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Hi,

About 4 months ago I was diagnosed with Celiac Disease. I have been transitioning to a gluten free diet but only recently discovered the need to cut out potential gluten contamination. I started this process about a week ago and I've had the worst week of my life.

First I found out I was being glutened by my pots/pans/cookware. Replaced everything in my kitchen after I cleaned every possible surface. My boyfriend is going gluten free with me so we got rid of all good that could be contaminated as well. He does eat potentially gluten contaminated food outside of the home so we're both very cautious about kissing. We wait a few hours and then he brushes his teeth before kissing. Personal care products, all gluten free as well.

As I was vegan (for about 3 years) before celiac diagnosis, I'm currently sticking with my vegan lifestyle. When I was a child I was diagnosed with lactose intolerance (which is linked to celiac disease, I understand a lot of people with the disease also suffer from lactose intolerance) and transitioned to a vegan diet. Also would cry about having to eat meat growing up (not just a year, but until I was about 13) so veganism seemed like the right choice.

I believe I experienced celiac symptoms for a few years until I was diagnosed. A few times I've experienced excruciating abdominal pain and not being able to eat anything without having diarrhea. Most of the time though was when I would eat things like garlic bread, or would treat myself to a meal in a neighboring city a few hours away; I would experience lactose intolerance symptoms, my body would act like I at dairy when I certainly did not while eating at strictly vegan restaurants.

I'm willing to sacrifice my being vegan and eat meat if necessary, though hesitate due to some people having adverse effects to meat after not eating it for so long.

I've stopped eating any/all processed foods because I've read up on transglutaminase tissue ('meat glue') and the potential of the enzymes used to process factory made gluten free food.

So I'm basically eating fruits and veggies. Not eating potatoes, rice, oats, legumes, corn, soy trying to rule out anything that could be causing my body to react this way. My understanding is that these foods are difficult for the damaged small intestine to digest.

I'm currently eating things like broccoli, mushrooms, bananas, apples, brussel sprouts, green beans, berries, carrots, etc. All from an organic/reputable store and sources. Not adding any spices to these even though I bought gluten free spices. I'm too afraid to risk it.

It's been almost 48 hours since I've had my typical 'gluten attack' consisting of dizziness, increased heart rate, anxiety, everything visually being kinda laggy but also fast, diarrhea, abdominal pain where my small intestine is located, swelling of my body, inflammation of the small intestine.

I'm afraid to eat or drink anything for fear of having a gluten attack. Been fatigued due to lack of food but I feel no hunger in my tummy. I only eat when the physical symptoms of hunger set in and I start getting extremely dizzy. When I eat I feel better, until the diarrhea hits me like 30-40 minutes later.

I ate broccoli and mushrooms fried up with half an onion and some garlic yesterday. That gave me diarrhea.

Today I ate just broccoli with some garlic and that gave me diarrhea. Then I ate some plain potatoes (figured I'd give them a shot even though I haven't been eating them, cause why not) fried in a bit of gluten free olive oil with a sprinkle of gluten free salt. Gave me diarrhea.

Trying to stay hydrated is difficult but I'm doing my best. But I don't even know what to do. Is my body so permanently damaged from celiac that it can't process any food? Am I having gluten withdrawal? Am I being glutened somehow? I cleaned my whole kitchen for like 3 hours the other day. My dishes get washed in the dishwasher but if I use any clean dish I wash the s$#& out of it with a brand new sponge I got when I bought new pots/pans. My cat eats a gluten free diet and his litter is gluten free. I've seldom kissed my boyfriend on the lips for the past few days. Only after we wake up and he brushes his teeth.

I'm afraid of becoming malnourished. Do I have to just keep eating and suffer through these symptoms? I've called out of work my last two shifts and will have to go back the day after tomorrow and I don't know what I'm going to do.

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Celiac.com Sponsor (A8):

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Have you looked into SIBO? Have you looked into the Foodmap diet? In your vegan diet you are getting a lot of complex carbs, things hard to break down. Have you counted the grams of fiber you must be getting daily with all those veggies? Maybe you are getting too much.

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Also, 48 hours on a gluten-free diet isn’t nearly long enough to eliminate symptoms caused by gluten sensitivity or celiac disease. With celiac disease full healing can take up to two years, depending on the gut damage level. 

I do remember raw garlic causing me issues during my healing time frame, but I could eat it after. Keep a food diary and you may need to eliminate more foods, at least temporarily.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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The elimination diet is a good route, garlic and onions give me issues when my gut is not happy (celiac or ulcerative colitis), high fiber foods and veggies in general were hard with my intestines causing gas and pain....I mean I was fine with smooth almond butter but rough veggies or just chewing nuts did not bode well. Are you fine with eggs? Not a meat....and tech not fertilized so some vegetarians find them acceptable. Anyway, eggs are my go to food for ease of digestion. Others find stuff like a plain baked sweet potato, or a rice gruel to be easy. You might look at taking some digestive enzymes also to help break down foods more. This will make it easier on your gut and get you more nutrients out of what you eat.

Have you had any of your vitamin levels checked? I assume if you were vegan you know about supplementing, B-vitamins and eating to obtain a good nutrient profile. But with the damaged villi that come with celiac disease you might need to supplement to keep your levels up.

The paranoia is real, some say it is from nutrient deficiencies, I attributed it to that and a almost PTSD like reaction of finally knowing what was making me sick. Figuring it all out and healing takes time. I think my last exposure left me with random diarrhea for over a month (Again I have both UC and Celiac so might be be a me thing) My body becomes much more picky after anything flares/exposures. If you want to feel safer,  you can try getting some cheap microwave cookware like nordicware grill plates with splatter covers, rice cookers, steamers, and omelette makers. Cheaper then pans and you can throw if you mess up. Also good for when you have to travel and cook your own food in some places.

Staying hydrated with the issues, I like Ultima Electrolyte powder mixes. There is another drink that was intended for people with diarrhea and damaged intestines for people on chemo (chemo destroys your villi also). I forgot the name at the moment bit it was also supposed to help healing.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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Oi!  Stop eating fried foods!

Fats are hard to digest when you have damaged villi.  

Think soups and stews with veggies cooked until soft.  You might consider adding chicken broth or beef bone broth to your diet to help with healing.  If you're not combining grains and legumes to make complete proteins, consider adding meat back into your diet.  Your body needs protein to replace those damaged villi.

Consider taking a B-Complex vitamin to ensure you're getting some of the vitamins you're not absorbing because of the diarrhea.  

Hope this helps! 

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Everything visually being kind of laggy...

That's the exact thing I've been experiencing daily for months even after being gluten free for several months.. it's improved but never gone away yet 100 percent..  your the first person I've seen describe it exactly as I would describe it . 

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One common mistake newly-diagnosed Celiacs do (I did it too) is to believe that there is only gluten in foods. There are many other things that can end up in your mouth that contains gluten. Makeup, lipbalms, some toothpastes, that glue on envelopes.

And please, try to eat more fish and meat. You're putting a sh*tload of fibers into that damaged small intenstine.


If the doctor mention IBS, run. 

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13 hours ago, trents said:

Have you looked into SIBO? Have you looked into the Foodmap diet? In your vegan diet you are getting a lot of complex carbs, things hard to break down. Have you counted the grams of fiber you must be getting daily with all those veggies? Maybe you are getting too much.

Thank you. I looked up the foodmap diet and I agree that I'm getting too many complex carbs. And probably too much fiber. I will work on balancing this out as this was something that was overlooked.

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11 hours ago, Scott Adams said:

Also, 48 hours on a gluten-free diet isn’t nearly long enough to eliminate symptoms caused by gluten sensitivity or celiac disease. With celiac disease full healing can take up to two years, depending on the gut damage level. 

I do remember raw garlic causing me issues during my healing time frame, but I could eat it after. Keep a food diary and you may need to eliminate more foods, at least temporarily.

I did read it could take a couple years for the gut to fully recover but when I started eating a mostly gluten free diet a few months ago it helped with the diarrhea I had then, pretty quickly. So I guess I figured the same things would happen when I cut out all traces of gluten.

And thank you for letting me know about garlic and onions. I will try eliminating those to see if it helps. I see how those could be harsh on the gut and difficult to process. I have though about the food diary but honestly I've been eating one meal a day so it makes it easy enough to track mentally. When I start eating more I will definitely be tracking this.

Thank you again for pointing my mind in the right direction.

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Hi Vapor,

If you are only gluten-free for a few days then continued symptoms is normal.  It can take months for symptoms to subside for some people.  That doesn't mean you can't try to improve things though!

Psyillium husks are a neutral fiber product that can help with bulking up stool.  You can buy them plain or in Metamucil etc.  Yerba Prima brand sells plain psyillum husks.  Just mix a tablespoon or so in a soup or a glass of water to drink.  They can be put in any foods or sprinkled on.

Digestive enzymes may help and also betaine HCL with pepsin.  If you try meat after a long time the betaine HCL may be a real good idea.  It can help digest protein.

You may also want to consider eliminating soy.  Vegans tend to eat a lot of soy and soy is a top 8 allergen in the USA.  People with celiac often enough develop food intolerances beyond wheat, rye and barley.  Oats are a big one.

Eating just once a day is a good idea.  It's also good to eat the same things each day for a while to narrow down problems.  May be a little boring but it is effective.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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9 hours ago, Ennis_TX said:

The elimination diet is a good route, garlic and onions give me issues when my gut is not happy (celiac or ulcerative colitis), high fiber foods and veggies in general were hard with my intestines causing gas and pain....I mean I was fine with smooth almond butter but rough veggies or just chewing nuts did not bode well. Are you fine with eggs? Not a meat....and tech not fertilized so some vegetarians find them acceptable. Anyway, eggs are my go to food for ease of digestion. Others find stuff like a plain baked sweet potato, or a rice gruel to be easy. You might look at taking some digestive enzymes also to help break down foods more. This will make it easier on your gut and get you more nutrients out of what you eat.

Have you had any of your vitamin levels checked? I assume if you were vegan you know about supplementing, B-vitamins and eating to obtain a good nutrient profile. But with the damaged villi that come with celiac disease you might need to supplement to keep your levels up.

The paranoia is real, some say it is from nutrient deficiencies, I attributed it to that and a almost PTSD like reaction of finally knowing what was making me sick. Figuring it all out and healing takes time. I think my last exposure left me with random diarrhea for over a month (Again I have both UC and Celiac so might be be a me thing) My body becomes much more picky after anything flares/exposures. If you want to feel safer,  you can try getting some cheap microwave cookware like nordicware grill plates with splatter covers, rice cookers, steamers, and omelette makers. Cheaper then pans and you can throw if you mess up. Also good for when you have to travel and cook your own food in some places.

Staying hydrated with the issues, I like Ultima Electrolyte powder mixes. There is another drink that was intended for people with diarrhea and damaged intestines for people on chemo (chemo destroys your villi also). I forgot the name at the moment bit it was also supposed to help healing.

Again, didn't think garlic and onions could be an issue but not thinking they could be. I will try to eliminate those as well. Going to start a good diary.

The food and veggies you described giving you problems sounds similar to what I'm going through. Appreciate your recommendations with what works for you, it gives me some new ideas for things to eat. I'm very limited right now with my resources, as I don't have a microwave, had to get rid of my toaster oven (new one showing up in the mail any day), and I'm too scared to use the oven although it's been well-cleaned at least 3 times. So it limits me to the stovetop for preparing food. But I may look into this for preparing food at people's houses and work. Thank you.

I do take supplements and currently taking a B-complex, vitamin C when I'm only eating one meal, and Vitamin D as I live somewhere it's quite common and easy to become vitamin D deficient. Along with not being lactose intolerant which can affect vitamin d absorption, to my understanding. Will be adding some digestive enzymes to my daily meals and supplements, will do some research on that. What one do you recommend or ones you have experience with?

Not opposed to eggs either, as I'm not opposed to meat. Really, I'm opposed to it but I value my health right now over morality of being vegan right now.

And the PTSD is real. Definitely understand what you mean with that. It happens to me especially when I'm having celiac related issues at work.

You've been extremely helpful and given me a lot of insight. I appreciate your time and response.

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9 hours ago, knitty kitty said:

Oi!  Stop eating fried foods!

Fats are hard to digest when you have damaged villi.  

Think soups and stews with veggies cooked until soft.  You might consider adding chicken broth or beef bone broth to your diet to help with healing.  If you're not combining grains and legumes to make complete proteins, consider adding meat back into your diet.  Your body needs protein to replace those damaged villi.

Consider taking a B-Complex vitamin to ensure you're getting some of the vitamins you're not absorbing because of the diarrhea.  

Hope this helps! 

Currently taking a B-complex supplement so I'm glad I'm doing that right.

Will stop with the oil and fatty foods. Thank you. Hoping this will help. I am considering meat/eggs being added back to my diet. The only reason I'm not eating legumes is out of concern that they could be contaminated with gluten.

I will try stews and very soft veggies but with cutting out the processed foods (until I'm in a place where I can start adding them back to see if they give me any reaction), I struggle to find things to prepare.  What would your suggestion be? Do you make things like stew yourself or do you buy premade? 

Thank you for the input and advice. Hopefully less fats and oils will do me well.

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5 hours ago, BuddhaBar said:

One common mistake newly-diagnosed Celiacs do (I did it too) is to believe that there is only gluten in foods. There are many other things that can end up in your mouth that contains gluten. Makeup, lipbalms, some toothpastes, that glue on envelopes.

And please, try to eat more fish and meat. You're putting a sh*tload of fibers into that damaged small intenstine.

As I said before, my toothpaste as well as my BF's, are both gluten free. I bought a new lip balm that's gluten free and not contaminated. Anything that could end up in my mouth or on my lips I make sure it's gluten free. The paranoia of having another gluten attack is so overpowering it doesn't let me let anything slip by.

I will try eating more protein and back off on the fiber. I appreciate your response and feedback on what I can do to help this. Thank you.

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34 minutes ago, GFinDC said:

Hi Vapor,

If you are only gluten-free for a few days then continued symptoms is normal.  It can take months for symptoms to subside for some people.  That doesn't mean you can't try to improve things though!

Psyillium husks are a neutral fiber product that can help with bulking up stool.  You can buy them plain or in Metamucil etc.  Yerba Prima brand sells plain psyillum husks.  Just mix a tablespoon or so in a soup or a glass of water to drink.  They can be put in any foods or sprinkled on.

Digestive enzymes may help and also betaine HCL with pepsin.  If you try meat after a long time the betaine HCL may be a real good idea.  It can help digest protein.

You may also want to consider eliminating soy.  Vegans tend to eat a lot of soy and soy is a top 8 allergen in the USA.  People with celiac often enough develop food intolerances beyond wheat, rye and barley.  Oats are a big one.

Eating just once a day is a good idea.  It's also good to eat the same things each day for a while to narrow down problems.  May be a little boring but it is effective.

Right now I want to get a handle on the diarrhea, as this is the only symptom I'm experiencing. Aside from the effects of diarrhea like dehydration and fatigue. So the psyllium husk is a great idea! I will give it a try if I can find some gluten free psyllium husk. Thank you.

I will look into the digestive enzymes, and betaine HCL when consuming meat, as I foresee this happening. Wasn't aware there was anything that could help my body adjust to eating meat so thank you for that.

I have already eliminated soy, although my experience with soy over the years hasn't thrown up any red flags. But I did stop eating it due to mTG likely being in it. Same reason I've eliminated all 'processed' foods.

Once I figure out some safe foods I will be eating the same thing every day. As you said, boring, but if it works it works. Will make adjustments from there. 

Thank you again. You've been extremely helpful and knowledgeable.

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Wait!  Hold off on the psyllium husks!  Psyllium husks work by drawing water into the digestive tract.  That will result in worsening dehydration.  

I think this book may be very helpful to you.... it explains very well how autoimmune diseases like Celiac Disease affects your body and how proper nutrition can help your body heal.  

The Paleo Approach by Sarah Ballantyne

https://www.thepaleomom.com/books/the-paleo-approach/

 

I make my own soup and stews.  I throw veggies and meat in a covered oven proof casserole dish and bake at low temperature in oven for hours.  Ox tails and greens, Cornish game hen and carrots, lamb chops and Brussels sprouts.  Don't fear your oven.  Or chuck everything in a pot and use the stove top.  

Before diagnosis, I had severe diarrhea like what you described. I found out the hard way there's a thing called Gastrointestinal Beriberi where because of a deficiency of Thiamine (Vitamin B1) diarrhea, nausea and vomiting occurs.  I didn't vomit much, but I was nauseous and dizzy and weak.  Other symptoms of thiamine deficiency include that visual lagging.  I had trouble getting my eyes to work together properly.  

I am worried gastrointestinal beriberi may be a real problem for you because you haven't been eating good sources of thiamine for a long time.  Meat and legumes are good sources of thiamine.  You can deplete your thiamine stores within a month, especially if you are eating a high carbohydrate diet. 

Here's an article .....

https://www.managedhealthcareconnect.com/articles/beriberi-malnourished-woman-after-extended-period-nausea-and-vomiting
Many doctors (like mine) are not aware of gastrointestinal beriberi.  They think thiamine deficiency only occurs in alcoholism.  When I repeatedly stated I did not drink, the doctors shrugged their shoulders, declared I was a hypochondriac and walked away.  I dusted off my nutrition books from university and began researching.   Thiamine deficiency can develop gradually over a period of time.  Once deficient, thiamine transporters that bring thiamine into each cell stop functioning.  High doses of thiamine are needed to allow thiamine to infiltrate the cells.  I had found Dr. Derrick Lonsdale's research on high dose thiamine....

https://www.hormonesmatter.com/gastrointestinal-disease-thiamine/

I took over the counter thiamine supplements to correct my deficiency.   There is no toxicity level to thiamine.  It is safe to take.  I took 100 mg of thiamine with every meal and started feeling better within hours. I took benfotiamine and lipothiamine as Dr. Lonsdale describes and have had great improvement.

You might want to discuss the possibility of gastrointestinal beriberi with your doctor.  

I hope this helps!

 

8 hours ago, JamesDelaney said:

Everything visually being kind of laggy...

That's the exact thing I've been experiencing daily for months even after being gluten free for several months.. it's improved but never gone away yet 100 percent..  your the first person I've seen describe it exactly as I would describe it . 

 

 

 

2 hours ago, Vapor_girl said:

Currently taking a B-complex supplement so I'm glad I'm doing that right.

Will stop with the oil and fatty foods. Thank you. Hoping this will help. I am considering meat/eggs being added back to my diet. The only reason I'm not eating legumes is out of concern that they could be contaminated with gluten.

I will try stews and very soft veggies but with cutting out the processed foods (until I'm in a place where I can start adding them back to see if they give me any reaction), I struggle to find things to prepare.  What would your suggestion be? Do you make things like stew yourself or do you buy premade? 

Thank you for the input and advice. Hopefully less fats and oils will do me well.

Right now I want to get a handle on the diarrhea, as this is the only symptom I'm experiencing. Aside from the effects of diarrhea like dehydration and fatigue. So the psyllium husk is a great idea! I will give it a try if I can find some gluten free psyllium husk.

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22 hours ago, Vapor_girl said:

Right now I want to get a handle on the diarrhea, as this is the only symptom I'm experiencing. Aside from the effects of diarrhea like dehydration and fatigue. So the psyllium husk is a great idea! I will give it a try if I can find some gluten free psyllium husk. Thank you.

Vapor Girl,

Try you some Zinc.  I saw where you said you were Vegan.

A good plant source is Pumpkin Seeds.

Or you can try some Zinc Lozenges....they will become metallic in your mouth then when your body has absorbed enough.

Here is a study about Zincs role in Diarrhea. Entitled "Zinc Deficiency, Malnutrition and the Gastrointestinal Tract"

https://academic.oup.com/jn/article/130/5/1388S/4686387#:~:text=It%20appears%20that%20a%20vicious%20cycle%20operates%20between,the%20small%20intestine%2C%20preventing%20or%20reducing%20net%20absorption.

Read the abstract at least I believe it will help you.

A snippet of the abstract says it well

quoting

"In zinc deficiency, the organism is more susceptible to toxin-producing bacteria or enteroviral pathogens that activate guanylate and adenylate cyclases, stimulating chloride secretion, producing diarrhea and diminishing absorption of nutrients, thus exacerbating an already compromised mineral status. In addition, zinc deficiency may impair the absorption of water and electrolytes, delaying the termination of normally self-limiting gastrointestinal disease episodes. The gastrointestinal tract may be one of the first target areas where zinc insufficiency may be manifested"

See also this active thread on Zinc's role in IBS.

https://www.celiac.com/forums/topic/154462-study-linking-ibs-to-zinc-deficiency/

Try taking you some Niacinamide with meals the flush free form of Niacin aka Vitamin B3 it has been studied and shown to help GI problems.

http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

See also my Posterboy blog post that argues NCGS/IBS and other GI problems are conditions that happen when we get low in Stomach Acid.

https://www.celiac.com/blogs/entry/2106-is-ncgs-andor-celiac-disease-really-low-stomach-acid-misdiagnosed/

I can only tell you IT helped me to treat my UNdiagnosed Low Stomach acid.

Note: on the B-Complex or B-Vitamins.....YOU can't just take them once a day and expect them to do any good.

It is FREQUENCY over amount....taking them with your meals (3x a day) for 3 to 4 months will let you get your  levels back up to a "Normal" level.

This Posteboy blog post explains it.

https://www.celiac.com/blogs/entry/2109-whos-afraid-of-a-b-vitamin-you-neednt-bee-a-faq-on-niacinamide-and-how-to-take-niacinamide-and-why-you-would-want-to-in-the-first-place/

Being a Vegan your more susceptible to develop Pellagra.....distinguished by it's 3 Ds....

It is actually the 4D's of Pellagra resulting in Death (finally) but if you are still reading this....we will rule the fourth D out...

Diarrhea, (Digestive issues) Dementia and Dermatitis issues.

Because IT typically is only diagnosed in Alcoholic's and Visually (Skin issues) today doctor's don't recognize it when IT often cause Diarrhea first....

Dr. Haney wrote a great article about why Doctor's don't recognize Pellagra anymore in the US or the Western World...

http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/

Here is the research that shows Vegans have a higher risk to develop low nutrient status from their diets....finally presenting as Pellagra....but RARELY recognized today for what it is!

See this research entitled "Recognising the return of nutritional deficiencies: a modern pellagra puzzle"

It Could be subtitled: A Case of Pellagra in Vegans going UNdiagnosed or rarely recognized today!

I hope this is helpful but it is not medical advise.

2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

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You could try some caffeine free green tea, supplement with theanine, glutamine, baking soda,  mint tea or chamomile tea. Those all calm down the digestive tract and reduce inflammation. Also I would take lots of zinc, magnesium and selenium. If you recently ate something with gluten in it it may just take time. 

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On 1/14/2021 at 10:12 PM, Vapor_girl said:

Hi,

About 4 months ago I was diagnosed with Celiac Disease. I have been transitioning to a gluten free diet but only recently discovered the need to cut out potential gluten contamination. I started this process about a week ago and I've had the worst week of my life.

First I found out I was being glutened by my pots/pans/cookware. Replaced everything in my kitchen after I cleaned every possible surface. My boyfriend is going gluten free with me so we got rid of all good that could be contaminated as well. He does eat potentially gluten contaminated food outside of the home so we're both very cautious about kissing. We wait a few hours and then he brushes his teeth before kissing. Personal care products, all gluten free as well.

As I was vegan (for about 3 years) before celiac diagnosis, I'm currently sticking with my vegan lifestyle. When I was a child I was diagnosed with lactose intolerance (which is linked to celiac disease, I understand a lot of people with the disease also suffer from lactose intolerance) and transitioned to a vegan diet. Also would cry about having to eat meat growing up (not just a year, but until I was about 13) so veganism seemed like the right choice.

I believe I experienced celiac symptoms for a few years until I was diagnosed. A few times I've experienced excruciating abdominal pain and not being able to eat anything without having diarrhea. Most of the time though was when I would eat things like garlic bread, or would treat myself to a meal in a neighboring city a few hours away; I would experience lactose intolerance symptoms, my body would act like I at dairy when I certainly did not while eating at strictly vegan restaurants.

I'm willing to sacrifice my being vegan and eat meat if necessary, though hesitate due to some people having adverse effects to meat after not eating it for so long.

I've stopped eating any/all processed foods because I've read up on transglutaminase tissue ('meat glue') and the potential of the enzymes used to process factory made gluten free food.

So I'm basically eating fruits and veggies. Not eating potatoes, rice, oats, legumes, corn, soy trying to rule out anything that could be causing my body to react this way. My understanding is that these foods are difficult for the damaged small intestine to digest.

I'm currently eating things like broccoli, mushrooms, bananas, apples, brussel sprouts, green beans, berries, carrots, etc. All from an organic/reputable store and sources. Not adding any spices to these even though I bought gluten free spices. I'm too afraid to risk it.

It's been almost 48 hours since I've had my typical 'gluten attack' consisting of dizziness, increased heart rate, anxiety, everything visually being kinda laggy but also fast, diarrhea, abdominal pain where my small intestine is located, swelling of my body, inflammation of the small intestine.

I'm afraid to eat or drink anything for fear of having a gluten attack. Been fatigued due to lack of food but I feel no hunger in my tummy. I only eat when the physical symptoms of hunger set in and I start getting extremely dizzy. When I eat I feel better, until the diarrhea hits me like 30-40 minutes later.

I ate broccoli and mushrooms fried up with half an onion and some garlic yesterday. That gave me diarrhea.

Today I ate just broccoli with some garlic and that gave me diarrhea. Then I ate some plain potatoes (figured I'd give them a shot even though I haven't been eating them, cause why not) fried in a bit of gluten free olive oil with a sprinkle of gluten free salt. Gave me diarrhea.

Trying to stay hydrated is difficult but I'm doing my best. But I don't even know what to do. Is my body so permanently damaged from celiac that it can't process any food? Am I having gluten withdrawal? Am I being glutened somehow? I cleaned my whole kitchen for like 3 hours the other day. My dishes get washed in the dishwasher but if I use any clean dish I wash the s$#& out of it with a brand new sponge I got when I bought new pots/pans. My cat eats a gluten free diet and his litter is gluten free. I've seldom kissed my boyfriend on the lips for the past few days. Only after we wake up and he brushes his teeth.

I'm afraid of becoming malnourished. Do I have to just keep eating and suffer through these symptoms? I've called out of work my last two shifts and will have to go back the day after tomorrow and I don't know what I'm going to do.

Hi! I noticed that you mentioned broccoli. Foods like broccoli, cauliflower, and cabbage don't work well for me if they are raw. Have you tried steaming it instead of frying it?

Are you working with a dietitian? That helped me alot.

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On 1/15/2021 at 2:52 PM, knitty kitty said:

Right now I want to get a handle on the diarrhea, as this is the only symptom I'm experiencing. Aside from the effects of diarrhea like dehydration and fatigue

Vapor Girl,

I think the BetaineHCL that GFinDC recommended is a good idea.

Also don't rule out SIBO as Trents mentioned.

Here is some research on SIBO.

https://www.celiac.com/articles.html/researchers-hunt-causes-of-non-responsive-celiac-disease-r1405/

https://www.celiac.com/articles.html/bacterial-overgrowth-of-small-intestine-common-in-treated-celiac-disease-r791/

Start taking your B-complex 3x times a day with your meals.....and you should start noticing a difference in 2 or 3 months if a B-Vitamin is your underlying cause???

I had actually forgotten about this research but recently rediscovered it again recently...

You said Diarrhea was your main complaint....then it could definitely be Pellagra going undiagnosed....

Here is the research on it....entitled "Pellagra, an Almost‐Forgotten Differential Diagnosis of Chronic (Intractable) Diarrhea: More Prevalent Than We Think"

https://onlinelibrary.wiley.com/doi/abs/10.1002/ncp.10418

By taking your B-complex with meals....you will be replacing what your body is passing....

And allow our body to catch up on it's deficiency....

Diarrhea is known as a killer for a reason....it robs us of our nutrients we need to survive!

When we get low in B-Vitamins we can't produce enough Stomach acid to protect us against food allergens.

Prousky did the original research on Niacin and low stomach acid.

Here is the full citation.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

I hope this is helpful but it is not medical advice.

Posterboy,

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Vapor girl, I made this account just so I could tell you this. Here's my two cents.

Celiac disease is correlated with something called mast cell activation syndrome. Research doesn't yet know if celiac disease triggers the mast cells (a white blood cell), or if the mast cells are what "turn on the ignition" for celiac disease to switch on, but they tend to go together; the longer you've had celiac disease, the more mast cells they find in our intestinal wall. Since you were only just dx'd, your mast cells are probably on overdrive. Everything you eat will make you sick during flares, it's not your fault. You can help control the mast cells with OTC antihistamines (an h1 blocker like claritin or benadryl + an h2 blocker like famotidine) every 12 hours, and either ibuprofen or aspirin (whichever you tolerate better, taken as directed) to control the prostaglandins being released in high numbers by these mast cells. This is not your fault. Stay hydrated with something that has electrolytes like salt and potassium, but no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now). If you try the OTC meds you should notice feeling better within 6 - 48 hours, but it will take about 2 weeks before your body flushes out the histamine and other inflammatory chemicals directly released from the mast cells in your gut. They only just recently confirmed the correlation of Celiac Disease and Mast Cell Activation Syndrome, so they don't yet know WHY stopping gluten--a good thing!--makes the mast cells freak out and make us feel worse, but it's a COMMON reaction, you're not crazy, and it's treatable. It really is like a type of withdrawal, I think, like our immune system made all these immune cells active and then we rip away the gluten and now they have nothing to respond to?! It's hell. Google "celiac disease mast cell activation" or look on the boards and see if it rings true for your situation. Dietarily, eat "low histamine" for right now until you notice you can eat a small meal without the dreaded reaction. Drop those bananas! (I know, they provide a lot of nutrients and are easy, but they are one of the worser things to eat during these flares.)

Hang in there. Don't be afraid to get fluids at the ER if you need to. This will pass. Be well. You're on the right track! 


Been at this 20 years. The usual. 🙃

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raspberryfirecracker,

Please provide further information/sources for this statement 

"no "extra" vitamins yet unless directed by your doctor (wait a few weeks, most b vitamins especially could make you much worse right now). "

Thank you.

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44 minutes ago, knitty kitty said:

. . . most b vitamins especially could make you much worse right now). "

Would you elaborate on that please?

Edited by trents

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Re: B vitamins: Yes, in the case of mast cell activation and a body in crisis fighting to remove the excessive histamine produced by those cells wherever they stirred, B vitamins like B9 (folate, even methylfolate), and B12 (even adeno- hydroxy- or methyl-b12) naturally result in histamine down the line, and would overload the pathways the body is using to remove it faster than the body could keep up. It'd be like bailing water out of a boat that has a hole in the bottom. If vapor_girl happens to have any genetic polymorphisms that slow down her ability to metabolize histamine further (like slowed DAO, or reduced ability to create DAO in the gut which is common in us, or slow MTHFR genes, etc etc.), the reaction would be even worse. The active form of B6 (which doesn't need to borrow/methylate before it can work) can help remove histamine, as can the vitamin C she's already on, and Niacin can help stop over-methylation caused by taking too much/too little ratios of the other b vitamins in case someone ALREADY caused an enzyme overload, but that's a lot for anyone to absorb when they're crashed, dehydrated, and new to the post-celiac world. It also uses up electrolytes methylating/metabolizing B vitamin supplements (it's how your body integrates them/quickly eliminates the excess), and someone in her condition can't afford to spare any electrolytes. Lay off the b complex if mast cells are flaring, basically; you recover faster because you aren't throwing daily sparks on the fire you're trying to put it out.

Hope that helps, and sorry for getting so technical... Might be interesting information when you get to feeling better, though!


Been at this 20 years. The usual. 🙃

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I would like scientific study or the source of your information.

Where did you get this information? 

Please show your source for this information because it is opposite of the information I have come across. 

Thanks 

9 hours ago, raspberryfirecracker said:

Re: B vitamins: Yes, in the case of mast cell activation and a body in crisis fighting to remove the excessive histamine produced by those cells wherever they stirred, B vitamins like B9 (folate, even methylfolate), and B12 (even adeno- hydroxy- or methyl-b12) naturally result in histamine down the line, and would overload the pathways the body is using to remove it faster than the body could keep up. It'd be like bailing water out of a boat that has a hole in the bottom. If vapor_girl happens to have any genetic polymorphisms that slow down her ability to metabolize histamine further (like slowed DAO, or reduced ability to create DAO in the gut which is common in us, or slow MTHFR genes, etc etc.), the reaction would be even worse. The active form of B6 (which doesn't need to borrow/methylate before it can work) can help remove histamine, as can the vitamin C she's already on, and Niacin can help stop over-methylation caused by taking too much/too little ratios of the other b vitamins in case someone ALREADY caused an enzyme overload, but that's a lot for anyone to absorb when they're crashed, dehydrated, and new to the post-celiac world. It also uses up electrolytes methylating/metabolizing B vitamin supplements (it's how your body integrates them/quickly eliminates the excess), and someone in her condition can't afford to spare any electrolytes. Lay off the b complex if mast cells are flaring, basically; you recover faster because you aren't throwing daily sparks on the fire you're trying to put it out.

Hope that helps, and sorry for getting so technical... Might be interesting information when you get to feeling better, though!

 

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