Celiac Diagnosis Story | Part 2
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- Опубликовано: 22 май 2019
- The second in a three part series about my experience with celiac disease.
Today, I talk about the process of getting diagnosed. I also talk about my never-ending love affair with cheese. #RIPbrie
LINKS
- The first video in the series: • Celiac Diagnosis Story...
- The Gluten Free RN podcast, by Nadine Grzeskowiak: glutenfreern.com/category/podcast/
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Please get the tests, I’m going through a gluten challenge to get the blood work and endoscopy. It’s super hard but it will let me know what I’m dealing with! New research is suggesting 2-3 weeks of eating gluten compared to the 6-8 weeks previously suggested. If I test negative, that means I can go out to eat without worry with family and friends. In my foodie life, it’s worth it. I don’t want to commit to a lifetime of eating from home solely if I don’t have to. The testing will also alert me to celiac specific issues like an increased risk of non-Hodgkins lymphoma (cancer), nutrient and vitamin deficiencies, etc… It’s worth it for me! 2-3 weeks of intentional damage is worth a lifetime of knowledgeable and intentional healing… or a lifetime of eating bread, drinking beer and living in food freedom. Your situation might be different than others but I would always suggested not self diagnosing for celiac because it is very restrictive and also needs follow up for related problems from a medical professional. Healing to all!💗
Your hair color is gorgeous!
Thanks for sharing, i hope you get the definitive Dna test/result for piece of mind!
I have been experiencing symptoms for two years. Basically since I had the flu at the beginning of 2019. I saw my primary a few months after the flu for my physical in May. My total vitamin D was already low in the normal range at 35 but he didn’t say anything about that. My iron was borderline. I had also told him I still didn’t feel back to peak health and I was having trouble breathing efficiently on runs. My tonsils and lymph nodes swelled up later in the month and I was referred to an ENT (I recently did some research on celiac to learn that tonsils swelling and constricted airway is one of the onset symptoms). I had to wait until July for the RN to the ENT to see me and she diagnosed me with GERD since I had also started experiencing reflux in that time. Gave me foods to eliminate and sent me on my way. I also discovered heavy, rich foods were upsetting my stomach so I cut those. At these point I hadn’t completely cut gluten but I wasn’t eating enough of it to show up on an endoscopy that the I had done in Jan 2020, giving me a false negative as well as false security that I can eat gluten. I only saw that ENT until she referred me to gastro in Dec 2019. I was not happy with that gastro because I wasn’t being listened to so I had my primary refer me to a new one that I saw in Feb a week after I decided to cut gluten fully from my diet because I couldn’t handle the bloating ang cramps etc anymore. He listened and didn’t try to convince me to do a gluten challenge to be tested since he could tell I was feeling sick from it. I went back for a follow up two weeks ago because I just want to know the probability that all this is celiac because my eyes and joints and raynauds have really been affected, as well as my nerves. So he ordered the celiac genetic test and also printed out specific instructions to make sure the right one was conducted. It came back I have both genes which is a higher chance of developing it due to environmental factors. I am positive the flu triggered it. Still not sure if I want to go through a challenge. I am going to talk with my other doctors to see if they will at least honor that I could have it in the event I develop other things in future. I also need an iron supplement now since my ferritin is super low and a vitamin d supplement
Oh my god what an absolute roller coaster! I'm so sorry you had to go through all that, but good for you for advocating for yourself and pushing through. I know it's not easy, especially when you feel so unwell. I can't believe I've never heard of swollen tonsils as a symptom - that's insane! It just goes to show that our bodies really are just one big interconnected system. I really hope that you start feeling better soon.
@@mirandabraham27 definitely on the road to recovery. I got a dosage of vitamin d to start with according to where my level is from my rheumatologist and she is taking my thyroid and lymph node symptoms seriously enough to order imaging. I am waiting on the results of the retest to confirm LA antibodies (which is another thing celiac can cause). I also voiced my hesitation with making myself sick by reintroducing gluten long enough to get a formal diagnosis and she told me then don’t. I know I have it especially after getting the genetic results and don’t need that stamp of confirmation. I also ordered some trace magnesium too.
@@leslieisepic Amazing! So refreshing when you find someone who actually listens to you.
OMG, I was just thinking through about having or not having this biopsy to confirm my diagnosis and decided not to. Because of the same reasons you named! Also feel like I'm kind of not "legit" Coeliac for some reason, but we should really trust our bodies on this. If gluten free diet works for you, it's the best proof you need.
I loved your vedio it is very positive a
This process of getting diagnosed is kinda emotionally tough phase .
But seeing you happily explaining everything makes me feel strong . Thanks a lot. Wishing everyone good health and strength to get through this!!
You ARE strong!! You got this - it's not easy but you're not alone
Who DID invent cheese cake? Have you tried the Fauxmagerie cheeses? They are delightful!
I still remember the brie you brought to work, sooooo good. I have to believe you will eat cheese again someday
Your videos are so helpful!! Love how positive you are. Literally can relate so much. I’m 23 and have just had a positive blood test (constipation was also my main symptom). I personally think excessive use of antibiotics might have triggered mine. Unfortunately due to the coronavirus situation, my biopsy will no doubt be a while away, so I have gone gluten free for now and plan to undertake the gluten challenge for the biopsy. Thanks for your video!
Oh man I can only imagine how tough it must be to be going through getting diagnosed at a time like this!! Wishing you all the best!
Miranda Abraham yeah it’s not ideal really, especially as now I’m going gluten free knowing that I’ll still have to do the gluten challenge :/ but at least I’ve had my blood test I suppose! :)
Miranda Abraham By the way, how long after going gluten free did it take for your constipation to reseolve? I’ve been gluten free for a week now and, whilst at first things seemed to improve, now my symptoms are worse than ever :(
@@Jedhead6650 Ugh I hate to be the bearer of bad news, but I would say it took me a full two years for my constipation to improve. The bloating and constipation were the last symptoms to go away (and I still have them sometimes)! But everyone is different so hopefully it gets better for you sooner than it did for me. I was thinking of making a video specifically about constipation - I'll try and get on that for you :)
Miranda Abraham That is bad news, especially as I’m yet to do my ‘gluten challenge’ 😅. However, at least I now know what to expect haha. Yeah that would be good! Thanks!
New subscriber here, I love listening to your celiac journey x. I have so many celiac disease symptoms myself like pain and cramps after eating gluten, anemia, headaches, extreme bloating, hair loss and no hair growth, bathroom issues, extreme fatigue, messed up weak teeth and cannot absorb any nutrients from food and supplements which previous blood tests have picked on nutritional deficiencies.
This has been going for 4 years and so far had 2 blood tests which showed I was negative for celiacs. I dont believe this at all and feel like its a false negative and have urged the GP doctors to refer me for an endoscopy yet they rely on blood tests which is frustrating. The only way I can get an endoscopy is on a private basis which will take time.
Hey, I'm so sorry to hear you're going through all that!! I hope you can get yourself tested to figure out what's going on and start to feel better. It's so hard to live your life with all those symptoms. :(
Re the vitamins: Try crunching them up with your teeth, a pestle and mortar or some other way before swallowing. Or perhaps there is a powder/liquid you could take? That way they are easily absorbed at the top of the digestive system, ie mouth and oesophagus before reaching the damaged intestines. Before I got ill with coeliac disease I was taking a cheap multivitamin but I don't like taking pills so I was crunching it up with my teeth. I had several vitamin tests along with my ceoliac test and I was in the normal range for all of these despite showing strong coeliac markers. I'm not a doctor but it might just help. Also, if you can get some quercetin online or from a health food shop that'd probably be a good idea. If your hair is falling out then you're likely inflamed enough that your histamine levels are too high for your body to break down. Quercetin interferes with the release of histamine allowing your body a chance to catch up. It hasn't got the gold standard of peer reviewed studies to back it up as yet but there are some promising studies showing positive effects and it worked well for me. If you're taking any other medication you might want to check online that it's ok to take for you. It's just a polyphenal extracted from plants but more concentrated than you would consume naturally. Also, It's worth checking that your shampoo, conditioner and other hair care or facial products don't have wheat as an ingredient as some do.
23andme genetic testing is currently around $200 and they have occasional sales. I’m sure there are other providers.
I have 3 autoimmune diseases as well xx
Thank you for sharing your story. Your symptoms are so similar to mine, the constipation, fatigue, brain fog, bloating.. I hardly recognise myself anymore but I just put it down to “having kids”, “anxiety”, “stress”. Everyone complains about being tired and stressed with kids right? I also have iron deficiency and borderline B12 levels. Just had my serology test done as my nephew has just been diagnosed and my mother is a walking celiac advertisement (but refuses to get tested), waiting for results! I’m kind of hoping for an answer to see a light at the end of the tunnel.
Don't worry you will be fine.।।
Ugh it must be even harder when you have kids! I feel like we're really good at adapting to push through our symptoms and get through our daily lives - which makes it so much harder to know if it's "normal" or something more. I hope you get this figured out soon! Maybe it'll even convince your mom to get tested. 🤞
God I feel this. I was tested for everything but never celiac until recently and my TTG tests were positive(and I have the genes) but I was told that I couldnt be diagnosed "For real" was to do the biopsy. I really wish doctors werent like this.
Are your kidding me!!? That's crazy! I officially welcome you to the celiac club even if the doctors won't.
My IGA q was high but doctor dismissed it
The same thing happened to me, except I went two years gluten free and the smallest trace affects me. I decided to do the endoscopy and it was for nothing. With two years gluten free my stomach was healed. My GI told me to eat gluten for two weeks before the endoscopy and something told me that wasn’t enough time. I was miserable and my health was on a slow decline only for them to tell me there’s no damage and I don’t have celiac despite showing positive blood results twice (two years apart). I’m frustrated because I haven’t fully recovered. I’ve developed new symptoms now, including nerve pain that travels from my feet to my waist. Gluten is absolute poison and they can keep their “gold standard”. The blood test is enough for me to say no. Even my family warned me not to do it because they saw how badly it affected me. 🤦🏽♀️
Omg that's so awful!! I'm so sorry you had to go through all that for nothing except new symptoms. I really hope the way we diagnose celiac disease is re-evaluated at some point. It doesn't make sense that you should have to suffer more just to start the work of getting better! I don't know if this will make you feel any better, but it took me a full 5 years gluten free before I felt like my body was really recovered. Hopefully time will be the answer for you too.
In the uk if you're TTG score is high enough then you don't need a biopsy.
What the heck, are you serious!? That's crazy, gonna have to look into that. Thanks for sharing!
You can have cheese not soft cheese xxx
Well now I’ll drink bubble tea with that thought 😂 “whack me in the back of my throat”
😂😂 hahahhahah omg I'm sorry
Gluten free Bread is horrible xxx
It’s horrible to be gluten free xx