I feel lucky to have celiac disease.
Let me rephrase that.
I feel lucky to actually have the diagnosis of celiac disease.
I get emails like the one below all the time. They come from people who have all of the celiac symptoms, but don’t have an actual diagnosis.
Either because they went off gluten and felt amazingly better and didn’t want to go back ON gluten to get the diagnosis.
Or because they don’t have the money to get tested.
Or because the initial blood test came back negative and the lazy ass doctor refused to do any sort of follow up.
So they are stuck in this middle-ground. They know they cannot eat gluten ever again, but they can’t call themselves celiacs.
Now to me…it doesn’t matter. If you cannot eat gluten because it causes you health issues, no matter what you call yourself, we are all in this together.
But again…I get the frustration and I’d probably feel the same way.
Here’s her email. As always, if you have and advice to share, please do so. I’m sure there are thousands of people out there in her shoes who could really use some help.
I have an appointment with a gastroenterologist tomorrow, and I am really nervous about it. Over the last 10 years, I’ve been to several doctors about my joint pain, and kept being told that I just had to live with a cane because “nothing is wrong with you.”
(Dude note: Dear doctors…you suck.)
I finally started eating gluten free in desperation four years ago. Since then, I’ve had two foolish doctors test me for celiac despite my insistence that it would be useless as I wasn’t eating gluten. No surprise, those tests were negative, so I was again told that there is nothing wrong with me.
(Dude note: Dear doctors…you really, really suck.)
Gluten-free, I can walk miles, work out, have sex, and feel pretty awesome. Whenever I eat out or eat something “prepared in a facility that also processes wheat,” I need to be helped up the stairs, and sometimes have to start using my cane again.
I want an official diagnosis, because I want appropriate follow-up care and I want to be able to tell people that I can’t eat that dish at the departmental lunch because of a diagnosed condition. I hate being that crazy girl who is self-diagnosing.
At the same time, the last time I got seriously glutened, I started having trouble staying awake and started substituting words (saying refrigerator when I meant epistemology, for example). I’ve just started grad school. I don’t know if I can do a gluten challenge.
I just needed to articulate my fears to someone who understands that food can indeed cause joint pain and other, non-gastrointestinal issues (though I have those too, yay).
I don’t know whether this doctor will dismiss me as well. I’m scared of having to have that conversation again where I’m told that there’s nothing wrong with me despite all of the evidence to the contrary.
Dear NON crazy girl. It seems as obvious to me as it does to you that gluten causes you hell. I guess my question to you (said with love) is this? Who gives a shit what the doctors say? And even more so, who gives a crap what other people say?
Now…I’m in my 40’s and with age comes an amazing feeling of not caring as much what others think about you. It’s one of the few beauties of aging. I assume you are a bit younger and don’t have that confidence yet. The sooner you can find it, the better off you’ll be. I know…easier said than done.
I have no issue with telling people to use a white lie and say they have celiac disease if they know they can NEVER have gluten again but they just never got an official diagnosis. If gluten is poison to your body, that’s a serious medical condition and whether you call it celiac disease or not, you have no reason to apologize for it.
Dude note: I was just about to post this live when the above woman (not Miley Cyrus…the one who emailed me) JUST sent me another email. Here’s what she said:
The GI was nice but not very helpful — he said I had IBS and fibromayalgia and probably also needed to see a psychotherapist. I saw a rheumatologist after that who said that she could rule out everything else (including fibromayalgia) and that my symptoms sounded like the arthritis other celiac patients of hers have had. She said that given that I can’t tolerate food that is tested to greater than 10ppm of gluten, and the nutritional deficits she discovered (anemia, which is resolving on a very strict gf diet — no eating out and only whole foods and limited certified gf foods at home — and vitamin d, which she said may never resolve entirely, or at least that’s her experience of treating celiac patients) she’s comfortable calling it celiac or NCGS without further testing.
I’ve run out of money and energy to pursue this further, and I suspect that even with a DX, I wouldn’t get much more help from professionals. I did see a psychologist, and she said “you’re not crazy or suffering from and eating disorder — you have a scary reaction to certain food that is understandably upsetting.”
So I finally got two professionals to take me seriously and now I’m taking myself seriously and being as strict and careful as I need to be. I’m finally starting to be able to work out, which I hadn’t really done in 4 years. I should have just listened to my body earlier, but having that professional support does make it easier for me to demand that other people take me seriously and respect my needs.
There is indeed nothing else to pursue. You’ve got either celiac or NCGS. Take care of yourself. You deserve to feel good.
Do we call this a happy ending?
108 thoughts on “Dear Gluten Dude: I Hate Being that Crazy Girl who is Self-Diagnosing Herself as a Celiac”
Sounds familiar! I had quite a few specialists tell me that all my tests came back “normal.” I tested negative on the antibody test (but positive on the genetic much later). My gastro-enterologist told me flat out “You don’t have Celiac Disease, but if it will make your feel better to rule it out, I’ll order the test.” Test came back positive. I’m sure we have all experienced some level of frustration with the diagnostic process and the doctors that appear to be super confused about how to properly identify this disease and the myriad other disorders associated with gluten ingestion. Probably the worst part of this process is when you have a doctor that insists on referring you to a psychiatrist because of “self diagnosing”. Happened to me! Reminds me of that Ramones song: “I’m not crazy! Institution! You’re the one that’s crazy! Institution!”. LOL The 80’s.
I’m in a similar boat..gluten free for 4 years now and refuse to go back. My symptoms were too severe and too scary to consider ingesting the stuff willingly. I was very ill for ten years, loads of doctors and tests, not a single one had a clue. I figured it out myself and didn’t know when I first went gluten free that I had to be on gluten to be properly tested. I have since had one doctor tell me she suspects I have Celiac disease due to the severity of my symptoms..but that was the extent of the diagnosis. When talking to people about it..sometimes I find its easier to just say I have Celiac disease instead of explaining that I’m not sure if its this or just gluten sensitivity. I’ve noticed people don’t take me seriously if I say gluten sensitivity..they think I mean I have an allergy and then it always turns into them talking about their nephew who can’t eat peanuts for the same reason and I just have to bite my tongue and move on. If someone is genuinely curious..I explain things in more detail so they can truly understand. But honestly..its up to me to take care of myself..and if I tell someone I have Celiac..they stop pressuring me to eat something I shouldn’t (even though they honestly don’t know what Celiac is usually!). I guess the word sounds scarier? I think I have it…I wish I had a proper diagnosis mostly just so I KNEW once and for all. I think there’s probably a lot of us out there in this limbo. I am just thoroughly grateful for all of the people out there sharing their experiences and stories..for years I thought I was alone in this. (and what is with all the doctors treating us like all we need is a good therapist or something? I had SO many doctors pat me on the head and tell me I was just being anxious or hormonal or needed therapy…AUGH)
I’d say you call this a happy ending. In the 1950’s my paternal great-grandmother announced, “She couldn’t eat wheat,” and, well, because she was the daughter of a Texas rancher and the wife of a doctor, no one questioned her. We just didn’t have toast or sandwiches at her house. (That’s the gluten-intolerant side of my family.) She gardened and entertained and was a formidable San Antonio socialite for most of her life. There is a portrait of her in her fifties, still quite beautiful.
My maternal aunt, on the other hand, wasn’t taken seriously until she had celiac for about 50 years and had a, “real,” diagnosis. She’s been sick a lot.
If you know your diagnosis, and you’re firm about that, you’ll be fine. A lot of this is about believing in yourself. If you’re o.k. with who and what you are, you’ve got what you need.
I am going to start with…YOU GO GIRL! Good for you for sticking up for yourself. If you don’t advocate for yourself Nobody else is….so GO!!!!! As for GD’s statement about stupid doctors…I have a great one for you. I see my gastroenterologist once a year or more as needed and of course I see my GP NUMEROUS times a year due to several health issues including fibromyalgia. HE says that I do NOT have CD because my last two blood tests were negative. I just shake my head and let my gastro doc deal with the CD. I mean come ON! REALLY?????? WHY would I go to the gastro doc…with the diagnosis of CD EVERY SINGLE TIME…if I didn’t have CD???? Thank GOD I went to the gastro doc…with a HUGE thanks to my ob/gyn (yes my ob/gyn)…when I did. I was vomiting every time I ate anything solid….I was on a liquid diet…and I was losing weight at a very FAST pace!!!!!!! Not that losing weight would hurt me in the least because I AM overweight, but that’s not my point!!!!!!! Regarding a rheumatologist…not ONE SINGLE rheumy would see me for my fibro when I was diagnosed many, many years ago!!!! NO ONE! My GP lied about my diagnosis and got me in to see one and as soon as he saw “fibromyalgia” on the 50 page questionnaire he stopped immediately (and I really DO mean immediately!!!!) and dismissed me. Needless to say…I DO NOT have a high regard for doctors (except my GI doc of course) because of all the terrible shnit that has happened to me. You take care…feel better soon…and welcome to the Gluten Dude family!!!!!!
My doc says- “do not eat ANYTHING (gluten or not) that makes you feel bad.” Simple enough, too bad for me that I did not have that doctor sooner in life. Years of frustration and becoming very ill and now I know- TRUST YOURSELF!!!! Screw what some stupid “doctors” say. They do not live in your body- so they don’t know how you feel. I am glad you are feeling better!!!! (((hugs)))
I sought a diagnosis for years for all the symptoms we mention over and over here (joints, skin, GI, migraines). My doctors are even less helpful now that I have the diagnosis than they were before when they were guessing and testing.
Do what is best for you to feel better.
I totally agree with deciding you have celiac on your own when you know you have it and doctors can’t get you their diagnosis.
I first suspected I had it in 2004 and my doctor told me to “just go gluten free and see if you feel better, if you do, then we’ll test you.” (SERIOUSLY STUPID DOCTOR!)
That led me to several years of being “gluten light” and not really getting better. My symptoms would get worse, so I’d be stricter, then I would feel better and cheat – it was a vicious cycle.
Then after my last negative blood test (the first one done by my new doctor), my doc said “if you want the diagnosis, eat as much gluten as you can for 6 months, then come back. 6 months later I went in to see my rheumatologist (since I thought it was related to my hypermobility syndrome) because I was sleeping 18 hours a day and had horrible arthritis pain and only felt “okay” while I was in the process of running. Literally, if I wasn’t running, I could barely walk and would fall asleep if I sat for more than 5 min. Turns out I had pernicious without anemia and a b12 level of 105. I was told to “stop being a vegan” and when I asked “who’s a vegan? me? no, I’m a carnivore” they did the celiac test again – along with the gene test.
My rheumy also ordered some other tests. Turns out my celiac panel was positive, as was the gene test, AND my previous celiac panel was actually inconclusive, NOT negative! She was about to refer me to a gastro when she asked about my eczema. Turns out, after biopsy, it was actually Dermatitis Herpetiforms! So I got a DX without having and endoscopy!
BUT my test results didn’t come back until the end of the first week in January 2013 and I made a decision that on December 29th, after all the tests had been done, that I was going to call my self a celiac and live that way for the rest of my life, no matter the results.
So I think that if you are willing to adopt the lifestyle 100%, no cheating, go ahead and say you have celiac. And when you change doctors, tell them you have it. 🙂
Both came back positive and my rhematologist
I can relate to this. My daughter was tested at 18 months old and everything came back negative, but nothing could explain her Failure to Thrive.
When you read the “classic” symptoms of celiac, it’s my husband to a T. After spending all our HSA getting our daughter tested, we just went gluten free and didn’t get him tested.
Both are thriving now. If people ask, he says he’s “sensitive to gluten.” I think he’s reluctant to give it a name.
If someone asks me, I say they are NCGS or gluten intolerant, depending on the understanding level of the person asking. I would be hesitant to call it celiac without the diagnosis. I would feel like I was being deceptive, even though I would bet my left (maybe not my right) arm that it is celiac.
Luckily, our primary care physician (not our gastroenterologist) is supportive and recognizes the improvements in my daughter’s weight percentiles so he signed the waiver so she can get gluten free lunch at school, even though she is not “diagnosed.” Fortunately, not all doctors have their heads up their rear ends and I’m glad the emailer finally found doctors who are supporting her.
I also fall into this category. I was being seen by different doctors for infertility, joint pain, depression and anxiety, anemia, and I was having a lot of digestion issues. I’d almost always get terrible heartburn after eating pasta or bread. I was in debilitating pain. I ended up having to quit work because of the amount of pain I was living with. Looking for any relief I saw a chiropractor. Looking at my intake paperwork he was finally the person who connected the dots and said, “I want you to try an experiment, avoid gluten for a month and let’s see what happens.”
Well since I’m here, you can imagine what happened. My pain is virtually gone. Before, all I could do was take a pain pill and muscle relaxer and sleep 18 hours. I couldn’t sit at a desk, but now find myself able to. If I do eat something that has been cross contaminated I can tell. I feel like I’m coming down with the flu. My body aches and I get very very very emotional.
Do I need to go to a doctor for a diagnosis? No, it is a simple problem. I avoid gluten. It’s not like the doctors give you a card to show everyone that says, “Hey everyone I have celiac disease.” I actually haven’t had any problems out of anyone about my diet. People close to me have seen the difference. They’ve seen me go from weeping and in terrible pain to a happy person who can get out and enjoy life again.
I can completely relate to her. I ended up in the hospital for 5 days in June, when my on going stomach pain had finally become debilitating. I have a wonderful GI, who I met while I was in the hospital, and he does take good care of me, but he didn’t run the Celiac test while I was in the hospital (he has apologized for this, as it is one of the first tests he normally runs). He wants me to take the test now, but I told him that I stopped eating gluten the moment I got out of the hospital, and now my pain is only once and a great while when I get glutened, not non stop, so I don’t want to eat gluten, just to prove that gluten is what makes me sick. I’ve had a bajillion other tests that all came back negative, so still no one can make a diagnosis what’s wrong with me. But the removal of gluten has helped so I’m still refusing to eat gluten. So I tell people I’m gluten intolerant, but they always say “Well maybe you can have a little. It’s not like you have a true allergy.” or “Well is it celiac?” “No” “Oh, ok so it’s not that serious”. It’s SUPER frustrating.
It makes me feel like a burden and like I’m crazy. I have some really supportive friends, who take me super seriously, but when I venture outside my direct circle it’s miserable.
First off, no one knows your body better than you do. You know what makes you sick, and what makes you feel good, regardless of what idiotic doctors and stupid test results say. I was sick from when I was a baby. Numerous issues from gastrointestinal to pysicological. My parents brought me to doctors and hospitals, and they either said I was fine, or it was nothing and I’d grow out if it. Well, I didn’t. At the age of 24 I was going weeks without going to the washroom, overdosed on Advil everyday for my headaches, had night terrors so vivid I couldn’t sleep alone, blacking out about 3-4 times a week, and that’s only mentioning a few issues. Doctors started telling me I was crazy..some said I was bipolar. I actually started to believe I must be. Then a friend pointed out I could have a gluten allergy. Me and my boyfriend started researching like crazy and decided to try and come off gluten just to see. Within a week I started going to the washroom, bloating went away, and my mood swings got less severe. I made an appointment with my family dr to ask for the test, however I had to wait a month. I kept eating gluten free, and by the time I got to see her, I felt like a new person. She hit me with the news that I would have to start eating gluten for a month to get tested. I tried for one day…the old me returned with avengeance. Skipping forward to now, 2 and a half years later, I refused to start eating gluten again just to be “diagnosed”. I couldn’t care less what others think…and like gluten dude said…nothing wrong with a little white lie..just tell people you were diagnosed. You know how sick it makes you. Diagnosis or not, it’s clear that without gluten you are healthy and happy, and able to live your life pain free. That’s what matters. On a side note: I’m so happy this blog exists…THANKS GLUTEN DUDE!!! So many of us think we’re alone…but we really aren’t. So thank you!!
As far as I am concerned, you have Celiac Disease and you should believe it, live it and state it!!
The only exception to this rule for me is someone who tells me they have Celiac Disease while they are eating wheat thins and drinking a Miller Lite…
GOOD LUCK – My anemia and Vit D cleared up on GF. 🙂
When I was first advised to stop eating gluten in 2006 I did not exhibit signs of Dermatitis Herpetiformis (DH) a month after being gluten free.Yes, my Doctor at that time should have done the blood test before having me go gluten free, but let me say he was the first and only doctor after 20 plus years of being sick to even try to help me, current date he’s educated himself on how to treat a patient in the beginning stages. I was sent to the lab for a full Celiac blood panel which I tested negative for. My Doctor decided not to put me through the gluten challenge in order to get a positive result from an intestinal biopsy, I was so malnutrition during that period of time he felt it wasn’t necessary to put me through tests at the expense of my health.
I continued to follow a very strict gluten free diet. Months turned into years, I had six surgeries in a five year period, appendix, gallbladder, thyroid removed, ovary’s, uterus, scar tissue blocking my intestines and so on. After everything you can live without was gone I still exhibited symptoms of Celiac Disease, severe chronic fatigue, abdominal pain, burning sensation along with itchy skin with no rash on arms, legs, chest and stomach, constipation, malabsorption, vitamin deficient, brain fog, memory loss, depression, anxiety, and diarrhea. I spent my days continually going over my diet I read labels I looked up ingredients it got to the point where I eliminated all canned foods, then all packaged foods, then anything with more than ten ingredients. I eventually got to the point where I only ate fresh fruit, peanut butter, brown rice, beans, almonds, walnuts, chicken, eggs, yogurt, on any given day at any given moment I could rattle off every ounce of food in my house. I was still sick. I still didn’t have an official diagnosis and honestly I didn’t care because I knew I was sick. What did bother me and I understand where you’re coming from is the people at work could have cared less about me or my illness, they were in business to make a profit and if they provided lunch so we could work through and meet sales dollars, it was a problem for them for me to leave and pick up some fruit or whatever was available near by. Even when I had an official diagnosis they still harassed me, I get in trouble or the look if I use the bathroom to often or any type of special accommodation. I get eye rolls from my manager, as you know the brain fog, and memory loss effects productivity and when you’re being talked about and put down it really effects how you do your job. I feel your pain and I’m so sorry to hear anybody have to endure this type of pain. I’m currently out on disability I’m trying to work through the grief and find a new career. Anyway,
In 2010 I continually would get an unexplained rash that seemed to appear when I would have a gluten reaction, I wasn’t sure where it was coming from, I began closely examining lotions, shampoo, toothpaste, everything in my home that wasn’t ingested, at least not intentionally. In December I had a biopsy of a lesion on my forearm and sure enough it came back positive for Celiac Dermatitis. I was so relieved to finally have a diagnosis but I was not at peace because I still had no clue where it was coming from.
What I’ve come to learn through my on own personal healing process is, when DH is accompanied with intestinal Celiac Disease it appears to make the body much more sensitive to any amount of gluten and or foods deemed inflammation causing. Once I eliminated brown rice, beans, corn, corn starch, and all commercial foods labeled gluten free by the FDA 20 parts per million standard, my body began to heal. It’s been a ride.
Once the results from the skin biopsy are determined positive for Celiac Dermatitis it’s not necessary to perform an intestinal biopsy to establish a diagnosis for Celiac Disease in a person with DH; the positive result from the skin biopsy is considered “gold standard” it’s definitive according to the Celiac Disease Center in Chicago. Best wishes and I totally agree with GD, once you hit fortyish you care a whole lot less about what others think unless it becomes abusive. Be you’re own advocate and if it doesn’t feel right move on. Hugs & Gluten Free Kisses, Stacy
I am officially NCGS. I have taken many tests (including muscle testing) and everything but the muscle testing comes back negative (isn’t that interesting). I even was rushed to the hospital in anaphylaxis shock (an IgE reaction to wheat) after consuming wheat for the first time in over a year. The allergy test (for an IgE immune response) came back negative. It’s the tests. The tests suck too. The common test done for a celiac panel in the doctors office test only for an immune response to gliadin….only one peptide of hundreds in the gluten composite. Cyrex Labs does a test for many other commonly problematic peptides so it can be more thorough than what the MD’s are running.
In the end, you really have to use common sense. If it makes you sick, don’t eat it. I don’t tell people I have celiac because I don’t think I do. I do not carry the genes. Although I react at the same level of a celiac…cross contamination, etc. I do however use the allergy card. People understand “allergy.”
It certainly is a journey. Good luck to your follower.
It’s definitely amazing to have a doctor who doesn’t suck. I finally connected the dots between my 20+ symptoms and stopped eating gluten during a period when I didn’t have health insurance. Once I got insured again, I made an appointment to talk with my new doctor about doing a gluten challenge. Mostly this was so people would take my self-diagnosis more seriously, particularly myself…
My conversation with my doctor was fairly short. I described the symptoms I’d been having, and how they had improved over the year I’d gone without gluten. She said there was no reason to put my body through the suffering of a gluten challenge. My body doesn’t care if I call it celiac or NCGS. It only cares about what I feed it.
This happened to me, just not as many doctors were involved. I hate doctors, and only go once a year for my check-up, or when I might be on death’s door. I had my gallbladder out when I was 33 and after that everything changed. I started having horrible gas and bloating, joint pain, bone pain that ran up and down my shins, restless leg syndrome, and nausea. I have a cousin who died of bone cancer, and I remember him saying before he was diagnosed that he had pains up and down his arms and legs, so I went to see the dreaded doctor. She came back with everything is ok, except for the fact that you have rheumatoid arthritis. Later on it was diarrhea so bad that I made sure to have Imodium in my purse before I left the house. Sixteen years later my now grown daughter tells me I might be lactose intolerant, so I go off dairy and feel a little better, but I’m still sick, so she then says to me, “maybe you’re gluten intolerant”, so we got online and I had almost all of the symptoms. Hair loss, eczema, oily stools etc. I immediately went gluten free. Well, my family was fine with it except for my mom and sister, so when they went out of town together in October of 2012 for 2 weeks I lied and said that I had an appointment with a Gastroenterology doctor to be tested, and was very sick eating a lot of gluten for two weeks. My test came back positive and I refused the biopsy. They finally quit harassing me and left me alone about my Celiac, and now I don’t feel the need to apologize constantly about not eating at their houses, or at certain restaurants.. My Gynecologist did run some blood work last year and said that I was Anemic and Vitamin B-12 defficiant. I’ll never poison myself again, and when someone asks, I tell them flat out that I have Celiac Disease, I have to take care of myself first, and not worry about what others think or say.
I don’t understand why people have to question it anyway. Nobody questions an allergy so why do they question celiac and NCGS? The “on paper” diagnosis isn’t so important as long as you know what you need to do. I had no clue what was causing my issues and was lucky to get an answer right away. I truly feel for those who spend years looking for an answer.
And doctors are so freaking lazy!!!! I went to see my GP about 3 months after getting diagnosed because I was still feeling run down all the time. The first thing he did was tell me it was stress and prescribed an anti-depressant. If there’s no money in it for doctors it seems they don’t believe it’s real.
I tend to say I have a MASSIVE gluten problem, like celiac disease, and they don’t want to be around and see it if I get glutened.
Most people don’t ask any more, but if they do, I start with, well, first comes the vomiting….
No one has pushed me beyond that so far.
Welcome to our club, sounds like you are doing the right things
Funny how much I thought I was the only one crazy! It is exhausting to fight the battle. I am technically self diagnosed. A year of being treated for H pylori, getting a colonoscopy for chrones, treatment for depression, treatment for ulcers, etc. After throwing up blood (praise) and finally getting a scope, the GI office called and said “you are celiac” from the biopsy results. I knew NOTHING about it. She told me they needed to “confirm” through blood work and then to immediately go gluten free and I will be fine (literally the extent of the call). I had already been off obvious gluten (eating small bites and for a few months as they were trying to figure out what was going on. She told me to reintroduce for a few days and get the blood work. Ate a bunch of gluten (was miserable) and got the blood work done. The GI office calls after and says “your blood work is fine which means you are not celiac”. WHAT?!!!!! I had done enough reading at this point to know blood work can come back fine. I questioned her and said “I am so confused, you just told me last week you were positive I was celiac”. She said “if you truly were, your blood work would show it”. AHHHH!!! I was in tears. I had been seeing a D.O. who specialized in GI for a few months and had all results sent to her. She was blown away. She cannot diagnose it and counseled me to not stress about the diagnosis but that she believes I am 100% celiac and to get off all gluten immediately. It took a LOT for me to surrender to her counsel. Being part of a world that bows to the god of doctors and diagnoses messes with your head to include fear of not being looked at as legit. At the end of the day, so thankful I gave up wanting the validation of a specialist and the diagnosis. The NIGHT and DAY difference in my life is so dramatic. We have a LOT of stress in our life after adopting a teen a few years ago. It was easy to chalk everything up to that stress but now to see so much of what I was dealing with was celiac! So thankful! Surrendering the diagnosis was incredibly difficult but so thankful I did. Finally got my mom a few months ago to go off all gluten. She was diagnosed with rheumatoid arthritis, osteoporosis, migraines, etc. All her symptoms are now gone. She looked 5 months pregnant all the time and that is gone. No more headaches and brain cloud. Exhaustion lifted. Fully off steroids! She thought with all she had been through the doctors would jump on the celiac wagon but nope! She had to do the same without a diagnosis. Crazy! My grandmother at 80 was just diagnosed schizophrenic and in the past osteoporosis, arthritis, etc. Sadly we probably won’t be able to get her the help because without the diagnosis the assisted care won’t help. Took my kids off gluten after reading stories. Almost positive my 10 year old is celiac. SEVERE growing pains since 18 months old. Last few years so severe she could hardly walk to the car from school. Literally never a time without growing pains. She has always been borderline failure to thrive. Since taking her off gluten, 6 months free of growing pains and has grown almost an inch. CRAZY!
At times, I still find myself desiring the diagnosis to prove to people this isn’t some preference but each time I get a slight cross contamination for sick for days, it reminds me to not care what others think…even the professionals. Quality of life far outweighs it all. Praying for the day of accurate testing not requiring the biopsy.
I too would love to have an official diagnosis of celiac disease. I have hyopthyroidism, low IgA (found on first celiac panel taken nine days after starting to cut gluten, all other values in the low negative range), a positive gene test (DQ8), low iron (came up on several blood tests over the years), suspected iodine, selenium, and magnesium deficiencies, and am highly sensitive to gluten (can’t even eat food touched by someone else with gluten on his/her hands). I just assumed NCGS after my first negative celiac panel but began to have my doubts when I began researching leaky gut syndrome (other food intolerances/reactions had surfaced) and the low IgA. When I finally went to a GI and had an endoscopy done, it had been about five months since the blood draw for the celiac panel was done. My doctor wanted to see what she could find; she said the damage heals slowly. Nothing but inflammation (mild chronic non-specific duodenitis) was found. At the time I was still being exposed to unknown gluten contamination but was eating gluten-free. Over the months since when I realized how sensitive I was and when I realized that antibiotic use could contribute to celiac risk (was on antibiotics for decades for acne), I started to become more and more convinced that I had celiac and not NCGS. The only other testing option I’ve come across is called the “in vitro gliadin challenge”. Anyone here know of it, had it done, or know someone who’s had it done? I spoke to someone at Mayo Clinic, and they supposedly do this test. It’s just how to get it done. I’ve discussed with my doctor the possibility of having my tissue samples taken last year sent to Mayo for the test, but I’m not sure that’s going to pan out. The in vitro gliadin challenge may also help “non crazy girl”, as well as many other stuck in diagnosis “no man’s land”.
I was on antibiotics for a decade, not decades. 🙂
The latest study I read (in 2012) concluded that “in vitro testing of mucosal HLA-DR to gliadin is an accurate tool for diagnosing celiac disease” but I am not sure how quickly the AMA will embrace it and put it
to clinical use ….. sigh.
We can only hope it happens SOON!.
I’ve read the same, and I agree; I hope it’s soon! Couldn’t come soon enough for me!
Dear NonCrazy Girl –
I’m right there with you! I neither have the money nor the patience with the medical community to try and get an official diagnosis.
Back in 2012 when my symptoms first started to severely manifest (migraines, brain fog, numbness on face, cramping, ect) My regular doctor sent me to a neurologist. After an MRI that ruled out stroke and MS, he said “you have Chronic Migraine for life.” patted me on the back, and sent me on my way with a prescription for a beta blocker (hard core medicine.) I refused to take the beta blockers and asked if there was any other way to control my migraines, which were happening every week. He suggested I take Vit B-2 and Magnesium. Or he could put me on a steroid.
Needless to say I took the supplements, but nothing really improved. Things actually got worse, especially in the cramping department. I went to my Gyno and she sent me for some ‘female’ tests and that was a whole other fiasco that led to the assumed diagnosis of endometriosis.
Fast forward to the end of the year and things weren’t any better for me overall since I had seen the Neurologists in Feb. At that time he said that I would have to get a follow up MRI in six months, so sept 2012 time frame, but dang those things are expensive so I skipped the 2nd MRI. By the end of the year my HRA account w/insurance was gone and I was now having to meet my deductible.
Still, I was suffering from all of my symptoms, so I got a different neurologist who sent me for another MRI in Dec 2012. More money down the drain if you ask me! She read my file, listened to my stories and concluded the same thing and prescribed me the hard core medicine I didn’t want to take 11 moths earlier but I was desperate to feel normal again so I took it. It was for high blood pressure (which thankfully I do not have) but also can help people with chronic migraines. I only lasted 7 days on it then stopped since it made me feel horrible.
In 2012 I had been to the Drs office ( regular MD, Neurologist, Gyno, ect) once a month since Feb. That’s 11 months out of 12! I joked that it was my year to keep the medical professions paid well, since all the Visits, MRIs and one minor surgery that I now question if I should have even had. By December, after seeing the last neurologist and getting no where I was DONE with seeing doctors. Had I stuck with the MD professionals, I would believe myself to be diagnosed with Chronic migraine for life and endometriosis. Not one of my regular doctors thought that it could be something that I was eating!
In 2013 I went to my brothers holistic doctor who, believe it or not, actually listened to me and said “Ok, i know you have all of these migraines and other issues, but what I want to know is why? What is the root cause of them?” Halleluja! Someone who wanted to get to the bottom of the symptoms, not just treat the symptoms. Thus started my journey to becoming GF. It took several months of going off of gluten and then back on to confirm that I cannot tolerate gluten at all in my diet. Then something amazing happened. About 4 months of being completely gluten free all my symptoms went away – the migraines, numbness, brain fog, and cramping. I was amazed!
Like you I thought about getting an official diagnosis, and even had a blood test done in August, but it came back negative since I was GF and refused to go on gluten just to see if the antibodies would show up in my blood.
So, like the Dude said, “who gives a shit what anyone says” And if it makes your life easier to say you have Celiac’s then say that! You have gone though enough mental and physical anguish due to gluten as it is, don’t let the stress of assuming a title get in your way from knowing what you already know. Gluten Sucks!
I’ve had a similar journey although it was brought on by extreme anemia. All my biopsies and blood tests returned negative for celiac, but I had already been eating a very clean diet, making everything at home and avoiding gluten. So anything would have been false anyway. The GI doctor made me mad because he just told me to go on iron pills (yuck!).
I too met with a rheumatologist who was (still is!) fantastic! She has always been extremely attentive which is way more than I can say for other doctors. When she looked at me a year after I cut gluten 100% out of my diet, the fact that I was healthy, had put on a healthy amount of weight, etc. told her that no further testing needed to be done. She told me to keep doing what I am doing because it is obviously working. So, I may not have an “official” celiac diagnosis, but I know how getting glutened can knock me out for a full week and that is enough for me to avoid it!
I feel your frustration, but I hope it doesn’t get you down…you know what’s best for your body and no one can force you to eat something that you don’t want!
Crazy girl and Gluten Dude…
You do NOT have to be on gluten to get tested anymore! If you are off gluten and have a negative result, then you know your GF diet is working. BUT, you may also still have postive results due to the fact that you are eating cross-recative foods or somehow not avoiding all gluten sources.
Here’s a link to an article on thedr.com which explains all of this. http://www.thedr.com/images/stories/reintroduce_gluten.pdf
You should also explore the website for the most up to date research on gluten sensitivity and the testing available for gut permeability and cross-reactive foods. After 15 years GF I was still having issues, I took these tests a year ago and found out I needed to eliminate a whole bunch of other foods because my gut was seeing their proteins as gluten. (Such as Dairy.) I now fel completely healed. My gut is finally happy again after about 18 years!
This again? 🙂 lol
Okay, one more time……anyone who done the research knows that there are no valid tests for “gluten sensitivity” at this time, nor is there any validity to “cross-reactive foods to gluten” despite what some internet sites may claim. NO celiac researcher has validated these claims.
When this material is published in Pub Med and validated by celiac researchers, let us know.
Thanks for the comment Jeramy and I’m glad you’re healing. That being said…this is the same “Dr.” who:
– Is using every sales technique invented to make as much money as possible from his “summit”.
– Who called it “ground breaking” when another celiac specialist says he lets his celiac patients drink regular beer.
– Linked dairy with depression and suicide.
– Called myself and Jennifer E. out publicly because we did not support his message.
He spreads fear. And then he charges for it.
This is someone I will never support, in any circumstance.
I’m shocked at how stupid doctors are about something so serious. I got sick in June. With aan array of symptoms that didn’t seem to fit anything. Bu July I was using a cane, and by October I was using a seated walker and my pain management dr was trying to get me approved for a wheelchair. I’d been to 8 different specialist and nothing was coming back of what was wrong. Intact I ended up being over medicated by my personal physician. She seemed to think it was all in my head. Because of her stupidity I had to go into a detox center (another horrible story on its own). With determination I refused to be diagnosied with “chronic” anything and started my own research. Recalling that a doctor in 2005 saying you have an intolerance to gluten and need to consider cutting it out, which I did halfass. I sought out one more doctor, where I was told to remove gluten from my diet and to do a cleansing detox including a drink (all fruit & veggie), a detox foot soak & bath soak. With no gluten in my diet & natural detox I began using just the cane in weeks and walking with no cane and no pain shortly after. When I went back for my follow-up she noticed right away that I was feeling better and informed to do the actual test I would need to add gluten back in, which I responded with a big fat “HELL TO THE NO!” I don’t need the test to tell me what wrong. I had already had a few slips while eating out and became violently I’ll, why would I do that on purpose. I did go back to one quack who told me that gluten intolerance or celiac is something you have to be born with, that I wouldn’t have these symptoms just come about in my late 30’s. When I asked him his thoughts now he said I could test you and prove you wrong. Of course I have no gluten in my body. He then asked me to leave. Doctors need to be educated, and should be held responsible for their misdiagnosis and mistreatment.
To the one who posted:
Hon, you have my full support about saying “I have celiac” if you are met with resistance, but I will tell you this: It carries about the same weight as saying “I have a gluten intolerance.”
I still get eye rolls, I still get glutened on occasion, I still have to follow a GF diet and I still have people treat me with disbelief sometimes.
I still can’t eat lots of other foods because of a damaged gut and a histamine intolerance and I still have complications.
In my eyes, we’re just one big happy gluten- intolerant family.
TO add to the discussion, people should be aware of this:
No testing will diagnose a gluten sensitivity.
No hair analysis, no “muscle testing”, no “NAET”, no urine samples, no
live blood cell analysis, no licking a PH test strip, no stool testing, no IgE skin pricks tests, no IgG4 tests….and certainly .none of the
gluten sensitivity arrays offered by various internet labs.
THEY DO NOT DIAGNOSE ANYTHING.
From the Univ of Chicago Celiac Disease Research Center:
“There is not yet reliable data about cross-reactivity. As for the alleged possibility that many gluten-free foods or drinks (such as coffee, milk, orange juice, etc.) would trigger symptoms in celiac individuals due to hidden antigens mimicking gluten or cross-reacting with anti-gluten antibodies, it must be clearly stated that this is all false information, devoid of any scientific basis, and must be rejected as untrue.”
Q : Why don’t you recognize tests (stool tests or otherwise) for non-celiac gluten sensitivity that are currently available through companies like Enterolab or Cyrex?
A: We only embrace tests that have endured rigorous scientific evaluations. So far, these tests have received no evidence-based support.
Enterolab has never successfully published anything on the accuracy of stool tests (nor have any other stool test manufacturers, to our knowledge) making it difficult to confirm the research results. Because of this, we must make our decisions based on what has been published; Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease.
We can say therefore with confidence that the test currently being used by these labs is not good enough. In fact, while it is true that about 40% of people with proven gluten sensitivity have elevated AGA-IgG, it is also true that about 15-25% of the healthy individuals who have absolutely nothing wrong also have elevated AGA-IgG. Hence, about 60% of gluten sensitive people do not have elevated AGA-IgG (making the test not sensitive enough); and about 20% of normal, non-gluten sensitive people have elevated AGA-IgG for no apparent reason (making the test not specific enough).
Further reading: “Detection of secretory IgA antibodies against gliadin and human tissue transglutaminase in stool to screen for coeliac disease in children: validation study” at BMJ.com.
Please, read the science before wasting your money.
BOTTOM LINE: If gluten makes you sick and causes symptoms, intestinal or extraintestinal–YOU HAVE A GLUTEN INTOLERANCE.
Don’t give a rat’s butt what people think. Take care of yourself.
Be well, be happy.
I don’t know about the other Internet tests but I did research Dr. Fine before giving any money to Enterolabs. I know he is faulted for not having his research – what is the word? vetted? peer reviewed – whatever – but I did carefully consider his educational background, professional credentials and his underlying hypothesis and the fact that it was based on real research done by another scientist – Anne Ferguson, who appeared to be widely respected. From what I gather, most official disapproval isn’t because he is necessarily flat-out wrong but that he has veered from the traditional path with offering his lab tests to the public before they have been sanctioned by TPTB.
I can live with that. Maybe he will be proven right, maybe not but over my lifetime I’ve seen how the scientific establishment can be hostile to new or different theories. It’s hard to take them seriously when those same authorities basically withhold lifesaving options from very sick people, thanks to their rigid testing guidelines. (I went through that with being hypothyroid, too.)
Why shouldn’t the option of going gluten-free as a test in itself be offered to any ill person with celiac symptoms, when another diagnosis can’t be found and other similar diseases have been ruled out? Maybe then people wouldn’t feel compelled to get tested from offically unsanctioned sources.
I really do feel that Enterolabs is honest with what they are doing. and they don’t deserve to be treated like snake oil peddlers. (Not saying that is what you are implying! but others have.) I was prepared to keep searching past gluten intolerance if my genetic tests hadn’t shown any CD markers but I do have both HLA-DQ2 and 8. It was a relief to have at least some justification for trying the GF diet and I’m not sure how long it would have taken me to get to that point without their testing. So for me, it was worth the money.
Would I have preferred a more traditional way? Sure, it would make things easier. And I would welcome a path to an official diagnosis if I could get it without poisoning myself but that doesn’t seem likely anytime soon.
Anyway, that’s my two cents about alternative testing and the reasons many of us do it. 🙂
I agree with you, Terry. I spoke with Dr Fine about the comments I hear about “lack of peer reviews.” He said he has submitted his reports/findings multiple times for peer review and they keep getting rejected. Interesting.
That’s interesting because from everything I have read, he has not submitted his testing methods or research for peer review.
If he has submitted it , then why would it be rejected if it has validity?
Terry asks: “Why shouldn’t the option of going gluten-free as a test in itself be offered to any ill person with celiac symptoms, when another diagnosis can’t be found and other similar diseases have been ruled out? Maybe then people wouldn’t feel compelled to get tested from offically unsanctioned sources”
I don’t disagree! 🙂
but who needs anyone’s approval to make a dietary change? Who needs a test –especially one that does not diagnose anything–to tell them it’s “okay” to change their diet?
If I had never gotten a DX, I would have still gone GF and never looked back.
And I went the “alternative route” when no medical doctor could help me. For 3 years!…and all that happened was I spent more $$–thousands of dollars— on BS that did nothing for me.
Going gluten free costs NOTHING and an ill person can do it without permission from anyone.
Can you see what I am saying? 🙂 That’s all my point was.
I completely agree with what you are saying, but when I went GF I was still thinking I couldn’t have CD because I was overweight and didn’t have intenstinal symptoms until I started eating the amount of gluten required for the test. If you are desperate, you’ll try anything but sticking to something forever – well, some of us can do it and others need that validation. At least in the beginning.
It can be hard watching self-diagnosed people get mocked in the media and by their doctors and often other gluten-intolerant people with official diagnoses. It messes with your confidence and I’ve seen others go off GF even when they were doing well. Or not even consider trying it.
We are ultimately responsible for our own health and have to do what we have to do, but without a formal diagnosis, it can be a challenge.
I diagnosed myself 20 years ago. I was sick of not getting doctors to listen and test me. An acupuncturist saved my health and I am grateful to the journey he sent me on back then. 3 years ago I had a female MD agree with me. It gave me some satisfaction, but after living so long without a proper diagnosis I have learned not to care. My body is better for me listening to it. Tough thing now is my 8 – year – old daughter may go on the same journey. Blood tests negative and we all agree she’s too young for intrusive biopsy procedure which at her age may not show much either. So we will listen to her body and give her the strength to do so when she is older.
I too am self-diagnosed. I suffered for six months, all the while getting lots of tests but no answers. By the time I figured it out from doing research on my own, I was tapped out and too run down and desperate to feel better to even think about getting tested for it. I figure the health care system got enough of my money already. In a crazy coincidence, I found out since this all happened from my mother that a family friend (who is my mother’s age) also diagnosed herself with celiac disease. I have no doubt about it and thats what I tell people.
Does anyone know if NCGS causes malabsorption and growth stunting? Or is it ‘only’ other symptoms without the malabsorption/GI damage? Since going GF about 18 months ago, I have grown an astonishing 2cm taller at 27 (!!!) and having only grown 0.5cm from 14-25.
I have a whole host of CD symptoms, including mild osteopenia in my spine. My psychiatrist believes gluten was causing malabsorption and has long suspected an auto-immune disease was/is complicating my severe depression, but no other doctors will entertain the idea. I managed to get my GP to run the CD gene panel, it came back as <1% chance. All CD/NCGI symptoms have either improved or cleared up since I went GF having noted that gluten was causing my GI issues and giving up on doctors. I won't know about my bones until my next DEXA in 2 years time.
The height thing is definitely accurate. I have multiple, reputable measurements (hospitals, specialists etc) going back several years. 3 x readings at 25, 4 x current readings, countless measurements at 14/15 years.
NCGS does NOT cause villous atrophy and malabsorption as it does with celiac, Sam.
That’s the major distinction between the two conditions.
Sam, what was the genetic test result?
Thanks Irish. The results were:
DQA1*05:01 = Not detected
DQB1*02:01 = Not detected
DQA1*03 = Not detected
DQB1*03:02 = Detected
Results: One chain of the HLA-DQ8 molecule was detected by real-time polymerase chain reaction and high resolution melt curve analysis.
Comment: In the absence of both the alpha and beta chains of the HLA-DQ8 molecule, the genetic risk of coeliac disease development is <1% in symptomatic individuals. In relatives of individuals with coeliac disease, this genetic variant implies <1% risk of disease development.
(N.B. No relatives diagnosed with CD, but many with gluten and lactose intolerance, which I also have but which has improved post-gluten).
Well, Sam, my GI doc biopsied a man with neither” celiac-associated” gene, negative blood panels and he had full villous atrophy.
I am glad you are wise enough to stay off gluten, despite what doctors may think. Continued good health to you! 🙂
There are other things that can damaged villi…not just celiac disease so yes, one could be absent of the genes and have a negative blood panel and then have damaged villi
Thanks Kim, I will look into that.
Causes of Villous Atrophy Other Than Celiac Disease
There are many causes for villous atrophy, the most common being immune deficiencies, food allergies and Giardia infections. In addition, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar.
Human immunodeficiency virus enteropathy
Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)
source: Univ. of Chicago Celiac Center.
Moderate to severe duodenitis can also mimic celiac disease damage…
Differential diagnosis of chronic non‐specific duodenitis
The differential diagnosis of duodenitis includes mainly GSE. In peptic duodenitis, prominent foci of polymorphonuclear leucocytes and villous atrophy may be difficult to distinguish from the changes seen in GSE.21 In addition, typical features of GSE may coexist with infiltration of the polymorphonuclear leucocytes in the lamina propria, in the crypts and extending focally into the surface epithelium, and with focal DGM.21
Features useful in distinguishing peptic duodenitis from GSE include the relative lack of architectural changes in non‐specific duodenitis, the scanty polymorphonuclear leucocyte infiltrate and the absence or focal presence of gastric metaplasia in GSE.21
Severe inflammation, however, may be very difficult to distinguish from GSE and some assessment of IEL, together with the clinicopathological correlation, is the best way to distinguish between the two different causes of inflammation in the duodenum.21
Active duodenitis is less common in patients taking NSAIDs, but is strongly associated with gastric metaplasia, H pylori‐positive gastritis and duodenal ulceration.46
The above is what REALLY makes me wonder about the finding of non-specific chronic duodenitis on my biopsy. I rarely use NSAIDs, don’t drink alcohol, and wasn’t under what I thought was extraordinary stress. H pylori wasn’t found either.
Thank You! I could of written that to describe myself (symptoms vary…). I went through the same issue. I went to doctor after doctor for about eight years for issues such as heart palpitations, fatigue, dizziness, rash on my arm, severe anxiety, panic attacks….and what I kept getting told was, “Nothing is wrong with you” which translates to, “It’s all in your head!” Repeatedly I was told it was just stress. I had other symptoms as well, but at the time I thought they were unrelated. I started to feel embarrassed to bring anything up at the doctor in fear that they would label me a hypochondriac! Towards the end of those eight years, I considered the fact that I might have a mental illness and it scared the hell of me. I kept searching and happened to read “Wheat Belly” and a lightbulb went off. I was so discouraged with doctors that I just started eating gluten-free since I figured it wouldn’t hurt me if I was wrong. Low and behold, amazing difference! I will spare you from the looooong list of improvements but now I am like you. I am officially undiagnosed, but KNOW that gluten is my enemy. For awhile I felt so guilty when I ate out, like I was a whiner or an attention seeker. I was told by a doctor that I could eat gluten for several months and then get tested. NO WAY! I feel cruddy if I accidentally eat gluten. What a suggestion! So, I have decided that I go ahead and speak confidently that I can’t eat gluten and emphasize that it makes me sick when I eat out or if anyone asks. I don’t mention that I don’t have the bloodwork to prove it. It is none of their business anyway. I know how I feel.
My story is similar to many of those already given, but with a few twists. For over 35 years, I had a chronic recurring rash — but not all over. It occurred in only one (uncomfortable) spot and would come and go, along with major indigestion. I’d been to countless doctors, all who gave me a variety of creams to treat the rash (antifungal, antiviral, antibacterial, anti-eczema, anti-psoriasis, you get the idea). And I was taking lots of antacids, too. Then about 4-1/2 years ago, a friend told me of her celiac symptoms, and I realized they sounded similar to what I was having. I convinced my doctor to do the blood test (it came back negative), but she didn’t see any harm in going gluten-free and recommended I also see an allergist. My test came back positive for wheat, rye, barley, and a few other items — not high enough to be anaphylactic, but definitely worth avoiding those food items. Within about 6 weeks of going gluten-free, I not only felt better, but the rash cleared up without all the creams and ointments. Now, the rash comes back only when I’ve been glutened. Because I still didn’t know if I was Celiac, I went ahead and had the genetic testing done (fortunately, my insurance covered the cost) and that came back saying that I did not have (the most likely) Celiac genes. In the last year, I’ve discovered (with the help of my naturopath and my doctor — yes, they work together, both saying it’s my body) that I have Hashimoto’s Thyroiditis, which also requires a gluten-free diet.
and be careful when selecting your Vitamin D. I found some that had gluten in it…
I tell people I have Celiac and any gluten will make me sick. If I bring my own food to a restaurant I tell the server I have several food allergies so I brought my own food.
It’s not my fault all my doctors were idiots and I had to diagnose myself. My family, friends, and coworkers have all seen how much I improved since going gluten free, none of them question my diet. Most can tell when I’ve been glutened without having to say a word. I’ve talked to some about doing a gluten challenge to get an official diagnoses. They are all against it. My husband and kids told me I had to move out if I did. Maybe I could stay with one of my doctors?
My family doctor finally ran A blood test for celiac after I had been gluten free for a year and told him how I had improved. He told me I didn’t have it because test was negative. I told him it was negative because I haven’t ate it for a year and he only ran half the tests anyway. My GI did run genetic tests which showed I have the genes. But he pretty told me it was in my head. If I knew something I ate had gluten in it I would have a reaction to it. Didn’t care about the examples of eating something and finding out after having a reaction that the item had gluten. Don’t know how bloating to look 6-7 months pregnant, cramping, nausea, and shitting undigested food and blood was all in my head. I would think if it was all in my head, my head would of chosen a less painful and lets face it, less messy symptoms to have. Since I refused to do a gluten challenge he said he couldn’t do anything else for me.
There are days when the thought of going to my doctors office with a subway sandwich in hand and making myself at home in his waiting room has crossed my mind. Maybe he’ll decide it’s not in my head when he sees me blow up like a balloon, balled up on the waiting room floor crying like a baby because of the pain, explosive diarrhea, and crazy mood swings going between laughing, crying, and uncontrollable anger, while carrying a bucket because I feel like I’m going to vomit at any moment. Then by the end of the day he can watch me fall asleep standing up because the fatigue is so bad. All while explaining to his patients that I had to prove to the doctor I was sick and it’s not in my head and I’m not crazy. Ya know, I do have few sick days to use up…
you just made my day reading that 🙂
Yep, self diagnosed as well, and at first I struggled with it, but with so many of my problems gone, I tell folks Celiac because any tiny cross contamination sends my body into a free fall mode.
I also had joint and muscle pain initially which started spreading and eventually wound up all over especially my jaw. I literally carried a heating pad with me everywhere I went. I went from a runner to someone who could barely walk to the couch. So I was diagnosed with Fibromyalgia as well. I also had the start of arthritis in some small joints in my hands. Then came the severe reflux and constipation ( try 6 days with no bathroom stops), low blood pressure ( 85/60) hand and feet numbness, extreme PMS, insomnia and night sweats.
Meds did nothing for me.
I considered going out on FMLA because I could barely work, ironically in a hospital.
I researched on my own and tried gluten free for Fibromyalgia and everything slowly started going away. Everything. So no, I do not have Fibromyalgia after all.
My blood pressure is back to normal as well.
I was gene tested which was “negative”, however after researching that for 2 weeks on my own, my variant DQ2.2, is actually found in a low percentage of celiac patients and since I also have a fairly rare clotting disorder, it would not surprise me to be Celiac. I also have an extremely low Vitamin D level (18). That all put together is enough for me.
Trust me, I work in a hospital and the amount of mistakes made are frightening, trust yourself.
Your health history is very much like mine and I have the HLA-DQ 2.2
variant as well. It accounts for 2% of all celiacs. (there will be more as the medical community starts diagnosing as it should)
You have celiac. IMHO. (not a doctor, just know one when I see one!)
The fibro DX is a catch-all bullshit wastebasket DX for lazy doctors.
Like “IBS” and a host of other “syndromes”…. yeah, so what CAUSES the syndromes, docs?? argh.
Good for you being your own best advocate. I would be dead right now had I listened to the docs. My new enlightened celiac-savvy GI doc just shakes his head at all this because he knows so many people fall through the cracks. I did–for decades.
Continued healing to you!.
I was so sick eating gluten while waiting for the Gastro appt. that I knew I couldn’t live like that for 6 weeks and canceled. I didn’t realize at the time that I could have just lied and said I was still eating gluten and gotten an official “gold-standard” diagnosis. But water under the bridge and all that… I’m fortunate that my family doctor believes what his eyes tell him – even before I told him I had gone GF, he told me I looked so much better. 🙂 After the years of fruitless testing, that was my gold standard – when your doctor wants to know what you’ve done to account for such a change.
What I worry about (since I’m in my late 50’s) is what happens when it comes to nursing home years. My husband – who is GF/DF for Multiple Sclerosis – was in a rehab center after being hospitalized and they kept feeding him nasty gluten filled stuff and refused to keep him on his diet without that gold standard diagnosis of celiac disease, even when it was obviously making him sick. I ended up having to go there for every meal to supervise and send stuff back. He was supposed to be there 3 weeks and we left after 12 days, AMA.
I guess I’ll cross that bridge when I come to it. All I know is if someone wants me to eat gluten so they can have a piece of paper to believe, they’d better be prepared to hospitalize me during the process.
Yep, I’m gonna have to agree with the Gluten Dude…who gives a shit what other people think or say?
I gave my doctors 10 years to figure out what was wrong. I too had IBS (not!) They tested me for everything BUT Celiac (lactose, fructose, sucrose, and my favorite the small bowel barium study!) Never once was Celiac considered an option. Never once was a blood test or endoscopy recommended. And since I didn’t know about it, I didn’t know to ask.
When I did SELF-DIAGNOSE and realized for the first time in a decade I was spending less time in the bathroom than even I could remember, I did a happy dance and proceeded with my life gluten free. A little while into my journey I realized that
I’d have to eat gluten again to be tested properly and I said, “No way! Never, ever! Nuh-uh!” And so I’ve never been tested, and I won’t be. It doesn’t matter that much to me.
I am a member of our local Celiac Support Group (I even do the newsletters) and I’m not a bonafide Celiac.
I’m just gluten free. If someone pressed me on the issue, I tell them that I’m a non-Celiac gluten intolerant and leave it at that. I don’t tell people I meet that I self diagnosed. What business is it of theirs?
I wear a daily sweatshirt hoodie that says in big letters GLUTEN FREE. It is part of my new identity. It is who I am and will always be. It’s my new normal. It’s not easiest of lives but it sure beats the alternative. And I don’t care what other people think. I only care what they try to feed me. And I’m probably not eating it, because I don’t trust them anyways.
I hope you can accept your new normal and learn to just smile and say, “No, thanks. I’m gluten free. I brought my own.” And then pull out something that looks better than what was being offered up. LOL
VERY HAPPY ENDING! You go girl! Hope you keep feeling better!
Irish Heart…Sorry I can’t find the chain of emails about Dr Fine so I’m answering here. Would you like Dr Fine’s email to ask him about the peer reviews? I’m just repeating what he told me to my face when he spoke for my support group.
Please do not misunderstand. I am not disputing what you are saying, hon. 🙂 I am not sure what emailing him will accomplish. If he told you he tried submitting the research for peer review and it was rejected, then that speaks volumes.
And if he hasn’t submitted it (as it appears to be the case ) then, why not?
Having his work peer-reviewed would benefit him –and those who are seeking answers to their health problems—greatly!
Celiac researchers who recognize NCGS as the serious medical condition it is would probably be thrilled to have a valid testing protocol!!
All of us in the GF community would applaud him for helping people get a “real DX” that will validate their suffering.
But until that time, his labs tests for “gluten sensitivity” are not really valid diagnostic tools.
It is heart breaking to hear people talk about their struggle for validation of their many health problems. I listen to these horror stories every day on here and on celiac.com and -I KNOW, because I was one of them for 25+ years. I get it. I really do. It’s why I spend hours each day trying to support people’s decisions to go GF despite negative testing and offering suggestions to make it easier.
Wow! Sounds like my story! Tests kept coming back negative – I’ve had problems all my life, stomach, skin, etc. As I got older it got worse – I was covered in a horrible rash for 8 months, I would break out on my back or hands with a horrible blister rash. Sometimes it felt like someone was trying to pull my intestines out.
I’ve been diagnosed with so many different things including, IBS, Fibromyalgia, Chronic Fatigue. But I could never get them to tell me I was Celiac. Always a negative result.
Turns out I have Dermatitis Herpetiformis
You are right. It is a happy ending. And you are also right that those without a diagnosis shouldn’t care what anyone else thinks.
I’m hunting for a new doctor at the moment, and might be able to finally get the tests done…but I don’t care anymore. It wouldn’t be worth the side effects from having to consume gluten.
Just have to correct you on the “i’m not crazy” song comment. It’s Suicidal Tendencies, not Ramones. Isn’t it ironic…
I had to go outside my “network” of Dr’s at time. Similar to the one that mentioned finding the root cause. I got the blood test that showed enough, with my other symptoms. Also showed H. Pylori
Whatever makes you feel better, diagnosis or not. Next step to get my sister off gluten/tested? Blackmail.
Just going to put this on the end of the pile here, rather than go back and forth with individuals . Gets tricky inserting all those responses. lol
RE: The idea that people need something to “make them” follow the GF diet, so even a lab test that is not necessarily valid is a good idea….?
I respectfully disagree with that one, I’m afraid.
I know many people who adhere to the GF diet for medical reasons and they never got a DX. They do not need one to take charge of their health. I can give you one example:
My 87- year- old mother faithfully follows a GF diet, yet never bothered with invasive testing because she saw her daughter nearly die from this thing and she knows in her heart that her husband had it, too. She read the information I sent her, looked at her own health history and my genetic testing report and realizing the hereditary aspect of this disease, she just did it. Her doctor gave her his blessing. She no longer needs the 3 different meds she was taking for high BP and A-Fib. Her high BP is controlled. She only takes a small amount of thyroid med now because she had to have it adjusted off gluten because her thyroid rebounded. She is healthier and more energetic than most people I know in their 30’s. She did it because she wanted to feel well for the first time in her life.
If she can adapt to it at her age, not caring a bit what anyone thinks about it, then anyone can.
Can’t tell you how many times I have heard this: “I don’t have a diagnosis, but I know gluten makes me sick. What should I do? The GF diet seems so hard but I hate being sick all the time.”
My response is always the same: “How bad do you want to feel good?” That’s what it comes down to. It’s just one food protein, for pete’s sake. One that humans can certainly live without.
If there is no valid testing (just yet) for gluten sensitivity, according to leading celiac researchers, then what does a piece of paper with a bogus lab report prove to anyone? If someone questions you, are you going to whip it out every time and point at it? 🙂
Honestly….I am not sure why anyone feels they have to justify or defend their dietary choices. I know people who do not eat fish or meat or liver or nuts. So what? Seriously, who really gives a shyte?. I know I don’t. I think everyone should eat whatever the hell they want.
My only caveat to people is this: Just do not complain when you feel lousy and refuse to follow the GF diet strictly —when you know full well you have a gluten intolerance or celiac–because then, you’re just being stupid and you brought it on yourself. . (yeah, I said it).
This is just IMHO. Feel free to disregard.
My, my, Irish…….we are on a roll here today! I would listen to what she says as I mirror her feelings exactly. I am the only one in my family to follow a gf diet religiously because the rest of the pack are in denial up to their eyeballs. I was formally diagnosed with Celiac and nearly died from it. Came so close it scared me and I don’t scare easily…..ask Irish, she has met me.
It perplexes the hell out of me that adults are so easily influenced by what others think. I lost that line of thinking somewhere around the 7th grade. I have been ridiculed by family and friends….well, ex-friends, for eating the way I do and I think it all boils down to those types are threatened by people who have so much self control. I have never found it hard to follow this diet…ever. The only negative is losing convenience. What I am rewarded with is better health than most I know and I have 4 autoimmune disease in total, just so you think I have it easy. I am surrounded by people, many of them younger than my 54 years, and they all have multiple health issues they are on meds for or are in pain but ask them to tweak their diet to feel better and they will not do it. Most have the dumbest reasons for not doing so too. I just don’t get it.
For those who go gf and never look back, regardless of a diagnosis or not, keep up the good work and know you are doing the right thing. Dump the idiots from your life who make fun of you for doing so because they are not your friends. Do whatever it takes to be healthy and know you are the one who is doing the right thing. Above all, do not spend your hard earned cash on dubious testing from doctors who really aren’t giving you information you don’t already know, based on your symptoms and a dietary trial!
Thanks, Gem…. but no matter how often we say it, we still cannot get people to see the truth.
Love ya, hon. Thanks for being the voice of reason when I first started out….and I hope I have made ya proud! LOL
I am proud of anyone who takes the time to educate themselves when diagnosed. You pass with flying colors!
It’s funny…it’s okay to say, “I’m not going to go on that rollercoaster; rollercoasters always make me puke,” or, “I get headaches when I miss my morning coffee,” or other observations about how your body reacts under specific circumstances. Why do people have so much trouble accepting “I get sick when I eat gluten”? What’s the dividing line? Is it just that food is such an inflammatory topic? Is it that gluten-free specifically has become a fad and is associated with, e.g., eating disorders and fad diets? I just don’t know.
I think we all want validation from doctors for having a medical condition (and a medical condition that can have serious long-term health effects). But there’s a tremendous irony in expecting validation from MDs for something they know little about and/or could care less about (my own GP was totally floored by my diagnosis, having maintained for years that all my symptoms were stress-related; aside from the shock to his ego for being wrong (or maybe because of!), he was uninterested in any further treatment (“it’s just a diet”.) and didn’t even know there is a protocol for follow-up work. That follow-up testing – my internist does yearly bloodwork for justb about everything – would be the only reason for me to seek an offcial diagnosis. But if you feel well on GF, who cares? So – to the original poster – don’t worry about a diagnosis and you certainly aren’t crazy – just do whatever feels right to you. Being well, feeling well is a lot more important than validation from anyone from the medical profession.
In my experience, being dx’d with Celiac doesn’t do you much good. People still look at you like you’re crazy. Doctors still don’t know what to do with you. There isn’t some magic list of appropriate follow-up care that doctors follow.
My doctor totally looks at me like I’m crazy most of the time, but when I go to him asking for blood work because I’ve been feeling awful for a month, he’ll do it. Then when he sees my blood work, he knows exactly why I feel like crap because usually my B-12 and D are way in the gutter. Then while still looking at me like I’m crazy, he’ll help me get my blood work back to where it should be, and I feel better.
My follow-up care is me being as educated as I can be about Celiac and knowing what’s best for me. You can do the exact things I do whether or not you have an official diagnosis. Take care of you! Do what’s right for your body. You don’t need a diagnosis to do that.
Good luck! And congratulations on deciding to do what’s best for you even though it doesn’t sound like the doctors helped much with that decision.
Just to be clear, I don’t think that Enterolabs claims to show gluten sensitivity of the non-celiac variety. (They will tell you if you have the gene for it though.) But the terminology is what gets complicated. How do you define gluten sensitivity? If you react to it, you are sensitive, intolerant or whatever but the words can be a mine field.
Gluten sensitivity as a non-celiac disorder is recognized medically now, too – further confusing matters.
In my case, I have had decades of various vitamin and mineral deficiencies and medications that have been adjusted as I healed. I’ve never had any luck with T4 for my thyroid, only T3, which supports the not being absorbed and converted aspect. I do think I have celiac disease of some sort versus NCGS.
In a way it doesn’t matter, if you can’t eat gluten, you can’t eat gluten. Yet sometimes it does matter. Some schools won’t accommodate kids without it. I’ve already mentioned nursing homes. Even my doctor was waffling on my Cytomel until I went on the GF diet and it made sense to him then. He looked into Enterolabs and was willing to accept it as an indicator of celiac.
Saying that a diagnosis doesn’t make a difference is fine until it does – and those of you with them really have an advantage. Maybe not in the day to day dealings with the clueless gluten filled world at large but enough of one that it’s going to be a recurring discussion.
I will keep an eye on the in vitro gliadin test (not around when I went GF) and hope it will become available in my area.
“Just to be clear, I don’t think that Enterolabs claims to show gluten sensitivity of the non-celiac variety.”
But yes, they do, Terry…:(
which was my point about getting people to see these tests are BS.
From the front page of the website:
“EnteroLab has developed a unique screening test for gluten sensitivity”
I stand corrected. 🙂 I was working from an obviously imperfect memory.
So I just went back and read my test results and they do use gluten sensitivity/celiac sprue/hereditary condition in connection with the intestinal antigliadin IgA antibodies. They also refer to non-celiac gluten sensitivity in one of the genetic marker explanations in a separate part of the report.
My head hurts.
Re-reading their FAQ, they are definitely not talking about NCGS – which we all agree there is no test for. They really should find a different term for where they use gluten sensitivity as an immune reaction to gluten – using gluten sensitivity just adds to the confusion.
Granted, I’m not a medical professional or anything but their working theory does not seem so far off from the “in vitro gliadin” test – bodily output other than just blood samples can register reactions to the substances in gluten. Reasonable people may disagree with some of the other conclusions he draws but I don’t think he deserves the quack label.
Just to be clear again…I do not ever recall calling him a quack.
No, you didn’t but it kind of got implied in the post you copied from U of Chicago earlier in this thread – the one that had a link to quackwatch. It had the effect, in my mind at least, of lumping a lot of the alternative testing together.
Responding to comments gets pretty messy, so I’m sorry if I misinterpretd anyone’s posts here.
You may have drawn that conclusion, but I was not implying anything
like that at all. You may not know me very well, but I can tell you honestly, I don’t imply things, I shoot from the hip. 🙂
I tell it like it is, sometimes to the dismay of others. lol
So as to avoid any further possible misunderstanding, the three links were not connected to make a statement about Dr. Fine.. I do not think he is a quack, but I still do not see how he is diagnosing gluten sensitivity in people when there are no tests for it yet.
One statement I posted was the position from the U of C, one was a link to science-based evidence from reputable doctors who take the time to examine the published information available and compile a comprehensive data base and the other one from quackwatch was an article regarding the authenticity of of “supposed” testing protocols for “food intolerances” based on real science.
It’s not just someone saying “it’s quackery” in a dismissive opinion –it’s valid information from doctors, health organizations and scientific sources.
They are worth reading, if one has the time. If one would rather not, that’s okay too. Just putting it out there for people to see.
ya know, from what’s i can see there’s really no follow-up with celiac or gluten sensitivity/intolerance anyway. there’s only ONE way to deal with it: stop eating gluten.
if gluten makes you sick, say you’re celiac, don’t eat gluten and be done with it. you don’t have to prove anything to anyone. it’s not like restaurants and bosses and family members are going to demand written proof. and even if you HAD written proof, it’s not anyone is gonna do anything differently for you.
take care of yourself to the best of your ability. that’s up to no one but you.
But there IS follow up care for celiacs.
In have posted it in the FAQ section.
?New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.”
Source: Univ of Chicago Celiac Disease Center
sorry for the cut and paste typos…hope you can read it! 🙂
That’s what’s recommended, but that doesn’t mean doctors know about it. All my follow-up testing occurred because I asked my doctor to do something. It’s not like that’s in the doctor’s rule book for treating a Celiac. 😉
Of course, there is no “rule book” but there are guidelines.
Read any valid celiac research site or Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler and you’re all set.
Look…. I am trying to tell people what they should ask of their doctor –if s/he is not celiac-savvy.
Any follow up care I received the first year was through my own advocacy, then I found a good celiac-savvy GI doctor to help me.
I wrote a thread for Newbies on celiac.com and I mention the follow up care you should receive.
My Gi doc has been invaluable and works with me..and honestly, I love him (and I have no love for the AMA)
Not all doctors are idiots about celiac. Some do get it.
True, true…there are some doctors out there who get it. I get yearly follow-up testing, according to the protocol here in the Netherlands (I’m a long-term expat, Dutch husband). Here a “diagnosis” is mainly a health insurance matter – they pay for any tests and/or follow-up. My internist has been great – and supportive. But basically it comes down to what everyone here has been saying: learning to take care of yourself and give your body what it needs (and, in my case, accepting that I do have a disease). My very late diagnosis meant I’ve lived most of my life believing I was a “healthy” person (whatever that means) who just happened to feel horrible most of the time. A diagnosis is a label and certainly in my case I had (and am still having) a hard time with suddenly being put in the “ill” category. But the label itself doesn’t mean much in terms of how I actually take care of myself.
I do want to make a brief comment that there are some situations where you do need some kind of proof. Especially for children.
In order for our school to provide my daughter with a gluten free hot lunch, we had to have a form signed by her doctor. (I assume they do this to dissuade the “fad dieters” from burdening the cafeteria staff unneccessarily.)
My daughter’s scope/X-ray/blood were all negative/inconclusive, but our family physician recognizes her improvement in weight and signed the form even without a diagnosis.
If he was not supportive or understanding about the disease, we wouldn’t be able to have access to the accommodations we do at school.
Maybe some districts would provide the gluten free meals to anyone that asked, I am not sure. But in our case, a doctor’s “say-so” was valuable.
I know people tend to think that you need a formal diagnosis to get special concessions in school, etc but my son is NCGS and we’ve had no problem at all. The school wrote him a special plan to deal with this restrictions and works closely with me to offer him options.
What a fantastic post. Thank you. I went gluten free after a nuerological episode. My mother died from ALS (MND) and her mother had MS so I was keen to try and find out what I could do not to end up with an MS diagnosis. Removing gluten from my diet has TRANSFORMED my life. My neurologist didn’t do any Celiac blood work and I do not want to risk going back to gluten eating. I have requested genetic screening and to see a ground breaking research neurologist in the UK to see if they can properly identify a genetic condition as I have two young daughters. I feel so much better than I ever have and although the link between neurological conditions and Celiac is known it is not promoted (I refer back to my neurologist not even doing the blood tests) let alone gluten sensitivity. I believe there are millions of people whose lives could also be transformed so have started my own blog to promote this. http://www.tabithasglurenfeedishes.com Happy 2014 and thank you for all your hard work and passion.
Hi Tabitha! I tried the link you posted but it did not work. However, I could link to your site when clicking on your name:)
Having suffered several neuro symptoms myself for 3 years before DX and having 4 neurologists look at me and say “I am not sure why”, I started reading anything I could find about the relationship between gluten and neuro symptoms.
Dr. Hadjivassiliou’s articles in particular rang true.
I found a treasure trove of info on this site below…maybe you have already found it as well?
A wise neuro will say “Go GF” even if the antibodies are not present
on celiac testing or if the DQ2 or DQ8 genes are not present…because often new evidence shows the connection to gluten ataxia.
“The gene HLA-DQ1 has been found in a significant number of people who have gluten ataxia but not celiac.
HLA-DQ1 may play some role in the development of gluten ataxia. Dr. Marios Hadjivassiliou, a consultant neurologist practicing in Sheffield, U.K., who first identified gluten ataxia as a possible condition, has found in several studies that HLA-DQ1 appears in up to one-fourth of those he’s diagnosed with gluten ataxia.”
Good luck with your blog–your lasagne looks YUMMY! Cheers.
Oops typo. its http://www.tabithasglutenfreedishes.com
Thank you for your reply.
I have been in touch with Dr. Hadjivassiliou directly and referred to see him for some tests but as I live in a different part of the UK it has to be approved by a special panel in my local NHS area first. I have also been referred to my local genetics team. I’m awaiting a response from them. I’m not sure how far I will get initially but I am very determined and will blog about it when I have news. Thank you again for sharing the info above.
I do hope you get to see him. Fingers crossed for you!
Will you please let us know what happens?
I had the genetic test that showed two sets of the celiac gene, then just started writing “celiac disease” on all my medical charts 4 years ago. I have yet to have a doctor ask me who diagnosed me and if it was by biopsy. My general care doc is on board, and told me to just get it in my medical records and it would never be questioned. So far, she’s been correct!
Does mean I can never participate in any of the clinical studies that want proof by gold standards, but who cares. I’m getting healthy.
Good luck to all of you.
If anyone asks why I eat funny, I tell them I have celiac.
I was tested once, after I’d already been GF for a while, and it came back negative. The reason I went GF in the first place was after researching a genetic disease for a biology class. I picked celiac (I don’t remember where I heard of it). Mom saw me with a book on it and asked me why I was reading it. I said it was for class, but I think I might have it. The next words out of her mouth? “Oh, your aunt does.” Well, seeing as how that greatly increased the odds of me having it…I went gluten-free. And suddenly, I quit getting my monthly sinus infections and semi-annual bouts of bronchitis. I am currently in the middle of my 3rd upper respiratory infection in 6 years, when I used to get them all the time. I tried going back to eating gluten once, and it didn’t last very long. My joints started aching and I had really bad heartburn. I’m done with gluten. Now, we’re still tweaking my diet, 6 years later. I also have issues with corn and a few other things, but nowhere near as bad as gluten. I’ll probably never get an official diagnosis, but I’m going to tell people I’m celiac anyways. The treatment is the same, right? Don’t eat gluten. Restaurants seem to take it more seriously when the word “disease” is involved in why you can’t eat something.
Interesting study about prevalence of CD in people diagnosed with IBS and fibromyalgia (may help reassure the girl mentioned in your post):
Remarkable prevalence of coeliac disease in patients with irritable bowel syndrome plus fibromyalgia in comparison with those with isolated irritable bowel syndrome: a case-finding study
I believe the full text is open access if interested.
Hello just re-joining this conversation. I now have a GP helping me to find out if there are any tests I can have to find out if I have a gluten intolerance without re-introducing gluten in to my diet. My neurologist didn’t do any celiac blood work so I’ve missed the boat on that . Dr Hadjivassiliou has advised there are no tests I can have without re-introducing gluten. Is this correct? I have also been referred to a genetics team but it looks like there are no tests available now? Any advise you can give me I would really appreciate as I’m trying to push awareness and show whats accessible on the NHS. My mother had ALS her mother had MS. I now feel amazing since ditching gluten and going mostly grain free. I don’t believe in coincidence. Thanks in advance.
Dr. H is a brilliant researcher from what I have read and he is telling you the truth about celiac testing.
Since the diagnosis of celiac comes from (1) the presence of gluten antibodies in the blood after ingesting gluten and/or (2) the evidence of
villous atrophy in the small intestinal walls via biopsy from ingesting gluten, I am afraid that at this time, there is no test that can validate celiac disease in an active form without ingesting gluten for several weeks.
This is the dilemma many people face when they go off gluten before being tested. Many cannot withstand a lengthy gluten challenge.
Genetic testing for the associated celiac genes will not diagnose you but it may help rule it out.
Researchers are working on other diagnostic methods that will involve a shorter gluten challenge, but as far as I know, they are not available yet.
Please do not fall for the test kits on the market that tell you they can diagnose “gluten sensitivity” or gluten intolerance (or any other intolerance for that matter) as those are not validated either.
In this case, your body is your best barometer. Off gluten, you feel amazing–and that speaks volumes.
Best wishes to you.
Thank you for your reply and yes you are right the body is the best barrometer. I specifically am trying to find out if I have a gluten sensitivity and genetic pre disposition to neurological disease from ingesting gluten. I have two young daughters and am keen to find out as much as I can so that I can stop any further neurological illness in my family if at all possible. Is there any credible tests I can ask for to find out a. if I have NCGS or genetically am pre disposed to neurological disease due to gluten? Thank you again.
No, hon. There are no valid tests for NCGS.
Dr. H is the authority on gluten-induced neurological symptoms. He is your best bet.
That is what I suspected. Hopefully things will change in the not too distant future. It is frustrating as Dr H was happy to see me but because my appt was with Dr X and not Dr Y he didn’t automatically refer me and now my local health authority exceptions panel has declined the referral . I am in email contact with Dr H and it does appear there is nothing that would validate or answer my questions at the moment anyway.
It is horribly frustrating for you, I am sure. I hear this story so many times and it is heartbreaking because people deserve to know what they are dealing with. Soon, the science will catch up and the diagnostic process will be easier.
I’m pretty much in this same boat myself. I finally went to a specialist in Atlanta, GA. Her name is Dr. Cynthia Rudert, and she’s supposed to be a pretty big celiac expert in the southeast US. I had spent a month writing up a list of questions and thoughts on why I still think I have celiac disease despite the negative tests to take to my regular GI doctor late last year, but we hardly got to touch on those. It basically felt like I was in and then out. The appointment was so rushed! Most of my appointments there felt like that, and it was so frustrating. It was refreshing getting to see Dr. Rudert, as we had an entire hour to talk. She went through my notes and got to answer many of my questions. We even discussed the in vitro gliadin challenge. She looked at the study I brought and said it would have to be done on fresh tissue, and it would have to be stored with gliadin within minutes of being taken. It just wouldn’t be possible to do right now. She also wasn’t sure who was currently using it for diagnosis and wasn’t aware that Mayo Clinic was doing it. She did say, however, that she feels I’m seronegative celiac due to my severely low IgA. That will have to suffice for now, until a diagnostic method not dependent on gluten damage being present is developed and becomes mainstream. Good luck to you on your journey! Glad you’ve gotten in with a really good doctor.
I can relate to this article so much. I’m 19 years old, and I feel like I’m the “crazy gluten-free girl” in my family.
I do not wish to test for Celiac because the thought of going back on gluten is enough to make me want to die.
I hate the disapproval young females receive whenever they try to make positive changes. Girls who are health-oriented are frowned upon when making “unique” dietary changes because of society’s fad-diet culture. But this feeling also applies to Celiacs in general.
I value knowledge and information. I love learning about how the human body digests foods. Unfortunately, people don’t understand how highly interested I am in this subject and dismiss my opinion.
It’s hard for me to convince people that what I read about online and in books is true because I can’t access any “credible” sources of information due to lack of availability. (And lack of government-supported research on gluten, GMO, and health.)
But I don’t need their approval if I feel a noticeable difference in my health.
Thank you for the wonderful and very inspiring Celiac posts. I will definitely share this blog with others.
Late to the game, but I totally sympathize! I first developed symptoms about five years ago, and spent three years going to so many doctors and being tested for so many things, including celiac, none of which were positive. A few months ago I first heard about NCGS, so I decided to give gluten-free a shot. I have been feeling better than I knew was possible! After starting on an antibiotic, I started to not feel as great, so I tried asking the pharmacist if it had gluten, and he totally disregarded me because I don’t have a celiac diagnosis. (Asked the manufacturer, and the antibiotic does not have gluten but the symptoms I’ve been having are a common side effect of it.) Ironically, I was also glutened this weekend, which for me causes bloating and extreme constipation. Since I couldn’t sleep anyway, last night I even walked to CVS at 4:30am to buy another laxative (although much to my disappointment not one of the 24/7 ones). I have been doing so much research lately and I discovered that when I was tested for celiac, they did not cover all of the bases! I only had one of the blood tests done, and they did not take biopsies during my endoscopy. Now I think I should be tested for celiac again, but these next however many weeks are going to be miserable!
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I have recently found out I have the DQ2 gene ++ I’ve blogged about it here. http://wp.me/p3V8TQ-z4. I’m also going to see Dr H next week. I’ll keep you posted!
My scope was negative about 4-5 years ago. So what did I do? I continued to eat gluten, thinking that wasn’t the problem. Fast-forward 2 years later, and I thought I was dying I had gotten so sick. Just getting out of bed was a triumph. I had gastritis and ulcers, fatigue, stomach and bowel misery and a looong list of other ailments, that in a large part have cleared up since going GF. It took me going to a Naturopath to go off the gluten. At first I thought she was crazy, b/c I had the test and it was negative, but I had nothing to lose. Even my mom (who upon seeing me for the first time in 2 years) thought I was dying or had cancer. (Cancer runs in my family). But I don’t have cancer. I have Non-diagnosed Celiac disease. I took the advice of the natural doc and went gluten free. I couldn’t believe it. After about 6 months of going GF of course I had to test the theory (and was in a bit of denial missing my old food), the reaction was horrible and my hair started falling out, among other things. I have to say, during the time I was looking for the answer I started shopping for life insurance. (I have 3 beautiful children to worry about) and In shopping around, found life insurance is very hard to get with a Celiac diagnosis, so for that I am actually GLAD that I don’t have the official dx. I do have the ridiculous IBS diagnosis, however, which actually knocked me down in status, so I pay more for the insurance I do have. I was told I would have a hard time getting life insurance with a Celiac Dx. So in the end when I’m feeling blue about having to explain that I have Celiac Disease without a diagnosis, I remember that in some cases it can be a blessing. (always look for the positive.) And quit caring what anyone says, just take care of you!
I just want to say THANK YOU for everything you have written and a big thanks for all of the comments you’ve allowed to be posted to your blog. I was recently diagnosed with a non celiac gluten sensitivity after 8 months of intense stomach pain. I was lucky enough to stumble across your blog, and well, it’s been a huge help. HUGE. I actually just started my own blog to help me keep my sanity through all of this (it’s really a place for me to talk gluten anytime I want because my friends, family, and certainly my husband are sick and tired of hearing it I’m sure) 😉 Your “How to go gluten free” posts, this article of self-diagnosed-celiac and your gluten-free-diet-not-helping pretty much saved me from completely losing my mind the first few weeks after discovering what was really going on with me.
I’m sure it means a lot to you when you’re able to really help someone out – and well, you pretty much saved my sanity, so thank you. Seriously, thank you.
You are quite welcome Leigh.
I’ve been considering doing a gluten challenge because I’m not 100% convinced gluten is “really” my issue. As prelude: I know and would never presume to challenge that for tons of people, diagnosed or not, cutting out gluten makes them feel better both physically and psychologically, sometimes to the point of having a life when previously you were just coping. I feel this describes me pretty well (without going into details, most of my issues were psychological, including the dreaded brain fog and Instant Asshole, Just Add Gluten along with the usual severe anxiety and depression). At the same time, I’ve also had a serious struggle with disordered eating of the kind known as “orthorexia”–yes, this is a real thing and at one point found me eating very little besides lentils and water. This makes it really, truly hard to tell whether I’m struggling with gluten because, hello, I actually struggle with gluten…or whether obsessing about staying gluten-free is making me feel better simply because it’s something I can control. I wish I’d gotten tested before going GF two and a half years ago, but I didn’t know I had to, and then I felt SOOOO much better that the idea of doing a gluten challenge seemed ludicrous. Now, though, I’m not so sure. I don’t necessarily miss wheat foods any more, but I’m reassessing my other food issues and don’t want to restrict any more than I have to for psychological reasons. Anyone else out there who can relate?
Update: Nah. I figure either this is a really damn effective placebo (that continues to work long after my usual two-week “placebo high”) or I have celiac/NCGS/something going on that is NOT just in my head. I’m at peace with it.