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 am hoping my husband will get tested! He actually has more of the classic celiac symptoms than I do... fatigue (he takes 5 to 6 hour naps during the day after a full night sleep) achy legs, tingly hands and feet, chronic D and multiple trips to restroom all day long, stomach aches, nausea, depression, low testosterone, hot flashes. He does complain about his health and has been in search for answers but his answers must be in the form of a pill, so far he is not very willing to consider food a likely cause of so much suffering.. especially a food so common as wheat. He eats fast food everyday (by choice, I offer to pack a healthy lunch) so I think really is kind of afraid of the possibility of something like Celiac being a reality for him. We've had some conversations and he is back and forth between not wanting to hear it and then being more softened toward the idea of just getting a quick blood draw. So we'll see... if his bloodwork were positive and I know I am intolerant my kids' symptoms might make even more sense!!
Thanks mushroom for your input! I am finding it so hard to stay away from these forums as I am new to this and with everything I read more questions pop into my mind. It is wonderful to be able to glean so much from others' experience and knowledge who have traveled this road for a longer time.
Hmmm... I am trying really hard to follow this. All the different measurements really confuse me as to what they are. I need to do some serious reading on the IgA, IgG, tTg stuff so I can wrap my brain around it. I started this particular thread over a week ago when I was trying to decide the best way to afford testing with a ridiculously high-deductible. I did end up hauling my kids to the hospital Regional Lab location to try for the reflexive test. They had told me over the phone I would qualify for the uninsured price of $100 for the test, but turns out since I do have insurance they could not offer me that after all. I ended up walking away and looking into INeedLabs again, which is what I ultimately went with. They charged me $160 for a celiac panel through Labcorps.
According to my results page (I tried to copy and paste but won't let me) I was tested for the following levels:
Is that the full panel? All were in the very low end of negative ranges. I had only been totally gluten-free for 3 or 4 days at a time last fall, and then 10 days in early January, and for 1 week in February. Otherwise was gluten-lite in fall and gluten heavy this year except for above mentioned periods.
Any thoughts? I take this to be non-celiac gluten sensitivity or intolerance (or whatever, is there a difference in sens or int?) I wonder if I should have my kids tested for celiac though before starting them on gluten-free diets to see if their behavioral issues improve
Mushroom, yes! Thank you. My son's skin does clear up dramatically when I manage to keep all dairy, gluten, and nut-derived products out of his diet. Unfortunately, he gets fed things by his older siblings quite often and even a small amount of one of his allergic foods will cause him to explode from head to toe in a very uncomfortable rash. It is just too bad that my favorite gluten free flour has both almond meal and buttermilk in it, which he can't tolerate, so back to the drawing board on finding a yummy gluten-free flour that does not taste like cardboard.
My other children do have issues that I now strongly suspect may be due to gluten. 3 year old son has had night terrors for years, angry/aggressive outbursts, difficulty controlling his bladder and elimination even though he's been potty training for months now and is almost 4 years old.
5 year old daughter has had belly aches and constipation since infancy, very fussy, vomits randomly for no reason with no accompanying symptoms, incredibly sensitive/cries all the time with an attitude of the-world-is-ending-I-want-to-die (since when do 5 year olds want to die?!), and the biggest thing is her irrational fears. They are crazy, she is petrified of everything from being alone, the dark, dogs, costumes of any kind, food ... she often cries at the table because she will look at her food and tell me there is something bad or yucky in it. She is also very thin, brittle hair (not like mine or my husband's which is thick & healthy, I always wondered about a vitamin deficiency) and dark circles under her eyes. I see in her a lot of my gluten-induced personality traits, which I also see in my mother who never was tested for celiac but now has hashimoto's disease. Also have a grandmother and great-grandmother with mental/pschizophrenia disorders so it seems this gluten intolerance is a genetic thing that is more evident in the females in our family.
So glad to have found this thread also!! I feel like I want to hug you all right now. I can add my voice to all of yours that this is a real phenomenon!! I have suffered with depression, anxiety, pendulum like mood swings, suicide idealization, social anxiety, irrational fears, negative voices, obsessive thoughts, explosive anger, chronic fatigue, feeling "drugged" and the like since 12 years old, now almost 30. Oh yea, and bulimia. I always thought I was just a severely dysfunctional and mentally unstable individual, thus leading to very low self esteem. Never understood what was so wrong with me that I could not function like everyone else, or even just feel okay and content for any period of time. I had a great family, parents, and nothing really wrong with my life - no abuse, no dark secrets. Plus pre-12 I was a very happy child, athletic, outgoing, in gifted programs. Made no sense when after puberty I did a complete 180 behavior and personality wise. Mom took me to all kinds of docs and therapists who threw around words like Bi-Polar, ADD, Depression. Deep down I knew I wasn't truly crazy though, or angry, or anything. I just kind of felt like there was another influence over me I couldn't put my finger on. Kind of always felt like I was drowning, just living underwater with no source of oxygen and no idea how to surface.
By God's grace I later found a man who could see past my emotional issues, got married, had 3 children. As a blessing in disguise, my 3rd son was born with severe eczema. Last fall I was researching online what some mothers did to get rid of their child's eczema. Some had success with a dairy and gluten free diet. So I did that for my son, and since I was nursing, I joined him on the diet. I knew nothing about gluten-intolerance or celiac before this. I was looking only for a reaction in my son's skin, but was completely unprepared for the reaction in myself... after 5 days on the diet I woke up feeling clear-headed, energetic, content, and just calm quiet in my chest where there had always been such a storm of worry and turmoil and confusion. It was amazing, and man from that point forward it has been the greatest blessing to discover I am not crazy, it was the gluten all the time. Since then I have not gone completely gluten-free because I wanted to get the blood test and knew I had to still be eating gluten, and I could not afford the test right away. But I would go maybe 1 week gluten-free, then a month off, then a week on. Every time I've been gluten-free all those symptoms have "magically disappeared' just into thin air, as some of you also said. gluten-free I feel totally 100% normal and able to function. Finally had the blood test last week for celiac - results all negative but I know what I have experienced and will now be gluten-free for life if needs be, as long as I see results I will do whatever it takes not to regress back into that psychological prison.
I have many adverse symptoms to gluten and am ready to give the gluten-free diet a good long-term run. The thing is, before making this discovery I was mostly vegetarian... I say mostly because my family only eats chicken in a meal maybe two or three times a month. I just try to stay away from animal proteins because of genetic predisposition to high cholesterol, heart disease, etc. Wheat honestly has been my staple food. I made all my own breads, muffins, etc by grinding my own wheat, to be as nutritional as possible with no preservatives or anything... lol... funny now I find all that grain wheat likely accounted for my declining mental health over the past year.
I also read many of you going gluten-free suggest to also be dairy free at the start and stay away from processed foods. So... it seems all gluten, processed gluten-free foods, dairy, and most meat is out for me. What the heck am I going to eat? That is 3 major food groups right there. I feel like this is too impossible and I will surely starve. If I don't replace my grains with more meat (don't think I'm willing to do that), I would have to replace them with gluten-free substitutes, but I don't want the processed stuff. So I need to make my own, which is very daunting to me, plus it seems pretty clear there is no true subtitute for whole wheat bread.
Anyone in a similar situation? Oh, the bigger challenge is that I have to feed my gluten-free skeptical husband, and 3 children ages 1, 3, and 5 who LOVE wheat bread and are used to all of my homemade wheat products at every meal, and very stubborn about new foods. *sigh*...
Skylark, I probably did not phrase that correctly. I don't really understand what all the levels are or what they mean, I just know that everything tested was well toward the low end of the negative reference range. Total IgA was 186 I think, negative range 0 - 400. Both gliadin readings were 3, tTG IgA <1 and tTg IgG 2.
I am pretty satisfied to diagnose myself as non-celiac gluten-intolerant. Some of my research suggests Gluten Ataxia, which it seems cannot be officially diagnosed. There does not seem to be any test available to measure brain damage caused by gluten. But then I don't have what I would consider neurological symptoms as much as mental symptoms. More problems with thinking, feeling, concentrating than with movement or muscle. Is there a name for this or does it fall under ataxia also?
Ravenwood, I agree. The next logical step is to quit with the gluten yo-yoing and go strictly gluten free for the long haul - at least 6 months to a year, to guage if the initial dramatic results I experienced would hold true long term. It is certainly frustrating not to have a piece of paper to "show" people to say "I have XYZ, doctor said so, that's why I'm suddenly being weird around food". I think especially right now you mention gluten-free and people immediately roll their eyes thinking you are just another sheep following the latest hollywood diet or fad. Hopefully though, if my previous albeit limited experience with gluten abstinence holds true long term, my husband and other people important to me would certain take note of sustained results over time. I've never gone more than a week or two not being depressed, so if my depression were to lift for longer than that, I think everyone would be amazed. I just have to be patient enough to wait out the convincing period and put up with skepticism in the meantime.
Thanks to all for the help, advice, and encouragement.
Update: I went through INeedLabs.com. Everything was legit with them, great customer service, and I got my results emailed to me the very next day which was cool.
Hard to say whether this is a good thing or not, but my results were completely negative, not even approaching the 'weak positive' ranges. Before testing my gluten history was: gluten-lite for about 4 months, gluten free 10 days, gluten heavy for 4 weeks, gluten-free again for 7 days, and gluten heavy for 2 weeks. Very spotty, I know. But since I'd never been gluten-free more than 10 days, and in total was only gluten-free for less than 3 weeks over a very long period of time, I did not assume my levels would have changed dramatically from the norm. IF I had celiac disease, would those very few gluten-free periods truly be enough to turn up negative iga and igg levels, and a ttg <1 ? Or can I safely assume I do not have celiac disease? Does the low iga and igg suggest I am not truly gluten intolerant?
This is such an interesting thread, I too have this question and there are so many different answers. I took the celiac disease profile blood test today because I could not wait any longer.
Most recent gluten history is - 4 days gluten free in September (which is when I discovered I was intolerant, had dozens of previously unexplained chronic symptoms that I'd suffered since childhood disappear overnight) then gluten-lite all through the fall, 10 days gluten free beginning of January, then decided I wanted to be tested and started eating gluten heavily again for 4 weeks, could not tolerate it, went back gluten-free 10 days, then back on gluten for 2 weeks. Had blood drawn today. Phew. We'll see what comes up. I went through INeedLabs.com which you can do without a doctor's order, and it was a great price for those of us whose insurance is high deductible. I figure if its negative I'll continue gluten for 6 more weeks and get tested again to compare levels. At least I can see if they go up, down, or stay the same and have a reference point. And if this one is positive, great, no more gluten, or wondering. My aunt has 5 daughters all diagnosed positively celiac and after hearing my story she said she would be surprised if I am not also diagnosed. We will see. Good luck to you all!
Thanks, no he's never been tested to specify which one, I just know any dairy products and he breaks out in a rash from head to toe!! Yeah, I actually fed him a smoothie with kefir before asking the question, and his skin was crystal clear that morning but 24 hours later was inflamed the worst I've seen in awhile. Drats. I was seriously misinformed, now I know!!
I will have to try water kefir or grow it in rice milk next time. What do you guys use to heal the intestine then, other probiotics?
My 18 month old reacts to all dairy with a skin rash (eczema). Someone told me he could most likely tolerate milk fermented with kefir grains, that it changes the composition of the milk or something and most with lactose or milk protein allergies can tolerate kefir? Does anyone know anything about this? I really want to start using this in our green smoothies as a base since it is supposed to have excellent health benefits and help heal leaky gut (which I think we all have to some degree).
Hi Hedgie. I don't have any sage advice for you, but just wanted to offer an empathizing ear and pass on some virtual hugs! I too have suffered 18 years of bulimia, I am turning 30 this year and very happily married with 3 lovely children so I should not be suffering with this eating disorder anymore either. I should be over it. I found out only recently and quite by accident that I am gluten intolerant (have not been tested for celiac yet) and that some of the symptoms that completely disappeared the first time I went off gluten include: depression, anxiety, obsessive and negative thoughts, suicidal feelings, anger, irritability, feeling "out of control", brain fog, confusions... I felt these things since I was 12 years old and never understood why. My parents gave me such a hard time for being sad and depressed after I hit puberty, and I beat myself up for not being a more positive happy person, but I just couldn't be. I felt horrible all the time. It's no wonder I turned to binging and purging, food was the only thing that game me any comfort or sense of well being for a short time. It was also gluten-filled food though so it also intensified all the awful symptoms and I sensed it was some kind of poison I could not keep in my body. So after eating, I got rid of the food. After 18 years of this behavior, and then feeling normal after being off gluten, I had no need to binge or purge. When I am gluten-free now my eating disorder is just plain gone. So I understand you completely and I too consider it a symptom of gluten. Best wishes and luck in your recovery. Sometimes its nice to know you aren't alone!
My doctor originally ordered a Comprehensive Celiac Panel from LabCorps. I found out that would cost me over $500 on my high deductible family plan, and I couldn't swing it, so I've been desperately searching for less expensive options. All the time still eating gluten and feeling pretty miserable.
I was looking at INeedLabs.Com, but when I called my doctor's nurse to ask about it, she'd never heard of it. That didn't necessarily turn me away from the online route, they actually sounded completely legit when I talked to them on the phone. But my nurse did mention something I wasn't aware of: Regional Lab Outreach through my local hospital.
Regional Lab offers discounted tests for private pay patients. I called and they quote me 2 different tests. One was a Celiac Reflexive Panel. As I understand, they run an IgA an depending on that result they do one of two things. Here is the description: If IgA is less than 7 mg/dL, then tTG IgG and Gliadin Peptide IgG will be added. If IgA is greater than or equal to 7 mg/dL, then tTG IgA and Gliadin Peptide IgA will be added .
So apparently this is more cost effective than the other option, which is a Celiac Serology test which includes these values: Anti-gliadin IgG ELISA
Anti-gliadin IgA ELISA
Anti-human tTG IgA ELISA
Anti-endomysial(EMA) IgA IFA
Total serum IgA
Do I really need the comprehensive test? Can the relflexive test be enough to diagnose celiac disease? Will it tell me what I need to know? What would be the benefit of having the additional values in the comprehensive serology panel?
Ok, I think I might want to go through Ineedlabs.com as several of you have recommended. For the price of $177, my husband and I could both get tested, for actually less than the test my doctor ordered for me alone. (That is, if I can convince my husband!) It would be so awesome to have that done.
BUT - I am a little apprehensive and wondering what the difference is with this online lab? Is it safe and trustworthy? They actually have a location that utilizes the same LabCorps location I would be going to for the doctor ordered lab. So who processes the online test? Ineedlabs promises results in 48 hours while the doctor said to allow 10 days for results. Why the difference, does someone different process the online tests? Just wanting to understand exactly what I would be paying for.
Also the doctor ordered Complete Celiac Panel I think includes the genetic marker testing. The Ineedlabs test for only one-third the price does not. Do I need the genentic marker testing? What would be the benefit?