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Jmg

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Jmg last won the day on March 16 2018

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  1. Based off some of the stuff I've read, I think I want to just go off gluten. If I eat a piece of bread 3 months from now and I feel lousy right away I'll know I have a problem with it. There won't be a need for a gluten challenge. I can take a hint from my body, you know what I mean?

     

    Totally understand and your choice. However, be aware that should you subsequently decide that you'd like a firm diagnosis it may be much more difficult and painful to obtain.  This is the situation I've found myself in and I really wish I'd had the tests before giving up gluten. If you read around enough you'll see that same viewpoint made many times here and elsewhere. 


  2. Does anyone have any advice on bringing up gluten to your doctor? I feel like the doctors don't understand how severe my symptoms are and do not take me seriously. I may have a complex about it because I am only 25.

     

    I am eating gluten every day to be tested; if I ever get the courage to bring it up to my doctor. I have had a blood test when I was not eating gluten and it came back negative and IGA deficient.

     

    This is what I wish someone had told me at round about your age, maybe a little earlier.

     

    Doctors earn their status but they're not infallible and no GP can know everything about every condition, it's impossible. They are all under time / cost pressures and however well meaning will naturally want to progress your case and move on to the next as quickly as possible. 

     

    No-one will ever know as much about your body as you do and no-one will ever have a bigger stake in getting the right answers. Be confident and assertive, if your body is telling you something then trust it and make sure you communicate it clearly to your Doctor. By all means take the prescribed medicine and advice but don't allow yourself to be fobbed off with something that will treat a symptom without also if possible making some progress towards determining its cause.  

     

    If your eating gluten now it would make sense to make an appointment for a test so, if it does turn out to be a problem for you,  your not doing that for longer than strictly necessary. So make that your goal for your next appointment, write down some bullet points if that seems helpful. Get the test scheduled and take confidence from asserting yourself and taking ownership over your health.

     

    That's pretty much what I'm doing now, I just really wish I'd done it years ago as the various symptoms I've experienced have had a big impact on me. 

    Best of luck, hope you get the answers you need :)


  3. I'm on day 10 of my challenge and this:

     

    I'm very surprised how weepy I feel. Just a general low level sadness, and inability to cope. *sigh* 

     

     

    is how I feel too. I try to look at it in a positive way, at least as it comes after the change in diet there's an explanation for it and that makes it a lot easier for me to deal with it. In the past I'd be thinking about anti depressants or counselling, now I know it's physical manifestation of my bodies reaction to gluten, it doesn't make me less sad or anxious, but it does help me to rationalise and deal with it :)

     

    Best of luck!  ;)


  4. Valerie from what I've read negative biopsy notwithstanding your possibly positive for 3 or maybe 4 of the 5 criteria for celiac mentioned in the video:

     

    Signs symptoms of celiac disease

    Blood test

    Positive Biopsy

    DNA

    Positive reaction to gluten-free diet

     

    You may be one of the 20% who don't make all 5 but still have celiac. Or as others have said you may have caught this before the intestinal damage. Have you had a follow up meeting with your Doctor to discuss the biopsy results? It could be they would be willing to diagnose on the same criteria as Dr Fassano outlines and the positive DNA and/or reaction to a gluten-free diet could get you the diagnosis. Maybe you can follow up with them first and if they feel the diagnostic route is exhausted you could then consider self diagnosing as having a problem with gluten and going on the diet regardless. That's my plan if my biopsy is negative as I've now got sufficient personal correlation of the negative effects of gluten on me.

     

    As for family and friends, if and when it comes to it if I don't get a definitive diagnosis I'm still probably going to tell people I have celiac, as that's how I'll be living and I don't want to waste time and energy discussing the various spectrums of gluten sensitivity.

     

    Best of luck, hope your feeling positive - it's great your finding this out now and not in 20 years! :) 


  5. Valerie I found this presentation by Dr Fassano really useful in explaining some of the complexities around this condition:  

     

    It's a long watch, but if you skip to 55minutes he talks about diagnosis, including the percentages of celiac patients who do not show on the biopsy. Obviously you should speak to your Dr but it may be that with a positive blood test and response to gluten you may still be diagnosed as celiac.


  6.  

    thanks for the replys guys. just been to see my gp and they told me to go gluten free for the next 3 weeks which will take me to a month on gluten and then get tested. funny thing is she said she thought i had been tested for celiacs a year ago but it must of been missed. takes the mick really.

     

    Dan, your post above seems a little confusing. If your GP is planning a test for you the last thing she should be advocating is for you to go gluten free! You need to be consuming gluten for weeks prior to the test. 


  7. I have similar symptoms. The only way you'll get that certainty you seek is to go through the testing procedure which requires you to consume gluten. That's what I'm doing right now. If you get diagnosed you'll have both every incentive and lots of support to get through the adoption of the gluten-free diet, although I have to say that any withdrawal I had was as nothing compared to the relief of symptoms. Put it this way, at the end of this gluten challenge I'm going gluten-free for life regardless of the biopsy report as my own body is telling me quite clearly that it wants no more of this. 

     

    Your still young and you have so much to potentially gain from identifying this early. It's ultimately a personal decision however and good luck with whatever you choose to do. 


  8. Second question is, if she is diagnosed, is there a common time frame for these symptoms to lessen? The depression is one that we would like to know about specifically if anybody has any experience in the field!

     

    There are others here far better able to answer your first question. I can tell you that my depression started to lift within 3 days of eliminating gluten from my diet, if your ex is the same as me it would be one of the first, most noticeable changes, with others following in various time frames.  Hope that's of some help, although bear in mind it seems like everyone is different. Best of luck!


  9. Hello,

    I am new to this forum, so I am looking for answers.  Here is my story.

    In Jan. I ended up in the hospital with severe stomach and back pain. I have 3-4 day episodes with nausea, light headed and fatigue.  The pain isn't as bad as what put me in the hospital, but is does put me down.   I have had every GI test there is. The back pain is in the middle of my back, mostly on the right side.  Is it constant now.  Yesterday I had an exploratory lap surgery of my abdomen done to see if my organs were ok.  Everything came up fine.  My doctor mentioned to my husband that it could be celiac disease.  We both kind of brushed it off and thought it was silly.  However, this afternoon I decided to read about it. I was surprised at what I read.  It all fits.  What really got me was the HD rash on the back of my neck.  This was really bad a couple of months ago.  I went to my GP and he gave me some liquid med to help with the itching.  What I read today, this is a symptom.  I go back for my post op visit in 2 weeks.  We will see where this takes me.  I know there is something wrong with me.  I am irritable and just don't feel well most of the time.  Is it rare for a 50 year to develop this and why did it come on so strong in Jan?  Would love to hear from others on their symptoms.  Thanks!  

     

    I don't have a diagnosis yet but many of your symptoms are familiar to me. At 12 I had a healthy appendix removed due to mesenteric adenitis. I've also had severe stomach pains over the years, horrible stomach cramps.  I get a rash on the back of my neck and scalp.  I've had severe lower back pain including sciatica. I've also had irritability, depression and anxiety. All of which have improved dramatically following removing gluten. Good luck with your diagnosis!


  10. I'm travelling to Denmark next week,the first time I've travelled overseas since going gluten free. From what I've been able to find out there should be some gluten free foods available, but I'm still a bit nervous about both potential cross contamination as well as being unable to fully participate in meals out etc.

    Just wondered if anyone here has travelled there or have any tips on good foods to take along?


  11.  

    What is the likelihood this will help clear up some of her psychological symptoms when she is permitted to go gluten free? She is currently not gluten free until she sees the specialist tomorrow to determine is a biopsy is necessary. To be honest, and by her own admission, those are the worst problem.

     

    I had Anxiety, Depression and irritability/mood issues. I've never had a diagnosis of AD/HD but would guess I've had many of those symptoms too. Since changing my diet they've all responded really well, within 3 days my depression and brain fog started to lift. The world is a very different place for me without gluten in my diet. Hopefully your stepdaughter will have the same experience. Good luck!


  12. Are you keeping a food diary? You've had progress from going gluten free, which you'd be able to look back on and draw confidence from. You could now try maybe just a few days without dairy or corn/soy/etc, and note down how you're feeling 

     

    It's difficult when your in the moment to assess how you feel, but a diary can help you track change over time. I did one a few years ago, before I realised gluten was an issue for me.  I made changes to my diet (reducing sugar) and recorded both what I'd eaten and how I felt. After 3 days I could see the difference reflected in my comments alongside the meal description. It established the link between diet and how I felt, sadly I drew the wrong conclusion as although refined sugar isn't good for me I didn't identify gluten.

     

    It's also helpful as it makes you much more aware of just what you're eating, who knows maybe there's a contaminant sneaking in and now your body is free from the all out assault of constant gluten it's now much more sensitive to smaller amounts?

     

    Good luck! 


  13. It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)

     

    This wasn't directed at me but nonetheless I found it great to read, thank you for writing it. 


  14. LOL I can help with that one - I ave as that for decades. It is postural hypotension. It can be a result of low fluid levels or salt content in the body, or from low levels of aldosterone (an adrenal hormone).

     

     

    Wow, I've had this for many years but never mentioned it to a Doctor or when I listed my symptoms. I've since found this: https://www.celiac.com/forums/topic/77632-finally-some-answers-to-my-postural-hypotension/ which has given me further cause for thought.

     

    Learning a lot here!


  15. So, I've been thinking, what is the chance that they will ever come up with a celiac test that doesn't require any gluten exposure at all? Is that absolutely impossible?

     

    It seems like the current tests essentially measure how much damage gluten does to you.

     

    How would the mechanism of such a test even work, if they were able to come up with one?

     

    This research seems to be at the cutting edge: http://www.healthline.com/health-news/food-new-blood-test-for-celiac-disease-011714 although it still depends on 3 days of exposure. just wish it was available now!


  16. My husband tends to have blood sugar issues and so requires protein with breakfast. Can anybody help me brainstorm good vegetarian options that won't compromise my gluten free house? He is lacto-ovo vegetarian, so milk and eggs are fine.

     

    You can put just about anything in an Omelette and I find thy set me up really well for the day. I had spinach, avocado, mushroom onion and tomato in mine this morning :)


  17. I take that back. In my headline I said newly diagnosed. Smh. I bow in apologies :( I totally missed that. Coming up with a clever tag line is not something I am all that great with, but I am type a crap ton. Lol.

     

    I'm someone that cut out gluten prior to suspecting it as a problem and I really wish I'd had the benefit of the advice Karen gave above. Once you've cut it out it becomes much harder to get a diagnosis. It may not be what you wanted to hear, but it's very good advice. 

     

    I know what its like to be surrounded by food that you can no longer eat. However before you throw everything away, why not start keeping a food diary and record what you eat and how you feel. Stick to non processed foods, fresh vegetables, meat and no grains. See if you feel better? I followed a paleo diet, which looking at the exclusions you've posted above would probably be something you could eat. There are lots of great sites and recipe ideas associated with it so that may be something to consider. 

     

    The good side is that I feel so much better that it more than makes up for missing out on some old favourites, hope that proves the case for you also. Good luck :)


  18. My wife was telling me that we need to go out and purchase new pots and pans becasue she has a gluten intolerance.  I find this ludacrious since out pans are new and teflon.  I made some blueberry muffins in a muffin pan and even put paper cups in them and washed it, put it back and she will not use it claiming she an get contaminated....someone please shed some light on this subject

     

    Thanks

     

    I'm currently eating within a gluten packed household and whilst I understand your frustration, I know completely where your wife is coming from. It's only once you've eliminated gluten from your diet that you realise quite what an impact it has on you and what's more, it seems like the less you consume the more sensitive you are to smaller and smaller amounts. I've already had a couple of mystery contamination's which could be down to pans or cooking utensils. It's a horrible feeling, because you know that whatever physical symptoms are manifest, there's hidden damage going on as well. 

     

    Your wife will have to live with this for the rest of her life. Going out to eat is a massive struggle, so she definitely needs at least one place where she can relax and eat safely. 

    If you don't want to eliminate gluten as a family, then your wife needs some separate cupboards and pans, chopping boards etc. To reduce the risk of contamination, but as importantly, to allow her to eat without fear. This also means that if she introduces something new to her diet she'll be able to asses it without a false positive from a contaminated pan. 

     

    There's some good advice here


  19. I avoid wheat as have cfs / m.e so avoid it as think makes me more tired and bunged up but mainly bloated. I havent eaton wheat for a year apart from if have lager which is sometimes not for months sometimes few times a months in summer i tend drink lager more.

     

    I drink cider now. It's probably even more suited to a summers day than a lager. I love beer, lager, ale, stout etc and of course I miss it, but feeling better is far more important to me. The bonus is that what I thought was a hangover was actually 70% glutening so I feel a lot better the day after as well!  I have bought a couple of gluten free beers to try when the time is right.

     

    Maybe if your problem is wheat allergy related you'd be ok with corona, which is made with barley and tests very low for gluten. As I've not yet established whether I'm celiac that's not really an option for me. Good luck!


  20. Hi Lisa

     

    Thanks for taking the trouble to comment and sorry I have taken this long to reply! I will have a look at your pre-diagnosis section and have a think about what I want to do.

     

    My feeling at the moment is to wait until I get back to the UK to see a Doctor, but I might revise that.......

     

    I am so reluctant to start eating gluten again, because even after three days I feel better! My kidney pain is massively reduced, still there but far less frequent and less painful and today I managed to sit outside for an hour-ish before it started to hurt and even then it was only a little and I didn't have to rush to eat in an effort to subdue the pain when I came back in and managed to hang the washing out before having to eat lunch. Not very exciting I know, but it feels like such a relief that I might finally be on the right track.

     

    I don't want to sound ungrateful or stubborn (I am stubborn BTW :-)) and I will read the pre-diagnosis section and might well start eating a slice of bread a day as you suggest, just don't want to revisit the kidney pain anytime soon.

     

    Sue

    Sue, I cut gluten out and then found when I reintroduced it the effects were much worse than before. Just 6 days back on gluten pre a blood test left me feeling awful. The test was negative, Iwish I could go back and have had the test before I cut the gluten out.