Healing after more severe gluten exposure

[Kurlykaitlyn]

I really need some tips and support on how I can recover from a recent exposure. 😮‍💨

It’s been about twelve days since I was glutened at a restaurant.
Three days before I ate at this restaurant, I had an ovarian cyst rupture and bleeding into my belly. No surgery and that’s all healed now. I usually don’t get such severe autoimmune responses as I have this time, and I’m guessing it’s because I had this medical emergency just a few days before that had altered the strength of my immune system?? 
 In the last couple weeks I’ve only been eating rice, drinking broth, drinking electrolytes, apple sauce, and a smoothie with banana and protein powder. It’s about all I can stomach because I get nausea, diarrhea, dizzy and light headed, and chills when I go back to eating other foods. 
i also made the mistake of taking ibuprofen yesterday for pain in my shoulder.  The ibuprofen set me back when I was feeling a little better for a couple days. 
i just haven’t felt this ill since my diagnosis four years ago. I’ve been riddled with anxiety the last week now because all these symptoms come and go, and how weak I feel. 😢
Any tips, please, on how I can improve and speed up the healing process? 

[Mari]

Well this is Saturday evening and I hope you are feeling a little better. But if this is dragging on and still a problem it could be best to see your provider or return to the ER soon to have this checked out. 

[knitty kitty]

@Kurlykaitlyn,

Sounds like you are suffering from malnutrition.  You may want to seek medical care soon.  Medical professionals can give you a "banana bag" intravenously full of vitamins.  The banana yellow color is from Riboflavin Vitamin B 2.  

You may be suffering from gastrointestinal beriberi, a deficiency in Vitamin B1.  Thiamine works as an analgesic as well as ibuprofen.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

A physical stress such as having a cyst burst is enough to precipitate thiamine deficiency.  Even if you've been careful, the gluten free diet can be low in essential vitamins and minerals.  Do you take any vitamin supplements?  Weakness and anxiety are also symptoms of Thiamine deficiency along with the gastrointestinal ones.

There's always the possibility of having picked up a bacterial infection from the restaurant.  A double checking of the ovarian cyst (ectopic pregnancy?) would be beneficial.

"...eating rice, drinking broth, drinking electrolytes, apple sauce, and a smoothie with banana and protein powder."

Does your protein powder contain whey?  There can be small amounts of casein (a milk protein) in whey.  Our bodies can react to casein as though it were gluten because they are similar in structure.

Banana and applesauce are high in fructose.  You could be having fructose malabsorption syndrome.  Perhaps you could eliminate the applesauce at least to see if you'll feel better.  

I hope you feel better!  Check back in with us to let us know how you're doing! 

[Kurlykaitlyn]

  On 6/11/2023 at 6:34 AM, knitty kitty said:

@Kurlykaitlyn,

Sounds like you are suffering from malnutrition.  You may want to seek medical care soon.  Medical professionals can give you a "banana bag" intravenously full of vitamins.  The banana yellow color is from Riboflavin Vitamin B 2.  

You may be suffering from gastrointestinal beriberi, a deficiency in Vitamin B1.  Thiamine works as an analgesic as well as ibuprofen.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

A physical stress such as having a cyst burst is enough to precipitate thiamine deficiency.  Even if you've been careful, the gluten free diet can be low in essential vitamins and minerals.  Do you take any vitamin supplements?  Weakness and anxiety are also symptoms of Thiamine deficiency along with the gastrointestinal ones.

There's always the possibility of having picked up a bacterial infection from the restaurant.  A double checking of the ovarian cyst (ectopic pregnancy?) would be beneficial.

"...eating rice, drinking broth, drinking electrolytes, apple sauce, and a smoothie with banana and protein powder."

Does your protein powder contain whey?  There can be small amounts of casein (a milk protein) in whey.  Our bodies can react to casein as though it were gluten because they are similar in structure.

Banana and applesauce are high in fructose.  You could be having fructose malabsorption syndrome.  Perhaps you could eliminate the applesauce at least to see if you'll feel better.  

I hope you feel better!  Check back in with us to let us know how you're doing! 

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Thank you so much for your comment! 
I was confirmed to have no infection or ectopic pregnancy in ER. I also haven’t had any fever since all this started. I have windows of feeling healthy again, small windows, but still I’ll feel better before feeling ill again which leaves me and my husband sure I don’t have any infection. I’m speaking to my gyno about a follow up this week and will bring it up to see if I should test for any infections given my symptoms though! 
 

I am concerned about vitamin deficiencies. Funny thing, I have been in my best health the last three years before this happened. Granted, I don’t know if my vitamin numbers were healthy. I know iron stores were okay but on the lower side. I just did some blood tests yesterday and still waiting on full results, but so far my CBC is back to normal levels since the cyst rupture, and my calcium, potassium, and sodium levels are all healthy levels. 

also, I’m entirely dairy free. My protein powder is a sprouted brown rice. It’s the only protein powder I’ve been able to eat without stomachs aches or side effects. I could be more sensitive now though because of my gut health. 
 

I called my insurance today to connect with a gastroenterologist because I’d like to see a doctor who specializes with celiac disease to help me. I’m hoping they can do further tests if necessary and give me some advice.

i woke last night after only an hour sleep and felt very weak and like I might faint on my way to the bathroom, plus chills. But no fever 😕 so idk. 
I’m hoping this week I finally just get some answers and I’ll update here when I know more. Thank you for responding 🙏 

[Scott Adams]

Although it may be too late now, the article below may be helpful for accidental gluten issues. I also always take GliadinX enzymes when eating out (disclosure--they are a sponsor here but I promote them because they work on small amounts of contamination):

 

[Kurlykaitlyn]

  On 6/11/2023 at 10:49 PM, Scott Adams said:

Although it may be too late now, the article below may be helpful for accidental gluten issues. I also always take GliadinX enzymes when eating out (disclosure--they are a sponsor here but I promote them because they work on small amounts of contamination):

 

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I haven’t heard of these enzymes! Thanks for sharing them as I’m going to look into these. Usually I don’t have such severe reactions but turns out the restaurant has wheat flour in their fries 🙄

I’ve since learned it’s quite common and that dedicated friers aren’t enough of a safe bet for us with celiac disease. I wish the restaurant staff would’ve known better than telling me their fries are totally safe for celiacs because a dedicated frier. But ah well, I take responsibility for eating there. 

[knitty kitty]

@Kurlykaitlyn,

I'm very concerned.  

You said "i woke last night after only an hour sleep and felt very weak and like I might faint on my way to the bathroom, plus chills. But no fever 😕 so idk."

Feeling weak and syncope (fainting) can occur in Thiamine deficiency because the body has trouble regulating blood pressure.  Chills can occur because the body has trouble  regulating body temperature without enough Thiamine.  Insomnia is another symptom of Thiamine deficiency.

You have NOT been eating sources of B vitamins like Thiamine in the past two weeks.  Sources of B vitamins include meats and liver.  Vegetables and fruits have very little thiamine.  

Your protein powder may have plenty of amino acids, but doesn't contain the essential B vitamins.  Read the label!  

Thiamine deficiency can occur in as little as three to nine days!  We need more thiamine when we have a physical illness and emotional stress.

The World Health Organization WHO says that a thiamine deficiency can be diagnosed if thiamine is administered and improvement is seen.  WHO uses thiamine hydrochloride (500- 2000mg/day), but other forms of Thiamine (Benfotiamine and Tetrahydrofurfuryl disulfide-TTFD) can also be used.  

Thiamine is safe and nontoxic even in the high amounts needed to correct Thiamine deficiency.  Your doctor can administer high dose thiamine, or you take over the counter thiamine supplements.  Because tests for thiamine deficiency take so long and are so expensive, doctors tend to give high dose Thiamine first because damage from Thiamine deficiency can be life threatening or permanent.  

Foot drop, tachycardia and blurry vision along with peripheral neuropathy will be the next symptoms.  Then comes the brain function losses, memory failures, disorientation, etc.  

I've experienced thiamine deficiency myself.  

Let me know how it goes! 

Best wishes!

P.S. Thiamine deficiency is called Beriberi which translates as "I can't, I can't" because of the weakness that results.

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

Edited June 12, 2023 by knitty kitty
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[Kurlykaitlyn]

  On 6/12/2023 at 12:31 PM, knitty kitty said:

@Kurlykaitlyn,

I'm very concerned.  

You said "i woke last night after only an hour sleep and felt very weak and like I might faint on my way to the bathroom, plus chills. But no fever 😕 so idk."

Feeling weak and syncope (fainting) can occur in Thiamine deficiency because the body has trouble regulating blood pressure.  Chills can occur because the body has trouble  regulating body temperature without enough Thiamine.  Insomnia is another symptom of Thiamine deficiency.

You have NOT been eating sources of B vitamins like Thiamine in the past two weeks.  Sources of B vitamins include meats and liver.  Vegetables and fruits have very little thiamine.  

Your protein powder may have plenty of amino acids, but doesn't contain the essential B vitamins.  Read the label!  

Thiamine deficiency can occur in as little as three to nine days!  We need more thiamine when we have a physical illness and emotional stress.

The World Health Organization WHO says that a thiamine deficiency can be diagnosed if thiamine is administered and improvement is seen.  WHO uses thiamine hydrochloride (500- 2000mg/day), but other forms of Thiamine (Benfotiamine and Tetrahydrofurfuryl disulfide-TTFD) can also be used.  

Thiamine is safe and nontoxic even in the high amounts needed to correct Thiamine deficiency.  Your doctor can administer high dose thiamine, or you take over the counter thiamine supplements.  Because tests for thiamine deficiency take so long and are so expensive, doctors tend to give high dose Thiamine first because damage from Thiamine deficiency can be life threatening or permanent.  

Foot drop, tachycardia and blurry vision along with peripheral neuropathy will be the next symptoms.  Then comes the brain function losses, memory failures, disorientation, etc.  

I've experienced thiamine deficiency myself.  

Let me know how it goes! 

Best wishes!

P.S. Thiamine deficiency is called Beriberi which translates as "I can't, I can't" because of the weakness that results.

https://www.merckmanuals.com/home/disorders-of-nutrition/vitamins/thiamin-deficiency

Expand Quote  

Hello again! First, thanks so much for everything you’ve shared! Yesterday was a major turning point for me in regards to healing and getting my health back in balance. I haven’t had dizzy spells the last 48 hours! 
My body has been able to hold food and so I’ve slowly been increasing the variety of foods and quantity every day. Slowly but surely, and I think it’s helping me feel a lot better and stronger. 

I appreciate your concern about the vitamins because it’s encouraged me to reach out to another doctor and have the vitamin tests done. I already called my insurance line to have my current doctor send lab tests, but he only sent a thyroid, CBC, and basic metabolic panel tests. All those came back in good numbers. My hemoglobin and hematocrit were very low two weeks ago from the bleeding cyst, right before my gluten exposure, and all of them are back up in mid levels. 

im visiting a different doctor tomorrow and requesting the whole vitamin tests I haven’t had done since my diagnosis! I kept thinking about what you said in regards to the thiamin and other B vitamins, plus I’m also concerned about vitamin D. 
thanks for your level of concern because I probably would’ve just continued ignoring the symptoms and hoping it goes away. 
 

[knitty kitty]

@Kurlykaitlyn,

I'm so glad you decided to act instead of ignoring and hoping your symptoms go away!

Ask your doctor for the Erythrocyte Transketalase test to check for Thiamine.  

Keep us posted on the results!