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Am I Re-Glutening Myself With Something Every Day Or Is This A Super Long Glutening?
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I'm figuring out the hard way quickly that I am among the "super sensitives." Over the last few months a few "GLUTEN FREE" products have got me (ones I have researched here and found only the super sensitives react to) and I've had to return to eating barely anything processed. I've basically been glutened from one thing or another for 2.5 months now and am getting impatient for relief. Every time I start to feel somewhat over a glutening, I slip up again. (oh, the shame spiral that ensues) (I know, I know, I'm still learning)

The last week has been particularly rough. I'm not sure if it's because of all the accumulation of slip-ups or if there could be something I'm missing and I'm getting myself every day. How do you know? At the exact same time every night (10:00) my stomach starts doing flips like I just consumed something with gluten and I wake up the next day with the typical BM's and flu-like body aches I get day one of a glutening. Usually when I've been glutened those last 3-4 days and the bloating persists an additional 3-4 days then I'm over it. How do I know if this is just my body still going wacky from the last slip-up or if I'm re-getting myself with something every night?

Over the last week I've been having avocados & [Planters] nuts for breakfast, brown rice & lentils for lunch, hummus and carrots for snacks, spaghetti squash and veggies for dinner. All of the packaged rice/beans are brands I have verified and used without problem before, so I've turned my paranoia towards kissing my non-gluten-free boyfriend. He's out of town now, though, and my tummy is still rumbling every night so there goes that theory.

Ug. I hate this! And to top it off I'm dying for a glass of wine. The BF gets back in town tomorrow (hooray!) and I got laid off from my job last week (boo!) and a glass of wine would probably be incredibly stupid right now, correct???

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I'd take a closer look at the lentils. They have a really high cc incidence. I've been glutened badly by them. I eat other beans instead now. It's too bad because I love lentils, but I haven't worked myself up to trying a "safe" brand. No matter what the brand you always need to wash them thoroughly and pick through them to find any hidden wheat kernels.

If you search old posts on this forum you should be able to find more information about it.

Here's a video about it someone posted a while back: Gluten CC in Lentils

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I I think for many people nuts are very hard to digest, I can't have cashews or pistachios----- some have trouble with legumes... Could you try a very basic elimination plan to see how you feel? Also do a recheck of all items in the house ie: pet food, scratches or things that were used for gluten items. All HBA items, household cleaners ... it may come down to using only items that are produced in a pure no gluten enviroment...

Feel better soon

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oops, forgot about the wine. I can't drink wine that contains sulphites, gets me every time. The good news is there are wines like Frey Vineyards & many more that don't have sulphites...Flavored coffees, & teas may have gluten...

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I think one thing people miss early on is that not every reaction is gluten or CC. Lots of us have multiple food intolerances or just plain old weak stomachs that take time to resolve.

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I'd take a closer look at the lentils. They have a really high cc incidence. I've been glutened badly by them. I eat other beans instead now. It's too bad because I love lentils, but I haven't worked myself up to trying a "safe" brand. No matter what the brand you always need to wash them thoroughly and pick through them to find any hidden wheat kernels.

If you search old posts on this forum you should be able to find more information about it.

Here's a video about it someone posted a while back: Gluten CC in Lentils

Dang, like quinoa? That got me good a few months ago. The only thing is that I've been having this particular brand of lentils all year with no problems. (but I suppose as I'm getting more sensitive maybe I'm only just now reacting to some trace amount they may have? ugh.)

There have also been days this last week that I haven't had any lentils and my symptoms were the same.. so I'm doubtful that's it, but I will definitely investigate further. Thanks for the info!!

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I I think for many people nuts are very hard to digest, I can't have cashews or pistachios----- some have trouble with legumes... Could you try a very basic elimination plan to see how you feel? Also do a recheck of all items in the house ie: pet food, scratches or things that were used for gluten items. All HBA items, household cleaners ... it may come down to using only items that are produced in a pure no gluten enviroment...

Feel better soon

I just finished an elimination diet (soy, dairy, coffee, spinach and kale were culprits) but I snacked on nuts the whole time as they were allowed on the particular elim diet I followed. I guess I could try cutting them out for a week to see. And I haven't checked cat food.. I rarely get any on me when feeding my critters but couldn't hurt to look into.

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What I found when I removed all gluten was that several other things affected me with all of the similar symptoms.

That has led me down a road of discovering many of the things that provoke symptoms are "histimines".

The emotional roller coaster is the worst.

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What I found when I removed all gluten was that several other things affected me with all of the similar symptoms.

That has led me down a road of discovering many of the things that provoke symptoms are "histimines".

The emotional roller coaster is the worst.

What other things affect you Ron? That's exactly what I'm going through at the moment, and the fretting about it, is only making me worse? Any advice please?

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I'm figuring out the hard way quickly that I am among the "super sensitives." Over the last few months a few "GLUTEN FREE" products have got me (ones I have researched here and found only the super sensitives react to) and I've had to return to eating barely anything processed. I've basically been glutened from one thing or another for 2.5 months now and am getting impatient for relief. Every time I start to feel somewhat over a glutening, I slip up again. (oh, the shame spiral that ensues) (I know, I know, I'm still learning)

The last week has been particularly rough. I'm not sure if it's because of all the accumulation of slip-ups or if there could be something I'm missing and I'm getting myself every day. How do you know? At the exact same time every night (10:00) my stomach starts doing flips like I just consumed something with gluten and I wake up the next day with the typical BM's and flu-like body aches I get day one of a glutening. Usually when I've been glutened those last 3-4 days and the bloating persists an additional 3-4 days then I'm over it. How do I know if this is just my body still going wacky from the last slip-up or if I'm re-getting myself with something every night?

Over the last week I've been having avocados & [Planters] nuts for breakfast, brown rice & lentils for lunch, hummus and carrots for snacks, spaghetti squash and veggies for dinner. All of the packaged rice/beans are brands I have verified and used without problem before, so I've turned my paranoia towards kissing my non-gluten-free boyfriend. He's out of town now, though, and my tummy is still rumbling every night so there goes that theory.

Ug. I hate this! And to top it off I'm dying for a glass of wine. The BF gets back in town tomorrow (hooray!) and I got laid off from my job last week (boo!) and a glass of wine would probably be incredibly stupid right now, correct???

I seem to be going through the same thing as you and I know it gets you down after a while. I think you could be super sensitive like you say. I rang Coeliac UK yesterday here in Britain it's a charity that helps people with the disease. They suggested I spoke to my dietitian about a FODMAP diet. Wonder whether this would help you too? I ended up Googling it to find out what was on the list as I wasn't familiar with FODMAPs although looking back on posts on this forum I realise others here know all about it.

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I don't know about your cat's food, but I could see it being a problem if it has gluten. The transmission would be: cat eats food, (containing gluten), cat cleans himself with his tongue (or licks you), you pet cat, you eat food. So it isn't just about getting the food on you when you put the food out. I would also suggest another elimination diet as it could be some other food that is causing your problems.

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I seem to be going through the same thing as you and I know it gets you down after a while. I think you could be super sensitive like you say. I rang Coeliac UK yesterday here in Britain it's a charity that helps people with the disease. They suggested I spoke to my dietitian about a FODMAP diet. Wonder whether this would help you too? I ended up Googling it to find out what was on the list as I wasn't familiar with FODMAPs although looking back on posts on this forum I realise others here know all about it.

That diet sounds good but it appears to be heavily reliant on fruit and dairy and I can't have any form of sugar because I also have Lyme Disease. So far with the Celiac I've had to eliminate dairy, soy, eggs, coffee, spinach, kale (coffee, spinach and kale I react BADLY to because I guess I was having them too frequently? I used to have a cup of coffee and a green shake for breakfast every morning), and now it looks like I can add lentils/beans to that list. I did end up having lentils last night and most definitely reacted to them. I'm in ridic pain this morning. Dangit!

The other limiting factor is that I've been vegetarian for 12 years. I REALLY do not want to go back to eating meat but as my options keep getting smaller and smaller I'm worried I may have to at least add a little fish back in occasionally (God, I hate fish). Or I've also been considering looking into the raw diet.

Ug.

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That diet sounds good but it appears to be heavily reliant on fruit and dairy and I can't have any form of sugar because I also have Lyme Disease. So far with the Celiac I've had to eliminate dairy, soy, eggs, coffee, spinach, kale (coffee, spinach and kale I react BADLY to because I guess I was having them too frequently? I used to have a cup of coffee and a green shake for breakfast every morning), and now it looks like I can add lentils/beans to that list. I did end up having lentils last night and most definitely reacted to them. I'm in ridic pain this morning. Dangit!

The other limiting factor is that I've been vegetarian for 12 years. I REALLY do not want to go back to eating meat but as my options keep getting smaller and smaller I'm worried I may have to at least add a little fish back in occasionally (God, I hate fish). Or I've also been considering looking into the raw diet.

Ug.

Regarding the meat, I didn't eat much at all and my doctor told me to eat more of it as I was severely anaemic and needed iron tablets for ages, my ferritin levels were about as low as they can get. I did eat more meat but I've encountered other problems causing a lot more reflux and GERD (I have a hiatus hernia too). It must be difficult if you don't eat any meat as I know that a lot of vegetarian options included the dreaded wheat and gluten which is not an option for us. I have heard that once you've been vegetarian for a long time, your body finds it harder to adjust to tolerating meat - don't know why though. (I used to be veggie and meat doesn't seem to like me :( )

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What other things affect you Ron? That's exactly what I'm going through at the moment, and the fretting about it, is only making me worse? Any advice please?

Flower,

What I found with my own body, once I was clean of gluten I felt amazing. That was short lived. I next found that potatoes gave me all of the symptoms of gluten. Removing them helped, but a few days later I was coming up with symptoms. I removed cheese, that seemed to help marginally. Then I removed my beloved frothy latte and I again started getting better.

Right now I'm eating only a few root vegetables and meat. This is all I can eat to maintain any kind of good feeling. My biggest complaint is drinks - many drinks affect me such as soda pops and gatorade. I am even a little suspicious of cranberry juice if I have more that just a few ounces. Luckily plain coffee is still working for me.

I don't know if this helps you at all, but it kind of confirms what you are going through I guess.

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Can you try split green peas instead of the lentils? I suggest you look at all your vitamins and meds also, and maybe eliminate them for a bit to see if anything changes. It does sound like something you are taking in every day is affecting you. Quinoa needs to be very well washed before cooking as it has saponins (soaps) in the shell that can make people sick.

Meats can help by supplying proteins that our bodies need to heal. Mostly they are well tolerated but some people do have problems with red meat. If you are losing weight due to your diet restrictions it makes sense to eat some meat to get back in the healing mode.

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Flower,

What I found with my own body, once I was clean of gluten I felt amazing. That was short lived. I next found that potatoes gave me all of the symptoms of gluten. Removing them helped, but a few days later I was coming up with symptoms. I removed cheese, that seemed to help marginally. Then I removed my beloved frothy latte and I again started getting better.

Right now I'm eating only a few root vegetables and meat. This is all I can eat to maintain any kind of good feeling. My biggest complaint is drinks - many drinks affect me such as soda pops and gatorade. I am even a little suspicious of cranberry juice if I have more that just a few ounces. Luckily plain coffee is still working for me.

I don't know if this helps you at all, but it kind of confirms what you are going through I guess.

Thank you, it confirms the fact that once we begin our celiac diet, other intolerances come to the surface. I'm still playing detective at the moment and keeping a food diary until the culprit is exposed. I was disappointed that after only a short time on the gluten-free diet that I started to feel ill again, as I was pinning my hopes on a quicker recovery. Having seen what everyone else is going through, I realise that things are not that simple.

Do you think you will have to cut these other items out indefinitely? Or will you try to introduce potato etc., when your system has settled down? As I've heard of people reintroducing things they were intolerant to after they've omitted them for a while - as long as it's done in moderation of course.

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I had to go without tomatos for a year, and was then able to successfully reintroduce them. It does happen. Keep in mind that it may take a long time, and may not happen at all, too.

It definitely sounds like you're having a problem with the lentils, and a doublecheck on all your supplements and personal care products are in order. Also, don't kiss the man when he's been eating gluten!

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Flower,

Yes, I will hope to one day be tolerant of more things.

Life can only be understood backwards, unfortunately it is lived in forward....

I think that what may have happened when I took all things gluten from my diet, I ended up overloading myself on other things - like the lectins (GottaSki has been a great educator for me as her experience has been similar to what I'm experiencing).

Right at first, eggs and cheese and milk and potatoes were fine for me. It took almost a month before I started reacting to them.

The first few times I reacted to them, I was dining out and blaming CC for the reaction.

The diary is key. It lets you play back your last ingestions and single out possible culprits.

It is important to figure out what your core food can be. You may have to narrow that core as you go.

For me, I don't know how I'll go about bringing things back. This is a challenge I didn't know I would have to be up for a few months ago.

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what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.

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I am super sensitive. It took me 4 years or so to figure out a diet that doesn't make me sick. I started working part time again after that! Now I am going to try to transition to full time.

How I did it, and still do it is by keeping track of my symptoms and keeping track of what I eat. My sensitivity levels increased dramatically as time went on. I went through several sessions of eliminating things one at a time and still getting sicker as I kept guessing wrong. The worst thing to do at times like these is splurge on something questionable. The temptation is great though, and I did it a few times. I also went for countless tests to find out if I was missing something. So far it is just tiny amounts of gluten and oats. Anything that I have been able to grow myself, I have been able to eat, even when that same fruit, grain or vegetable made me sick from other sources. You need to keep track of not only what you eat, but where it comes from. There is potential for contamination in many areas. You also need to keep track of contact with gluten eaters and contact with things that gluten eaters have come into contact with. Also, trips to places where there might be airborne gluten, like a bakery.

There have been many occasions where something which had been safe became unsafe. People change how they do things and don't put those details online, or tell you about them.

You need a good idea of what your response time and symptoms are. It takes time, but if you are patient, it can happen.

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Could be leaky gut syndrome which is often a result of Celiac. The gut gets so inflamed and irritated that food particles pass through that shouldn't - this sets off an autoimmune reaction and symptoms.

I have really struggled with this- If i get accidentally glutened my gut gets damaged and then I react for quite a while (even to Gluten-Free food) until I get my gut inflamation down.

Just my 2 cents and I could be wrong but this is what I have experienced. i didn't start feeling really good on the Gluten-Free diet until I addressed the leaky gut.

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Can you try split green peas instead of the lentils? I suggest you look at all your vitamins and meds also, and maybe eliminate them for a bit to see if anything changes. It does sound like something you are taking in every day is affecting you. Quinoa needs to be very well washed before cooking as it has saponins (soaps) in the shell that can make people sick.

Meats can help by supplying proteins that our bodies need to heal. Mostly they are well tolerated but some people do have problems with red meat. If you are losing weight due to your diet restrictions it makes sense to eat some meat to get back in the healing mode.

I'm a little suspicious that legumes might be a part of the problem. I can now verify that lentils were getting me for sure and I'm going to cut out ALL legumes for a week to see what happens (so no split peas..). I am losing a lot of weight so starting to seriously consider adding fish back in. (I REALLY do NOT like the way it tastes, but my BF is from the coast and swears he can cook it well enough to get me on board ;) )

I had to go without tomatos for a year, and was then able to successfully reintroduce them. It does happen. Keep in mind that it may take a long time, and may not happen at all, too.

It definitely sounds like you're having a problem with the lentils, and a doublecheck on all your supplements and personal care products are in order. Also, don't kiss the man when he's been eating gluten!

Thanks for reminding me of supplements. I have to take around 100 pills a day for my Lyme treatment and maybe I missed something there. I've combed through them multiple times but once more couldn't hurt. I mostly use the Vitamin Shoppe brand for my supplements because they claim to be hypoallergenic, but I should follow up and confirm the manufacturing as well as ingredients are.

And the BF has been really good about not kissing me now unless he's brushed his teeth! ;)

what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.

I don't eat too many tomatoes but I will be sure to investigate those as well, know they can be a common irritant. Thanks!

I am super sensitive. It took me 4 years or so to figure out a diet that doesn't make me sick. I started working part time again after that! Now I am going to try to transition to full time.

How I did it, and still do it is by keeping track of my symptoms and keeping track of what I eat. My sensitivity levels increased dramatically as time went on. I went through several sessions of eliminating things one at a time and still getting sicker as I kept guessing wrong. The worst thing to do at times like these is splurge on something questionable. The temptation is great though, and I did it a few times. I also went for countless tests to find out if I was missing something. So far it is just tiny amounts of gluten and oats. Anything that I have been able to grow myself, I have been able to eat, even when that same fruit, grain or vegetable made me sick from other sources. You need to keep track of not only what you eat, but where it comes from. There is potential for contamination in many areas. You also need to keep track of contact with gluten eaters and contact with things that gluten eaters have come into contact with. Also, trips to places where there might be airborne gluten, like a bakery.

There have been many occasions where something which had been safe became unsafe. People change how they do things and don't put those details online, or tell you about them.

You need a good idea of what your response time and symptoms are. It takes time, but if you are patient, it can happen.

Oh gosh, 4 years??? :/ I've decided over the next couple of weeks to just do steamed veggies, baked potatoes, etc etc, then HOPEFULLY my symptoms will finally clear and I can add nuts back in/see how I react, then beans. I'm really hoping this was all just lentils (I ate them almost every day, so it would make sense) but am doing like everyone suggests and writing it all down in my food diary and investigating all possibilities. I have this feeling I might be like you and need to start a garden..

This was very helpful, dilettantesteph; thank you!

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Thanks for reminding me of supplements. I have to take around 100 pills a day for my Lyme treatment and maybe I missed something there.

Have you talked to the doctor about the meds you are taking for Lyme? I wonder if one or more of those meds might be the issue rather than gluten or another intolerance.

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Flower,

Yes, I will hope to one day be tolerant of more things.

Life can only be understood backwards, unfortunately it is lived in forward....

I think that what may have happened when I took all things gluten from my diet, I ended up overloading myself on other things - like the lectins (GottaSki has been a great educator for me as her experience has been similar to what I'm experiencing).

Right at first, eggs and cheese and milk and potatoes were fine for me. It took almost a month before I started reacting to them.

The first few times I reacted to them, I was dining out and blaming CC for the reaction.

The diary is key. It lets you play back your last ingestions and single out possible culprits.

It is important to figure out what your core food can be. You may have to narrow that core as you go.

For me, I don't know how I'll go about bringing things back. This is a challenge I didn't know I would have to be up for a few months ago.

Yes I agree about the diary. I'm making notes on symptoms as I go.

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what about toothpastes and whatnot, did you verify those?

As for the food, after i went gluten free i became allergic to tomatoes (not surprising though, they had been giving me stomach issues, then it exploded into something else).

I can no longer handle fatty foods well (like bacon for example) as it gives me a belly ache and causes my GERD to react badly.

When i decide to splerg and eat my alfredo goodness, i load it up with a lot of spinage, chicken, and noodles and eat about a serving size. If i eat above that, generally, i'll get a belly ache.

I had to cut my gluten free oats out because they were doing the same. I've yet to had the urge to retry them again.

I don't know whether you can get it across the pond, but I use Kingfisher gluten free toothpaste,mit's the only one I dare use as I haven't found any other gluten free toothpaste.

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    • I don't do grieving, bad enough for something that's been taken away in the past but to know my future is pretty much gone now just feels too much. The only time I've forgot about the unfolding nightmare was during my hour or so of sport so need to cling onto that at the moment or I fear going to a very dark place indeed. Yup that SCD site is terrifying, still can't make up my mind if they're giving out useful information to genuinely help people or using scare tactics to sell their books etc. 
    • I agree with all the advice you have been given.  It is excellent!   I just want to add that things will get better.  There is a huge grieving process to go through.  Do not fight it.  You have a right to grieve as your health and lifestyle will change, but you will adapt!  Exercise gently until you feel a bit better.  There is plenty of time to exercise hard later.  Taken this advice from a gal who just rode 40 miles (no biggie you say) this morning  on her bike through the Santa Ana winds (better known as the Devil's winds!).  But I am three years into my recovery.  I took it easy the first six months because I was anemic.  I teach few exercise classes, bike, swim and run and I am in my 50's.   The SCD website?  It can scare the (bleep) out of you.  There was one point that I took from the site and that was to stick to whole nourishing foods.  No rocket science -- just common sense.    
    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... The doctors didn't diagnose this at all, Google did. If I trusted in the health professionals I'd be blaming the symptoms all on stress and having counselling for it whilst the fire raged on inside me due to a clinical condition they'd missed. Just glad one of doctors agreed to run the test on second time of asking to keep me quiet as much as anything. Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. In the nicest possible way the vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually. With the biopsy and gluten from what I read the villi take a long time to heal up so they'd still see that. With the blood test result as definitive as it was surely the disease is pretty much confirmed? How can it heal enough for non eating gluten to throw a biopsy result yet on the flip side take over a year to heal (that sounds like the best case scenario time-wise from what I've read). Not suggesting anyone is wrong for one second but need to understand how that works with what's going on inside to make any sense of this situation.
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