Hi. I started the gluten free diet last year but I've not been diagnosed with celiac. i was tested when i was already gluten-free so i think i got a false negative. It was very hard for me in the beggining, specially because nobody believed me, i cooked everything by myself, and argued everyday with my mother. I only stayed stictly gluten-free for 6 months, then i couldnt stand it anymore and started eating gluten again and got extremely sick!! even sicker than i was before, i was going to the bathroom 20 times a day, so much pain.. so i went gluten free again, but this time my mom buys and cooks everything. the problem is that she doesnt care of cc, she buys stuff that "may contain gluten". Sometimes when she cooks all gluten filled meals, she still tells me: come on, you should eat a little bit, you are not a celiac. Now i'm thinking about doing the gluten challange, i dont want to, but i really want to go completely gluten free, and i want everybody to shut up!!!
The problem is that im afraid the results come back negative again. I'm planning to not tell anybody about the gluten challange, so if the biopsy comes back negative, i can still be as gluten free as possible while living here. What should i do? would it be enough to eat only stuff with traces of gluten? should i eat a little bit of gluten every day? like a cookie.. would it be enough? i dont wanna get as sick as i got some months ago!
I really dont know what to do by the way.. im not a native english speaker, sorry for the mistakes!
Sooooooo sorry that you are living in a situation where you don't get family support or complete control over your food.
I've read of two different levels of gluten and timing needed to assure test accuracy for the blood test.
• The equivalent of two pieces of bread a day for 4-6 weeks.
• The equivalent of one piece of bread a day for 12 weeks.
Both of those seem awfully long to me. I'd probably schedule a test for after four weeks, and if it were negative, decide if I could stick with it for any longer in order to get tested again. But your doctor is probably going to have some say in that. I'd make sure that he/she is on board with testing before you start a challenge. It would really suck to do a gluten challenge and then have your doctor refuse to run the tests.
Seeing that you're 18 and probably will have to deal with family for a few more years to come, a gluten challenge seems as if it might be worth it ... if the results are positive. And if they are negative, you can always go gluten free again and be right back in the same position that you are in now.
Unfortunately, family can get stuck in their ways. I know when I told my mother, she didn't believe me, and I was in my 40s. I don't know if she chooses to live in denial because she knows that it is genetic and she doesn't want to have to give up gluten herself (her whole side of the family exhibits an avalanche of symptoms), or if she simply chooses to not want to believe her children because she, as the parent, thinks she knows best. I know that she sees any sort of food allergy or intolerance as a weakness, and doesn't want to admit that one of her children could possibly be less than perfect. Ironically, my sister and I both react to gluten.
It definitely seems that with your situation, it would help your happiness to have an official diagnosis. I agree with you keeping it a secret, there is no reason to disclose things to your family that they can get on to you over. Definitely eat gluten for 12 weeks before doing a blood test. For an endoscopy, it doesn't have to be as long, but a lot of people do the full twelve weeks and then do a blood test and endoscopy just to make it easy. Here is the University of Chicago Celiac Center's recommendation: http://www.curecelia...luten-challenge
In the event you don't have Celiac disease, you may be able to get your doctors official opinion on you having a Non-Celiac Gluten Intolerance. Called NCGI for short. If there is an obvious link to your illness and gluten, the doctor will probably tell you to still avoid it, and you can bring your family member there to hear it themselves. But, for now, absolutely go ahead and pursue a diagnosis.
I am my husband's "Silly Yak Girl"
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.
Some new Guidelines just came out about diagnosing Celiac Disease.
Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology
These revised guidelines came out this month.
In part...To perform a gluten challenge, a recent study recommends a 14-day gluten intake at ≥3 g of gluten/day (two slices of wheat bread per day) to induce histological and serological changes in the majority of adults with celiac disease.176 The challenge can be prolonged to 8 weeks if serology remains negative at 2 weeks (in the Leffler et al176 study, serology was negative after 2 weeks in all cases, but positive after another 2 weeks)....Please read the entire publication.
If your body can handle the gluten challenge, you might as well be retested. As G - F Lover said, sometimes a shorter gluten challenge will show a positive test, so it can be helpful to test early, but if it is negative at two weeks into a gluten challenge, it may be a good idea to test again in two months.... if your body can handle it.
The biopsy just needs 2-4 weeks of a gluten challenge to get the most accurate results. Many find the endoscopic biopsy to be a helpful diagnostic tool (although it can miss as many as 1 in 5 celiacs).
To do a successful gluten challenge, ideally you would want to eat the equivalent of 1-2 slices of bread per day for the 8-12 weeks (for blood tests, shorter for the biopsy). That could also be one to two of a beer, waffle, muffin, serving of pasta, a couple of cookies, a bun, a sandwich... there are many variations you could do and just one or two of the things I listed, per day, would be enough for a gluten challenge.
Remember if the tests come back negative, it could still be celiac disease, or it could be the more common non-celiac gluten sensitivity (NCGS) which is 6-10 times as common as celiac disease and has exactly the same symptoms as celiac disease except for the intestinal villi damage. NCGS is a serious health problem and results in serious health complications if the gluten-free diet is not followed (like gluten ataxia, migraines, anemia, fatigue, joint or fibromylgia like pain, etc). You know gluten is a problem for you (and good for you for figuring it out so much sooner than most of us did) so when testing is done, you need to go gluten-free anyways.
If people give you a hard time about not having the "official" diagnosis, you could always mislead them with honesty. Say, "I have celiac disease. I had the tests done." That is technically not a lie. You could also say you have NCGS. Ideally you could simply demand that people simply respect your dietary needs and tell them to mind their own business. I know that doesn't work for a mom whom you live with - educating her on how to keep you safe might be the best bet there. Most moms will try to keep their children safe (from dangers they know about and understand).
I just finished doing a gluten challenge (only lasted 4 weeks) and I would never recommend it!! I had been on a gluten free diet for 6 months, doing better but still having some symptoms. Anyways, within 2 days of gluten challenge I was very ill... And as the weeks went on I got worse and worse. Now, having been off gluten again for 3 weeks I am still struggling daily, but am slowly feeling better with lots of help (mainly Chiro, supplements, and very strict diet). I tested negative for celiac but just got my tests back from enterolab today and my antibodies and genes show gluten sensitivity. I wouldnt wish the horror I went through for those 4 weeks and beyond on anyone not even my worst enemy!! If you know the gluten is a problem just forget about it for life and move on, trust me I know how it feels to have opinions from left, right, and centre and I have finally decided to just do what feels right for me... No one can truly understand your body more than yourself, so do what feels right for you!!!!
I started the gluten challenge before yesterday and i already have symptoms.. not that horrible diarrhea and pain (i hope i dont get those ), but im super bloated, tired and have some brain fog.. and i lost my appetite! I really wanna go back to the gluten-free diet, but i cant stand that lack of support anymore. i think i'll regret this later, i feel very pessimistic about getting a diagnosis.
I have an extreme lack of support. Some months ago, on my birthday, my family took me out to eat in a fast food place, because there are no normal restaurants where you can order your food and talk to chefs, etc near the place we were. i told them: I'd rather like to go to the cinema, guess what they said? they said : no, we wanna eat something now. we didnt go to the cinema after that either. I was gluttened. Nobody cared of what i wanted to do!! It was my birthday.. I'll NEVER forgive them. they did the same when i graduated from high school some days before of that!! they said: we must celebrate! then we went to eat to that same place..
That same day, in the afternoon, i went to see the other part of the family, they made a "party" for me, but nothing there was gluten free. I sat down there and watched everyone eat in front of me. not even a cookie, nothing was gluten-free.
When i finally got back home, i started crying. the worst birthday ever. people celebrated just because they wanted to, they used my birthday as an excuse to eat out and eat junk food without feeling guilty.
Donna, did you get the biopsy done? or only the blood test? I'd like to skip the blood test, I've heard its not pretty reliable!
should i really take big amounts of gluten for the results to be accurate? i've not been strictly gluten free since february.. i mean cross contamination and traces of gluten every day, but really every day
Here is an idea for you to help manage your family's desire for junk food. If you can't beat them, perhaps you can join them in some small way.
I know this varies from place to place, but many of the protein/snack bars you can find in a gas-station convenience store may be gluten free.
Brands: Quest, Luna, Think Thin, Kind. I'm not sure if all of the flavors in their lines are gluten free so you'll still have to check the labels.
Potato chips and corn chips that don't have any added flavors are often gluten free. Of course cross contamination will vary from one brand to another, but it may mean you can snack on at least one thing at a party.
At fast food places, smoothies have started to show up. Many of them will have gluten-free ingredients. It isn't the same as having a burger, but better than just sipping on water.
Really sorry that your family refuses to support you. That birthday sounds pretty awful.
Your family sounds about like mine. I struggled for years with issues (to include several things that had the doctors perplexed), and my family acted like I was faking because the doctors couldn't find a problem. Earlier this year, I walked into the ER with my blood sugar dangerously low, and was sent to a nutritionist to "learn how to keep my blood sugar steady by eating properly". The nutritionist didn't take long to suggest celiac, but my doctor didn't want to test for it. I ended up paying out of pocket at the lab directly, and tests came back positive. Now both my doctor and family don't believe me. I was asked earlier if I was coming over for "the usual cookout" for the 4th of July (as in macaroni salad, burgers, dogs, and grilled buns). :-/ Basically what I'm saying is stay strong, it's often hard for people to accept what they can't physically see. If we were paralyzed, people would accept it because they can see someone is paralyzed. Celiac/NCGI is invisible, so people tend to have a hard time accepting it...even when we know it's real. You said you recently graduated high school, what are your plans for college, etc? If you are going to college, maybe you can live on campus so you can have more control over what you eat.
I'm gonna do the gluten challenge anyways, not only for me now, my mom's been diagnosed with hypothyroidism and she's always had anemia and mild stomach problems.. now she's pregnant! and i dont talk about celiac to my family anymore, i really dont wanna hear stupid comments, but i want her to get tested! I have lots of relatives with symptoms and they dont listen to me when i tell them to get tested.
Good luck with the challenge. Hopefully you will be able to at least convince your mom to talk to her doctor about it. I know I could probably never do a challenge, I spent a weekish in h*** after a minor glutening.
NatureChick: thank you for your tips!! i live in argentina and the brands are different here. Sometimes the only things i can find in a regular store are candys or rice alfajores (do you have those there? they taste awful anyway xD )
Georgia_guy: yep, i graduated high school in december, things are a bit different here xD i started studying to become a dietician and am now on vacation (winter vacation) but the uni is quite near my house, so i didnt need to move, but i've been thinking about finding a job so that i can buy all my food and kind of live on my own but still with my mother..that sounds crazy! but thats what i think i'm gonna do if the results come back negative or if i dont resist the challenge.
I'm gonna make a little update:
I started the gluten challenge on june 30th. I started having symptoms that day, but the symptoms were bearable because I've not been strictly gluten free. I didn't feel that bad, so I ate a piece of normal pizza last Friday night (4th) and woke up in pain the next day, got back to having diarrhea, pain and all the symptoms I had before. I felt so bad all the weekend so i didn't eat gluten yesterday. I felt a little bit better today, so I ate some cookies and now the bleeding came back (i used to have bright red bleeding and horrible pain) , along with diarrhea, and all the other symptoms i had before (sorry if too much information,). I had a colonoscopy in november, because my doctor thought i had crohn's disease or ulcerative colitis but the results came back ok, I think I have hemorrhoids. The bleeding only appears when i get diarrhea and goes away when i go gluten free. I think that wouldn't happen if i had crohn's or ulcerative colitis. I'm afraid i get that diarrhea 15 times a day if i keep eating this way because that has happened before. I didn't remember what it felt like to have all these symptoms!
I feel really sad now, I'm a little depressed. I couldn't eat as much gluten as required (1 or 2 slices of bread a day), my symptoms were very bad, so I ate it every 4 days I think, so that the symptoms were not as bad, but recently started feeling worse even eating gluten every 4 or 5 days, I felt bad all the time,so I've got back to my gluten light diet since then (like 1 week ago). my stomach hurts bad, and I know it's not only gas, because I've been through that gas pain and its not the same!
I got the lab done today, so I'm waiting for the results.. i dont really expect the antibodies to come positive, i would like to have another biopsy but my doctor wont send it with negative lab result.
This gluten light diet is not working i'll try to be as gluten free as possible but it's still difficult..
I dont really know what I'm gonna do now, I've tried it all. The only thing I haven't asked for is the genetic test, but I think it's useless since it wont make any doctotr diagnose me with anything.
Maybe I'll try to start a strict gluten-free diet when I find a job, my mom's gonna think I'm crazy again and all that but I dont know if I care now.
Hang in there! Remember any ill person can start a strict gluten free diet with no permission from anyone. I'm working to get to the point where I don't care about what people think anymore. I still struggle with it sometimes, but I'm getting better at advocating for my need to bring my own food and avoid CC.
If you've exhausted all testing means and are still ill with no explanation, then just treat yourself like a celiac and do a 100% strict gluten free diet for 6 months. If it helps, then you have your answer. It's not always easy to do a strict gluten free diet, especially if you don't have a firm DX, but if you know gluten makes you sick, it sure beats the alternative!
Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge