Why you should get tested for celiac disease BEFORE going gluten-free | Robyn's Gluten-free Living

[@jbowerdel]

my youngest daughter went down this road-feeling bad, GI issues, etc-no help from doctors, started eating gluten free and was amazed at how much better felt. went for doctor's visit and was told since had been eating GF couldn't be tested for celiac. Decided to eat gluten for a week to get tested, was miserable!! had endoscopy-negative for CD but doc said could be bc she hadn't had enough gluten recently. Finally went for allergy testing for continued sinus, respiratory issues and found out very allergic to wheat!! so probably not celiac, but highly wheat allergic and very sensitive to gluten. no help offered, just "don't eat wheat"!! She has researched and educated herself slowly over the years -even to realizing how much gluten is in certain medications (tablets and pills are kept in shape with wheat starch!), in makeup-and how to avoid cross contaim! Its a long hard journey! Rest of family has been educated as well so as to cook carefully for her, not cross contaiminating dishes at family gathering--channels like yours are so helpful in sharing tips, info, cooking-just know someone else understands the challenges. thanks for the work you do and the shared community!

[@James-lb3jo]

I had really bad diarrhea for 3 weeks . I had to resort from one dose of Pepto Bismol to 4 doses for several days . I stopped the Pepto . I had a colonoscopy in 2021 and no cancer was found . It is very very rare that cancer would occur . At times I have some cramping in my abdominals . The doctor prescribed an extensive stool test . Three prescription size container will go in the freezer , 2 in the frig and one room temp. I ordered a facemask that should hopefully block the oder . I will then get a blood test for celiac . He has not mentioned an endoscopy . I have to eat gluten foods until after the blood test . All the best to my fellow health travelers . Thank you Robyn for the information . People like you gives us hope .

[@Carolinalove]

They gave my husband a blood test for Celiac. It came back negative. They also did a gastric emptying study. Also negative. BUT he feels 100x better when he doesn't eat Gluten. We had to figure this out basically on our own. P.S. congrats on almost getting to 1000 subs... I'm only at 24 subscribers 😂

[@robynsglutenfreeliving]

Hey Carolina! Thanks so much for sharing that. It seems like there is still a lot to be learned when it comes to celiac disease and non-celiac gluten sensitivity! I'm so glad he's feeling better. 😊 And thank you!! It's taken some time, but it was so exciting to see it finally hit 1000! 🥳

[@Elevatedpoetry]

Was it the HNLQ dna test?

[@Carolinalove]

@@Elevatedpoetry I actually don't remember

[@Ebbbb131]

I went gluten free as a last resort for my intolerances. When I felt like a new person in a matter of days, I asked for a test, I had been gluten free for a week by then. Still waiting for results but it’s hasn’t been long so I hope that if I go back I won’t be in too much pain.

[@mitzistraup2514]

I was diagnosed with Celiac disease in February 2022 after an intestinal ndoscopy, I had been nauseous every day for 2 months, some days it was so bad! Now on a gluten free diet and my symptoms are much better. I'd say about 80%. So many foods are cross contaminated with gluten, it's been difficult. So thanks so much for this information, it's so helpful!

[@OmerMan992]

Thank you so much for this info. I always ruled it out because I also heard about only the extreme cases, and also didn’t want to stop eating gluten… Also, the blood tests came out negative so my doctors told me that it’s not Celiac, but I kept on suspecting gluten (either Celiac or Non Celiac Gluten Sensitivity) because of my sever brain fog after eating that from my online research keeps pointing to these conditions (on top of severe bloating and fatigue). So now I know to demand for further examination since that blood test isn’t always accurate. I have tried 4 weeks without gluten and I’m not sure how much did it help, but when I started eating gluten again, I think I did experience these symptoms more frequently, so thanks to you and your video I’m gonna check it out, and hopefully it’ll change my life! Thank you so much!! ❤️

[@iLoveOneDirection072]

I agree with this. 1) no doctors bothered to test me for celiac despite being consistently anemic and not being able to explain why taking iron supplements did not help me at all, so get tested as soon as you can! 2) My reaction to gluten is just mild discomfort sometimes (rarely), meaning i never ever thought id have CD before I got diagnosed.

[@robynsglutenfreeliving]

Hey! Thanks for sharing. 😄🙏 Not sure if you also saw my diagnosis story video or if it's just a coincidence, but this is exactly what happened to me! I had low iron for over 10 years before a doctor (a walk-in doctor!) recommended a celiac test, and my reaction to gluten was inconsistent pre-diagnosis (I would regularly eat veggie sausages made of pure gluten and be fine). It's so important for people to know that celiac disease can present in many different ways. 🙌

[@iLoveOneDirection072]

@@robynsglutenfreeliving I have watched all your videos! ❤️ and exactly- its so important to know that celiac disease is not only extreme bloating and pain, there are many other forms it could take! I am waiting for my whole family to get tested now although no one has the “major” symptoms

[@robynsglutenfreeliving]

@@iLoveOneDirection072 Oh my gosh! Thanks for watching! 🥳 Glad your family is getting tested. 😊 As I said, we found out my dad had silent celiac-and likely had it for decades. Just another reminder that everyone's symptoms can vary!

[@iLoveOneDirection072]

@@robynsglutenfreeliving of course! Your videos are so educational and you have a lovely personality! As a 21 year old living alone who doesnt know anyone else with celiac disease it has been quite a ride since my diagnosis 1.5 months ago. Your videos really helped!:) thank you❤️

[@rickcantu6241]

YOUR U-TUBE CHANNEL IS VERY INFORMATIVE.

[@deanaanderson6525]

This is so awesome. My wife was diagnosed with celiac disease 1 year ago and it has been overwhelming. We just found you and love the content. It will be helpful for our family members as well. Thank you.

[@kathyaroche]

Thanks for making this video. I went Gluten Free without knowing anything about celiac. I just felt better. So when I went to get tested all my tests except for the genetic testing was negative. I was GF for 5 years. I do have gastric emptying problems as well called Gastroparesis. Anyway my biopsy showed damage to my small intestine. Fortunately my gastroenterologist diagnosed me with Celiac so now I know that I have to avoid gluten.

[@brich6875]

I have went round and round for several years with my gut and gastroenterologist. He finally said I had acid reflux and Barrett’s disease. Took omeprazole for awhile and still no improvement. Went back and he gave me pills for ibs and said that would do it. I finally cut out gluten on my own and symptoms greatly improved. Went back and told my doc and he said they tested that during an endoscope on me and negative. But if it’s helping me to cut out gluten then stick with it. He was really no help. But I have lost about 12 pounds since cutting out gluten and stomach is no longer hard and bloated. Feel so much better and my acid reflux doesn’t bother me so I cut out the omeprazole I took daily. It’s been almost a month and feel way better. Great videos by the way

[@eevee-chan9607]

We did this for my daughter, it came back negative. However, she does have a gluten sensitivity. So, I follow this channel as a guide to help me feed and advocate for my child.

[@hesherette]

cross contam with the tm lol i love it! it's GOING to happen! i found your videos last night as I recently went gf; your content/ attitude/ humor is amazing!! i actually haven't personally been tested, but only bc my grandma is celiac. my grandma went GF almost 20 years ago, back in the days we would actually have to read EVERY single ingredient bc no one even knew what gluten was lol. she's my hero. i've been anemic most of my life & felt ill for years without ever realizing how bad i felt! once the pandemic hit (aka STRESS), things only got worse from there. i began to really cut back on the gluten in my diet & for about 3 months i would get SO SICK, felt like i swallowed razor blades/ rocks & then projectile vomit after certain meals, aka all the ones w gluten in them! once i made the connection between the two, it was easier to go gf. i cut gluten out without getting tested but only bc i know it runs in my family & i needed IMMEDIATE relief. also, being in the US, i wasn't sure if my insurance would pay for the testing & after losing my job i couldn't afford it financially or time wise. i still completely agree w all of the points in your video, as many people have OTHER food sensitivities that they may blame on gluten.

[@robynsglutenfreeliving]

Hey Erikah! So happy to hear you're enjoying my videos (and trying to make cross contam™ happen)! Thanks for sharing. I hadn't even considered the cost of getting tested, but that definitely makes sense. I think the most important thing is to treat it seriously (like you're doing). Watching your symptoms go away definitely makes it a lot easier to stick to a gluten-free diet. I hope you're feeling better now! 😊

[@mythilirajendra307]

Thanks for sharing :) I agree, especially with the last part

[@Lightcode]

This is a great video and darn it I wish I had seen this 15 years ago. I had a very similar slide into gluten free as you did.

[@EarmuffHugger]

I've been gluten free, nearly sugar free & 99% carnivore for over 3 weeks. All health issues have gotten ALOT better! Joint pains & stiffness, severe constipation & occasional bowel pains with diarrhea whenever I ate gluten rich foods. I am not going to get tested. I've done testing on myself for 70 years with severe health issues!! Gluten free, extremely low sugar & 99% Carnivore has been life changing for me!! Well wishes to all who are suffering from the effects of BAD foods.❤

[@crystalrockbc]

This is really really really good advice, I was told by a doctor I probably had celiac disease but then they didn't actually test me so I just stopped eating gluten for 7 years. I have now decided it would be worth it to take the test and have been suffering eating gluten for the last week to get tested.

[@topheregrant]

Love this, somehow I missed this in my binge watch of your channel. The # of ppl I know who eat “gf” but don’t get tested drives me mental.

[@PinkieJoJo]

I agree. So many go gluten free and never know if they have Celiac. I have been tested and I tested negative. However I did cut the gluten based on anecdotal evidence of how gluten affects the body regardless of celiac when it comes to autoimmune issues. I have Lichen Planus which is a painful skin condition. I also have some associated joint inflammation and pain. Cutting gluten did indeed help me. Actually cutting all grains works out the best however for now I’ve settled for a 90% improvement as I’m just not ready to be completely grain free. I also have some GI conditions that improved going gluten free. Now a word of caution-there are some forms of Celiac/gluten allergy that don’t ever test positive the standard way. I know someone that ended up in the hospital for 3 months with multi organ failure and they finally found out he had this rare form of Celiac.

[@robynsglutenfreeliving]

Thanks for sharing! 😊 You're not the first I've heard that is on a gluten-free diet to manage other autoimmune symptoms, and I'm happy it's working for you. Also, I'm glad that you got tested for celiac as well though-I worry that doctors are prescribing gluten-free diets without first checking for celiac. And I agree with that last point! It's been shown that non-celiac gluten/wheat sensitivity can also cause intestinal damage and an immune response... so getting an endoscopy done is a good idea to check for damage.

[@ananths1122]

most of the small short performances gave a smile, thanks for the infotainment.

[@robynsglutenfreeliving]

So happy you enjoyed! 😄🙏

[@diannalocke997]

I love this channel!! Love the bread course! I am a baker but baking gluten free bread is so different! My husband does not have Celiac but does have Hashimoto's Disease. It took over 20 years to figure out what was wrong and only when we insisted on going to a healthy gut doctor did we find out the problem. Going gluten free is hard but if he eats forbidden foods he gets sick! Big shout out for this channel! :)

[@robynsglutenfreeliving]

Thank you so much, Dianna! So happy you’re enjoying the course. 🥳

[@wendyhannan2454]

Yes I know others with thyroid conditions ,and their health has improved going GF. You don’t have to have a written diagnosis, you know yourself. No one would choose to go GF if they didn’t have too. It’s difficult and a pain when trying to eat out. I no longer eat out, as I’ve been caught too many times. I eat before going out and I’m happy to do that, my friends and family understand.

[@julieknight4896]

I love your presentations, you really are fun and knowledgeable 😀. I am on my second, and permanent journey with this diagnosis. First time around I was on a bp medication that in rare cases (like me) causes sprue like conditions in the body and so I was diagnosed with Celiac Disease and went gluten free for 5 months with no improvement in my symptoms (feeling sick and faint after every meal and actually loosing consciousness at times)...once I went off that medication and back on a regular diet WITH gluten, I felt fine. Then a follow up blood test and EGD both came out positive, well, here I am again...forever. My case is not the norm but I am glad to have a correct diagnosis at this point , and to be off of a medication that exacerbated my symptoms so badly.

[@robynsglutenfreeliving]

Hi Julie! Thanks so much for sharing, and I'm happy you're enjoying my videos. 😊 I'm sorry to hear you've had such a hard journey to get a diagnosis, but glad you're now on the mend!

[@broadway7612]

This is so informative!! Thank you for making this video, all of the questions I was stewing over are answered ☺️

[@robynsglutenfreeliving]

You're so welcome! 😄 I'm happy you found it helpful!

[@memoirsofmoon]

My testing was different . So first stool samples, all negative, the celiac blood work , negative. But then I remembered that when I got a 23andme ancestry done it had that I have a celiac gene. So I then got thorough genetic testing and I have the DQ2 gene. I haven’t figured out who I got the gene from as far as family tho. Originally I would “feel funny” after eating and then it would pass . Mine was rarely just stomach cramping , I would feel confused (brain fog) then it would go away . Then after I caught COVID last time . I felt nauseous 3 additional weeks , and from then on whenever I would eat I would feel faint, stomach pain and cramping, and they would last up to a week. Way worse. 😢

[@dancasey9660]

The level on the blood test said below 4 antibodies was normal or acceptable. Mine was listed greater than 100. Figured they just stopped counting after 100. Endoscope confirmed the blood test. And yes the doctors office could have done a better job of explaining it, but I eventually figured it out. Things that went away: diarrhea, canker sores, brain fog. Was at a point where I was losing words, facts, etc. But that cleared up on a gluten free diet. I understand a small number of people end up with a gluten induced dementia that doesn't clear up after going gluten free, so I feel I might have dodge a bullet!

[@JyLovemusic]

But just like you mentioned some people end up in the hospital for eating just 1 noodle, unfortunately I had to stop gluten before even getting tested because I couldn’t even walk or get dressed to make it to a hospital. Once I stopped eating it after I did some research I started to feel better and that’s when I was able to do stuff. My neuropathy was so bad that my entire body was tingling and on fire. I just got blood work done but now I’m concerned it’s going to come out negative, though I will also get a endoscopy and I wonder if that can also come out negative if I’m not eating gluten. I loved eating bread everyday and multiple things that contained gluten so I have been eating less now.

[@robynsglutenfreeliving]

Thanks for sharing! 🙏 I totally get it. Whether or not the test will come out negative will depend on how long you've been off gluten-my endoscopy was set 2 weeks after my blood test so they let me start eating gluten-free-but if it's been months then it may show up negative. In my opinion, the most important thing for people who are unable to get tested for celiac (for whatever reason) is to be as careful around gluten as people with celiac are. I know so many people who can't handle gluten (but never got a celiac test) that don't worry about cross contamination or just eat it occasionally, but if they actually have undiagnosed celiac they could be putting themselves at serious risk! 😞 It's definitely something you'd want to discuss with a doctor! As I discuss in the video, there are a lot of important reasons to know if it is actually celiac disease, but if you get very severe reaction just from eating a little bit then you need to decide-with a medical professional-what's right for your body. 😊

[@wendyhannan2454]

My Dr suggested I eat gluten for six weeks before my colonoscopy. No way I wouldn’t be able to leave the house. I’ve been accidentally glutened and it’s a nasty experience. The only way for me to feel well, is to eliminate gluten from my diet. And that’s for life. 😊

[@lannguyen-pu1db]

I went gluten free years ago when my doctor refuse to do anything for my frequent bloating, migraines, lethargy, and feelings of depression. No way will I eat gluten again for a test. Maybe not celiac, but problems with gluten for sure.

[@DavidesJustGlutenFree]

WELL SAID 👏🏻👏🏻👏🏻 I’ve been celiac disease since 1998 and I had lots of these conversations 😂😂

[@robynsglutenfreeliving]

Thank you-I'm glad someone else can relate. I swear I have those conversations any time I'm in a new social situation. 😂

[@QManagerin]

how many days before testing should I eat gluten again? I suspect to have celiac or an intolerance and stopped eating gluten for a week (that stuff is really everywhere, so I'm hope I'm wrong 😭😭😭). My digestion seems to be a lot better, but I don't know if it's related or just in my head, so I want a test to be sure. I was anemic my whole life but always blamed me being vegetarian despite taking supplements and being mindful with my diet. I have a lot of other symptoms that could be related to celiac...but never seriously considered it.

[@moonbat783]

I wish I knew this when I stared back in 2015. I was I high school when my mom put me on a strict gluten-free diet. My uncle was test before anyone knew what it was. I felt better and my mood swings stopped and a lot of pcos symptoms got better. But I started the diet change right between the problem of there were limited options and the fad diet stared. So I traded one set of health problems for a calorie deficit problem. Not a fun time. It's been 5 years and I still feel like I'm struggling to understand how to stay healthy.

[@robynsglutenfreeliving]

Hey Rebecca! Thanks for sharing. 😊 I'm sorry you've been having such a hard time getting the right health information. I hope you're able to get the resources you need!

[@Truecrimeresearcher224]

My doctor said keep a food diary and see how I feel after eating something with gluten They also said try to avoid gluten as much as possible and see how I feel They said wait until my appointment in Sept and we can go from there Right now I'm getting stomach aches and feeling extremely tires. Ive also been getting headaches almost daily

[@robynsglutenfreeliving]

I'm sorry to hear you haven't been feeling well. 💕 I hope you're able to figure out the cause. I will just say that when I tried avoiding gluten pre-celiac diagnosis, I was never able to pinpoint that gluten was the problem. It took my body about a year or more to heal completely, so even when I stopped eating gluten at the beginning, I was still having symptoms. Make sure you don't eliminate gluten completely before the test, as it could give you a false negative (like I mention in the video). Hope you feel better soon. 🙏

[@hillairreus]

Thanks! I went GF 2 weeks ago as an experiment and feel so much better. But now my dr. wants me to get tested for celiac. I don't even want to eat gluten anymore 😕

[@robynsglutenfreeliving]

I’m glad it’s making you feel better, but before you go too long with the gluten-free diet you should definitely get that celiac test! I know it’s gonna be hard-but I think it will definitely be worth it in the long run. 😊 Plus you can make sure you eat all of your favorite things one more time in case you DO get a positive celiac test. 🥲

[@fallingfeather21]

I had some serious digestive issues. Never suspected celiac or gluten intolerance. However I gave up, among other things, gluten for four months. Felt fully recovered and began to relax my diet. Started feeling crappy again. Oh, BTW, for a FULL year prior to my serious digestive issues, I had ungodly serious skin issues, that I'd never had before, nor had I ever seen anything like it. I am literally scarred from it. SO.... no gluten for me. Celiac or not.

[@robynsglutenfreeliving]

Interesting! So you never ended up getting tested, I take it? The skin issues could have been Dermatitis Herpetiformis (which is a manifestation of celiac disease). If you're still eating gluten from time to time, it might be worth it to get tested. If you can't imagine eating gluten for long enough to get tested, you might want to treat it like its celiac just to be safe. I hope you're feeling better now. 🙏

[@beverleysimmons7885]

Super Interesting and informative.

[@robynsglutenfreeliving]

Glad you enjoyed it! 😊

[@ZenithAstrology]

told u Robyn the sensitivity one is just as bad I can tell I have CD like you though. I just have to stay away from Dairyman corn and rice and convectional cheese 🧀 but I can have A2 cheese and milk and butter. .lupine flour and coconut 🥥 and almonds flour.

[@alexandrina...966]

Thanks. I know for 1week that i have it ...but2years ago the endoskopy didn't show it ...it was just some litle piece of inflamation due to helicobacter,but after the treatment for helicobacter the symptoms worsened and i thought i have lactose intolerance but no i cut lactose out and still i had problems...one day i ate st work bread and i noticed my stomach going up..and after 1hour again going down...so i have to do some tests but i think it is

[@robynsglutenfreeliving]

Thanks for sharing! 😊 I'm sorry to hear about your symptoms and that you've had a hard time getting a diagnosis. I hope you're able to get tested again! If you get tested and it doesn't show celiac, you may want to ask about Non-celiac gluten/wheat sensitivity, which isn't celiac but it can still cause intestinal damage. Here's a link for that, if you're interested: celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

[@christian5707]

Currently doing a food elimination diet on the advice of my doctor however she wouldn’t order a cd blood test… so no gluten, dairy, soy or nightshades…. 🙄 I can say in the last 2 days I’ve had more energy than I have in a long time and dropped 3 pounds. I’m eating but I rarely actually feel hungry. I’m wondering if that’s normal when going gluten free.

[@JennyFurrr421]

I’m also starting my elimination diet per Drs order even tho my celiac test came back negative. I’m on day 3 and I feel an improvement already! I was also wondering if not feeling as hungry when going GF was normal?

[@fullmoon325]

Thank you 🙏🏻

[@robynsglutenfreeliving]

Glad you enjoyed. 🙏🏻💐

[@emmamealpreps3331]

I got tested in 2014 but had already been eating gluten free for about a month. Test was negative. I’d been experiencing digestive issues, really bad acne, and joint pain. Stop eating gluten helped all of this. I don’t want to start eating gluten again after 7 years just to get a diagnosis. What would you suggest?

[@robynsglutenfreeliving]

Hi Emma! It’s always best in these situations to get a recommendation from a doctor. In my opinion, if you don’t want to go through the gluten test after so many years of being gluten-free, it’s best to act as though you have celiac as far as avoiding cross contact and being very careful to avoid gluten. If you have undiagnosed celiac and every once in a while you “cheat” or take a risk, then you would be putting your health at great risk. Again, though, it would be best to ask a doctor what the best course of action is. All the best to you-I hope you figure this out! 😊

[@kimberlycramer9083]

I just found your channel, and you are hilarious and awesome! I'm in the process of trying to get tested for celiac disease. My blood test came back as "celiac disease unlikely" (tTg-IgA was 5 and immunoglobulin A was 158). I couldn't get into the gastroenterologist until 2.5 months from now and am having a difficult time accepting the fact that I should continue eating gluten until I see the GI doc. Do you think eating 2 slices of Ezekiel toast every day and not worrying about CC would be enough gluten? I feel hopeless and lost.

[@robynsglutenfreeliving]

Hey Kimberly! Thanks so much for your comment. 😊 I’m sorry to hear this-I can’t believe how long they’re making you wait. I’ll be honest, this question is a bit out of my comfort zone. I didn’t have to do a gluten challenge or anything before diagnosis. I would recommend reaching out to @celiacdietitian on Instagram as I think she could answer this for you! Or you reach out via her website: tayler.silfverduk.us If you’re Canadian, let me know and I can direct you to a few others as well.

[@kimberlycramer9083]

Thank you! I’m in the U.S., which probably says enough about the healthcare situation. 🙄 I’ll see if I can reach out to her-thank you!

[@kiraarkhipova4935]

It sucks, I had to eat gluten for 6 months before mine however I was on laxatives the whole time! You can do it ❤️❤️❤️

[@MsBrendalina]

I got a Hashimotos diagnosis and am trying to reduce gluten to help with that. Should I test for celiac as well?

[@pm5095]

Definitely. Same here.

[@AnaNas-bm2uv]

🎉

[@teresahannasch3420]

My symptoms from gluten consumption are just flares of endometriosis, and there's research to support that gluten free diet reduces pain for endo patients. The debilitating pain flares would NOT be worth it to get tested.

[@teresahannasch3420]

Especially since I've been gluten free for nearly two years now.

[@jellowmusic6571]

i noticed your glass kettle helps reduce all that gluten plastic 😂

[@wrenfan]

It is not necessary to get tested for anything if a diet change improves your health situation. If you suspect Celiac is the source of your symptoms and you go gluten free you will "never" be diagnosed with it. So why is that a bad thing? You know you don't tolerate it (gluten) and have chosen to take control without wasting time, money or continued suffering.

[@topheregrant]

Sounds like you should watch the video… 🤦‍♂️

[@wrenfan]

@@topheregrant I did and that is why I responded.

[@colinsimmons]

gloodle™ 👏👏👏

[@robynsglutenfreeliving]

I couldn't help myself... haha! 😆

[@kimdkzanolli1974]

My tummy hurts, I happy eat gluten free

[@rickcantu6241]

CONSIDER COLONIC TREATMENTS.

[@marygarrett9724]

That’s a bad doctor, I hope you changed