So… I'm a coeliac

[OrangesAndMelons]

And found out by post. Joy. But there's so little detail — all the letter says is that the biopsies show "changes that confirm the diagnosis of coeliac disease" and that this can be "managed simply by making changes to the diet". I've been given a date for an educational session, and will apparently be getting an appointment with a coeliac dietitian and a gastroenterologist who specialises in coeliac disease.

Slightly in denial right now… when will the reality hit me? Maybe when I switch to a gluten-free diet? (I'm not going to do it straight away, I'm going to wait until I go home for the summer — I'm a student and have exams very soon.)

[cyclinglady]

I am so sorry.  I know you were hoping for a negative result.  It sounds like your GI had an older version of the scope and could not visually see the damage.  That is what happened to me.  

There is good news.  On the gluten free diet, you will feel better.  Little things that you just ignored or put up with will go away.  You will have more energy.  

Know that you will go through a grieving process.  That is normal and okay.  

I understand that you have exams coming up (my daughter just finished her exams).  I agree that is no time to try to learn the gluten-free diet well if you are able to function on a gluten diet.  Once you meet with your dietician, you probably feel much better.  Take advantage of that support.  I had no issues starting the diet.  It gets so much easier over time.  

I wish you well and good luck on your exams.  Get plenty of sleep!  

[OrangesAndMelons]

3 minutes ago, cyclinglady said:

I am so sorry.  I know you were hoping for a negative result.  It sounds like your GI had an older version of the scope and could not visually see the damage.  That is what happened to me.  

There is good news.  On the gluten free diet, you will feel better.  Little things that you just ignored or put up with will go away.  You will have more energy.  

Know that you will go through a grieving process.  That is normal and okay.  

I understand that you have exams coming up (my daughter just finished her exams).  I agree that is no time to try to learn the gluten-free diet well if you are able to function on a gluten diet.  Once you meet with your dietician, you probably feel much better.  Take advantage of that support.  I had no issues starting the diet.  It gets so much easier over time.  

I wish you well and good luck on your exams.  Get plenty of sleep!  

Thank you for the good luck wishes!

I guess maybe the damage could've been at too micro a level to see, too, perhaps? I don't know what scope they used; I was a bit out of it at the time (midazolam — though it wasn't as heavily sedating as I'd hoped). And it was a different gastro who carried out the endoscopy, not the one I'll be seeing. I was a bit concerned because they only took 4 samples, which I know is at the lower end of what's recommended, but it seems it was enough to find damage… anyway, my whole damn family is getting tested now too ? (blood, not endoscopy, obviously…)

I think I'm pretty lucky with the hospital I'm with, anyway; they have what's supposed to be a really good coeliac clinic. But I still really don't want this… part of me feels like, I have a shortened life expectancy anyway because of other health stuff, so is it *really* worth the effort/cost/missing out involved in a gluten-free diet… ah well.

Things suck sometimes.

[Ennis-TX]

The newbie 101 section covers a lot about the cleanout, what to replace, what you need to throw away, etc. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/

For now, there are some measures you can take in to simplify making quick gluten-free meals. See about getting Nordicware microwave cookware, they have omelet makers, rice cookers, grill plates with splatter covers, steam trays, etc. You can make simple meals with naturally gluten-free foods and some certified ones using these and not worry about having a whole kitchen set up. Keep a mini fridge and your own area of Glutenfree foods. 
Laying out butcher paper/freezer paper works well for providing a safe prep area also.  Foil lining baking dishes for sheet pan meals, casseroles, 

Many "other" health issues can resolve as the gluten-free diet, and the longer you eat gluten, the more secondary damage and other complications can evolve including violent reactions to other foods.  I was not diagnosed soon enough, ended up with ataxia issues brain/nerve damage, allergies to corn, whey. Ulcerative Colitis and the ataxia did something to my pancreas so I have to take pig pancreas enzymes and digestive ones to eat food, and avoid all sugars or carbs so I am unable to eat grains, fruit, sugar, starches etc.  
Other members have different NO foods, many regulars will have it in their post signature. We have seen others develop complications also from not following the diet. 

But not all is lost, I have dedicated my life to cooking paleo, and low carb and finding ways to make all my favorites. I even compiled a list of safe alternatives for others and sell my baked goods and food at markets. IT is not the end just a new beginning of a healthier you.

 

[OrangesAndMelons]

33 minutes ago, Ennis_TX said:

The newbie 101 section covers a lot about the cleanout, what to replace, what you need to throw away, etc. 
https://www.celiac.com/forums/topic/91878-newbie-info-101/

For now, there are some measures you can take in to simplify making quick gluten-free meals. See about getting Nordicware microwave cookware, they have omelet makers, rice cookers, grill plates with splatter covers, steam trays, etc. You can make simple meals with naturally gluten-free foods and some certified ones using these and not worry about having a whole kitchen set up. Keep a mini fridge and your own area of Glutenfree foods. 
Laying out butcher paper/freezer paper works well for providing a safe prep area also.  Foil lining baking dishes for sheet pan meals, casseroles, 

Many "other" health issues can resolve as the gluten-free diet, and the longer you eat gluten, the more secondary damage and other complications can evolve including violent reactions to other foods.  I was not diagnosed soon enough, ended up with ataxia issues brain/nerve damage, allergies to corn, whey. Ulcerative Colitis and the ataxia did something to my pancreas so I have to take pig pancreas enzymes and digestive ones to eat food, and avoid all sugars or carbs so I am unable to eat grains, fruit, sugar, starches etc.  
Other members have different NO foods, many regulars will have it in their post signature. We have seen others develop complications also from not following the diet. 

But not all is lost, I have dedicated my life to cooking paleo, and low carb and finding ways to make all my favorites. I even compiled a list of safe alternatives for others and sell my baked goods and food at markets. IT is not the end just a new beginning of a healthier you.

 

Thank you — I'll check out that topic before I go home. I don't own a microwave there unfortunately! I'll be staying on normal food for now.

I'm kind of fed up of new beginnings ? I keep getting diagnosed with s$#&! Since 2014 I've gained diagnoses of diabetes, ASD, bipolar disorder, and now coeliac disease. And also gone back to school and started a degree.

Hang on a minute, why did it insert a load of s$#& in the middle of s$#&? Am I not allowed to type s$#& — on a board for people with digestive problems?! s$#& is pretty much central ?

[OrangesAndMelons]

Will it accept shite?

Hooray

[Ennis-TX]

7 minutes ago, OrangesAndMelons said:

Thank you — I'll check out that topic before I go home. I don't own a microwave there unfortunately! I'll be staying on , food for now.

I'm kind of fed up of new beginnings ? I keep getting diagnosed with s$#&! Since 2014 I've gained diagnoses of diabetes, ASD, bipolar disorder, and now coeliac disease. And also gone back to school and started a degree.

Hang on a minute, why did it insert a load of s$#& in the middle of s$#&? Am I not allowed to type s$#& — on a board for people with digestive problems?! s$#& is pretty much central ?

3

Well we share many issues.....I am an Aspie (Asperger's form of Autism), Glucose issues myself, bipolar, I also got the ADHD label as a kid. The bipolar is nowhere near as bad, the manic episodes and freaking out are minimal concerns now, the Autism stuff...you just learn to cope over years of trial and error but again many of the quirks I had gone away on the GFD. >.< The glucose thing for I can treat with a keto based diet like many T2 diabetics can bit blessed there.
PS I have created recipes for most cookies, scones, cakes, bread, etc. Keep some in a blog here.

 

[OrangesAndMelons]

5 hours ago, Ennis_TX said:

Well we share many issues.....I am an Aspie (Asperger's form of Autism), Glucose issues myself, bipolar, I also got the ADHD label as a kid. The bipolar is nowhere near as bad, the manic episodes and freaking out are minimal concerns now, the Autism stuff...you just learn to cope over years of trial and error but again many of the quirks I had gone away on the GFD. >.< The glucose thing for I can treat with a keto based diet like many T2 diabetics can bit blessed there.
PS I have created recipes for most cookies, scones, cakes, bread, etc. Keep some in a blog here.

 

I'm not convinced it will have any effect on the ASD or bipolar disorder; those are both really strongly hereditary in my family and don't seem to link up with any digestive issues… anyway. I guess I'll see. For now, I have a deadline to finish all my sugar free biscuits ? (not too fast or I'll be on the loo all day and night… damn those polyols!)

[Ennis-TX]

1 hour ago, OrangesAndMelons said:

I'm not convinced it will have any effect on the ASD or bipolar disorder; those are both really strongly hereditary in my family and don't seem to link up with any digestive issues… anyway. I guess I'll see. For now, I have a deadline to finish all my sugar free biscuits ? (not too fast or I'll be on the loo all day and night… damn those polyols!)

The ASD, Bipolar, celiac, etc are all genetic. But damaged intestines can cause deficiencies that make mental issues worse. The genes also cause certain detox issues, so we are more prone to cumulative exposures to neurotoxins and metals. Anyway, that is a debate to stay away from nowadays.

Erythritol is easier on the gut and has mostly no laxative effect compared to sorbitol, maltitol, xylitol. Some times using less and upping the stevia or monk fruit extract works depending on base flavor. Best to use it in biscuits/cookies. I like doing simple Amaretti Bases with the Swerve Brand here in the states. It is the main base and seller at markets I sell at. I think I posted the recipe here a while back, I recently redid it with hazelnut flour and a coating of cocoa and powdered confectioners erythritol on the outside for a bit of crisp outer cocoa shell and a sweet hazelnut center. 
 

[GFinDC]

Hi Oranges and Melons,

While going gluten-free may not resolve all your brain symptoms, it may help.  In some people celiac can attack the brain cells causing a condition called gluten ataxia.  Those people sometimes have UBO's (unidentified bright objects) on an MRI of the brain.

The  other gotcha is lack of certain nutrients.  Our brains are over 90% fat and they need fats to operate.  Celiac can impair the ability to absorb fats.  That's a bad thing for a brain.  We are all literally fat-heads!

The malabsorption typical of untreated celiac disease can impair absorption of B-vitamins which are important for nerve cells to function correctly.  Guess what else our fat-heads are made of?  That's right, nerve cells!  So it's a 2 fisted whammy on our brain function.

Anyway, they say that nerves are slow to heal.  So don't expect immediate improvements.  Getting used to eating gluten-free is a bit of a challenge for most people.  It is even possible to make mistakes and eat things with gluten in them at first!  But try to keep the mistakes (glutenings) to a minimum.  Every time our immune system is triggered to respond by gluten, it will launch an immune attack.  That immune attack can go on for weeks to months, depending on the person.  So every mistake can set us back for quite a while.

Surprisingly, it turns out there are lots of foods to eat besides gluten.  Some of us have been eating gluten-free for over 10 years and haven't staved to death yet.  And after a while (varies by person) the old gluteny foods are not as appealing either.

Congrats on your diagnosis.  Now you can plan on starting your gluten-free journey and improving your health.

[OrangesAndMelons]

8 hours ago, Ennis_TX said:

The ASD, Bipolar, celiac, etc are all genetic. But damaged intestines can cause deficiencies that make mental issues worse. The genes also cause certain detox issues, so we are more prone to cumulative exposures to neurotoxins and metals. Anyway, that is a debate to stay away from nowadays.

Erythritol is easier on the gut and has mostly no laxative effect compared to sorbitol, maltitol, xylitol. Some times using less and upping the stevia or monk fruit extract works depending on base flavor. Best to use it in biscuits/cookies. I like doing simple Amaretti Bases with the Swerve Brand here in the states. It is the main base and seller at markets I sell at. I think I posted the recipe here a while back, I recently redid it with hazelnut flour and a coating of cocoa and powdered confectioners erythritol on the outside for a bit of crisp outer cocoa shell and a sweet hazelnut center. 
 

Sorry, yes, vast genetic component in all of them; what I meant was that there are people in my family with equally severe ASD and bipolar type problems to me, who don't have digestive issues, and vice versa. I'm not ruling out interactions, though; I'd be very happy if the fatigue and fuzzy thinking lifted a bit, though I guess it's unlikely to go altogether, as there are big differences in energy and cognition depending on what bipolar meds I'm on.

For preference, I use an erythritol+sucralose mix — I don't get on with stevia, and monkfruit isn't really available in the UK. Premade erythritol mixes are usually with stevia, so I buy erythritol in bulk and combine the two in recipes myself. (Or rather, my partner does, since he's the baking/cooking enthusiast.) But premade sugar-free or no added sugar products hardly ever use erythritol, presumably for cost reasons ☹️

 

That sounds a lot like Ferrero Rocher — Monsieur, wiz zese gluten-free sugar free biscuits you really spoil us ?

[OrangesAndMelons]

7 hours ago, GFinDC said:

Hi Oranges and Melons,

While going gluten-free may not resolve all your brain symptoms, it may help.  In some people celiac can attack the brain cells causing a condition called gluten ataxia.  Those people sometimes have UBO's (unidentified bright objects) on an MRI of the brain.

The  other gotcha is lack of certain nutrients.  Our brains are over 90% fat and they need fats to operate.  Celiac can impair the ability to absorb fats.  That's a bad thing for a brain.  We are all literally fat-heads!

The malabsorption typical of untreated celiac disease can impair absorption of B-vitamins which are important for nerve cells to function correctly.  Guess what else our fat-heads are made of?  That's right, nerve cells!  So it's a 2 fisted whammy on our brain function.

Anyway, they say that nerves are slow to heal.  So don't expect immediate improvements.  Getting used to eating gluten-free is a bit of a challenge for most people.  It is even possible to make mistakes and eat things with gluten in them at first!  But try to keep the mistakes (glutenings) to a minimum.  Every time our immune system is triggered to respond by gluten, it will launch an immune attack.  That immune attack can go on for weeks to months, depending on the person.  So every mistake can set us back for quite a while.

Surprisingly, it turns out there are lots of foods to eat besides gluten.  Some of us have been eating gluten-free for over 10 years and haven't staved to death yet.  And after a while (varies by person) the old gluteny foods are not as appealing either.

Congrats on your diagnosis.  Now you can plan on starting your gluten-free journey and improving your health.

Thank you — I'm not feeling super-chuffed about it at the moment. I don't feel ill!

I've never had a brain MRI and I hope never to need to, but I've seen the white lesions all over my partner's brain when he was scanned (not for coeliac disease) and it's terrifying. I hope I don't have those! I'd never heard of that in coeliac disease, though I've heard of the ataxia.

I'll ask for b vitamin tests… I worry about those anyway, because two of the medications I'm on also have a bad effect on certain b vitamins, and I'm very prone to pins and needles and other paraesthesias, but I've never got round to asking as there are always a million other things to talk to my GP about.

It's not so much not getting to eat the gluteny foods I love, although that's going to be really annoying because I have a restricted diet already — the type 2 diabetes restricts sugars, and I take an MAOI which means I have to avoid certain other foods (mostly aged proteins), and I also have quite a few food aversions which may be ASD-linked — it's more this cross-contamination thing. Not being able to eat at friends' houses, or eat out with confidence, or do my shopping without poring over labels even more than I do already. <sigh>

Thanks for the brain info ?

[Beverage]

Good luck with your tests. You will do great. One thing you can start on without changing your diet yet is to think of "normal food" as you call it, as whole food, real food, meat veggies and fruit. That's what our bodies were built for. Processed foods and grains came about much later. Get in tough with your caveman side. ?  Stay in touch.

[OrangesAndMelons]

12 minutes ago, Beverage said:

Good luck with your tests. You will do great. One thing you can start on without changing your diet yet is to think of "normal food" as you call it, as whole food, real food, meat veggies and fruit. That's what our bodies were built for. Processed foods and grains came about much later. Get in tough with your caveman side. ?  Stay in touch.

Thanks — I had 4 exams, Thursday, Friday, Monday, Tuesday — so I've spent this evening recovering by pretty much lying on my bed playing video games ? Nobody should have to sit 5-hour exams. Let alone on consecutive days. It's just cruel.

I love proper homemade food, but I do tend to eat quite a lot of junk or ready-prepared stuff — I get disability benefits based partly on how difficult I find it to cook meals for myself because of the effects of my ASD, bipolar disorder and medications (problems with timing, concentration, sequencing, ambiguity, motivation etc.), which helps with the extra cost of convenience foods but doesn't make them healthy! At home my partner cooks but of course he's not at uni with me, so in term time it's either the canteen or I shift for myself, and the canteen food isn't great (oily, salty, and the veg is horrible).

By normal food, though, I don't just mean stuff like frozen pizza; even things like porridge, I don't want to chuck away the quick-cook oats I have in my cupboard and replace them with whatever random porridge oats happen to be available with "Gluten Free" and "Only Three Times The Price Of Your Usual Oats" written on the packet, that won't be what I'm used to and might only be available as standard rolled oats. Millions of little things like that, there's no way I'm faffing about with changing everything for these last couple of weeks before I go home ?

One problem with losing grains is losing the fibre — I have quite a few food aversions on top of the restrictions from the diabetes and the MAOI, which makes some vegetables utterly unpalatable for me — anything from, say, the brassica family is totally out because of the bitter mustiness. I can't even eat the canteen veg a lot of the time because they mix it all up so that even the carrots taste of broccoli And I have to go easy on the fruit because of the diabetes.

 

ARGH this is such shite ? Apparently the coeliac dietitians at the coeliac clinic at the hospital are really good, though, so I'll see what happens there.

[Ennis-TX]

32 minutes ago, OrangesAndMelons said:

Thanks — I had 4 exams, Thursday, Friday, Monday, Tuesday — so I've spent this evening recovering by pretty much lying on my bed playing video games ? Nobody should have to sit 5-hour exams. Let alone on consecutive days. It's just cruel.

I love proper homemade food, but I do tend to eat quite a lot of junk or ready-prepared stuff — I get disability benefits based partly on how difficult I find it to cook meals for myself because of the effects of my ASD, bipolar disorder and medications (problems with timing, concentration, sequencing, ambiguity, motivation etc.), which helps with the extra cost of convenience foods but doesn't make them healthy! At home my partner cooks but of course he's not at uni with me, so in term time it's either the canteen or I shift for myself, and the canteen food isn't great (oily, salty, and the veg is horrible).

By normal food, though, I don't just mean stuff like frozen pizza; even things like porridge, I don't want to chuck away the quick-cook oats I have in my cupboard and replace them with whatever random porridge oats happen to be available with "Gluten Free" and "Only Three Times The Price Of Your Usual Oats" written on the packet, that won't be what I'm used to and might only be available as standard rolled oats. Millions of little things like that, there's no way I'm faffing about with changing everything for these last couple of weeks before I go home ?

One problem with losing grains is losing the fibre — I have quite a few food aversions on top of the restrictions from the diabetes and the MAOI, which makes some vegetables utterly unpalatable for me — anything from, say, the brassica family is totally out because of the bitter mustiness. I can't even eat the canteen veg a lot of the time because they mix it all up so that even the carrots taste of broccoli And I have to go easy on the fruit because of the diabetes.

 

ARGH this is such shite ? Apparently the coeliac dietitians at the coeliac clinic at the hospital are really good, though, so I'll see what happens there.

I manage to get tons of fiber from seeds, seed meal, nut flours, and some veggies even eating cocoa nibs as a treat. I even make porridge out of almond and coconut flour, heck I was living on that for months.

[OrangesAndMelons]

8 hours ago, Ennis_TX said:

I manage to get tons of fiber from seeds, seed meal, nut flours, and some veggies even eating cocoa nibs as a treat. I even make porridge out of almond and coconut flour, heck I was living on that for months.

That sounds quite calorie-dense…? I need to lose some weight ☹️ I did eat a similar diet for a year or so, a while back, and managed to lose a fair bit of weight because I kept my calories very low, but the high calorie density meant the volume of food was pretty low and I had gut problems. Would need to up the low-calorie vegetables I guess. If I can only get my college canteen to start cooking vegetables so they're edible… ?

 

Just managed to get hold of my histopathology report; apparently I have subtotal villous atrophy with crypt hyperplasia, a moderate increase in lamina propria chronic inflammatory cells, and a diffuse increase in numbers of intraepithelial lymphocytes. So that's nice. ?

[GFinDC]

Hi,

Re the oats, you really shouldn't eat any oats, gluten-free or not, for 6 months or so after going gluten-free.  Oats are often contaminated and even the gluten-free ones can cause problems.  Around 10% of celiacs react to oats like they react to wheat, rye and barley.

Your pathology report sounds like a celiac to me.  I am not a doctor though.

[OrangesAndMelons]

4 hours ago, GFinDC said:

Hi,

Re the oats, you really shouldn't eat any oats, gluten-free or not, for 6 months or so after going gluten-free.  Oats are often contaminated and even the gluten-free ones can cause problems.  Around 10% of celiacs react to oats like they react to wheat, rye and barley.

Your pathology report sounds like a celiac to me.  I am not a doctor though.

? I can't cut out oats too! ?

Yeah that's a very coeliacy histopathology report. I think with an off-the-scale tTG-IgA and positive EMA I can't really dispute the diagnosis.

I know there are people on this board suffering with horrendous symptoms who would love to have unequivocal evidence like that, and would feel very relieved at having a nice clean black-and-white "coeliac" written on a piece of paper in their records that nobody could dismiss, but I don't feel like that at ALL. I'm annoyed and wish I'd never found out.

[Beverage]

I wasn't going to mention the oats, I figured the dietitian would inform you.  My naturopathic doc who diagnosed me with Celiac's told me not to eat it, that we could try it in 3 months or so after some healing, but I was stubborn and insisted. I even got the purity protocol oats that are grown and transported and processed in super magical conditions to avoid cross contamination with the evil grains, but alas, I got super sick on them. They apparently work the same in me as the evil trio (wheat rye barley). I make my own granola with chopped nuts and low sugar fruits.

You are concerned about the weight, well, I dropped 30 lbs in a month after going gluten free. Not every Celiac is underweight before diagnosis, many are over because of the inflammation it causes.  My doc said he had several that were HUNDREDS of lbs. overweight and dropped it all suddenly after going gluten free. Celiac's do have a problem with weight if you eat all the gluten free processed products like bread and crackers, which as you pointed out, have a lot less fiber. So eat those in minimum.  My suggestion to you is to eat as much whole food as you can, Paleo or Whole-30 type eating. You don't have to do it 100% but the closer to that, you will do much better.
I also think you will find that your bipolar and blood sugar issues will  improve with being gluten free and avoiding the gluten free processed foods.  We are all here to help.
 

[Ennis-TX]

3 hours ago, OrangesAndMelons said:

? I can't cut out oats too! ?

Yeah that's a very coeliacy histopathology report. I think with an off-the-scale tTG-IgA and positive EMA I can't really dispute the diagnosis.

I know there are people on this board suffering with horrendous symptoms who would love to have unequivocal evidence like that, and would feel very relieved at having a nice clean black-and-white "coeliac" written on a piece of paper in their records that nobody could dismiss, but I don't feel like that at ALL. I'm annoyed and wish I'd never found out.

I was in denial about oats myself during the first few years, I got the best ones on the market from gluten-free Harvest, and I was having reactions from them. The reactions were much more subtle compared to gluten reactions but not good none the less. I did a slow transition back then to rice porridge (congee),  doing it in a crockpot overnight in a 1:4 ratio of rice to water to get a really thick one I was mixing in nuts, cinnamon, and ground flax. I later got off of that and went paleo to deal with UC and later glucose issues and now do nut meal porridge (you can do it lighter by thickening with lower calorie coconut flour and thickening agents like flax meal or chia meal and stirring in egg whites on low heat).
There is even Miracle Rice which is a no net carb rice sub, you can thicken it with a tiny bit of ground flax and an egg, and cook it into porridge 
You should at least give them up for a month at first and go paleo, and whole foods only diet. Start the day with eggs, maybe bacon or sausage if you can get it gluten-free and minimally processed, and maybe some fruit or sweet potato hash if you still need carbs (I am keto and do not)
I right before dia and the gluten-free diet I thought I was dying from other issues and had dropped 40lbs+ in a month (was gluten light), right after going gluten free I soon dropped another 15lbs. >.< It took over 5 years to start gaining weight after even trying to.

Oh I even found a lower fat version of nut meal porridge that even intrigued me for a cutting option with the concept of de-fatted almond flour.
https://www.lowcarbmaven.com/low-carb-almond-porridge-with-berries/
 

[Gemini]

4 hours ago, OrangesAndMelons said:

? I can't cut out oats too! ?

Yeah that's a very coeliacy histopathology report. I think with an off-the-scale tTG-IgA and positive EMA I can't really dispute the diagnosis.

I know there are people on this board suffering with horrendous symptoms who would love to have unequivocal evidence like that, and would feel very relieved at having a nice clean black-and-white "coeliac" written on a piece of paper in their records that nobody could dismiss, but I don't feel like that at ALL. I'm annoyed and wish I'd never found out.

As far as the oat issue is concerned, you can do what you feel best but when I was diagnosed, I was like you. Severe damage, blah, blah, blah.........and I did not wait 6 months to try oats.  I ate oats around the 2 month mark and got the purity protocol oats that are very gluten free.  I would not eat anything else.  I had zero issues with oats. They went down just fine and never made my gut revolt.  I still include oats to this day, 14 years later.  Love them! 

To be honest, I never saw a dietician either.  I am a cook and always made everything from scratch so was well versed with food and what is in it.  But if you want to see one, go for it.  Everyone has to make their own decisions.  Eating oats never stopped the healing process for me but that's me.  Don't worry...you will heal and get your health back.

[OrangesAndMelons]

13 minutes ago, Gemini said:

As far as the oat issue is concerned, you can do what you feel best but when I was diagnosed, I was like you. Severe damage, blah, blah, blah.........and I did not wait 6 months to try oats.  I ate oats around the 2 month mark and got the purity protocol oats that are very gluten free.  I would not eat anything else.  I had zero issues with oats. They went down just fine and never made my gut revolt.  I still include oats to this day, 14 years later.  Love them! 

To be honest, I never saw a dietician either.  I am a cook and always made everything from scratch so was well versed with food and what is in it.  But if you want to see one, go for it.  Everyone has to make their own decisions.  Eating oats never stopped the healing process for me but that's me.  Don't worry...you will heal and get your health back.

I'm not so much "blah blah blah" as "argh argh argh" ? Pissed off, overwhelmed, a bit baffled, a bit denialy.

Seeing the dietitian is just part of how the coeliac clinic at my local hospital does things, and TBH since it's a very well-known (in the UK, at least) research hospital and my consultant has done research on, among other coeliac-related things, the best way to organise a clinic to achieve health for its patients, I'm going to go with what they recommend.

I think it's useful for me to visit a dietitian anyway since it's got to work with my diabetic and MAOI diets while still providing all the right nutrients and being doable with my lifestyle and cognitive disabilities. (I'm trying to do a degree at one of the world's most competitive universities while being so crap at everyday life that I get thousands of pounds in sickness benefit and disability benefit…) It's not that easy to get a visit to a specialist dietitians normally (or even generalist dietitians! The primary care dietetic service has been hollowed out; I'm not even sure there is one in much of the NHS any more), so I feel I shouldn't pass up the opportunity really.

The NHS is a combination of amazing and crap. My dad is having to wait several weeks just for a blood draw to see if he's got it too, and mental health services will barely see me any more just because they have no money, while at the same time I'm getting the full bloody package from honest-to-god experts for this coeliac thing.

I don't feel like I ever lost my health, that's the thing! I mean yeah every so often I have to dig pebbles of half-digested shite out of my arse but that's my own fault cause I don't eat enough veg while I'm at uni, and I've got used to having crappy guts… after a few years, I stopped mentioning my IBS symptoms to the GP because all they could do was give me mebeverine and loperamide ? Most of my problems at that point were caused by antipsychotic doses you'd be wary of giving a horse let alone a 5'4" teenager, anyway. (I've had a lot of gut troubles with identifiable causes, which is why nobody ever thought "coeliac" before now.)

My current digestive stuff isn't that bad at all — a minor inconvenience compared to never being able to eat at anyone else's house, or travel without scrutinising available eating options and carrying snacks everywhere, or all the rest of it. I was already a pain to invite round for dinner as it was because I had to explain the MAOI diet and turn down puddings ??

If it were only about current symptoms, even if I was convinced all my digestive issues would completely disappear, I'd settle for those rather than the hassle of a strict gluten-free diet.

It's the long-term consequences of untreated coeliac disease that bother me and that I want to avoid. Like with the diabetes — I'd have been happy (well not happy, but you know what I mean) to put up with the odd bout of thrush; not so happy with propelling myself towards being a blind amputee with dead kidneys, a static digestive system and agonising nerve pain at 45.

I'm glad it turned out you're okay with oats; having to avoid those would be even more limiting ☹️

[OrangesAndMelons]

2 hours ago, Beverage said:

I wasn't going to mention the oats, I figured the dietitian would inform you.  My naturopathic doc who diagnosed me with Celiac's told me not to eat it, that we could try it in 3 months or so after some healing, but I was stubborn and insisted. I even got the purity protocol oats that are grown and transported and processed in super magical conditions to avoid cross contamination with the evil grains, but alas, I got super sick on them. They apparently work the same in me as the evil trio (wheat rye barley). I make my own granola with chopped nuts and low sugar fruits.

You are concerned about the weight, well, I dropped 30 lbs in a month after going gluten free. Not every Celiac is underweight before diagnosis, many are over because of the inflammation it causes.  My doc said he had several that were HUNDREDS of lbs. overweight and dropped it all suddenly after going gluten free. Celiac's do have a problem with weight if you eat all the gluten free processed products like bread and crackers, which as you pointed out, have a lot less fiber. So eat those in minimum.  My suggestion to you is to eat as much whole food as you can, Paleo or Whole-30 type eating. You don't have to do it 100% but the closer to that, you will do much better.
I also think you will find that your bipolar and blood sugar issues will  improve with being gluten free and avoiding the gluten free processed foods.  We are all here to help.
 

I had heard stuff about oats being an issue for a small number of coeliacs, but put that down in my head as something to worry about further down the line if symptoms didn't go away on a gluten-free diet. Not cutting them out right from the start ? Are you sure that's not just an American thing, or a naturopathic thing?

Luckily, my current medication regime is giving me complete remission of bipolar symptoms, albeit while trashing my thyroid, but you can't have everything. (I'll probably just start taking a bit of thyroxine; the GP said he's happy to do that if I want to but that I don't have to, as it's only subclinical hypothyroidism at the moment.) And my blood sugar is well-controlled; my HbA1c has been in the low- to mid-30s since shortly after I was diagnosed as diabetic. I take 500mg of metformin but it's mostly diet-controlled.

Interesting to hear about the weight loss… to be honest, I don't eat bread and crackers that much anyway, so I'll likely not be buying ones with all the tasty bits removed ?

Thanks for your post ?

[OrangesAndMelons]

2 hours ago, Ennis_TX said:

I was in denial about oats myself during the first few years, I got the best ones on the market from gluten-free Harvest, and I was having reactions from them. The reactions were much more subtle compared to gluten reactions but not good none the less. I did a slow transition back then to rice porridge (congee),  doing it in a crockpot overnight in a 1:4 ratio of rice to water to get a really thick one I was mixing in nuts, cinnamon, and ground flax. I later got off of that and went paleo to deal with UC and later glucose issues and now do nut meal porridge (you can do it lighter by thickening with lower calorie coconut flour and thickening agents like flax meal or chia meal and stirring in egg whites on low heat).
There is even Miracle Rice which is a no net carb rice sub, you can thicken it with a tiny bit of ground flax and an egg, and cook it into porridge 
You should at least give them up for a month at first and go paleo, and whole foods only diet. Start the day with eggs, maybe bacon or sausage if you can get it gluten-free and minimally processed, and maybe some fruit or sweet potato hash if you still need carbs (I am keto and do not)
I right before dia and the gluten-free diet I thought I was dying from other issues and had dropped 40lbs+ in a month (was gluten light), right after going gluten free I soon dropped another 15lbs. >.< It took over 5 years to start gaining weight after even trying to.

Oh I even found a lower fat version of nut meal porridge that even intrigued me for a cutting option with the concept of de-fatted almond flour.
https://www.lowcarbmaven.com/low-carb-almond-porridge-with-berries/
 

Thanks for all this!

I generally avoid rice TBH; congee sounds like I might as well be drinking full-fat Coke ?

That all sounds pretty expensive and labour-intensive… delicious though! (Except the konjac rice — presumably it's konjac you're talking about? I can't handle the diseased-fish taste that hangs around no matter how much you rinse it.) If I could afford it I'd eat steak every week ? I was amazed how much my food shop cost because of all the nuts and meat and nice veg when I was on a low carb (not super-low: <20% of calories from carbs) diet for a year, even though it was only 1200kcal-worth of food a day.

That was with my partner cooking… I'm genuinely worried about how I'm going to do this during the months I'm at uni because I really can't cook. No, really. I can't tell you how many people have told me oh yes, they were the same, here have this simple recipe book, start out with easy stuff, etc. etc. It's not that simple. It took me a long time to get confident doing beans on toast (British delicacy ?) and I still get it wrong.

Nuts are good. I'm going to go back to eating loads of nuts. Loooove nuts; I sometimes just have nuts for lunch ?

[OrangesAndMelons]

If someone tells me roasted salted almonds have gluten in them I am gonna go SO MAD ?