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CurrantCottage

Four Weeks Into My Gluten Challenge .....

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.... and I'm excited that my GP has finally agreed to refer me to a GI, she rang yesterday evening to say she'd send a letter and I need to ring next week to make an appointment.

 

This gluten challenge has been odd though - in the early days/weeks my symptoms were extreme: migraine, crabby mood, dashing to the loo, stomach cramps, heart racing anxiety attacks etc and now they seem to have settled down to just feeling permanently exhuasted, very bloated, sluggish digestive system and really down, I kind of feel too fed up to even cry! I just cant raise anything enthusiasm and everything feels like an effort, also my sciatica is playing up again which is annoying as I'm a house cleaner so am hobbling around at work!

 

Just wondering if that is all normal - I'm kind of scared to go to the GI, because I'm scared of a negative result: from blood work (as it was negative a year ago) and biopsy and I worry but my GP and family will think - they will think that I'm a hypochondriac and wasting everyone's time.  Still at least I know I'm gluten sensitive so there is no doubt that I'm giving it up when this is all done - my asthma and sinuses are dreadful and I've gone up a size in clothes with the bloating, and weirdly enough I'm just craving carbs like its going out of fashion!

 

Sorry to moan, I'm kind of at the point of thinking "its all in my head - I just will cancel this referral to the GI" because of the embarrasment of being told there is nothing wrong with me if its all negative !!1

 

Ali 

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Do not give up that GI appointment! Even if it is negative (there is no test for Non-Celiac Gluten Intolerance) , you can go gluten free! My cousin tested negative on her endoscopy (they did NOT give her a blood test or even took biopsies to test for celiac disease), but she went gluten-free anyway because of me and her Mom. Guess what? She feels great on the diet!

Hang in there!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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Do keep in mind also that your medical records are your private information.  Don't cancel your appointment it will do no harm to go and after the testing is done go back to being gluten free. You know it is not all in your head and the turn around in your health and well being should be enough to convince your family.  You can always tell them that the doctor told you to go back to the diet which if he listens to you and your symptoms on the challenge is what he will likely do no matter what the test results are. . 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thank you both for your advice - its silly but I always worry so much about "what people will think", at the end of the day I guess it doesnt matter because I know what makes me feel ill and like you say ravenwoodglass, my notes are private !

 

You've both really encouraged me ! Thank you !  Ali

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Don't worry about what other people think! I've been gluten free for over 5 years without a DX (had extremely severe reactions to gluten challenge and had to discontinue it for my safety) and I've gotten to the point where I'm nearly totally comfortable with living as a celiac, despite the lack of DX. If living gluten-free allows me to be a functional productive member of society and eating gluten nearly killed me, that tells me all that I really need to know. 

 

Just make sure that you communicate well with family and friends up front and let them know how careful that you need to be. Being casual at first and then getting more serious with the diet later is tough. It's far easier to enforce a "you can't cook for me" rule if you start at the beginning.


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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Don't worry about what other people think! I've been gluten free for over 5 years without a DX (had extremely severe reactions to gluten challenge and had to discontinue it for my safety) and I've gotten to the point where I'm nearly totally comfortable with living as a celiac, despite the lack of DX. If living gluten-free allows me to be a functional productive member of society and eating gluten nearly killed me, that tells me all that I really need to know. 

 

Just make sure that you communicate well with family and friends up front and let them know how careful that you need to be. Being casual at first and then getting more serious with the diet later is tough. It's far easier to enforce a "you can't cook for me" rule if you start at the beginning.

 

Thank you so much for your advice!!!  Especially when you mention starting off serious with the diet - I'm dairy free but friends/family/those I work for are always forgetting and say, splashing dairy into my tea instead of almond or soya milk - just recently I've found myself saying "its ok...I'll drink it".  I'm thankful I dont have extreme reactions with dairy but in some ways its hard to be strict when you dont if that makes sense! Thank you again !

 

Ali

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I hope my story helps a bit..

 

 

4 years ago I went to the doc in a lot of pain. We tried going gluten-free for 12 weeks. Went back had no pain.. Did Test.. Came back normal.. off and on for four years I have gone in and out of gluten-free depending on the severity of my symptoms. ( I do not recommend this).. 

 

Recently no amount of gluten-free was reducing my symptoms ( I have no gallbladder, female parts, appendix etc....) I have a new GP. Her response to me was an astonished and somewhat angry attitude as she said 

 

" keep eating gluten and you will die"  

 

She offered me blood tests and an endoscope, but said truly they were unnecessary with my hx and especially the intestinal cancer issues in my family.

 

If even the cross contamination was aggravating my system to the point of no relief, then I am celiacs and my body is dxing me.

 

3 days of VERY STRICT no contamination, removal of pans, utensils, plastic bowls etc... and the uncontrollable GERD of the past 6 months and stabbing pains are well under control. Not gone mind you, but controllable. 

 

I have been so long in irritating my body because of embarrassment about the strictness that several of my bodies organs have suffered. MY esophagus has a lot of damage to the point I have issues swallowing.

 

Don't let fear of others opinion make you not listen to your body to a great detriment to yourself. It is hard, but for my family I had to make it clear that this was not a "diet". This was an allergy and a very severe one at that. It really helped them understand better.

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Hi Nonnarae - thank you for sharing, it helps so much to read about other people's experiences, and you've been through a lot.  Its so easy for me to think I'm a hypochondriac, that the symptoms I've had over the years are just in my head and I'm a great one for cutting things out, adding them in and getting ill again, then cutting them out etc - I guess I just want a medical person to tell me to not eat gluten, rather than it be my own decision because I'm just so weak willed and give in to people's pressuring. Sorry for rambling !!! Still, I've just had a phone call to say I've my initial appointment has been booked for next Wednesday 3pm, so at least things are moving now !!!

 

Ali

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My ultimate end to eating gluten was having a Transient Ischemic Attack (TIA or mini-stroke) after days of severe headaches during my gluten challenge. I figured that there was no way that I could ever in good conscience eat the stuff again, regardless of any test results or lack thereof.

 

People don't generally pressure me much, because I've made my stance on gluten pretty clear. Plus, lots of people remember the painful symptoms that I was having, before I even realized gluten was an issue. (I got a severe skin rash and later figured out through the process of elimination that it was wheat related)

 

Plus, lots of people don't even know what celiac disease is or don't understand it very well, so having a diagnosis of it doesn't always mean that you'll get more accommodation. Saying that gluten almost killed me and I'll never touch it again is pretty much as effective as having a celiac DX. Awhile back my in-laws voluntarily, with their own money, bought a grill for me to use on gluten free items at their house. My mother-in-law is deceased now, but my FIL's fiance is really great about things too. I was really clear up front with her about how careful I need to be and she will gladly let me go get my fruit and salad before they are cross contaminated and will suggest that I set my gluten free entree in a separate part of the kitchen.

 

Good communication up front seems to solve a lot of problems. When my FIL's fiance wanted to know about cooking gluten free, I explained to her that I don't generally eat items prepared by others. I told her that it's easier for me to make my own food and enjoy the company of others, rather than worrying about getting sick. So every time, we get together for a family meal, I bring something that I can eat, they bring stuff that they want to bring, and we can all enjoy the fruit, salad, sorbet, juice, etc. :)


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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My ultimate end to eating gluten was having a Transient Ischemic Attack (TIA or mini-stroke) after days of severe headaches during my gluten challenge. I figured that there was no way that I could ever in good conscience eat the stuff again, regardless of any test results or lack thereof.

 

People don't generally pressure me much, because I've made my stance on gluten pretty clear. Plus, lots of people remember the painful symptoms that I was having, before I even realized gluten was an issue. (I got a severe skin rash and later figured out through the process of elimination that it was wheat related)

 

Plus, lots of people don't even know what celiac disease is or don't understand it very well, so having a diagnosis of it doesn't always mean that you'll get more accommodation. Saying that gluten almost killed me and I'll never touch it again is pretty much as effective as having a celiac DX. Awhile back my in-laws voluntarily, with their own money, bought a grill for me to use on gluten free items at their house. My mother-in-law is deceased now, but my FIL's fiance is really great about things too. I was really clear up front with her about how careful I need to be and she will gladly let me go get my fruit and salad before they are cross contaminated and will suggest that I set my gluten free entree in a separate part of the kitchen.

 

Good communication up front seems to solve a lot of problems. When my FIL's fiance wanted to know about cooking gluten free, I explained to her that I don't generally eat items prepared by others. I told her that it's easier for me to make my own food and enjoy the company of others, rather than worrying about getting sick. So every time, we get together for a family meal, I bring something that I can eat, they bring stuff that they want to bring, and we can all enjoy the fruit, salad, sorbet, juice, etc. :)

 

Oh my goodness  - what a terrifying experience you had !!  Your inlaws sound so lovely and supportive which must be a huge help and I thinking taking food along for me to eat at family events will be the sensible way forward.  I find it difficult because I've been vegetarian for years, but also a vegan for about 10yrs (although I've now gone back to veggie....eggs from my little bantam and the odd splash of dairy in tea when people get it wrong!) - my family (husband and children aside) were not at all supportive and just felt I was being awkward - especially my step mother who one Christmas actually said "we've got some sliced gammon for you to eat with salad - I know you eat gammon" - honestly, I'd not eaten meat for years and years, and her own SIL is a vegetarian !!!!  I totally understand why your health - and life - would be in danger if you continued with gluten, how very scary !!!

 

Ali

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Being vegetarian in addition to celiac is totally doable. :)

 

I'm vegetarian and gluten-free. (in addition to other things, like limited soy, mild dairy intolerance, low sugar, etc.) It reduces the amount of convenience foods available, but that's not always a bad thing. I have a great gluten-free/vegan/soy free recipe for spicy italian "sausage" if you want something resembling a vegetarian hot dog. I also make a vegetarian burger crumbles out of quinoa. 

 

 

http://www.onegreenplanet.org/plant-based-recipes/how-to-make-homemade-spicy-italian-sausage-vegan-and-gluten-free/

 

https://veganwithout.wordpress.com/2011/01/02/quinoa-or-millet-crumbles-ground-beef-substitute/


~Ruth

Gluten free since 2/14/2010 after suffering a rare and serious complication from my gluten challenge

 

 

 

 

 

 

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Oh dear... I am not certain I could do gluten-free and vegetarian, but I know that I have looked at a lot of things I do eat and decided to get a lot more healthy. I must say I am absolutely terrified of eating anything I have not prepared. It is sad for me since I love to cook and bake and can. I just do not even want anyone else in my kitchen. I am glad to see that I may not be the only one thinking of bringing my own food to gatherings..

 

I am sorry to hear that you are not getting a lot of support CC. I am lucky that my spouse i VERY supportive and two other members of my in-laws family are celiacs. 

 

My parents just said " I don't know why you are so sick and well I guess you wont be eating here anymore." Nope I will not, but that is alright.

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Being vegetarian in addition to celiac is totally doable. :)

 

I'm vegetarian and gluten-free. (in addition to other things, like limited soy, mild dairy intolerance, low sugar, etc.) It reduces the amount of convenience foods available, but that's not always a bad thing. I have a great gluten-free/vegan/soy free recipe for spicy italian "sausage" if you want something resembling a vegetarian hot dog. I also make a vegetarian burger crumbles out of quinoa. 

 

 

http://www.onegreenplanet.org/plant-based-recipes/how-to-make-homemade-spicy-italian-sausage-vegan-and-gluten-free/

 

https://veganwithout.wordpress.com/2011/01/02/quinoa-or-millet-crumbles-ground-beef-substitute/

 

 

Thank you for the links !!!!  They both look really yummy!!!  I so cant wait for this gluten challenge to be over, I feel so rubbish and went to bed early with a migraine,then couldn't sleep for feeling nauseous anyway!  Still I'm nearer to finishing it than when I first started!

 

Ali

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