Help! Always been so active, but now really struggling! I have so many questions!

[RMJ]

Hi Cara,

Since I no longer get the horrendous headaches that can go with migraines, I just try to keep functioning. If I get an aura it lasts about 30 minutes but most of that time I can still see pretty well.  If I get the loss of vision that only lasts about 5 minutes.   In fact, I find they are less bothersome and I feel less "blah" if I keep working than if I take time off to rest.  I very rarely cancel activities because of them.  Mine did lessen when I stopped oral contraceptives so hopefully that and going gluten free will help you.  Unfortunately I do find that too much chocolate is a trigger for me

[GFinDC]

Hi Cara,

You got it right, staying on gluten until testing is complete is very important.  Celiac disease is an autoimmune condition and the testing is looking for antibodies (blood tests) or the damage caused by antibodies (endoscopic biopsy).  Since the antibodies start to decline after going gluten-free, the testing results are affected.

Celiac disease can damage the lining fo the small intestine, which then makes it hard to absorb nutrients our bodies need to function.  So we can get symptoms of vitamin and mineral deficiency and also plain old fatigue from not having enough food for our cells to eat.  Celiac  can be kind of like starving on an all you can eat buffet.  Lack of nutrients can affect every organ of our bodies and their functions.  So there are many different symptoms that people can get.

Once you go gluten-free the the immune response should begin to taper off.  But it doesn't stop on a dime, or in a few days.  It can take weeks or months to stop.  So your gut will start to heal and you will start to absorb nutrients better, but not instantly.  Any crumb or tiny amount of gluten can kick the immune response into high gear again.  We call that getting glutened.

A great way to start the gluten-free diet is to eat whole foods, like meats, nuts, veggies, and eggs.  Skip the dairy for a few months.  Also avoid any processed foods for a while and sugar and carbs.  Eating simple foods that are easy to digest is helpful.  It's also nice not to have spend a lot of time reading through ingredient lists and interpreting what might be gluten, rye, or barley.  Around 10% of us also react to oats so it is best to avoid them at first.

The University of Chicago celiac center has a good FAQ on celiac that might help.

Open Original Shared Link

Welcome to the forum Cara!

[deb-rn]

Also keep in mind that doctors usually do the cheapest test, which is not the most accurate.  Just because they tell you the blood test is negative, doesn't mean you aren't at the very least SENSITIVE to gluten.  Gluten is not essential for existence and all grains are rather poorly tolerated by many people.  Grains also leach out important nutrients, that's why it was mandated many, many years ago that manufacturers "fortify" all grains, cereals, etc. to try and put back what they leach out of our bodies.  Sticking to whole foods really is the simplest.  The packaged gluten free items are really high in starches(carbs) and that will aggravate migraines too.  Figuring out I was sensitive to gluten was the best thing that has happened to me.  That led me to read more and find out the other things in my diet that weren't doing me any favors, like soy, dairy, carbs and legumes.  I took Amitriptyline many years ago and no matter how small a dose I took, I felt hung over the next day!  Since going gluten/soy/dairy/legume/mostly carb - free.... I finally got rid of the antidepressants I had taken for so many years... along with the acid reflux medicine.  We just eat meat and a couple veggies and we're good to go!  Add butter liberally!  Spices make everything taste great, but beware there is wheat in many of them as fillers.  It's a learning curve.  You'll get the hang of it!

Debbie

[RMJ]

10 hours ago, deb_rn said:

 Grains also leach out important nutrients, that's why it was mandated many, many years ago that manufacturers "fortify" all grains, cereals, etc. to try and put back what they leach out of our bodies.  

Refined grains are fortified because valuable nutrients are removed during the refining process (for example when making white flour out of whole wheat).  They do not remove nutrients from our bodies.

[apprehensiveengineer]

I think others have covered most of your questions, but I thought I would chime in on the sports part. I am a fairly elite level distance runner and ran on my university team throughout undergrad. Retrospectively, it is obvious to me that having undiagnosed celiac disease had a huge impact on my ability to train and compete consistently, but I still managed to achieve quite a lot during this time. To be honest, when I accidentally gluten myself and take stock of how bad I feel, I am completely shocked that I was even able to train seriously at all.

I think the key is respecting recovery for endurance training - with celiac and without. Even before I knew what exactly was wrong, it was obvious to me that my capacity to recover from hard training efforts was unreasonably low. For a while I tried to push through this, but this ended with me essentially lying in bed for weeks at a time because I was so sick, which was frustrating. After a year of this, I figured out the bounds of intensity that my undiagnosed celiac self could tolerate without implosion. I seemed to be able to handle the same training volume, but high intensity efforts and races left me crushed. This "speed limit" strategy was not ideal, but it was what I did to survive the situation - varsity sports are a high pressure environment, and despite trying to get answers from doctors, I got none (because apparently being able to run for more than 30 minutes consecutively means that it's impossible to be seriously ill according to most doctors :| ).

Anyways, flash forward to what happened when I started the GFD and recovery. It took about a month for me to notice a huge difference in my running. I still wasn't entirely healed by any means, but it felt as if someone has lifted a weight from my back (this was not literal as my weight didn't change). It was the most encouraging feeling. Despite feeling a lot better, I maintained my previous protocol because I knew that my body needed to focus on healing itself from the years of damage. I tried to focus on having fun during workouts and not timing myself. I also began training by myself to remove any comparison I might have inadvertently made between myself and my teammates.

I would definitely recommend continuing with triathlon. I think that continuing with running and racing has been one of the few joys I've had since diagnosis. It allows you to feel safe, normal, empowered and keeps your body in better condition to fight the disease. Best of luck.

 

[Cara123]

Hi guys, 

I'm not sure how this works and if you'll get a notification of my update. I just wanted to let you know that I've had my results back and the gastroenterologist has said that I don't have coeliac but am gluten intolerant. She is increasing my levothyroxine and starting me on the small dose of amytriptilyne for the neuropathy (I think that's right? The migraines, joint pains etc) I also need folic acid and to continue with ferrous fumurate. She is planning to scan my liver as something has increased there (fat content?) But she said that could subside with the increased thyroxine. 

I took the advice to stop gluten after I had completed the tests (so that's 4 or 5 days ago) and my stomach issues (pain, bowel movements,  cramps etc) seemed to settle down really quickly, the painful joints, dizziness etc still there but I can definitely feel the difference already! So onwards and upwards with the gluten free diet, im just so relieved to know that it's possible to aim back to where I was before this all started!

So I will be staying on here and checking out your great advice.

Thank you all so much!

[RMJ]

I'm glad you're starting to feel better!

[Jmg]

Well done on getting through the diagnostics process Cara, now you can start to feel better! Welcome to the exclusive 'not celiac but still avoiding gluten' club

You will probably find the neuro symptoms take longer to resolve, it can be helpful to keep a journal to track yr progress there as it's easy to lose track of how you felt at any particular time. That also helps in identifying any slips in the diet. It sounds like you have a great doctor which is such an advantage, I'm jealous!

speaking of which, now is the time to go through yr cupboards and weed out any potential gluten sources, sauce bottles, crumb filled jam or butter etc. Also be wary of old scratched pans, wooden spoons, chopping boards or sieves... and eat well, check out paleo recipes etc if you need some inspiration, there's loads we can eat and some good gluten-free alternatives if you crave a treat. 

if yr like me you will find all sorts of things improving over time that y never associated with diet. I never thought diet caused my back pain, but it did... So hopefully you'll get some nice surprises as you progress on the diet. 

All the best...

 

 

 

 

[cristiana]

2 hours ago, Cara123 said:

Hi guys, 

I'm not sure how this works and if you'll get a notification of my update. I just wanted to let you know that I've had my results back and the gastroenterologist has said that I don't have coeliac but am gluten intolerant. She is increasing my levothyroxine and starting me on the small dose of amytriptilyne for the neuropathy (I think that's right? The migraines, joint pains etc) I also need folic acid and to continue with ferrous fumurate. She is planning to scan my liver as something has increased there (fat content?) But she said that could subside with the increased thyroxine. 

I took the advice to stop gluten after I had completed the tests (so that's 4 or 5 days ago) and my stomach issues (pain, bowel movements,  cramps etc) seemed to settle down really quickly, the painful joints, dizziness etc still there but I can definitely feel the difference already! So onwards and upwards with the gluten free diet, im just so relieved to know that it's possible to aim back to where I was before this all started!

So I will be staying on here and checking out your great advice.

Thank you all so much!

Well done, Clara! Great news that you are starting to feel better.

Great advice from Jmg above, too.  I can only say that I have seen first hand a friend struck down with serious neuro stuff improve dramatically from giving up gluten, and she like you is not a celiac. She and I still have the odd issues with minor neuro damage (and for me it's been four years since I was DX'd) but it is right when they say neuro issues take longer to resolve.  

If you don't mind my asking, it would be great if you could let us how you get on with amytriptelene. 

[Bonnie F.]

On 2/12/2017 at 2:06 PM, Cara123 said:

I'm not really sure where to start, but I'll go with a bit of background. I've always been very active and fit (2 years ago I was doing triathlons!). I have a very stressful life (as most of us do) and I'd been putting the decline in my health down to that (increased work pressure, out from 6am-6pm, and family commitments meant I didn't have time to train anymore). Although looking back I think there have been signs that something was wrong. I had been tested for rheumatoid arthritis (was borderline on bloods but consultant said I was ok), I had nasty joint pains, and previously had h-pylori positive test with multiple visits to Dr since 2008, been on and off lansoprazole since then. I've gained almost 3 stone in 2 years!!! Things have become really bad since October, I became ridiculously exhausted, couldn't cope, couldn't focus (mentally but also blurred vision and dizziness) or think straight, had blood tests and told I needed iron. Became really ill over Christmas, went back to work (teaching A levels) was ill within one day, missed three days, dragged myself back in the following week, made it to Friday when I lost some of my vision on my way to work, I was driving on a fast road so it was scary. Lost parts of my vision 4 times that day culminating in a tremendous migraine that night (never had one before). I spoke to my Dr who advised me that after another set of bloods I was anaemic, and also had an abnormal thyroid result, I'm on ferrous sulphate and levothyroxine as a result. I've been off work for a month now, the dizziness, blurred vision, weakness and joint pain is still there, making me feel very anxious and low. 1st I saw a neurologist who said it sounded like chronic migraine, but then saw gastroenterologist who mentioned coeliac, I've had gastroscopy and waiting for results of that and bloods. I feel so awful, I am struggling with everyday tasks, I'm not the fun mum I usually am and can't do my usual things for my girls. I've done so much reading about coeliac, and I've have seen so much advice and support that has come from this site (lots of similarities), I am hoping as much advice as I can get. I've never joined a forum before (I'm 41!) But I feel so isolated with these symptoms. I'm due to see the specialist in a week, and I know this is going to sound crazy, but I'm scared she'll say that there's nothing she can pinpoint and that I'll go away with no resolution and continue to suffer with symptoms. I know I can go gluten-free but the reading I've been doing suggests that it's far more complex than going gluten-free? That there are so many different types of combinations of what you should and shouldn't eat that if I just did that I may not get the right combination? It seems a minefield? I just want to feel well again, get fit and get bag to normality (haven't gone gluten-free yet as still in diagnostic process) Iknow these sound like the non specific ramblings of a crazy woman, but I really will welcome any words of wisdom. Thanks guys!

 

On 2/12/2017 at 2:06 PM, Cara123 said:

I'm not really sure where to start, but I'll go with a bit of background. I've always been very active and fit (2 years ago I was doing triathlons!). I have a very stressful life (as most of us do) and I'd been putting the decline in my health down to that (increased work pressure, out from 6am-6pm, and family commitments meant I didn't have time to train anymore). Although looking back I think there have been signs that something was wrong. I had been tested for rheumatoid arthritis (was borderline on bloods but consultant said I was ok), I had nasty joint pains, and previously had h-pylori positive test with multiple visits to Dr since 2008, been on and off lansoprazole since then. I've gained almost 3 stone in 2 years!!! Things have become really bad since October, I became ridiculously exhausted, couldn't cope, couldn't focus (mentally but also blurred vision and dizziness) or think straight, had blood tests and told I needed iron. Became really ill over Christmas, went back to work (teaching A levels) was ill within one day, missed three days, dragged myself back in the following week, made it to Friday when I lost some of my vision on my way to work, I was driving on a fast road so it was scary. Lost parts of my vision 4 times that day culminating in a tremendous migraine that night (never had one before). I spoke to my Dr who advised me that after another set of bloods I was anaemic, and also had an abnormal thyroid result, I'm on ferrous sulphate and levothyroxine as a result. I've been off work for a month now, the dizziness, blurred vision, weakness and joint pain is still there, making me feel very anxious and low. 1st I saw a neurologist who said it sounded like chronic migraine, but then saw gastroenterologist who mentioned coeliac, I've had gastroscopy and waiting for results of that and bloods. I feel so awful, I am struggling with everyday tasks, I'm not the fun mum I usually am and can't do my usual things for my girls. I've done so much reading about coeliac, and I've have seen so much advice and support that has come from this site (lots of similarities), I am hoping as much advice as I can get. I've never joined a forum before (I'm 41!) But I feel so isolated with these symptoms. I'm due to see the specialist in a week, and I know this is going to sound crazy, but I'm scared she'll say that there's nothing she can pinpoint and that I'll go away with no resolution and continue to suffer with symptoms. I know I can go gluten-free but the reading I've been doing suggests that it's far more complex than going gluten-free? That there are so many different types of combinations of what you should and shouldn't eat that if I just did that I may not get the right combination? It seems a minefield? I just want to feel well again, get fit and get bag to normality (haven't gone gluten-free yet as still in diagnostic process) Iknow these sound like the non specific ramblings of a crazy woman, but I really will welcome any words of wisdom. Thanks guys!

Eliminate wheat, rye 

 

On 2/12/2017 at 2:06 PM, Cara123 said:

I'm not really sure where to start, but I'll go with a bit of background. I've always been very active and fit (2 years ago I was doing triathlons!). I have a very stressful life (as most of us do) and I'd been putting the decline in my health down to that (increased work pressure, out from 6am-6pm, and family commitments meant I didn't have time to train anymore). Although looking back I think there have been signs that something was wrong. I had been tested for rheumatoid arthritis (was borderline on bloods but consultant said I was ok), I had nasty joint pains, and previously had h-pylori positive test with multiple visits to Dr since 2008, been on and off lansoprazole since then. I've gained almost 3 stone in 2 years!!! Things have become really bad since October, I became ridiculously exhausted, couldn't cope, couldn't focus (mentally but also blurred vision and dizziness) or think straight, had blood tests and told I needed iron. Became really ill over Christmas, went back to work (teaching A levels) was ill within one day, missed three days, dragged myself back in the following week, made it to Friday when I lost some of my vision on my way to work, I was driving on a fast road so it was scary. Lost parts of my vision 4 times that day culminating in a tremendous migraine that night (never had one before). I spoke to my Dr who advised me that after another set of bloods I was anaemic, and also had an abnormal thyroid result, I'm on ferrous sulphate and levothyroxine as a result. I've been off work for a month now, the dizziness, blurred vision, weakness and joint pain is still there, making me feel very anxious and low. 1st I saw a neurologist who said it sounded like chronic migraine, but then saw gastroenterologist who mentioned coeliac, I've had gastroscopy and waiting for results of that and bloods. I feel so awful, I am struggling with everyday tasks, I'm not the fun mum I usually am and can't do my usual things for my girls. I've done so much reading about coeliac, and I've have seen so much advice and support that has come from this site (lots of similarities), I am hoping as much advice as I can get. I've never joined a forum before (I'm 41!) But I feel so isolated with these symptoms. I'm due to see the specialist in a week, and I know this is going to sound crazy, but I'm scared she'll say that there's nothing she can pinpoint and that I'll go away with no resolution and continue to suffer with symptoms. I know I can go gluten-free but the reading I've been doing suggests that it's far more complex than going gluten-free? That there are so many different types of combinations of what you should and shouldn't eat that if I just did that I may not get the right combination? It seems a minefield? I just want to feel well again, get fit and get bag to normality (haven't gone gluten-free yet as still in diagnostic process) Iknow these sound like the non specific ramblings of a crazy woman, but I really will welcome any words of wisdom. Thanks guys!

Eliminate gluten such as wheat, rye, barley and oats, soy and whey and you should feel a lot better.  I have found that lactose intolerant comes with gluten sensitivity.  Everything you eat should be gluten free.  It will take awhile to get used to it.  The first six months I thought I would starve to death, but feel so so much better.  Also, be very careful of cross contamination such as fries being cooked in the same deep fryer as breaded fish, shrimp etc..

[Cara123]

On 21/02/2017 at 1:36 PM, Jmg said:

Well done on getting through the diagnostics process Cara, now you can start to feel better! Welcome to the exclusive 'not celiac but still avoiding gluten' club

You will probably find the neuro symptoms take longer to resolve, it can be helpful to keep a journal to track yr progress there as it's easy to lose track of how you felt at any particular time. That also helps in identifying any slips in the diet. It sounds like you have a great doctor which is such an advantage, I'm jealous!

speaking of which, now is the time to go through yr cupboards and weed out any potential gluten sources, sauce bottles, crumb filled jam or butter etc. Also be wary of old scratched pans, wooden spoons, chopping boards or sieves... and eat well, check out paleo recipes etc if you need some inspiration, there's loads we can eat and some good gluten-free alternatives if you crave a treat. 

if yr like me you will find all sorts of things improving over time that y never associated with diet. I never thought diet caused my back pain, but it did... So hopefully you'll get some nice surprises as you progress on the diet. 

All the best...

 

 

 

 

Hey there, 

Sorry for the delay in responding! Thank you for welcoming me in to the 'not celiac but still avoiding gluten club' ? well, I have been gluten free for 2 weeks now I believe! I have followed all of your advice and I've been really careful with everything! It takes some thinking to make sure that you don't actually ingest some gluten! I have gone down the whole foods route to begin with, and I have found a couple of gluten free substitutes that I have reallyfound useful when I've been desperately hungry, Nairn's wholegrain crackers have been great, and I did find some Warburton's rolls and some Thins at Aldi that I liked, but I've been back a few times since and they haven't had them! But I did just see an advert for specifically gluten free products at Morrisons! (Sorry I know some of these are U.K. shops/products) apparently they have hundreds of items! So I'm going there tomorrow to check it out! So my breakfast these days mainly consists of Greek yogurt,  bluberries and honey, bananas and the crackers (and a cuppa with milk and sugar! The Dr did mention that I have to see how I go with lactose so I haven't taken that from my diet al though I don't think i have a lot of dairy) lunch has tended to be gluten free soup or thins with light spread cheese (like philly or unbranded) with prawns and leafy green stuff. Evening meal things like potato or rice with meat and veg or salad!  I am also treating myself to a twirl or a flake as i was informed they are acceptable ?.

Does that sound a good selection? Am I missing anything? 

I do think some gluten has snuck in though as I have had some rough days (e.g. migraine, blurred vision and fatigue) but that could just be withdrawal I suppose? The joint pain is still there though! But I'm on the up I believe! I feel a bit more in charge now so that's always a plus! The hardest bit was not knowing I think ☺

Thank you again  ☺

[Cara123]

On 21/02/2017 at 2:34 PM, cristiana said:

Well done, Clara! Great news that you are starting to feel better.

Great advice from Jmg above, too.  I can only say that I have seen first hand a friend struck down with serious neuro stuff improve dramatically from giving up gluten, and she like you is not a celiac. She and I still have the odd issues with minor neuro damage (and for me it's been four years since I was DX'd) but it is right when they say neuro issues take longer to resolve.  

If you don't mind my asking, it would be great if you could let us how you get on with amytriptelene. 

Hi Cristiana

Yes definitely,  I'm noticing the Neuro symptoms are the ones that seem to be clinging on mostly, but I guess time will tell with them, I do hope they go though as they're pretty unpleasant, as you said. 

I will definitely keep you up to date with the amytriptilyne, I've been on it for 6 days now I believe. I have to admit I was very nervous when starting it (I did the reading user reviews but, and the leaflet in the packet and they lost some pretty ugly side effects, after taking it at bedtime I lay there for a while wondering of if done the right thing) so far the Neuros don't seem to have settled, the gut has (but it has started to settle on giving up gluten) I seem a little more relaxed but that again could be because of stopping the gluten. I have noticed a dry mouth, which is listed as a side effect. But it's early days so I'm hopeful! i will keep you updated:)

[Cara123]

On 21/02/2017 at 9:51 PM, Bonnie F. said:

 

Eliminate wheat, rye 

 

Eliminate gluten such as wheat, rye, barley and oats, soy and whey and you should feel a lot better.  I have found that lactose intolerant comes with gluten sensitivity.  Everything you eat should be gluten free.  It will take awhile to get used to it.  The first six months I thought I would starve to death, but feel so so much better.  Also, be very careful of cross contamination such as fries being cooked in the same deep fryer as breaded fish, shrimp etc..

Hi Bonnie,

Thank you for this, yes lactose has been mentioned, what do you use to replace milk? Cheese etc? I will eliminate it to see if it helps with the Neuro symptoms, yes I definitely recognise the hungry bit! ?

[Ennis-TX]

Almond milk, Cashew milk, Coconut milk, Cheese can be replaced with vegan cheese like daiya, Follow your heart, and lisanatti brands, Yogurt can be replaced with So Delicious coconut yogurt, silk yogurt, almond dream yogurt, and kite hill makes yogurt, and cream cheese spreads, I make my own cheese using different blends I will post some recipes for cheese sauces. I will also PM some links for other products.

3 Of my Favorite Cheese sauces
Will list the ingredients for each one, they all use the exact same cooking method which will follow.
Super Sticky Mozzarella
1/2 cup of cashews soaked over night and drained
1 cup water
1 tbsp Nutritional Yeast
3 tbsp Tapioca Starch
1 tsp Apple Cider Vinegar
1/4 tsp garlic
1/2 salt

Poor Mans Mozzarella
3 tbsp coconut flour
1 cup Unsweetened Plain Cashew or Almond milk (refrigerated version)
2 1/2 tbsp Tapioca Starch
2 tbsp Nutritional Yeast
1 tsp Apple Cider Vinegar
1/4 garlic powder
1/4 salt
1/2 tsp Psyllium husk unflavored

Cheddar
1/2 cup of cashews soaked over night and drained
1 cup water
1/4 cup Nutritional Yeast
2 tbsp Tapioca Starch
1 tbsp Apple Cider Vinegar bit more if you find the bite lacking and for a sharper one
1/4 tsp garlic
1/2 salt
1 tsp Annatto
1/2 tsp Psyllium husk unflavored

1. Blend all the ingredients for you cheese flavor very well in a blender
2. In a sauce pan heat over medium high stirring CONSTANTLY for 5-10 mins. First it will start forming clumps then it will thicken up. Remove from heat and stir a bit longer til it cools to prevent burning.

Sometimes I use Lemon Juice in them in place of the vinegar, this really depends on your preference to a more citrus blend or a more bite in your cheese.

[Jmg]

2 hours ago, Cara123 said:

Does that sound a good selection? Am I missing anything? 

Sounds great. Consider joining coeliacs UK, they produce an annual guide book with listings from all the major supermarkets which is also available via a mobile app. It would be worth it for you, at least for the one year whilst you're getting to grips with the diet. 

Cristiana and I have been sharing some UK treats here: 

 you can also have crunchie, wispa, daim bars, toblerone, quality street, after 8s and more

Aldi do some nice moser roth dark chocolate which is safe. 

magnum ice cream bars are ok as is cartedor vanilla ice cream.

The big 4 supermarkets have good free from sections. Aldi and Lidl have less dedicated gluten-free but some of their foods do appear in the coeliacs guide even if they don't say gluten-free on them and they're obviously much cheaper than the branded gluten-free stuff. 

2 hours ago, Cara123 said:

I do think some gluten has snuck in though as I have had some rough days (e.g. migraine, blurred vision and fatigue) but that could just be withdrawal I suppose?

Yes, there's a temptation to always think it must be gluten, but the process of removing it is not guaranteed to be straightforward and you do get good and bad days. So do as much as you can in removing it from your diet but also try not to stress too much and just focus on eating well and enjoying all the good food that you can still have.

 

[Cara123]

10 hours ago, Jmg said:

Sounds great. Consider joining coeliacs UK, they produce an annual guide book with listings from all the major supermarkets which is also available via a mobile app. It would be worth it for you, at least for the one year whilst you're getting to grips with the diet. 

Cristiana and I have been sharing some UK treats here: 

 you can also have crunchie, wispa, daim bars, toblerone, quality street, after 8s and more

Aldi do some nice moser roth dark chocolate which is safe. 

magnum ice cream bars are ok as is cartedor vanilla ice cream.

The big 4 supermarkets have good free from sections. Aldi and Lidl have less dedicated gluten-free but some of their foods do appear in the coeliacs guide even if they don't say gluten-free on them and they're obviously much cheaper than the branded gluten-free stuff. 

Yes, there's a temptation to always think it must be gluten, but the process of removing it is not guaranteed to be straightforward and you do get good and bad days. So do as much as you can in removing it from your diet but also try not to stress too much and just focus on eating well and enjoying all the good food that you can still have.

 

Thank you ☺ this is great! I will join coeliacs UK today! That book would be great! 

Yes the good and bad days are a bit of an issue, I had a really good day yesterday, it's the best I've felt in what feels like forever! Like most people I've been reading posts from in here, it took a while to find out what was causing the multitude of (what seemed like unrelated) symptoms, but early in January I had the vision loss etc and was knocked sideways, I've been off work since, I've been in my career for 20 years and I've never missed so much work that gives me one of my main concerns that is the good days and bad days, because I teach 16+ (age group) and around 25 per class, I am concerned about the bad days when I return to work, how does that work? Because when the symptoms are at their worst I can't focus at all, mentally and visually? I know there's no quick fix, and my boss has been really good and understanding, I'm not sure that they realise the amount of time it can take for your body to recover during the process of eliminating gluten (and from what I'm reading some symptoms don't go because of the damage caused?)

Two slightly unrelated questions how do I do recommendations on here? (And what do they mean? ? I'm doing this on my phone lol and I'm not good at it!) Also how do you just quite small bits from messages as I keep quoting the whole messages! ? I need to get better at all this!!! ?

[Cara123]

11 hours ago, Ennis_TX said:

Almond milk, Cashew milk, Coconut milk, Cheese can be replaced with vegan cheese like daiya, Follow your heart, and lisanatti brands, Yogurt can be replaced with So Delicious coconut yogurt, silk yogurt, almond dream yogurt, and kite hill makes yogurt, and cream cheese spreads, I make my own cheese using different blends I will post some recipes for cheese sauces. I will also PM some links for other products.

3 Of my Favorite Cheese sauces
Will list the ingredients for each one, they all use the exact same cooking method which will follow.
Super Sticky Mozzarella
1/2 cup of cashews soaked over night and drained
1 cup water
1 tbsp Nutritional Yeast
3 tbsp Tapioca Starch
1 tsp Apple Cider Vinegar
1/4 tsp garlic
1/2 salt

Poor Mans Mozzarella
3 tbsp coconut flour
1 cup Unsweetened Plain Cashew or Almond milk (refrigerated version)
2 1/2 tbsp Tapioca Starch
2 tbsp Nutritional Yeast
1 tsp Apple Cider Vinegar
1/4 garlic powder
1/4 salt
1/2 tsp Psyllium husk unflavored

Cheddar
1/2 cup of cashews soaked over night and drained
1 cup water
1/4 cup Nutritional Yeast
2 tbsp Tapioca Starch
1 tbsp Apple Cider Vinegar bit more if you find the bite lacking and for a sharper one
1/4 tsp garlic
1/2 salt
1 tsp Annatto
1/2 tsp Psyllium husk unflavored

1. Blend all the ingredients for you cheese flavor very well in a blender
2. In a sauce pan heat over medium high stirring CONSTANTLY for 5-10 mins. First it will start forming clumps then it will thicken up. Remove from heat and stir a bit longer til it cools to prevent burning.

Sometimes I use Lemon Juice in them in place of the vinegar, this really depends on your preference to a more citrus blend or a more bite in your cheese.

Ohh wow this is amazing thank you ☺ (I will seek out the ingredients for these today!) I'm not the best cook and I'm ashamed to say I've never soaked anything over night! I have tried some gluten free recipes that have taken me out of my cooking comfort zone in the past fortnight, so I'm working up to this! I am going to visit Morrison's supermarket today to see if I can get some of these ingredients! I think my concern is not liking the difference in taste between the milk and dairy I'm used to and the alternatives, although I am adapting to cutting out gluten products better than I could ever have imagined so fingers crossed so maybe my concerns are unwarranted ☺ (my one big gluten free rejection though has been genius bread .. ugh! Left me with a dry mouth and sense of burning for 2 days, stores own brands have been better for me so far ☺ (and I've even limited the intake of gluten free breads in favour of whole foods! And once they get my levothyroxine dose correct I'm hoping I'll lose some of the weight gained!)

[Jmg]

On 3/2/2017 at 11:01 AM, Cara123 said:

wo slightly unrelated questions how do I do recommendations on here? (And what do they mean?

It's the equivalent of a 'like' on facebook. You click the up arrow at the bottom right of a post to register a recommendation.  It doesn't do anything as such other than send a notification to the author, but it's a nice way to either recognise when someone has made an effort to help or to endorse a point that someone has made.

On 3/2/2017 at 11:01 AM, Cara123 said:

Also how do you just quite small bits from messages as I keep quoting the whole messages!

This is much easier on a desktop as you simply drag the mouse over the text you want and then click the 'quote this' button which appears above. You can still do this on mobile, but it's more fiddly...

The longer winded way is to quote the full post then edit down to the passage you want. Again, seconds with a mouse, longer messing around on a phone touchscreen!