Went From Crying of Joy Feeling Better to a SERIOUS Breakdown

[KittyButterfly]

Hi. Guys, 

I really wanted to connect with you all. First post. As soon as got validated, I posted this new post. 
I’ve read countless, and I mean countless, posts around here and they have all just literally brightened up this path and set a light for me to walk in. So thank you for your contributions. To the point that I memorized some of your names on your profile. (The people who posted/commented often) Talking about you, IrishHeart, and cyclinglady..... Lol (lot of the posts I read were old threads)

I have been gluten free for a month and 10 days, and there were days where I (seriously) cried of joy because of how good i felt again. How I suddenly felt alive again, like a kid again. I can think again the way I used to, I can love those around with me the way I used to. I can be ME AGAIN!!! My love for singing, music, painting, art, piano, guitar, writing, fashion design, all came back that I thought my depression robbed me of..  I felt euphoric and peaceful and the anxiety was gone like it was never there… 

There were up and down days, more down than up. But this last week I had a big uphill. Everyday started to feel good when I hit the one month mark. Literally .
Then, I got a little mischievous and ate some Doritos cool ranch, when I knew there was a possibility I might react to the msg. (But I knew they were completely gluten free, otherwise would have never even looked at them, let alone pop them in my mouth)

As SOON as I ate them, I felt dizzy. Had to lay down, had the BIGGEST pressure in my head surround my whole head. Severe chest pain tightness that im still feeling now few days later. And my stomach has been making strange gurgling sounds I never heard it make for a few days now. And also my digestion is off. Not constipated but its just different. And the chest tightness/pressure would get worse every time I got emotional . My head felt numb all over and it was completely different than anything ive experienced. Like it puffed up from the inside of my head. 
I haven’t had energy since, and ive been triggered and saddened by everything. But it feels deeply in my heart, meaning I feel more deeply hurt in my heart. It’s so raw emotionally. 
And right after eating the Doritos, I had to lay down to sleep. And it was like a pressure was on my chest and head at same time holding me down, and I was SO OUT OF IT.
And continued to be out of it for days. 
Stomach made sounds an hour later that I never heard before.
At first I didn’t even think it was my stomach, it was hilariously weird. 
 Could not get up for the life  of me. Just wanted to sleep. 
Strange stomach pangs/pain/uncomfortableness 
Crying few hours later 
Big burp hours later , a few of them. 
And a few hours later, my stomach was making “pew pew” noises. Like those fake voice imitation gunshots. lol. 

Ive never been the type to feel gastrointestinal distress, only neurological. 

Then the next day, I felt like $%#@. (You know what I mean, the four letter curse word starting with S that stinks literally and figuratively ...yayyyyy. ) 

So I went from crying from joy to crying like someone died. (My moms direct quote as she came running out of her room to mine and shouting  “Cece, are you okay? I heard you crying. Did someone we know or you know die?” She said frantically in a very worried and loud tone. 
She said it was so bad that it was the only thing she could think of. (keep in mind she has death in her mind because unfortunately, we are in N.Y.C, which has very high cases of mortality related to this new pandemic)

Now, let me say that I am a crybaby. BUT I have NEVER cried like that in my life. And 100% of the times I cry, NO ONE sees or hears it. I keep it to myself. Im an introvert and also a highly sensitive person (HSP) I read the book by Elaine N. Aron, it was great. Also I hated the attention I would get from crying as my mom would not leave me alone and worry so much if she heard me crying, lol. I know, its because she cares. But just saying. So for me to cry that loud, I couldn’t control it.. . 
I dont know what happened!!! I wasn’t thinking of anything, I just started bawling and I made crying noises that I never made in my life to the point of waking up my poor mom at 3- 4:00 a.m. I was surprised at my own crying voice. “What the hell?” Were my thoughts. 

So I guess what im trying to say is, I am so confused. I must be really sensitive to the ingredients in Doritos cool ranch. 

I have to add I am not lactose intolerant, I do not react to corn or soy. 
recently turned 26 yrs old female as of this past January 21st, Capricorn/aquarius cusp, anyone here cusp as well? sorry if im losing you...lol
I only react to gluten (obviously) silly me...
honey (thats new since gluten-free) 
potatoes (also new since gluten-free) 
turkey bacon (again, new since gluten-free) 
you guys were right when you said new intolerances show up. Boy, was I surprised. !!!!!!!!
Ive kept a food journal both digital and physical notepad.. and im EXTREMELY detailed on it… 

I guess what Im trying to say is I just feel like I need some kind of support from those who KNOW what it feels like to feel the way we do. And how it has prohibited us at some point from living normal lives. 

And I guess what im trying to say is I wonder if it was the MSG that did this, or the Maltodextrin in it? 

I guess what im trying to say is, I kind of feel lonely in this. 
BUT…….I am so determined and so passionate and there is nothing that I wouldn’t do to feel normal and the way I used to feel years ago before all of this started. 
There is no setback that will stop me. 
NOTHING that will make me consider not being gluten free and heal. 
I dont care if its the best tasty thing in the world, there is no price for my wellbeing. For my soul to thrive and vibrate.. 

P.S- whats up with this insomnia since gluten-free? Ive always been like a bear hibernating sleeping hours and hours.. 

also...whenever I get glutuned, suddenly Im Ravenous in hunger. its like an insatiable hunger... and I just want to devour anything........... except gluten containing foods ...(angel face) ........so whats up with that?

also I got excited there was one person "following" this post, but then I clicked and realized its just me. aye yay aye. I can't catch a break. lol. (just kidding... kind of)

Thank you for your helpful energy!!
 

 

Edited May 11, 2020 by KittyButterfly
kept thinking of things to add... my mom has always told me I drag and stretch all talking... does that mean I talk a lot? lol....

[GFinDC]

Hi, welcome to the forum!

At 40 days into the gluten-free diet you may just be starting to heal your gut.  The immune response takes time to settle down and stop attacking your gut.  So food reactions can sometimes be caused by the unsettled state of your gut,  You may react to foods now that won't bother you later.

Cool Ranch Doritos are a processed food and it's hard to digest those at the start of the gluten-free diet compared to whole foods.  It is helpful to stick with foods with 3 ingredients or less for several months.  One of the problems with eating processed foods is they contain so many ingredients it can be hard to tell what caused a problem.  If you simplify your diet food reactions will be more clear.

https://www.doritos.com/products/doritos-cool-ranch-flavored-tortilla-chips

INGREDIENTS

Corn, Vegetable Oil (Corn, Canola, And/or Sunflower Oil), Maltodextrin (Made From Corn), Salt, Tomato Powder, Lactose, Whey, Skim Milk, Onion Powder, Sugar, Garlic Powder, Monosodium Glutamate, Maltodextrin (Made From Corn), Cheddar Cheese (Milk, Cheese Cultures, Salt, Enzymes), Dextrose, Malic Acid, Corn Syrup Solids, Buttermilk, Natural and Artificial Flavors, Sodium Acetate, Artificial Color (Red 40, Blue 1, Yellow 5), Spice, Citric Acid, Disodium Inosinate, and Disodium Guanylate.

CONTAINS MILK INGREDIENTS.

[knitty kitty]

KittyButterfly, 

Welcome to the forum!  Sorry you're having some trouble, but we'll go over some steps and have you dancing and twirling again in no time!  

It's great you're already keeping a food journal!  You might want to include notes on mood and bowel movements.  I call mine the food/mood/poo'd journal.

I, too, have had the inflated balloon in the head feeling, not to mention the balloon animals forming in my intestines, complete with squeaky twisting balloon sounds.  Those balloon animals will deflate given time!

Keep in mind, products made with gluten are required by law to be fortified with vitamins because processing removes or destroys the vitamins naturally occurring in wheat, barley and rye.  Gluten free foods are not required to be enriched with vitamins.  

The area in your small intestine where your vitamins are absorbed is the same area that celiac damage occurs.  Absorption of sufficient vitamins may be problematic.  I had to supplement my vitamins and minerals.  New Celiacs should be tested for vitamin and mineral deficiencies as part of follow up care after diagnosis.  

The tips of the villi in the small intestine make an enzyme, lactase, which digests dairy.  Because the villi are damaged from celiac disease, they don't produce the enzyme and the dairy gets digested by bacteria further down the digestive tract.  These bacteria produce a lot of gas as a byproduct, hence the bloating and squeaking.  New Celiacs should be checked for SIBO (small intestinal bacterial overgrowth).  

I followed the AIP diet (AutoImmune Paleo diet) which effectively starves out those bad bacteria so more beneficial bacteria can flourish.  The AIP diet is basically meat and veggies and omega three fats like EVOO and flaxseed oil.  No nightshades (potatoes, tomatoes, green peppers and eggplants).  (Nightshades promote leaky gut syndrome.)  No grains of any kind including corn and gluten free grains like quinoa, rice and amaranth.  No legumes.  This is not forever, just until your gut heals a bit more (several months).  Then you can add certain foods back in.  I started with basmati rice, the rice type least likely to cause a reaction.  Corn, soy, and nightshades are still on my don't eat list.  And I have a dairy allergy, so that's still on my don't list, too.  Some people without dairy allergy can eventually consume dairy again when those enzyme producing villi grow back, like Cycling Lady, for example.

My mood suffered before diagnosis.  Antidepressants just made things worse.  I found out that your feel-good brain chemicals (neurotransmitters like serotonin and dopamine) are made in your digestive tract.  When your intestines can't absorb the nutrients needed to make the neurotransmitters, you get depressed.  I learned that supplementing with Tryptophan, Vitamin B6 (pyridoxine), and magnesium provides the building blocks to make these neurotransmitters.  I take them an hour or two before bed. They help with the insomnia, too.  I also add in passion flower extract if I'm particularly WIDE awake.  Vitamin D will help lift your depression, too.  Vitamin D levels are frequently low in newly diagnosed Celiacs.  

That ravenous appetite is your body's way of trying to get those missing vitamins.  I found it helpful to drink a warm beverage, like herbal tea.  I had problems with black tea at first, but I can have a proper cuppa now.  Drinking lots of plain water helps!  Staying hydrated is important!

I was severely deficient in thiamine.  I have Type Two Diabetes (as well as Celiac Disease), and have a higher metabolic need for thiamine.  Thiamine helps your pancreas make insulin needed to control blood sugar levels.  Thiamine is extremely important to brain function!  It helped lift that brain fog.  Benfotimine, one form of thiamine, has been wonderful in helping my brain function.

Thiamine (Vitamin B1) is often low in Celiacs.  Thiamine is needed to process carbohydrates (like honey and potatoes) and turn them into energy.  Without enough thiamine, your body takes a shortcut that doesn't use as much thiamine and stores carbohydrates as fat.  Ugh!  When I was deficient in thiamine, I would sleep all the time.  I'd nap on the couch and then get up and go sleep in my cave, er, um, bedroom.  I did feel and look like a huge hibernating bear.  I've got tons of energy now!  My weight is down significantly and my diabetes is kept in control with diet and thiamine! 

I was also severely deficient in Niacin (Vitamin B3).  Niacin helps your body heal those damaged villi.  I also have Dermatitis Herpetiformis (DH).  The flushing caused by regular niacin irritated my rashy skin, so I changed to Niacinamide, a different form of niacin (tryptophan, mentioned above, is another form) both of these don't cause flushing.  My innards and my skin feel much better.

It's rare to have a deficiency in just one vitamin because they are all absorbed in the same area and they all work together.  Other B vitamins (there's eight) a Celiac might be short on are Riboflavin (flaky oily skin around the mouth or tears at the corners of the mouth are signs you're short on this), Biotin (helps with hair loss), Pyridoxine (B6), B12 (Cobalamine), folate (B9) which help with blood production among other things, and pantothentic acid (B5).  B12 deficiency can cause depression as well as anemia.  The eight B vitamins and Vitamin C are water soluble.  They need to be replenished every day.  Vitamin C and B12 help relieve that inflated balloon head feeling caused by high histamine levels after a glutening.  The fat soluble vitamins are Vitamins A, D, E and K.  Celiacs often have trouble absorbing fats, so these might be low, too.  Minerals like magnesium, calcium, selenium and iron may be low as well.  Learn as much as you can about vitamins and nutrition.  Knowledge is power! 

You're definitely not alone in this!  We're here to help and support each other.  

Keep your light shining. Keep your vibrations flowing.  Keep us posted on your progress!

Knitty Kitty

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(Virgo, INFJ) 

 

 

 

 

 

 

 

[cyclinglady]

Eat real food.  Be patient.  You have read my other posts, so I will not repeat myself.  

Hang in there!  ?‍♀️

 

[Awol cast iron stomach]

Hello and welcome. As the others have stated for many of us it's whole foods in those initial days. Honestly for me it was 2 years and 4 months. Since that much time passes many of us lose the taste for the standard American processed snack foods. Based on my experience the Maltodextrin derived from corn would be a problem . I had 13 food intolerance s after my gluten challenge. I pureed foods in the beginning. Early on my non puree food stage my celiac cousin would text me what did you eat today? I would reply a peach.  

Some of my symptoms are opposite you. I slept a ton! I slept so much I didn't really eat. What makes me emotional is cross contamination vs gluten-free. You are still healing so you'll likely stabilize some more In the future. In addition to the 13 intolerances I struggled to digest fat. My enzymes and bile struggled during digestion. The first time I tried lean steak I was up all night crying because I could not digest properly, and I was uncomfortable.

You sound like you have a very supportive loving mother. It's best since you stated you are in NYC (in my opinion) to stay whole foods/less processed so you can get all the nutrients you can get to stay healthy. You are young so that's also a plus. Use the time of you can to find some new gluten-free recipes, read, rest. You are fortunate you got your diagnosis before things got super busy in the medical field in NYC. Your Angel was looking out for you.

Be well

 

Edit Aries ( 2 important men in my life are Aquarian)

[KittyButterfly]

On 5/11/2020 at 8:48 AM, GFinDC said:

 

Hi, Paul!!
 I recognize your username from all the million posts I read! Lol …

Before joining the site, I used to chuckle when I saw your “a little farting never hurt nobody” lol…?
Thank you for reading my ultra long emotional ridden rant, and taking the time to reply! I probably was crying while typing it from feeling so horrible from those darn doritos. I was in such a fog.. 

Oh, wow, that makes sense that why I started to react to stuff I didn’t before, since you mentioned that food reactions can sometimes be caused by the unsettled state of your gut. Well, that makes me feel a lot less confused and makes me feel reassured thats its not me doing something wrong, but just that my gut is healing.. (in reference to the potatoes, and honey)

Okay, noted about the three ingredients or less!  Great tip!
I intuitively started doing that at the supermarket, I put down a lot of things that had a lot of ingredients because I noticed when I did react, it was products with a lot of ingredients which essentially meant a lot of artificial/chemical/preservatives/additives. 

Since your advice, I picked these up today, certified gluten free, non gmo, Angie’s “Boom Chicka Chicka Pop” popcorn at Costco. I am currently snacking on them now. Hehe. 
They are so surprisingly fresh and they are satisfying my sweet and salty combo craving. Only four ingredients. 
Mmm, they are yummy. Crunch Crunch. 
ts the purple bag, “sweet and salty kettle corn” flavor. 
Ingredients: Popcorn, sea salt, sunflower oil, cane sugar. 

Great point on it’ll be easier to decipher whats causing reactions on a more Whole Foods, simpler menu! Thanks a bunch!!!

P.S- that made me laugh about the “devils brew” when you wrote about coffee on your bad list. Lol!
And the soy-no joy is so clever! Lol 

How about “petty pistachios”, and “sorry not sorry strawberries”? No? lol… ???

May I ask what reactions do you get from coffee? (I’m still drinking decaf coffee, an organic fairtrade instant decaf coffee brand that is freeze dried I get from Whole Foods , so its relatively fresh and makes a great iced coffee as it melts so good in the liquid of choice for an instant coffee, and I haven’t reacted so far but I’ve been drinking coffee for a few years now and asking you how you react so I know what to look out for when I do drink it now after going gluten free, since I react to potatoes/honey/T. Bacon now after gluten-free when I ate those my whole life!!)

I used to drink regular coffee, (meaning not decaf)  from Gasoline Alley coffeeshop here in New York or Starbucks, or Maison Kayser. But switched to decaf many months ago since the caffeine was just way too stimulating for my very sensitive nervous system. It made me so jittery! And induced a lot of extra anxiety. That was the main issue I had with it. Also, caffeine gave me heartburn, plus acid reflux. 

The decaf version doesnt give me those bad symptoms and still allows me to enjoy that awesome, cozy and motivating, ritual of that morning Joe. With zero affects!

Fun fact- the decaf coffee versions still have tiny tiny traces of caffeine in it. (Apparently, not enough for my overly sensitive nervous system to feel it at all)

[KittyButterfly]

@cyclinglady

Ahh!!

Cyclinglady, you have answered my post! I am ecstatic.
 Its been a long time of reading all your helpful, useful, wise advice! 

Thank you! I have decided to cut off the random indulgence in processed foods and will continue to eat real foods! With a dose of patience. 

 

[KittyButterfly]

On 5/11/2020 at 5:00 PM, knitty kitty said:

 

@knitty kitty

Knitty Kitty! Cute username!  ?

I really do want to be dancing and twirling again, because thats what I was literally starting to do after I started to feel better. I started to feel so good that whenever a song came on, I started jamming again like I used to long ago before all of this started. 

That made me giggle; the food/mood/poo’d journal! Im going to call mine that too from now on! lol. 
At first, I wasn’t putting in bowel movements recordings, but then towards the last few weeks, I started to do that because I noticed there was a pattern happening so I wanted to note that down! And for the mood, I have a separate digital journal for that as in details how I am feeling because my emotions would be all over the place, sometimes, you know? 
Also for the mood journal, I needed a place to jot down all the things I was so excited about noticing, like how my brain fog was lifting to the point I was having epiphanies, and creative images again, and lyrics for my poetry/song lyric writing, etc. 

Have you noticed a pattern on your mood when you write it down on your food/mood/poo’d journal? 

Great to know its not just me on the inflated balloon in my head feeling. 
I had always suspected I was low on certain things because whenever I would intuitively add in a new supplement, I would instantly feel better in such a rapid amount of time. 

I have always suspected without being checked that I was deficient in B12, took that a few years ago and I did notice a difference in energy! (Eventually stopped taking)
Also in minerals, so I took a high quality mineral multi-vitamin supplement. (Eventually stopped consuming)
Also thought I might be low in iron, (hair loss, feeling cold, etc, so I bought iron by the brand “premier research labs” in a small shop in the east village). (Eventually stopped taking that too)
All this just through intuition, and trying to connect to see how my body felt. 
This was before I knew about my gluten situation, and eventually I stopped taking because eventually nothing would PERMANENTLY get better, (because I didn’t know gluten was the major issue in the first place, and I was unknowingly eating a lot of it as one can assume) 
I also stopped because just……. life, things got so bad, Knitty kitty, that even the self care routine of vitamins had come to a halt. This was the real and most predominant reason I stopped. (Because logically, even if things didn’t get better, I would still be taking them just to be on the safe side)
I used to be so rigid about anti-aging skincare for years and years, (I know, comically young, but it was just my thing, you know? Lol) 
I felt girly taking care of my skin, and taking vitamins, and all of that, but eventually things got so bad physically and mental health/emotional wise that everything stopped. 
Gosh, my whole life stopped, really..  I just stopped living, really. I had no energy or motivation to do ANYTHING. 
Not to sound morbid, but it was my reality. 

I can promise that as soon as things start to slow down a bit, with this crisis situation in NYC, that I will visit my doctor for a vitamin/mineral analysis. I’m not sure if they accepting non-emergency clients currently. 
In the meantime, I will call my local health food spot to see if they are open during this city shut down, so I can pick up the vitamins you listed.

Wow, the AIP diet sounds really convincing! So its not forever, just as in when celiacs stop consuming dairy for the first couple of months, just until things heal and calm down a little, thank you for explaining! I do have a hunch that I do have excessive bacterial overgrowth, a huge hunch really, because when I started to take vitamins (a couple of years ago) to combat self suspected candida and parasites, there were a whole bunch of crazy things happening during that time like die off reactions and intense detox. 
The AIP diet wouldn’t be too far off from what I am currently doing anyway! I like that, thank you for sharing, knitty Kitty. 

Speaking of bad bacteria, I started taking the Renew life probiotics, 150 billion, and that was just so great! It was very effective in helping me digest better and I was feeling just a little  better overall on them! At that time., just a little better was something enough for me, if you know what I mean! By how bad I was feeling.. this was before going gluten free. 

Are corn, soy, and nightshades still not on your list because you are still reacting to them?

I have always suffered from depression since my late adolescence but I never took anti-depressants because I always feared that it would complicate things and I’ve read lots of studies that weren’t in the best light of them, so I have been staying away from that. I have heard they worked for a lot of people, but I was always apprehensive and very strict about where I stood in terms of taking them.  I will look into those vitamins that you take before bed, from that list, I am currently taking magnesium powder. The anti stress one. It really helps with getting me in that mood to sleep. But the insomnia has taken over recently. Lol. That is just a mystery to me. 

What is your favorite tea?
 I get these jasmine /green tea and jasmine/white tea from the “T2” shop in NYC in Soho, they are the only ingredients listed. Green tea and jasmine. 
This jasmine tea is so fragrant and sets you in this really, calm, zen state, its very aromatic and the jasmine scent is very strong, especially in the white tea version. It always calms me down. 
I have also been digging the Queen of greens, lime and ginger organic green tea. I have been obsessed with this one lately. Especially after big meals as its a little bitter so its nice after taste after a big meal to cleanse the palate.

Which form of Thiamine (Vitamin B1) did you find to be more bioavailable for your body chemistry? Is that the Benfotimine that you mentioned helped your brain function? Or did you experiment with other forms? This is so helpful!

“When I was deficient in thiamine, I would sleep all the time.  I'd nap on the couch and then get up and go sleep in my cave, er, um, bedroom.  I did feel and look like a huge hibernating bear.  I've got tons of energy now!  My weight is down significantly and my diabetes is kept in control with diet and thiamine! “- Knitty Kitty.

I would have wrote that! This quote I just listed, that is ME exactly.. the insomnia has only set in now since starting gluten free, but before that, no sleep would ever be enough sleep. I would constantly need a nap and no matter how long I slept, nothing would refresh me or suffice. Also I call my bedroom my cave too, I literally hibernate in it and exclude myself from the rest of the buzzing, humming, electric world. 
Haha, I always feel and look like a huge hibernating bear! Hair disheveled, round appearance (from my body constantly hoarding fat, you explained this perfectly to me about what happens when you are deficient in thiamine!), and a  furry , warm, body temperature coziness that always induced me to sleep constantly! 

Im happy for you that your weight is down and diabetes is in control with the supplementation of thiamine!
This could be the reason why its so hard for me to lose weight! 

“The fat soluble vitamins are Vitamins A, D, E and K.  Celiacs often have trouble absorbing fats, so these might be low, too. “ this could be why im am always craving fats!!! I am glad I only crave healthy fats like avocado and fish. 

Is the high histamine levels after a glutening caused by the immune system reacting to the gluten? I am a newb. hehe. 

Knowledge is power, and sharing that knowledge powers another fellow human being! So thank you so much for this wealth of information, I appreciate you breaking it down to each detailed category and I learned so much from this post! I can’t thank you enough for taking the time to write this all down for me. 

Feels so good to hear I’m not alone in this, and ……….
OH MY GOD!! A FELLOW RARE INFJ!!! ?
I am too, a hardcore INFJ, and its so hard for me to meet INFJ’S mbti type because they are quite rare. That made me so happy!!! 
And a Virgo! 

Thank you for the warm wishes and I will keep shining my light and will update progress on here! Thats for sure, I can ramble on and on! Lol. 

[KittyButterfly]

10 hours ago, Awol cast iron stomach said:

 

@Awol cast iron stomach

Hi! 
Aww, there is a little cat in your picture!
 Is that your cat? I adore cats. 

Yes, I have noticed that through my reactions that I have been gradually leaning towards whole foods as that is whats currently working for me! Now, ill have to be more careful about the snacks, like the Doritos for instance. To be completely whole foods in the initial days like you’ve mentioned. Wow, 13? and here I thought my honey, potatoes, and turkey bacon was a lot! lol. 

The strange thing is that in the beginning of gluten free, I was sleeping a lot like I always did my whole life. No sleep would ever be enough sleep. I also started to sleep much more deeply in the beginning of gluten free, almost like a coma like state where nothing would wake me! That was in the first two weeks. Ive never slept deeper than that, it would scare me sometimes. lol. 
Then a few weeks ago, I had the sudden insomnia. So a mystery, indeed. 

I’ll have to keep an eye out on how I am doing digesting fat, I do crave healthy fats (always have) and as of now they are currently digesting fine but I will keep an eye on it as I haven’t given it much thought but now I am curious!! 

“What makes me emotional is cross contamination vs gluten-free”. 
Did you mean that CC makes you emotional in different ways then gluten free?

Yes, she is very loving and supportive. I feel so lucky to have her in my life and as my mom. And in the beginning when she would cook things for the family, and I said I couldn’t eat them (pasta, breaded fish) She would be so understanding and never ever pressured or felt any way.  (She didn’t know yet the specifics of what I could or could not eat yet, but she does know) everything was so fresh at the time. 

A few weeks ago, she made this homemade meatballs pasta, her original recipe I always loved, and when she noticed the big pot stayed mostly full, she laughed and said
 “ heyyyyyyy………I dont have any more luck when I make this pasta anymore” and we both laughed so much. Hahaha. 
(She means no luck in no one eating her recipe anymore, meaning me) hahaha… 

Yes, I feel so blessed that this happened before things got crazy busy in hospitals.

 And the weirdest thing, the strangest more supernatural thing, which doesn’t come to a surprise to me, is that this happened exactly when everything shut down in NYC. So that meant I would go on the gluten free challenge while I was off from work. Which meant I can REST from my crazy full time job, and not have to reluctantly take off of work if I felt bad from a glutening… 
Because if I was working right now, and the doritos situation happened, theres no way I could have made it to work…. It was a nightmare! 

It was like everything came at the right time, you really can’t explain these type of things but I truly feel and KNOW my angel was looking out for me.
I’ve been working full time for YEARS, and to start gluten free right when the city shut down which would mean my job shut down temporarily is just a crazy coincidence… 

It gave me time to do hefty amounts of research on this site, time to cook my own meals (which I wouldn’t have had time if I worked), time to sleep all I want and recover from possible incidents. And time to journal everything and really analyze and connect with my body day by day and figure out which foods were still affecting me. 

An Aries! And two male aquarians in your life! Im guessing father and spouse? Or son and spouse? lol…. hehe… 
 My sister is a true aquarian as I am just a capricorn/aquarius cusp, and its so interesting how different we are considering she is a full aquarian! 

Thank you for the lovely words of encouragement and I was so touched when you mentioned angel looking out for me, because I felt like it was so cool that you said that since I really felt my angels had something to do with this too....?

also I dont know how this quote and reply works, do I have to show the quote or can I just reply? hmmmm....
Did I mention I love cats? I LOVE CATS. lol. They are such healing, powerful little creatures. 

And I actually have a story about what made me consider if it was gluten making me feel ill, and it was such an intuitive moment and quite a miracle, really…  but maybe that should be a new post? ?

[KittyButterfly]

31 minutes ago, KittyButterfly said:

 (She didn’t know yet the specifics of what I could or could not eat yet, but she does know)

meant to say she does know now....

[Ennis-TX]

Meaning to reply much earlier...but issues with the site made it unable to be accessed for over 4 days. Topped with IRL issue. Seems most of thing topics were covered very well, but I wanted to point out that sometimes food intolerance and sensitives come and go and wax and wane even with a build up. I find some foods I can eat one day then not the next, so I have to limit my intake and plan things. While others I can not eat at all without getting very sick.
I also found many foods I have to take with enzymes, but I have some other issues. Some people do find that they can tolerate foods better with enzymes IE Lipase can help you to digest more fatty foods. This also helped with crazy cravings.
As mentioned earlier the vitamins and mineral supplements can be a big help, I still take some including magnesium for stress and muscle cramps, but found over the years I could really taper it off. Starting I had to take multiple doses staggered throughout the day. I found liquid based ones to be the best absorbed.
Funny about the coffee, I fell in love with Christopher bean coffee flavored coffee, I went decaf years ago as I normally take caffeine pills and needed to be able to manage my intake. I have found I had to stop coffee for the past 6 some odd months with I got a UC flare but that is something else.
 

[zenith12]

On 5/12/2020 at 6:02 PM, cyclinglady said:

Eat real food.  Be patient.  You have read my other posts, so I will not repeat myself.  

Hang in there!  ?‍♀️

 

what do u eat in a day? i knew dorittos was not gluten free. theres a lot of cross contamination in there. can u also tolerate very LITTLE processed anything? i ate some aldis certified gluten free tso chicken chunks and got the worse IBS. which of course  i got no sleep that night.  i looked on the ingredients first and didnt see alot of chemicals listed.  well never again. so do u just eat 1ingredient foods like me?  eggs, beef, cheese, advocados,  blueberies, bananas , peanut butter,  almonds, dates, potatoes? i don t  just eat any beef or blueberries though. i find farms. thanks    I can tolerate some Amys meals but am finding them less and less tASTY. i buy the India kitchen yummy rice meals.  I also eat those  brownie bars at aldis.  I feel 6pounds lighter from the other night.

[cyclinglady]

20 minutes ago, zenith12 said:

what do u eat in a day? i knew dorittos was not gluten free. theres a lot of cross contamination in there. can u also tolerate very LITTLE processed anything? i ate some aldis certified gluten free tso chicken chunks and got the worse IBS. which of course  i got no sleep that night.  i looked on the ingredients first and didnt see alot of chemicals listed.  well never again. so do u just eat 1ingredient foods like me?  eggs, beef, cheese, advocados,  blueberies, bananas , peanut butter,  almonds, dates, potatoes? i don t  just eat any beef or blueberries though. i find farms. thanks    I can tolerate some Amys meals but am finding them less and less tASTY. i buy the India kitchen yummy rice meals.  I also eat those  brownie bars at aldis.  I feel 6pounds lighter from the other night.

When my celiac disease is flaring (active), I consume fruit, veggies, rice, and meats that are well-cooked and easy-to-digest.  Think homemade stews and soups.  I will literally eat the same thing for breakfast, lunch and dinner for a week or longer.  Any food can be hard to digest when your gut is inflamed.  Once healed, I still try to consume real food.  I do purchase minimally processed foods like plain yogurt, milk, butter or cheese because I do not have a cow in my backyard!  Of course, I do cheat and have  been cheating during this pandemic.  By cheating, I mean consuming processed gluten-free items.  I never have deliberately consumed gluten.  

What did I eat today?  

I had plain nonfat yogurt.  High in protein.  I added some heavy cream because fat keeps me full and does not raise my blood sugar.  Then I sautéed some cabbage and added some Canadian bacon/ham for flavor. I made home made chocolate pudding (gluten free cornstarch) and I confess that I licked the cooled pot clean.  My kid asked for chocolate pudding.  How can I deny her?  She is studying hard.  I also had a few cups of coffee with half and half.  Dairy is no longer a problem for me.  

I made some hard-boiled eggs this morning.  Will put those on a salad for lunch.  If hungry, I can snack on eggs.  They are easy to transport too.  I make my own dressing using olive oil, white wine vinegar and mustard (labeled gluten-free).  Dinner is pot roast with carrots and potatoes.  That is in the crockpot on the back patio.  Snacks can be a cheese stick.  

I do have chips in the house.  I buy just plain potato or corn chips and prefer certified gluten-free or labeled gluten-free.  I make my own guacamole.  Hubby likes salsa, so I keep jars (labeled gluten-free) for him.  My daughter and I have garlic and onion intolerances, so no salsa for us unless I make it from scratch using just peppers.  I made nachos for them the other day.  

Amy’s does not have a great reputation for celiacs.  I do not buy the products, but I have heard complaints.  

Know that some celiacs are more sensitive that others.  This could mean they have additional food intolerances (like my onion and garlic intolerance), allergies (I am allergic to nuts), or they can not tolerate 20 ppm.  When the government came up with 20 ppm, it was based on a small study of 60 patients.  It was a start.  So, that means you have to figure out where you stand.  Are you super sensitive?  Only you can figure it out.  

I do better consuming Breyers gluten-free ice cream over cakes that contain Xanthan Gum. That stuff bothers me.  Krusteaz, makes a brownie mix that is delicious and does not contain Xanthan Gum.  You can find it at Walmart.  Add coffee instead of water and use butter.  They are to die for!  

So, my advice is to avoid processed foods as much as possible until you are feeling better.  Then experiment.  But know that junk food is junk food.  No one, even those without celiac disease,  should consume them often.  

 

[Ennis-TX]

I went with a bunch of scrambled eggs, with shredded bacon, and mashed up some avocados with them for breakfast.  Lunch was weird, I had some product from my store called SPERO Scramblit Egg replacement that was nearing best buy date so I used it with some real eggs and minced leftover steaks....sorta tasted like beef curry and eggs. I tend to fast from 1pm til 6:30am the next morning to let my gut take a break, sometimes longer. I have also had a couple of shakes of beef protein isolate, cocoa, and collagen protein
I also made a batch of gluten free and keto chocolate chip cookies out of pecan flour and swerve around lunch time eating a few and setting  10 aside for later. I bake when I am stressed out, decided to give a dozen away and offer the other 3 dozen on a sale.

When my gut really acts up I go to just eggs, fish, collagen protein powders, and tender fall apart crockpot meats. No spices and go really easy on the nuts/seeds. My diet is by default paleo, and keto and quite limited on veggies I can eat due to my UC.

 

[Captain Barnacles]

On 5/11/2020 at 4:44 PM, KittyButterfly said:

Hi. Guys, 

I really wanted to connect with you all. First post. As soon as got validated, I posted this new post. 
I’ve read countless, and I mean countless, posts around here and they have all just literally brightened up this path and set a light for me to walk in. So thank you for your contributions. To the point that I memorized some of your names on your profile. (The people who posted/commented often) Talking about you, IrishHeart, and cyclinglady..... Lol (lot of the posts I read were old threads)

I have been gluten free for a month and 10 days, and there were days where I (seriously) cried of joy because of how good i felt again. How I suddenly felt alive again, like a kid again. I can think again the way I used to, I can love those around with me the way I used to. I can be ME AGAIN!!! My love for singing, music, painting, art, piano, guitar, writing, fashion design, all came back that I thought my depression robbed me of..  I felt euphoric and peaceful and the anxiety was gone like it was never there… 

There were up and down days, more down than up. But this last week I had a big uphill. Everyday started to feel good when I hit the one month mark. Literally .
Then, I got a little mischievous and ate some Doritos cool ranch, when I knew there was a possibility I might react to the msg. (But I knew they were completely gluten free, otherwise would have never even looked at them, let alone pop them in my mouth)

As SOON as I ate them, I felt dizzy. Had to lay down, had the BIGGEST pressure in my head surround my whole head. Severe chest pain tightness that im still feeling now few days later. And my stomach has been making strange gurgling sounds I never heard it make for a few days now. And also my digestion is off. Not constipated but its just different. And the chest tightness/pressure would get worse every time I got emotional . My head felt numb all over and it was completely different than anything ive experienced. Like it puffed up from the inside of my head. 
I haven’t had energy since, and ive been triggered and saddened by everything. But it feels deeply in my heart, meaning I feel more deeply hurt in my heart. It’s so raw emotionally. 
And right after eating the Doritos, I had to lay down to sleep. And it was like a pressure was on my chest and head at same time holding me down, and I was SO OUT OF IT.
And continued to be out of it for days. 
Stomach made sounds an hour later that I never heard before.
At first I didn’t even think it was my stomach, it was hilariously weird. 
 Could not get up for the life  of me. Just wanted to sleep. 
Strange stomach pangs/pain/uncomfortableness 
Crying few hours later 
Big burp hours later , a few of them. 
And a few hours later, my stomach was making “pew pew” noises. Like those fake voice imitation gunshots. lol. 

Ive never been the type to feel gastrointestinal distress, only neurological. 

Then the next day, I felt like $%#@. (You know what I mean, the four letter curse word starting with S that stinks literally and figuratively ...yayyyyy. ) 

So I went from crying from joy to crying like someone died. (My moms direct quote as she came running out of her room to mine and shouting  “Cece, are you okay? I heard you crying. Did someone we know or you know die?” She said frantically in a very worried and loud tone. 
She said it was so bad that it was the only thing she could think of. (keep in mind she has death in her mind because unfortunately, we are in N.Y.C, which has very high cases of mortality related to this new pandemic)

Now, let me say that I am a crybaby. BUT I have NEVER cried like that in my life. And 100% of the times I cry, NO ONE sees or hears it. I keep it to myself. Im an introvert and also a highly sensitive person (HSP) I read the book by Elaine N. Aron, it was great. Also I hated the attention I would get from crying as my mom would not leave me alone and worry so much if she heard me crying, lol. I know, its because she cares. But just saying. So for me to cry that loud, I couldn’t control it.. . 
I dont know what happened!!! I wasn’t thinking of anything, I just started bawling and I made crying noises that I never made in my life to the point of waking up my poor mom at 3- 4:00 a.m. I was surprised at my own crying voice. “What the hell?” Were my thoughts. 

So I guess what im trying to say is, I am so confused. I must be really sensitive to the ingredients in Doritos cool ranch. 

I have to add I am not lactose intolerant, I do not react to corn or soy. 
recently turned 26 yrs old female as of this past January 21st, Capricorn/aquarius cusp, anyone here cusp as well? sorry if im losing you...lol
I only react to gluten (obviously) silly me...
honey (thats new since gluten-free) 
potatoes (also new since gluten-free) 
turkey bacon (again, new since gluten-free) 
you guys were right when you said new intolerances show up. Boy, was I surprised. !!!!!!!!
Ive kept a food journal both digital and physical notepad.. and im EXTREMELY detailed on it… 

I guess what Im trying to say is I just feel like I need some kind of support from those who KNOW what it feels like to feel the way we do. And how it has prohibited us at some point from living normal lives. 

And I guess what im trying to say is I wonder if it was the MSG that did this, or the Maltodextrin in it? 

I guess what im trying to say is, I kind of feel lonely in this. 
BUT…….I am so determined and so passionate and there is nothing that I wouldn’t do to feel normal and the way I used to feel years ago before all of this started. 
There is no setback that will stop me. 
NOTHING that will make me consider not being gluten free and heal. 
I dont care if its the best tasty thing in the world, there is no price for my wellbeing. For my soul to thrive and vibrate.. 

P.S- whats up with this insomnia since gluten-free? Ive always been like a bear hibernating sleeping hours and hours.. 

also...whenever I get glutuned, suddenly Im Ravenous in hunger. its like an insatiable hunger... and I just want to devour anything........... except gluten containing foods ...(angel face) ........so whats up with that?

also I got excited there was one person "following" this post, but then I clicked and realized its just me. aye yay aye. I can't catch a break. lol. (just kidding... kind of)

Thank you for your helpful energy!!
 

 

VGKC Limbic Encephalitis ?

[Captain Barnacles]

Potatoes reaction could actually be to high methoxyl pectin. Citrus might be a problem as well if that is the case, esp the pith, green bananas, esp lady finger, jam. HM Pectin breaks down to methanol, then to formic acid which exacerbates the immune system.

[knitty kitty]

It's glycoalkaloids in potatoes.....

 

https://www.ncbi.nlm.nih.gov/pubmed/12479649

 

[zenith12]

On 5/14/2020 at 2:58 PM, cyclinglady said:

When my celiac disease is flaring (active), I consume fruit, veggies, rice, and meats that are well-cooked and easy-to-digest.  Think homemade stews and soups.  I will literally eat the same thing for breakfast, lunch and dinner for a week or longer.  Any food can be hard to digest when your gut is inflamed.  Once healed, I still try to consume real food.  I do purchase minimally processed foods like plain yogurt, milk, butter or cheese because I do not have a cow in my backyard!  Of course, I do cheat and have  been cheating during this pandemic.  By cheating, I mean consuming processed gluten-free items.  I never have deliberately consumed gluten.  

What did I eat today?  

I had plain nonfat yogurt.  High in protein.  I added some heavy cream because fat keeps me full and does not raise my blood sugar.  Then I sautéed some cabbage and added some Canadian bacon/ham for flavor. I made home made chocolate pudding (gluten free cornstarch) and I confess that I licked the cooled pot clean.  My kid asked for chocolate pudding.  How can I deny her?  She is studying hard.  I also had a few cups of coffee with half and half.  Dairy is no longer a problem for me.  

I made some hard-boiled eggs this morning.  Will put those on a salad for lunch.  If hungry, I can snack on eggs.  They are easy to transport too.  I make my own dressing using olive oil, white wine vinegar and mustard (labeled gluten-free).  Dinner is pot roast with carrots and potatoes.  That is in the crockpot on the back patio.  Snacks can be a cheese stick.  

I do have chips in the house.  I buy just plain potato or corn chips and prefer certified gluten-free or labeled gluten-free.  I make my own guacamole.  Hubby likes salsa, so I keep jars (labeled gluten-free) for him.  My daughter and I have garlic and onion intolerances, so no salsa for us unless I make it from scratch using just peppers.  I made nachos for them the other day.  

Amy’s does not have a great reputation for celiacs.  I do not buy the products, but I have heard complaints.  

Know that some celiacs are more sensitive that others.  This could mean they have additional food intolerances (like my onion and garlic intolerance), allergies (I am allergic to nuts), or they can not tolerate 20 ppm.  When the government came up with 20 ppm, it was based on a small study of 60 patients.  It was a start.  So, that means you have to figure out where you stand.  Are you super sensitive?  Only you can figure it out.  

I do better consuming Breyers gluten-free ice cream over cakes that contain Xanthan Gum. That stuff bothers me.  Krusteaz, makes a brownie mix that is delicious and does not contain Xanthan Gum.  You can find it at Walmart.  Add coffee instead of water and use butter.  They are to die for!  

So, my advice is to avoid processed foods as much as possible until you are feeling better.  Then experiment.  But know that junk food is junk food.  No one, even those without celiac disease,  should consume them often.  

 

Hello, wow  60 patients? Wow i didn't know that. You are knowledgeable.  What do you mean celiac disease FLARING up?  Can my intestines and yours flare up EVEN when we are eating the right things?   I ate some TSO chicken (certified gluten-free), just the chunks, and i felt like i got glutened at  1 30am. I started bloating right after i ate them like at  6pm but didnt think anything of it.  Then when i laid down to bed at 1 am  ,  at  1 30  I got that rush of shakey energy all over me that my bowels were about to be cleaned out. Then boom i went to the bathroom like  10 times!!!!!!!   Did i get glutened???    I did NOT feel like i was gonna throw up like the first time i got glutened. And that time i only went to the bathroom  twice, but then it screwed  up  my weak pitutary gland for 6 weeks later. I have  "adrenal fatigue".  Well mine is PIT fatigue.  So when i got glutened by the chicken nuggets, the only symptoms where that shakey cold chill feeling and severe IBS. 

Are some chemicals in the food gluten mimickers? I looked and didnt see a lot of chemicals listed , none at all , but there are things in the food they don't list on the ingredients.  The gluten in it should have been 10ppm  or less.  I couldn't have been from the rice flour. I eat tons of rice and don't react.  Well i will NEVER buy that General TSO chicken from Aldis.  Thanks for telling me what you eat. Like you sometimes I down some coconut oil. (for fat). And I try to eat the same stuff over and over and over again and only eat what I already know. And try not to try any NEW certified gluten-free items. I just really don't trust any processed item.   Hey you mentioned you make your own dressing, I had bought the Aldis buttermilk ranch dressing ever sense i knew i couldn't touch gluten and I never had a reaction. IT does say gluten-free on it.  I think you said you can't do xantham gum. I can't remember if it is in there or not.

tids bug 

[cyclinglady]

24 minutes ago, zenith12 said:

Hello, wow  60 patients? Wow i didn't know that. You are knowledgeable.  What do you mean celiac disease FLARING up?  Can my intestines and yours flare up EVEN when we are eating the right things?   I ate some TSO chicken (certified gluten-free), just the chunks, and i felt like i got glutened at  1 30am. I started bloating right after i ate them like at  6pm but didnt think anything of it.  Then when i laid down to bed at 1 am  ,  at  1 30  I got that rush of shakey energy all over me that my bowels were about to be cleaned out. Then boom i went to the bathroom like  10 times!!!!!!!   Did i get glutened???    I did NOT feel like i was gonna throw up like the first time i got glutened. And that time i only went to the bathroom  twice, but then it screwed  up  my weak pitutary gland for 6 weeks later. I have  "adrenal fatigue".  Well mine is PIT fatigue.  So when i got glutened by the chicken nuggets, the only symptoms where that shakey cold chill feeling and severe IBS. 

Are some chemicals in the food gluten mimickers? I looked and didnt see a lot of chemicals listed , none at all , but there are things in the food they don't list on the ingredients.  The gluten in it should have been 10ppm  or less.  I couldn't have been from the rice flour. I eat tons of rice and don't react.  Well i will NEVER buy that General TSO chicken from Aldis.  Thanks for telling me what you eat. Like you sometimes I down some coconut oil. (for fat). And I try to eat the same stuff over and over and over again and only eat what I already know. And try not to try any NEW certified gluten-free items. I just really don't trust any processed item.   Hey you mentioned you make your own dressing, I had bought the Aldis buttermilk ranch dressing ever sense i knew i couldn't touch gluten and I never had a reaction. IT does say gluten-free on it.  I think you said you can't do xantham gum. I can't remember if it is in there or not.

tids bug 

A flare up is the same as  your celiac disease being active.  It is active when you are first diagnosed.  It can take time to deactivate.  Gluten is the trigger, but once set off, it is up to your body (immune system) to deactivate (stop attacking your small intestine).  For a few, healing can occur within a few weeks, but for most it takes up to a year or longer.  It can be reactivated if you accidentally consume gluten.  

Why so long to heal?  The gluten-free diet takes time to learn.  People will make mistakes.  It happens.  You just need to keep moving forward and learn from that mistake until avoiding gluten become normal.  The other reason why people take longer to heal is that they often have additional food intolerances unique to them.  Remember, everyone is different.  Maybe your body is not happy with chicken right now.  Maybe you should try cooking just a plain piece of fresh chicken.  Maybe the processed Aldi’s chicken contained ingredients that your body does not like.  I did try to look it up, but could not find the ingredient list.  For me, if it contains onion or garlic, I can not eat it.   And again this is processed.  This is why all the forum old timers recommend real food for a while.  You do not have to tax your brain trying to read labels.  It is just plain easier.  This works well when you feel ill.  Who can think when you feel bad?  

If you are new to cooking, try watching some YouTube videos.  I could have bought a family pack of chicken breasts with ribs at my local market  for less.  Save money and feel better.  Just because it is certified gluten-free does not mean it works for you. ?

[zenith12]

On 5/24/2020 at 1:28 PM, cyclinglady said:

A flare up is the same as  your celiac disease being active.  It is active when you are first diagnosed.  It can take time to deactivate.  Gluten is the trigger, but once set off, it is up to your body (immune system) to deactivate (stop attacking your small intestine).  For a few, healing can occur within a few weeks, but for most it takes up to a year or longer.  It can be reactivated if you accidentally consume gluten.  

Why so long to heal?  The gluten-free diet takes time to learn.  People will make mistakes.  It happens.  You just need to keep moving forward and learn from that mistake until avoiding gluten become normal.  The other reason why people take longer to heal is that they often have additional food intolerances unique to them.  Remember, everyone is different.  Maybe your body is not happy with chicken right now.  Maybe you should try cooking just a plain piece of fresh chicken.  Maybe the processed Aldi’s chicken contained ingredients that your body does not like.  I did try to look it up, but could not find the ingredient list.  For me, if it contains onion or garlic, I can not eat it.   And again this is processed.  This is why all the forum old timers recommend real food for a while.  You do not have to tax your brain trying to read labels.  It is just plain easier.  This works well when you feel ill.  Who can think when you feel bad?  

If you are new to cooking, try watching some YouTube videos.  I could have bought a family pack of chicken breasts with ribs at my local market  for less.  Save money and feel better.  Just because it is certified gluten-free does not mean it works for you. ?

Thanks so much. So i think somebody answered this question before but I am still a bit confused. IF that General TSO chicken had 9PPM of  gluten in it , is it per serving? SO since i ate probably at least two servings I was exposed to more gluten? I do NOT know how to cook. So i do just eat paleo style and only one ingredient foods.

For lunch I will eat a bowl of hamburger, with cheese, (CABOT), bowl of blueberries, some almonds, piece of UDIS gluten-free raisin bread. I make my meals total 600 calories. I should have never introduced anything NEW to my diet. I do fine with the Aldis gluten-free cookies, gluten-free brownies, gluten-free Susie Gs chocolate wafers, gluten-free  Sweet Street brownies.  All certified. Have u got glutened on certified gluten-free products before?  I also eat bananas, dates, potatoes, and p-nut butter. But I only buy what i know and have been eating and hadn' t been glutned by it .I wanna buy some almond butter that says gluten free on it but i am afraid to try NEW things that i hadn't eaten AFTER i knew I had celiacs. That Jasons brand p-nut butter at wal mart  and the p-nut butter at Aldis i do fine. I can't remember if that is the name or not.  Wow and i saw all these cheese cakes at Aldis, certified gluten-free but I am afraid to try those. Why do you get blood in the stool sometimes? I don't anymore. But over 6 months ago i do remember seeing a couple drops of blood in stool from eating gluten. Because the colon was inflamed?  I did research and that can be one of the symptoms of celiacs. I DONT anymore though.  My colon is nice and calm right now.  lol  The paleo diet is working for me  but I am losing a little weight.  I can control that by eating MORE brownies. My body really doesn't like a lot of sugar though. And since i got glutened on that TSO chicken on May 13th, I hadn't touched chocolate.    Thanks

CAN YOUR HEALING TIME CHANGE WITH EA GLUTENING AND SYMPTOMS BE SLIGHTLY DIFFERENT EA TIME?

[zenith12]

On 5/14/2020 at 2:58 PM, cyclinglady said:

When my celiac disease is flaring (active), I consume fruit, veggies, rice, and meats that are well-cooked and easy-to-digest.  Think homemade stews and soups.  I will literally eat the same thing for breakfast, lunch and dinner for a week or longer.  Any food can be hard to digest when your gut is inflamed.  Once healed, I still try to consume real food.  I do purchase minimally processed foods like plain yogurt, milk, butter or cheese because I do not have a cow in my backyard!  Of course, I do cheat and have  been cheating during this pandemic.  By cheating, I mean consuming processed gluten-free items.  I never have deliberately consumed gluten.  

What did I eat today?  

I had plain nonfat yogurt.  High in protein.  I added some heavy cream because fat keeps me full and does not raise my blood sugar.  Then I sautéed some cabbage and added some Canadian bacon/ham for flavor. I made home made chocolate pudding (gluten free cornstarch) and I confess that I licked the cooled pot clean.  My kid asked for chocolate pudding.  How can I deny her?  She is studying hard.  I also had a few cups of coffee with half and half.  Dairy is no longer a problem for me.  

I made some hard-boiled eggs this morning.  Will put those on a salad for lunch.  If hungry, I can snack on eggs.  They are easy to transport too.  I make my own dressing using olive oil, white wine vinegar and mustard (labeled gluten-free).  Dinner is pot roast with carrots and potatoes.  That is in the crockpot on the back patio.  Snacks can be a cheese stick.  

I do have chips in the house.  I buy just plain potato or corn chips and prefer certified gluten-free or labeled gluten-free.  I make my own guacamole.  Hubby likes salsa, so I keep jars (labeled gluten-free) for him.  My daughter and I have garlic and onion intolerances, so no salsa for us unless I make it from scratch using just peppers.  I made nachos for them the other day.  

Amy’s does not have a great reputation for celiacs.  I do not buy the products, but I have heard complaints.  

Know that some celiacs are more sensitive that others.  This could mean they have additional food intolerances (like my onion and garlic intolerance), allergies (I am allergic to nuts), or they can not tolerate 20 ppm.  When the government came up with 20 ppm, it was based on a small study of 60 patients.  It was a start.  So, that means you have to figure out where you stand.  Are you super sensitive?  Only you can figure it out.  

I do better consuming Breyers gluten-free ice cream over cakes that contain Xanthan Gum. That stuff bothers me.  Krusteaz, makes a brownie mix that is delicious and does not contain Xanthan Gum.  You can find it at Walmart.  Add coffee instead of water and use butter.  They are to die for!  

So, my advice is to avoid processed foods as much as possible until you are feeling better.  Then experiment.  But know that junk food is junk food.  No one, even those without celiac disease,  should consume them often.  

 

With your garlic intolerance can you eat it cooked but not raw?

With me if i eat raw garlic like i used to on my potato, i get HORRID cramps almost like horrid menstrual cramps or something that normally lasts a good hour or longer. I realized i had a garlic intolerance finally and also if i eat PINTO beans, that will cause a 'glutening' like experience. I could probably eat like 0.5 cup but if i eat MORE, its HELL. So i will just never eat PINTO beans or garlic again. I been lazy and need to grate my coconuts so i can eat the meat. I just been lazy. lol  With coconuts you never know what you are gonna get. I got the most fragrant one ontime at wal mart. My god what a smell. You can't trust the THAI ones , they are always moldy. So i just stick with the old hairy ones.

[cyclinglady]

3 hours ago, zenith12 said:

With your garlic intolerance can you eat it cooked but not raw?

With me if i eat raw garlic like i used to on my potato, i get HORRID cramps almost like horrid menstrual cramps or something that normally lasts a good hour or longer. I realized i had a garlic intolerance finally and also if i eat PINTO beans, that will cause a 'glutening' like experience. I could probably eat like 0.5 cup but if i eat MORE, its HELL. So i will just never eat PINTO beans or garlic again. I been lazy and need to grate my coconuts so i can eat the meat. I just been lazy. lol  With coconuts you never know what you are gonna get. I got the most fragrant one ontime at wal mart. My god what a smell. You can't trust the THAI ones , they are always moldy. So i just stick with the old hairy ones.

No matter what the form, I can not consume garlic.  

[cyclinglady]

3 hours ago, zenith12 said:

Thanks so much. So i think somebody answered this question before but I am still a bit confused. IF that General TSO chicken had 9PPM of  gluten in it , is it per serving? SO since i ate probably at least two servings I was exposed to more gluten? I do NOT know how to cook. So i do just eat paleo style and only one ingredient foods.

For lunch I will eat a bowl of hamburger, with cheese, (CABOT), bowl of blueberries, some almonds, piece of UDIS gluten-free raisin bread. I make my meals total 600 calories. I should have never introduced anything NEW to my diet. I do fine with the Aldis gluten-free cookies, gluten-free brownies, gluten-free Susie Gs chocolate wafers, gluten-free  Sweet Street brownies.  All certified. Have u got glutened on certified gluten-free products before?  I also eat bananas, dates, potatoes, and p-nut butter. But I only buy what i know and have been eating and hadn' t been glutned by it .I wanna buy some almond butter that says gluten free on it but i am afraid to try NEW things that i hadn't eaten AFTER i knew I had celiacs. That Jasons brand p-nut butter at wal mart  and the p-nut butter at Aldis i do fine. I can't remember if that is the name or not.  Wow and i saw all these cheese cakes at Aldis, certified gluten-free but I am afraid to try those. Why do you get blood in the stool sometimes? I don't anymore. But over 6 months ago i do remember seeing a couple drops of blood in stool from eating gluten. Because the colon was inflamed?  I did research and that can be one of the symptoms of celiacs. I DONT anymore though.  My colon is nice and calm right now.  lol  The paleo diet is working for me  but I am losing a little weight.  I can control that by eating MORE brownies. My body really doesn't like a lot of sugar though. And since i got glutened on that TSO chicken on May 13th, I hadn't touched chocolate.    Thanks

CAN YOUR HEALING TIME CHANGE WITH EA GLUTENING AND SYMPTOMS BE SLIGHTLY DIFFERENT EA TIME?

Celiac disease is like a chameleon and symptoms can change.  I think you were diagnosed by a Naturopath and I am not sure your tests (saliva, if I recall)  were the standard blood tests.   Blood in your  stool can be something serious.  You should see a medical doctor.  Know that Ulcerative Colitis or Crohn’s is commonly linked with celiac disease.  I would hate for you to have been misdiagnosed.  

I have never been exposed to gluten by consuming certified gluten free foods.   

[GFinDC]

Hmm, I don't think a paleo diet includes brownies?

Anything with lots of ingredients should be off the menu if you are trying to identify food intolerances.  That includes things like brownies, cookies, etc.  You can always add processed foods into your diet after your digestive system is in good shape.  But getting it to good shape requires some serious effort to reduce possible problem foods.

[zenith12]

On 5/29/2020 at 6:06 PM, cyclinglady said:

Celiac disease is like a chameleon and symptoms can change.  I think you were diagnosed by a Naturopath and I am not sure your tests (saliva, if I recall)  were the standard blood tests.   Blood in your  stool can be something serious.  You should see a medical doctor.  Know that Ulcerative Colitis or Crohn’s is commonly linked with celiac disease.  I would hate for you to have been misdiagnosed.  

I have never been exposed to gluten by consuming certified gluten free foods.   

Yes a saliva test to test for hormones and for what ever reason tested for the two protein (wheat) antibodies. I wasn't having a lot of symptoms back then but was having symptoms.(2017). The scale went to  15 and i was 14. She knew it was a big thing and told me to never eat gluten again. And gave me a list of what i could eat.   I didn't pay attention to her.  Then all of a sudden i started barfing sept of 2019 upon ingesting a bunch of gluten. Then it was Nov 2019 i finally gave it up. Because i knew she was right finally. And at first i thought I was gluten intolerant and a month later after doing research i realized i had celiacs. 

G I does NOT show up on a test. Well mine did. There is a lot of disinformation out there. Saliva tests work just fine. You don't have to take 5 tests like the docs say and i stay clear of any mainstream doc.

But yes the blood went away once i stopped eating gluten.

If i ever see it again i will get checked out.  So can IBS feel like a gluteneing, but you not be glutened?  Like my body didn't like the processed nature of the junk food General TSO chicken, OR  can preservatives be a gluten mimicker? I will find those ingredients for you.

Basically corn starch, rice flour,  corn flour, potato starch, corn meal. 

 

There were no chemicals listed. The FDA does allow for chemicals in the food

and it NOT be listed. 

How come i didn't feel like i was going to throw up? but i did crap at least 11 times.  It felt like a glutening except for that symptom.

Or with celiacs can  IBS get triggered and it NOT be a glutening??  Thanks so much.

When i got glutened on the wal mart chips that was not certified it was basically those Salsa Verde chips that did it and not the  Siracha Hot chips. The salsa verde had much more ingredients too.   Where do i go to get tested for  intolerances like xanthum gum or whatever?

I already know, gluten, pinto beans,  caffeine, alchohol, raw garlic,  but i need to know if i am alergic to anything else.     Thanks 

Do i just go to an alergy doc?