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
Something to consider: I am lucky enough to have a Chiropractor/Nutritionist/Wellness clinic very near to me. They do everything from detox to physical therapy to counseling to acupuncture to nutrition evals etc. They claim they can "heal the total body" and they are amazing!!! The nutritionist (NOT a dietian, sooooooo much more) at this specific office can do a blood test that literally tests your blood to see how it reacts with 300 different allergens and known irritants (from mustard to gluten to diary to mushrooms etc). He also has several techniques to healing and recovering a body from a storm of autoimmune and allergen reactions. I've always believed that when you are exposed to something you react to for too long your body starts to think other things are trying to attack it as well. Most of the celiac people i know in person seem to suffer more with other irritants/allergens if it took longer to be diagnosed. Consider a detox/cleanse monitored by a chiropractor or nutritonist. Also consider a plain whole food/organic diet for a few months to see if you can calm your body down. Perhaps things you react to now may go away/heal with the right diet and nutrients.
Thank you for responding so quickly... We don't tell people anymore and not telling family that we got the go ahead was a great choice, but while it relieved some pressure it also isolated me from most of my support group.
I hadn't thought about calling the doc, why didn't I think of that?! Thank you! I will call them. I hate all the time and money I've spent on thinking Im' pregnant. PCOS sucks it really does...
Any other advice? I'm a sponge right now. Good thing I am off right now, working and having a melt-down would be hard!
I am having a moment. Ok a lot of moments lately. The short version is that I have Celiac, no functioning thyroid, and PCOS; AKA special olympics the fertility subdivision.
My husband and I have been trying to conceive for over 2 years now. We've been seeing a very successful infertility doctor. He seems to have gotten things on the right path and gave us the go ahead to get off the pill for the first time in a while (they determined after 14 mo or so of trying that being without the pill was causing further damage because of all the cysts on my ovaries). And yes I count all those months being ON THE PILL (doctors orders) as part of my trying to conceive time because that whole time my heart was aching for my body to stop this crap and allow a baby dangit... Anyway, we haven't told our friends and family we are off the pill and things seem to be going fine. I had one normal period off the pill. Now here comes the tricky part: my period is almost one week late and for the last 2.5-3 weeks I've been getting more and more symptoms. Now I know what you're thinking- you have PCOS, you just got off the pill, honey the chances of you being pregnant are less than 20% this soon after the pill AND who knows if you are even ovulating!!! But LISTEN!
I am going nuts. I know that all my reproductive organs are perfect at this point, at least to look at them. I had exploratory surgery and got the go ahead that things seem healthy to start trying, not 100% sure everything works but it at least appears healthy. Anyway, 2.5 or so weeks ago I start to get a bit tired. Every day a bit more tired. I have some nausea/queasiness/dizziness/vomiting (very minimal vomiting, more than heartburn/indigestion, but less than stomach flu). My appetite has picked up, but eating doesn't quite make me feel better. I have headaches. My emotions are up and down and up and down. I have gas. My veins are showing up darker and prouder than ever. Four days ago I started to get cramps and thought "Ooooh here it is...darn" but no - nothing happens from the cramps!! They are strange cramps that seem to get worse or better based on body position. My sex drive has increased. Just yesterday my back started to ache a bit. I can't lean forward while sitting without weird twinges or tightness. My nipples are super sensitive (but no pain). My tiredness eventually gave way to occasional insomnia. Sometimes, even if I sleep 10 hours the night before I HAVE TO-HAVE TO lay down around 12noon after lunch.
Please don't think I'm imagining things or letting my mind play tricks on me. I know that may be it, but please lie to me and tell me "Maybe you are pregnant but the tests are negative because it didn't implant?" Or "Maybe you are pregnant and 1 week late for period isn't enough for YOUR body to show on a home preg test.." I just need to know my body can GET PREGNANT. I don't need the second one to stick (I had a miscarriage approx 1.5 years ago that never showed positive on a pregnancy test but doc confirmed was likely 8 weeks pregnant) I just need a step further this time... Like a positive pregnancy test... or even the change to give my husband and I some hope.
I really wasn't stressing out much until today. I waited a few days (last test I took was on the day my period was due and it was negative) until today seeing as how it's almost a week late today.... I missed the morning pee so going by some research I did last night 4 hours in between bathroom breaks gives strong enough urine for a test... but still negative.
I haven't told ANYONE this and I am bursting with sadness and disappointment. My friends and family are so invested in my fertility that it's hard to talk to them anymore.. and I didn't want my husband to suspect that I would surprise him anyday with the good news!! I have it all planned out how I"d tell him... and he has it all planned out how we would tell our parents. Telling him I thought I was pregnant or giving any clues would only hinder the whole surprise element.
I know that most of these symptoms could simply be "coming down" off the control of the pill. It regulates hormones so well and having spent years (off and on) being on the pill I guess that my body could just be learning all over again... but what about the weird cramps and the muscle tightness in my lower abdomen. And the pain when I stretch? I guess it's possible that I have hormonal swinging issues with another ovarian cyst, but my cysts are very controlled right now with Metformin.
I know I am stressing here and it's not good for you and your period and maybe a baby and blah blah... that doesn't help. Knowing that doesn't help. How do I cope? When is it my turn? How long do I allow a glimmer of hope to ride out everyday until I give up and say I'm not pregnant for sure and it's just good old flipping PCOS rearing it's ugly head again. I really need someone who's been through PCOS and pregnancy and Celiac.... I may be asking alot but SOMEONE ANYONE PLEASE GIVE ADVICE OR SOOTHING WORDS!!!!! Something...
Wow posting at 4am I can tell it really bothers you a lot, but unfortunately to live comfortably with Celiac you must not allows others to make you feel guilty. It is healthy to want our loved ones and those you respect to not be irritated with you, but the sooner you adapt a "this is my burden to bare, I'm the one in pain, not you, just be happy you can still eat good pizza!" attitude the easier it will be on you. It was hard for me to maintain this aura of "take me as I am" about myself, but it has put my family and I in a great place.
Now, as for missing school, you NEEEEED to get to your local health food store and purchase some enzymes and herbs to help you when you are suffering. I take Glutenzyme (can be taken regularly or after symptoms arise) and bromelain (pineapple enzyme) and I take Arsenicum Album in the form of small lozenges in case of emergency. The arsenicum album is made by a company called Boiron and is AMAZING. It tastes like candy and truly STOPS my diarrhea and vomiting. It is packaged in a small blue tube and can be somewhat expensive, but when used for emergencies it is truly worth the purchase.
Don't forget when you are suffering to drink a lot of extra water, sleep as much as possible, and eat as much pineapple and/or mango as you can stomach - they help you heal. Some say benadryl help your body not react as much, some say no. But you really need to purchase enzymes to help your body destroy remaining gluten in your body.
Good luck to you and please don't feel guilty for allowing your body to heal!!!!
Ok, here's the truth. I am not 100% gluten free. I EAT 100% gluten free and am very careful at home with any and all CC. However, I have an issue with eating out. Rewarding myself is the easiest way to feel, well, rewarded... and nothing does the trick like a coffee or french fries. I've cut out other bad things and these two are too hard to give up. I know that french fries (anything but the expensive all natural gluten-free ones) are bad in general and shouldn't be eaten especially when purchased at a fast food restaurant... SO yes I take risks. My lotions do not have gluten and my toothpaste is safe. I checked my dishsoap, but not my hand soap!! What was I thinking?! OK so that is something to look into. I work at an elementary school where there is constantly gluten, but nothing near me and nothing being baked. My husband eats gluten, but very rarely is it prepared at the house. You're completely right that I sound glutened, but my main and numero uno symptom is the horrible "shoot me now" pain and the frequent long trips to the bathroom and I have had almost none of that. I guess my body changes and I'm either over-sensitive right now or my symptoms are changing. I pray and hope and BEG that it's not dairy. I did that off and on before I was gluten-free and I just love my dairy!!
My typical diet is rice cereal for breakfast (eggs used to be my staple breakfast, but oddly since the radiation I have not been interested in eggs/steak/heavy cheses... to the point of nausea if I smell them? and no, not pregnant), salad with chicken for lunch or maybe a sandwich (with gluten-free lunchmeat and bread). Dinner varies... sometimes I will make chicken breast, green beans, and gluten-free noodles. Sometimes it's chili or hamburgers. I love broccoli and potatoes and onions so there is a lot of those with chicken in different variations. I eat some form of sweet pretty much everyday whether it's a sugared coffee drink or a handful of M&Ms or a dish of ice cream- sometimes I will have chips and salsa instead.
So oh my gosh Mamaw the thyroid struggles do not give me much hope. I am still praying that in a few weeks my levels will start to drop to hypo and I can start back on meds. I would really love to be pregnant in a year, but I feel that my body isn't done throwing me curveballs... and unfortunately I am usually right about what's coming with my health.
Thank you to both of you for the support and sharing. I really greatly appreciate it. Keep the hope alive and please send me any ANY suggestions you may have!!! I am surrounded by people who love me, but don't understand...
I don't want to dishearten you, but it took me 6 months to really start to feel normal again. I didn't even realize how good I felt until I was glutened by some vitamins and saw how far I had come. You may want to start on some vitamins, approved by your local health food store. You may be hypothyroid, anemic, b12 def, etc. There are so many diseases associated with Celiac... Just take care of yourself! Rest, drink a lot of water, and try some supplements. And remember, you're not alone!
I discovered I had Celiac approximately 2 years ago. Prior to discovering the source of my constant suffering I was diagnosed with b12 def(requiring b12 shots every 3 wks) and hypothyroidism caused by an autoimmune condition. Those two conditions combined with Celiac allowed me to finally start to feel some true health. It was miserable to be 23, recently married, and having to completely change my life patterns, but after 6 looooong months of strict label reading I finally started to feel young and healthy!
Unfortunately, my triumph was not long lived. I explained to my husband that my complicated history with my reproductive system was likely to cause great difficulty in pregnancy. I never had any answers for my constant abnormal cycles, but I knew in my heart conception was going to be unlikely. A year of no pregnancy and my doctor said that for my health I either had to return to taking birth control or persue a fertility doctor. I was then diagnosed with PolyCystic Ovarian Syndrome. Six months of seeing the fertility doctor, she tells me my thyroid levels are so high off the charts (even after months of no thyro meds) they aren't even showing on some of the blood tests.
So off to the endocrinologist. When I was 16 my thyroid went up and down for a year, but settled back to normal. I had never obtained an answer for that time in my life. Seeing the doc she diagnoses me with Graves Disease. A HYPERthyroidism disease! I was hypothyroid for over 2 years and never received an explanation why my body changed.
Two weeks ago I was given radioactive iodine to kill my thyroid. The first few days after that treatment I felt FINE, but the past 10-11 days I have been feeling awful. My immune system is practically useless so I thought maybe my pneumonia from Christmas was back, but the doc says no (even though I cough everyday). I have extreme fatigue and dizziness. My throat hurts horribly near where my throat comes together when I swallow. I am very moody and weak. My endocrinologist says there is no way I am hypothyroid yet.
I just don't know what to do... I have been feeling down because my health is a constant battle. Every doctor looks at me like I'm melodrammatic, but I'm actually quite tolerant to the deluge of symptoms my body can throw my way. My primary doctor has stopped treating me with any of his ideas and only treats me with what I ask him to do. I know that perhaps I am a bit pushy on doctors because I research everything they do to me, but my journey (like many) to a Celiac diagnoses was like a bad Lifetime movie. My only friend with celiac keeps telling me its my adrenal glands, but I can't get my doctor to believe how desperate I feel- how on earth will I convince him to test my adrenals!!! I honestly feel as if my light is going out...
Yes Ranger I LOVE Raisin Rack! I've never been to any of the meetings... but that store has been a God-send! Most of the large chain grocery stores have started carrying small sections of gluten free products as well, which is nice...
Ugh... I never thought of THAT! Well, we're always careful not to share drinks when he's eating something I can't... but anything else... oh my gosh. So, now, time to get nitty gritty... Do I have to worry about anything that does not pass into my mouth? I've read the much heated debates regarding various bodily fluids and whether or not they contain gluten, but my question is, in the off chance it does contain gluten sometimes can I get sick without anything passing into my mouth??? Wow what an awful question to have to ask...
I do remember when I got sick this past weekend that I was frustrated because it usually takes me 30-45 minutes to get sick after eating and it had been at least 1h 15m since I had eaten. However, I had started a new vitamin a few days prior that had been slightly upsetting my stomach and I just assumed it had taken two-three days to really throw me into a horrible gluten attack. But I distinctly remember my husband eating breaded chicken just before we left to walk around downtown... it had to have been that! Oh my gosh I didn't even think about it... I'm going to have to talk to him... so if he eats something with gluten can he just rinse his mouth out and he's kissable safe again???
Thank you all so much for your support and information... Two things I want to touch on before I forget! I do have some autoimmune thyroid condition that was found about 6 months ago. My doctor has not labeled it, but we're treating it and so far its been very effective. My doctor also told me I have "fibromyalgia" but I don't believe him. I am not typically lacking in energy or enthusiasm or happiness. I only hurt when he poked me in those "fibro areas" or whatever those spots are called. I apparently do have some of the symptoms, but only when glutened?
As far as my diet goes I did eliminate all wheat, barley, rye, oats, rice, malt, etc from my diet. Well, at least I try to, obviously I'm not 100% careful as I did get sick this weekend... I did start with a basic clean diet and slowly added in things. I have not yet added in rice and "clean oats" but I will once I get up some courage. I've experienced milk problems before so I know allll about that but as far as soy or any vegetables I really don't know much of anything! I guess I should start considering those things as well...
Again, I truly appreciate the support! It makes it all the more easy to be sitting here miserable.
Yes Ranger I live about 20-30 minutes from Canton. At first I would easily get sick from even gluten-free products with CC warnings on the labels, but it had seemed that after a few months to heal that I was able to be less careful. I guess that was a hoax! The new symptoms developing with this reaction are really very alarming to me and I hope it is not a trend! My original symptoms are bad enough!
I guess from an auto-immune point of view the hyper-sensitivity makes sense during a gluten-free lifestyle, but it certainly isn't fair... May I ask, what gluten free products make you sick? Just so i can have an idea.. My poor husband believes me. Vehemently so actually. He's more easily upset by people who step in "to help me find foods I can eat" than I am, but unfortunately he's not so great with empathy in this aspect of my life.
It took me approximately two weeks before I felt 80% better. I am not in my 3rd month of being gluten free and most days I feel 90% or so back to normal. Unfortunately, something no one ever told me, that you may become hypersensitive as your body "detoxes" from the gluten and each subsequent reaction is worse and harder... I'm going through one now and for the first time it actually made me leave work... ugh!
Sylvia thank you for all the information... Unfortunately I don't have time right now to go into too many details about my history, but I can tell you this... I had a wide variety of symptoms, was sick and being tested for various illnesses for over a year. I had heard mention of Celiac from pretty much every doctor that I came into contact with, but my blood tests came back negative. My gastro doctor and his NP had discussed doing the small intestine biopsy, but they had done sooooo many procedures and biopsies and tests that I melted under pressure and fled! I did a lot of my own research and after having heard Celiac mentioned so many times (and also having heard other family members have Celiac symptoms but test negative in blood work) I just went on with life as if I have Celiac.
Now that being said I did go back to whole foods for a few weeks, eliminated it in my meds and makeups, no toasters or suspect pots/pans/dishes etc... Stopped eating out and all that. Now! I did notice that once or twice I have accidently used lotion on my feet that contains wheat. I have since stopped this, but my question is: why? Is gluten transdermally absorbed? Or is putting it on your body simply put you at risk for absorbing it? I thought Celiac is an internal auto-immune response? My primary doctor has been assisting me with my process... he did run multiple blood work ups (as did my gastro doctor) and the only vitamin I was lacking was B12. I get one shot every three weeks and am hopeful that once I heal enough I may no longer need the shot...
As far as dieticians and celiac specialists:
I live in a teeny tiny town in Ohio, which is surrounded by other teeny tiny towns.... We just recently got stoplights so any understanding of Celiac will definitely have to come from the internet. My primary doctor is very current and modern on all of his medical reading, but as far as specialist goes he's all I've got. Unfortunately I have to drive 30 minutes just to get to anyone who knows what gluten is, let alone gluten-free products and living.... I guess you'll have to guide me!!!
I did start a journal, but I started to feel so good for weeks and weeks so I just stopped
Oh Hannah thank you for your reply... It was exactly what I needed to hear. The slightly amusing part to all of this is I noticed your reply during a meeting at work, my job: ambulance and fire billing!!! I have noticed the bloated issue from time to time and am dealing with that... but no I am actually slightly puffy all over... abdomen, chest, extremities, etc. No other scary symptoms (no SOB or difficulty ambulating or anything) I'm just sore and puffy. I guess maybe some of this has happened before as my primary doctor first tried to tell me I had fibromyalgia...
I never expected to become MORE sensitive! I thought it would perhaps get less severe after a length of time... And the whole "its in your head" thing DRIVES ME CRAZY!!! My dear dear co-workers are the worst. We have frequent meals and snacks brought in from the "outside" and quite often I hear "Can't you just remove the lunch meat from the pre-made sandwich?" "Can't you just remve the croutons from the salad?" "Can't you just have pasta sometimes and not all the time???" It literally makes me crazy. Like truly feeling unhinged! I understand that you can't really sympathize until you've studied, learned, or experienced, but can't they just STOP trying to "help"????? I finally explained the risks associated with "sometimes" gluten free.. I didn't go into any horrily unpleasant details but I did explain cancer risks and long-term health and that has helped some...