back negative for gluten antibodies.
Genetic test pending.
Appt. with GI doc next week. (Nervous about a scope.)