Went From Crying of Joy Feeling Better to a SERIOUS Breakdown

[cyclinglady]

You can have more than one illness.  To make matters harder, celiac disease symptoms can change.  While you might vomit after a gluten exposure, the next time, you might just get bloating or constipation.    It is why it can be hard to tell if you actually had a gluten exposure.  

In my case, when I was pretty sure I had a gluten exposure and my symptoms were lasting beyond a few weeks, I went to my GI for follow-up antibodies testing.  Usually my DGP IgA was elevated and that confirmed that I was not going crazy and that I actually had a gluten exposure.  The times I had gluten exposures usually involved eating out despite picking gluten friendly restaurants, grilling the manager and head chef, etc.  Now, I choose to eat at just dedicated gluten-free restaurants.  It makes it easier and safer for me.  

IBS can can be a totally separate issue from celiac disease.  

When I was diagnosed, I had no GI symptoms.  I consumed lots of gluten.  My symptom was anemia.  

It can be hard to determine what you have based on symptoms.  The last time I thought my celiac disease was active, I was wrong.  I actually had another illness, autoimmune gastritis.  

[GFinDC]

On 5/13/2020 at 9:01 AM, KittyButterfly 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 doesn't 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)

Hi Kittybutterfly,

I can drink coffee for a few weeks but then it starts to get to me.  I get so I feel very tired and weak if I don't drink it constantly.  Like falling down weak almost.  So it just isn't worth drinking coffee for me.

Hopefully your GI system will settle down after you've been gluten-free for 3 or 4 months.  But honestly it will probably be longer like 6 months to a year.   There are several issues affecting healing.  Any tiny amount of cross contamination will re-energize the immune system attack.  So minor amounts of gluten are bad.  Also, as your gut lining regrows it provides a dramatically increased surface area for bacteria to inhabit.  If all those bacteria are beneficial that's fine, but sometimes they aren't.  So people can develop a gut dysbiosis that can cause GI system upset.  Also, some people develop additional food intolerances that can cause problems.   Common food problems are dairy and oats.  But any food including all of the top 10 food allergens can be problems.

There are some frequently found vitamin issues like vitamin D and B vitamins.  There are also a few minerals that may be low.  Low levels of these vitamins and minerals can slow healing and make you feel bad.  A doctor can check your vitamin/mineral levels.

I don't know if you heard the saying it's a marathon not a sprint?  That sure applies to recovery from  celiac disease damage.

Edited June 1, 2020 by GFinDC

[MisterSeth]

corn is one of the most common allergies and you may react to it differently depending on its form. corn that has been dehydrated gives me diarrhoea personally. I can handle the corn syrup and corn starches, which probably have all the proteins removed. I can also eat corn on the cob and even canned corn. popcorn, doritos, and tortilla chips go through my body like they're nothing but cellulose skins though.

[NicoleMason]

On 5/11/2020 at 12:44 AM, 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!!
 

 

Hey!! I have almost the same symptoms and share in your pain.  I've been eating gluten free for three years and have learned to take it one day at a time.

Some big tips I'd like to share- Turmeric helps gluten attacks, so does a plain sweet potato (all that fiber seems to push the gluten out quicker), try your best to be active (I know, moving is the last thing you want to do. But trust me, it helps), only eat certified gluten free foods, produce and meat (steaks, chicken breast, fish, etc)  is your best friend.

Cutting out dairy has also helped me significantly. I'm not sure if it's related (I may have inherited my dad's dairy sensitivity) but worth looking into if nothing else works. 

My husband got this book for me for Christmas and it has been a huge help. You may like it too! 

https://www.amazon.com/Gluten-My-b%$@#-Ridiculousness-Gluten-Free/dp/1617691577

Wishing you the best of luck and I promise it gets easier from here. You can do it!!! 

 

[Heather Cardwell]

On 5/11/2020 at 2:00 PM, knitty kitty said:

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

?

(Virgo, INFJ) 

This was SO helpful!  Thank you!!