Quite new and worried

[Rebelliott]

Hello folks.

 

I don't really know what to say, really. My anxiety is really up and down and I just feel a little ... Lost at the minute.

 

Well, here goes.

I should be almost 2 months gluten free but I'm not, as a rice drink I was drinking was glutening me. Yeah, that annoyed me and messed me up a but. Well, lesson learned. 

I'm coming up to just over two weeks gluten free but since being "gluten light," and now completely free, the weight just keeps coming off and its a bit concerning (although it does seem like its tapering off.) I only eat whole foods now that I prepare myself as I have a lot of other intolerances  - the usual suspects soy/egg/diary/corn - I also cannot handle fat well.

I have seen some improvement, my BM are no longer pale and floating although I still have constipation. My headaches seem to have also cleared, which is a plus. Still fighting the fatigue though. Up and down days it seems, and my pharmacy doesn't have any folic acid which I am low in without lactose! They offered me a liquid solution chocked full of parabens, not too keen on it if I'm honest.

The things I'm worrying about is the weight loss, and lingering nausea which comes and goes, and often swings between nausea and being ravenously hungry.

I know this is a journey, has anyone else had a similar experience to mine?

Also my personal products are all safe.

Oh I'm a dude by the way. 26 from the U.K

 

Sorry for the ramble.

Happy healing to everybody

 

R

 

[pikakegirl]

Yes, i was 230 lbs upon diagnosis. My crp had been high for over 10 yrs. The first year i lost 70 lbs of water. Then i started to realize my continued irratic gi problems were more intollernces from processed foods as well as things like dairy and legumes. I went on an elimination diet and lost 20 more lbs. I finally stopped at 135 lbs which was still healthy weight, not that i had seen it until high school. Check your folic acid. Just found i am positive for one of the MTHFR genes meaning i cannot convert folic acid, which i lost stopping processed food, so i take 3000 mcg l-methylfolate daily. This is improtant because the body needs to detox all the gluten and chemicals i stored undiagnosed so when that was blocked i developed terible nerve pain. I am 10 years clear and things are amazingly better. I am finally adding in foods i could not tolerate like avacados and turkey. I had a pill cam and colonoscapy this year and there is no visible damage like there was 10 years ago. I think it was my clean diet and time to heal. I should have had a full vitamin panel when diagnosed but had no follow up advice except stop gluten. Am on d3, k2 as well. L glutamine helped heal my gi and d ribose gave me some blood sugar stability. I get these at amazon, NOW brand. My d3 is blue bonnet since its fish not lanolin. My k2 and l methyfolate is life extension. It is a long journey but it has become normal to live gluten free and my diet is so much healthier i think my longevity is increased because i have to eat this way. Plus the arterial sclerosis i had 10 yrs ago is gone, cleaned by my body and food. Well wishes.

[Ennis-TX]

9 years ago I was over 200lbs, health started going down hill in college and dropped to under 125 3 years ago. Gaining weight again and now it is muscle.

I found I had to add in KAL nutritional yeast to my meals at least 2-6tbsp a meal for the stuff I was not getting due to food intolerance and removing processed foods. Stuff really does help quite a bit. I also take liquid health supplements like the Stress & Energy. The binge eats  I STILL get years later, find myself just fixing a extra glass of protein shake and a nut flour and egg white bread when I am still hungry or mindlessly munching on almonds and seeds. Heck today was 7 egg white spinach omelette with nutritional yeast in it, 4 cups of homemade almond butter/almond milk sugar free icrecream with 3 scoops of protein powder, and then I had 3 pieces of coconut toast, a few hand fulls of pumpkin seeds, and then kept munching on a snack mix I made of hemp seeds and cocoa nibs. >.< I am gaining weight slowly again and up to 130lbs for a 5'11" male >.> I think my hunger might stem from working out alot recently.

Bit of a list here from stuff I take and others https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

PS if you new to this diet check out the 101 thread will help you out alot avoiding CC https://www.celiac.com/forums/topic/91878-newbie-info-101/

I would help you out with foods but the EU/UK area I am not that familar with and sourcing I am sure some of our other members can help you out.

[cyclinglady]

Welcome!  

It looks like you are on the right path.  Now, you just need to be patient (believe me, it is hard to be patient).  

I choose not to supplement.  Instead, I insure that my diet is varied and full of good nutritients.  I am not deficient in anything per my doctor.   Everyone has to determine their needs because we each come with a list of collateral damage that can extend beyond the gut.  

Hang in there!  ?

[Jmg]

4 hours ago, Rebelliott said:

I don't really know what to say, really. My anxiety is really up and down and I just feel a little ... Lost at the minute.

Hi and welcome

You've found a great community full of wise people who have experience successfully negotiating just the things you're going through. So that's some good news to start. Course there's people like me here too...

Take heart from the fact its very early days and you will have a lot of healing to come. Everyone slips up at first, don't beat yourself up, over time you get better at it, but mistakes will happen. Maybe in time you'll be able to reintroduce some of those other foods.

4 hours ago, Rebelliott said:

Oh I'm a dude by the way. 26 from the U.K

Yeah me too. Sadly not 26 anymore though. 

Best of luck!

Matt

 

[Rebelliott]

15 hours ago, Jmg said:

Hi and welcome

You've found a great community full of wise people who have experience successfully negotiating just the things you're going through. So that's some good news to start. Course there's people like me here too...

Take heart from the fact its very early days and you will have a lot of healing to come. Everyone slips up at first, don't beat yourself up, over time you get better at it, but mistakes will happen. Maybe in time you'll be able to reintroduce some of those other foods.

Yeah me too. Sadly not 26 anymore though. 

Best of luck!

Matt

 

Hi Matt.

Nice to meet someone from the U.K

Thank you for your encouraging reply :). Yeah, I'm sure we all make mistakes at the start. I have however changed all my cutlery, plates, chopping boards and binned my toaster as I can't eat gluten-free bread due to the egg intolerance. I do think my house is completely gluten free.

I do wish I could eat more. I can't do rice/grains or potatoes either. The only thing my stomach seems content with is chicken and veggies.

Thanks for listening.

 

R

[Rebelliott]

Thank you everyone for the replies, advice and well wishes. Hope you are all good

I don't know whether to take the folic acid and deal with the lactose wind, or just put up with the fatigue as I'm sure its contributing to it.

Its just the weight loss bothering me. I wish I could have some peanut butter or eggs so I could take in more calories but my gut won't have it. Ah, well.

Best wishes all and my thanks.

R

[squirmingitch]

You'll get there. It's very early days yet.

[Jmg]

34 minutes ago, Rebelliott said:

Hi Matt.

Nice to meet someone from the U.K

Thank you for your encouraging reply :). Yeah, I'm sure we all make mistakes at the start. I have however changed all my cutlery, plates, chopping boards and binned my toaster as I can't eat gluten-free bread due to the egg intolerance. I do think my house is completely gluten free.

I do wish I could eat more. I can't do rice/grains or potatoes either. The only thing my stomach seems content with is chicken and veggies.

Thanks for listening.

 

R

Have you tried making chicken or beef bone broth? Very good healing food for the stomach. Lot's of blogs online with instructions and even the process itself can be quite fun.

Try treating these first 6 months on the diet as a special phase to kick start your body into healing. Keep a food diary and note symptoms and reactions. Once you've done some healing you may want to try reintroducing some foods to see if you can now tolerate them. There are lots of accounts on here from people who were in your position who have been able to add more foods once they've had sufficient time without gluten. 

Ennis can probably help with some substitute ingredients. You can search online as well ie: Open Original Shared Link some of those may work?

 

[Ennis-TX]

53 minutes ago, Rebelliott said:

Hi Matt.

Nice to meet someone from the U.K

Thank you for your encouraging reply :). Yeah, I'm sure we all make mistakes at the start. I have however changed all my cutlery, plates, chopping boards and binned my toaster as I can't eat gluten-free bread due to the egg intolerance. I do think my house is completely gluten free.

I do wish I could eat more. I can't do rice/grains or potatoes either. The only thing my stomach seems content with is chicken and veggies.

Thanks for listening.

 

R

How are you with beans, and apples? I have a vegan recipe for bread that is about like corn bread. It uses garbanzo and fava bean flour and apple sauce as a binder instead of eggs if I recall. I use it to make the bread for thanksgiving dressing now days. I think I posed it in the recipe section somewhere.

[Whitepaw]

On 7/20/2017 at 3:46 PM, Rebelliott said:

 

I don't really know what to say, really. My anxiety is really up and down and I just feel a little ... Lost at the minute.

...

I have a lot of other intolerances  - the usual suspects soy/egg/diary/corn - I also cannot handle fat well.  ...

 

Can you tolerate nut milks? I find macadamia milk the gentlest on my stomach. The only brand I've seen here in the US is Milkadamia, and it comes sweetened or not, and fortified with some vitamins. I think this brand is from Australia. Or you could make your own.

As for time, it can take awhile, and that seems to be more the norm. A recent new dairy intolerance that peaked May 3 has made me sicker than celiac ever did. Almost 3 months later and I am just starting to get better and my fatigue is improving. I had the usual ups and downs, inadvertent exposures, and trial and error.  I had only mild symptoms (comparitively speaking) at my celiac diagnosis 4 years ago, yet it took 6 months to a year for them to fully resolve after going gluten-free.

It's hard to be patient when your GI tract is off, as it makes you feel ill all over.  Just keep doing the right things, introduce new foods one at a time.

I would also suggest more protein for weight issues ... can you tolerate tuna? Tuna and some version of mayo?

Salmon, vitamin D supplements, and bone broth seemed to have helped me recently with gut healing.

Wishing you well...

 

[Rebelliott]

Hey folks.

Thanks for the suggestions Ennis but I can't tolerate fruits right now, otherwise I would be scoffing down bananas.

Get Wolf. Iam eating plenty of protein, although I stopped the tuna due to my throat feeling funny after eating it. Thanks for your reply.

 

Wish you all well.

 

R

[Ennis-TX]

3 minutes ago, Rebelliott said:

Hey folks.

Thanks for the suggestions Ennis but I can't tolerate fruits right now, otherwise I would be scoffing down bananas.

Get Wolf. Iam eating plenty of protein, although I stopped the tuna due to my throat feeling funny after eating it. Thanks for your reply.

 

Wish you all well.

 

R

Yeah me either, only 1-2tbsp of apple sauce in some whole batches as a binder in muffin for me is my limit. I do not tolerate sugars at all or I start bleeding....UC flare ups are bad. But I live on vegan proteins, nuts ,seeds, egg whites, and low carb veggies. I also do not tolerate animal fats, and meats go straight though me undigested or puked up hours later. funny how this disease can screw up your entire system, and everyone in a different way.

[Jmg]

47 minutes ago, Rebelliott said:

Hey folks.

Thanks for the suggestions Ennis but I can't tolerate fruits right now, otherwise I would be scoffing down bananas.

Get Wolf. Iam eating plenty of protein, although I stopped the tuna due to my throat feeling funny after eating it. Thanks for your reply.

 

Wish you all well.

 

R

Avocados are packed with good fats. Aldi and Lidl often have them on offer. 

You may be able to tolerate sweet potatos if you're looking for a carb. They're better for you than potatoes, lower glycaemic index and more nutrients.

Ask the pharmacy if they can order in the folic acid variant your after or order it online?

All the best!

Matt

[Rebelliott]

Sorry to hear about your no meat, Ennis. It sucks his celiac disease messes with people in different ways.

Matt I was living on sweet potatoes but now they bloat me, which is odd. Avocado's would be to much fat, I think.

I'm three weeks in today, and the past few days my C has improved. So that's some good news.

I do know I need to stop worrying about the weight loss. So easy to Google and worry. If I could get back to lifting weights and reclaim my shoulders I'd be more calm and less stressed. For now I'll just have to get used to being lean.

Anyone up for a symptom swap. My off on fatigue has shown up. I will swap for headaches brain fog.

R

Be well all

[squirmingitch]

7 hours ago, Rebelliott said:

Hey folks.

Thanks for the suggestions Ennis but I can't tolerate fruits right now, otherwise I would be scoffing down bananas.

Get Wolf. Iam eating plenty of protein, although I stopped the tuna due to my throat feeling funny after eating it. Thanks for your reply.

 

Wish you all well.

 

R

How about cooked fruits? You could even cook bananas.

This is just something to think about. This may sound rambling for a bit but stick with me please.:

I feed my dog a raw diet and part of that raw diet is all kinds of fruits & veggies. The catch is that the fruits & veggies have to be frozen & then I thaw it for her to eat. So what I do is take the fruits & veggies & put them in the Ninja & it comes out as what I call goop. Spoon it into sandwich ziplock & stick them in the freezer to freeze, then thaw as needed. Why do I freeze it? Freezing it breaks down the cellular walls which makes the nutrients more available as it passes through her digestive tract. Now I can't say with any certainty that the same would be true of humans but it would be a reasonable assumption.

So to sum up..... I'm thinking it might be worth a shot to try freezing fruits & veggies & see if then you could tolerate them, especially if you pureed them first.