I ate GLUTEN and I am suffering. Advice please.

[LAGurl0823]

I wanted to share my story in case anybody has a similar I would sure love to hear because I feel like I’m alone and going crazy. Five years ago was when I first believed I had the symptoms of celiac disease. I never was tested formally as when I was told that was more than likely what I had.  I stopped eating gluten altogether. It was a very long road to healing and literally took me years to feel better. Last year I started the keto diet and I have never felt better. All of my allergy symptoms were gone completely and I felt like a new person again. I was going to the bathroom normally for the first time ever. FlashForward to this past Christmas I have had a couple of glasses of wine and someone had brought cupcakes over and I just decided that I was able to eat gluten and maybe it was all in my head as many people had told me over the years. I ate two cupcakes and the following day I ate two pieces of pizza as I did not feel any different from ingesting the gluten. Fast forward again to New Year’s Eve. I started feeling extremely sick.  I was dizzy. I had a migraine, I had pins and needles feeling in the side of my head. I had such a bad fatigue and nausea. The headaches have stayed with me. I have crazy spells at least once a day where I become very weak, nauseous feel like I’m going to faint and I literally have to take Benadryl and Tylenol and after an hour the episode leaves me. I am left feeling exhausted. I’ve been going to bed every night at 10 PM and sleeping until 10 AM and I still can’t shake it. It seems my digestive system is completely under duress. I’ve been trying to do whatever I can and eat more of a liquid diet.  I really can’t remember how I healed myself the first time. All I remember was it was a long road ahead. If anyone here has any advice for me I would be greatly appreciative of it. It really stinks when I’m driving my kids around and I suddenly have this very horrible spell that seems to be happening when my body is trying to digest my food.   I have developed such bad anxiety over it. Anyone have a similar situation? 

Edited February 1, 2020 by LAGurl0823
error in post

[MisterSeth]

It usually takes at least 3 months to recover from a "glutening". You have 2 months to go. The gluten causes an auto-immune reaction that destroys your villi in the small intestine. this villi is what produces the chemicals to digest food. for example you need lactase to digest lactose. lactose is the most likely culprit as your second intolerance, if cutting that doesn't help you start looking into nuts and grains.

first thing you should do is go tell the doctor all of this though. you can get a blood test for the antibodies. you should also have a prick test done for food allergies. 

did you stay on keto after the glutening? I think the fats are also absorbed by the villi

[LAGurl0823]

11 minutes ago, MisterSeth said:

It usually takes at least 3 months to recover from a "glutening". You have 2 months to go. The gluten causes an auto-immune reaction that destroys your villi in the small intestine. this villi is what produces the chemicals to digest food. for example you need lactase to digest lactose. lactose is the most likely culprit as your second intolerance, if cutting that doesn't help you start looking into nuts and grains.

first thing you should do is go tell the doctor all of this though. you can get a blood test for the antibodies. you should also have a prick test done for food allergies. 

did you stay on keto after the glutening? I think the fats are also absorbed by the villi

 I cannot have dairy either.  I think that was my other culprit.  However once the gluttening started happening I cannot seem to eat anything without feeling horrid not even keto is working.  The only thing that seemed to be semi ok was if I drank bone broth but not sure I can keep that up for 2 months.  I went to the  holistic doctor and he gave me a ton of probiotics and vitamins and they don't even seem to help.

Edited February 1, 2020 by LAGurl0823

[MisterSeth]

16 minutes ago, LAGurl0823 said:

 I cannot have dairy either.  I think that was my other culprit.  However once the gluttening started happening I cannot seem to eat anything without feeling horrid not even keto is working.  The only thing that seemed to be semi ok was if I drank bone broth but not sure I can keep that up for 2 months.  I went to the  holistic doctor and he gave me a ton of probiotics and vitamins and they don't even seem to help.

I was saying you should quit keto for a couple months and get some carbs, even simple sugars. I find if i get my blood sugar up i eventually start getting hungry for real food

[cyclinglady]

Relax!  

Most of us have been in your shoes.  You will get better!  

Gluten triggers an autoimmune reaction in those with celiac disease (like lupus or MS but the trigger is unknown).  How long that reaction takes to calm down is up to the individual.  It could be a week, weeks or months.  But each day does get better.  

The reason why you feel horrid trying to digest anything is because your small intestine is being damaged (villi).  At the tips of villi, often digestive enzymes (I.e. lactose) are released.   Try to focus on mushy foods.  Things well-cooked and easy to digest.  Applesauce, mushy bananas, stews, soups, etc.  you can remain on a Keto diet, just make it all mushy!  

Taking vitamins and probiotics is not going to stop the autoimmune process, but they can help if you become malnourished.  I would research more about probiotics.  I am not convinced that they are good for celiacs.  Bacteria that should be populating the colon might get stuck or populate the small intestine.  Celiacs can have issues with SIBO or Small Intestinal Bacterial OverGrowth.  

It certainly sounds like you can not have Gluten!

 

 

[LAGurl0823]

1 hour ago, MisterSeth said:

I was saying you should quit keto for a couple months and get some carbs, even simple sugars. I find if i get my blood sugar up i eventually start getting hungry for real food

Thank you!  I appreciate the response and suggestions. 

[LAGurl0823]

42 minutes ago, cyclinglady said:

Relax!  

Most of us have been in your shoes.  You will get better!  

Gluten triggers an autoimmune reaction in those with celiac disease (like lupus or MS but the trigger is unknown).  How long that reaction takes to calm down is up to the individual.  It could be a week, weeks or months.  But each day does get better.  

The reason why you feel horrid trying to digest anything is because your small intestine is being damaged (villi).  At the tips of villi, often digestive enzymes (I.e. lactose) are released.   Try to focus on mushy foods.  Things well-cooked and easy to digest.  Applesauce, mushy bananas, stews, soups, etc.  you can remain on a Keto diet, just make it all mushy!  

Taking vitamins and probiotics is not going to stop the autoimmune process, but they can help if you become malnourished.  I would research more about probiotics.  I am not convinced that they are good for celiacs.  Bacteria that should be populating the colon might get stuck or populate the small intestine.  Celiacs can have issues with SIBO or Small Intestinal Bacterial OverGrowth.  

It certainly sounds like you can not have Gluten!

 

 

Thank you very much for your suggestions. They are very appreciated. I am sure like others on this board there are those who have felt alone like myself. Even my husband tells me, well you look fine. That is the problem with autoimmune issues many seem to think I am having a panic attack or that it is all in my head. I am glad I found this forum. 

[Scott Adams]

Not sure if you saw this: 

 

[cyclinglady]

8 minutes ago, Scott Adams said:

Not sure if you saw this: 

 

I like the fasting suggestion.  Even a 12 fast (overnight) can give your GI tract a much needed break.  

[LAGurl0823]

2 hours ago, Scott Adams said:

Not sure if you saw this: 

 

Thank you so much for sharing this! I think for me the main symptoms are headache, dizziness hot feelings on the side of my face, tingling and numbness on the side of my face and head, feeling faint and like I can’t breathe at times Thank you so much for sharing this! I think for me the main symptoms are headache, dizziness hot feelings on the side of my face, tingling and numbness on the side of my face and head, feeling faint and like I can’t breathe at times.  I don’t have severe pain or bloating in my stomach but I have been unable to go to the restroom and I noticed that my body is not digesting. Thank you so much for the tips. 

[MisterSeth]

http://www.candyaisle.com/wp-content/uploads/2014/04/DSC06319.webp

don't know how to insert photos, but candies that look like that are pure sugar and very easy to eat, just read the ingredients, quite a few of the brands are certified

[Ennis-TX]

I am keto myself and paleo (Diary and Grain Free). Even now my digestion is really a mess, easiest things for me to keep down are eggs, bone broths, seed/nut butters smooth (blend in water for homemade non dairy milk without filler), avocados, bacon (thin) and some meats...meats I crock pot 10-12 hours or pressure cook in the instapot...and right now blend (nutribullet) into my eggs before low temp scrambling with a bit of broth mixed in (takes a long time but prevents hard edges that are hard to digest) I also serve it up in a bowl wile still a bit runny and serve with simple herb based seasonings or salt/little pepper avoiding anything spicy, or irritating like tomatoes, garlic/onions whole nuts/seed. >.< Oddly I can have some pork rinds also like Epic Sea Salt and 4505 smokehouse..tend to eat these cooked in my eggs so the become soft and tender....yes as cyclnglady said everything needs to be mushy. I personally chew mine til I can swish it between my teeth or risk it causing irritation further along the GI tract.

You might find digestive enzymes make the fat easier to digest like RealZymes Keto Formula or Enzymepedia Lypo Enzymes. Bromelain also if your eating high protein

Build your own menu of what you can eat, keeping it simple and recording it in a food diary, with how you feel, how your BMs are, and your mood. Find what works for YOU right now til you heal and get over it. Everyone is a bit different, and many have their own set staples and things they can not have after a gluten exposures...our stomachs and intestines make these choices not us...I jokingly refer to mine as a little kids, likes something one day, throws a fit the next.

If your having constipation issues try Natural Vitality calm...but use a scale to measure it, start with 2 grams a day, up it 2 grams each day til you get loose stools later in the day. Then back it down 2 grams so it should be a average bowel movement, dosing to tolerance. You can probably reduce it more as your heal.

PS, I have plenty of Paleo and Keto recipes on a blog here and many desserts....might be the better option next time your get a craving.

Edited February 1, 2020 by Ennis_TX

[LAGurl0823]

2 hours ago, Ennis_TX said:

I am keto myself and paleo (Diary and Grain Free). Even now my digestion is really a mess, easiest things for me to keep down are eggs, bone broths, seed/nut butters smooth (blend in water for homemade non dairy milk without filler), avocados, bacon (thin) and some meats...meats I crock pot 10-12 hours or pressure cook in the instapot...and right now blend (nutribullet) into my eggs before low temp scrambling with a bit of broth mixed in (takes a long time but prevents hard edges that are hard to digest) I also serve it up in a bowl wile still a bit runny and serve with simple herb based seasonings or salt/little pepper avoiding anything spicy, or irritating like tomatoes, garlic/onions whole nuts/seed. >.< Oddly I can have some pork rinds also like Epic Sea Salt and 4505 smokehouse..tend to eat these cooked in my eggs so the become soft and tender....yes as cyclnglady said everything needs to be mushy. I personally chew mine til I can swish it between my teeth or risk it causing irritation further along the GI tract.

You might find digestive enzymes make the fat easier to digest like RealZymes Keto Formula or Enzymepedia Lypo Enzymes. Bromelain also if your eating high protein

Build your own menu of what you can eat, keeping it simple and recording it in a food diary, with how you feel, how your BMs are, and your mood. Find what works for YOU right now til you heal and get over it. Everyone is a bit different, and many have their own set staples and things they can not have after a gluten exposures...our stomachs and intestines make these choices not us...I jokingly refer to mine as a little kids, likes something one day, throws a fit the next.

If your having constipation issues try Natural Vitality calm...but use a scale to measure it, start with 2 grams a day, up it 2 grams each day til you get loose stools later in the day. Then back it down 2 grams so it should be a average bowel movement, dosing to tolerance. You can probably reduce it more as your heal.

PS, I have plenty of Paleo and Keto recipes on a blog here and many desserts....might be the better option next time your get a craving.

I thank you so much for your kind advice.  I really appreciate it so much.  I will try our suggestions and see how I feel.  Everyday is a new challenge but I will get through just like everyone else.  I appreciate it so much!!! ❤️

17 hours ago, MisterSeth said:

I was saying you should quit keto for a couple months and get some carbs, even simple sugars. I find if i get my blood sugar up i eventually start getting hungry for real food

Yes, I did get off keto in the meantime as with the food issues it seems the fatty foods are not fairing well with me.  Thank you for your advice!

[LAGurl0823]

4 hours ago, MisterSeth said:

http://www.candyaisle.com/wp-content/uploads/2014/04/DSC06319.webp

don't know how to insert photos, but candies that look like that are pure sugar and very easy to eat, just read the ingredients, quite a few of the brands are certified

Thank you!

[Irishmom6l]

Got Glutened!!

I’ve learned to have 4 things in my house at ALL times. 
-liquid bentonite clay

-ginger chews

-a good  digestive enzyme.  (Love! love! love! My kids Tummygize by animal parade.)

- kumbucha ginger 

these all seem to help when it’s bad.  I’ve been following the celiac diet for 15 years after being diagnosed.  My symptoms range from bloating to fainting then coming to with horrible sweats and shakes.  How is it I get glutened? I now have kids lol, they seem to always drink my water or tea after a big mouth full of something containing gluten.  
 

seems like the longer I’ve followed the diet the more sensitive I’ve gotten.  Which I’ve read can happen. 

 

[Rhobhan]

I’m in my sixth week of an accidental glutening, with no let up in sight. I’ve lost about a 1/2 pound per day due to the chronic diarrhea, and in addition, I have no appetite and nearly all foods are unappealing and unappetizing.

 Bone broth is soothing, I have found, however.

The gastroenterologist has me on an anti-nausea drug which helps a bit.

I was diagnosed 13 years ago and this is the worst reaction I have ever had and the lowest weight to which I have dropped.

I, too, sleep for 8-1/2-10 hours a night, only to wake up fatigued and only able to sit or lie about all day.

i feel your pain and wish there was a magic bullet.

 

[cyclinglady]

Yep.  I have smaller clothes stored for the times I have been exposed to gluten.  I can drop 20 pounds fast.  It is my goal for it to never happen again.  In my house, I am the gluten police.  I am a bit paranoid, but seriously my last gluten exposure caused me to pass out from the pain (usually does), and I developed Chronic Autoimmune (AI) hives.  Almost a year later from that gluten exposure,  I was diagnosed with my third autoimmune disorder, chronic autoimmune Gastritis   I do not want a fourth (AI).  

My hubby had been gluten free 12 years before my diagnosis.(Hey, new study shows spouses are at risk leading researchers to think that environmental issues are a factor).  Anyway, I have never glutened myself (I probably did gluten my hubby during the early years.....).  It has always occurred while eating out for me.  So, I stick to dedicated gluten-free restaurants.  

Old member Jebby who is really Jessica Madden, a Preemie Baby doctor who contributes to the celiac community when she can (The Patient Celiac), made her house gluten free.  Her five little kids were exposing her to gluten.  Something to consider.  

Hope you all feel better soon.  

 

[LAGurl0823]

3 hours ago, Rhobhan said:

I’m in my sixth week of an accidental glutening, with no let up in sight. I’ve lost about a 1/2 pound per day due to the chronic diarrhea, and in addition, I have no appetite and nearly all foods are unappealing and unappetizing.

 Bone broth is soothing, I have found, however.

The gastroenterologist has me on an anti-nausea drug which helps a bit.

I was diagnosed 13 years ago and this is the worst reaction I have ever had and the lowest weight to which I have dropped.

I, too, sleep for 8-1/2-10 hours a night, only to wake up fatigued and only able to sit or lie about all day.

i feel your pain and wish there was a magic bullet.

 

I feel your pain...my symptoms are different than more which always freaks me out as I feel like maybe something else is really wrong with me.  I am not losing weight as I cannot go to the bathroom at all since I glutened myself.   I also don't have stomach pain, but I know when I eat it will be moments later that I will get the worst headache of my life.  It will be a headache that makes me think I am having a stroke.  The worst pressure behind my eye and nausea.  I don't even want to eat as everything and anything causes this to happen, but it will also happen when I am hungry and need food.  I hope this too shall pass for myself and everyone else.  Anyone else have the head stuff I am speaking of?

37 minutes ago, cyclinglady said:

Yep.  I have smaller clothes stored for the times I have been exposed to gluten.  I can drop 20 pounds fast.  It is my goal for it to never happen again.  In my house, I am the gluten police.  I am a bit paranoid, but seriously my last gluten exposure caused me to pass out from the pain (usually does), and I developed Chronic Autoimmune (AI) hives.  Almost a year later from that gluten exposure,  I was diagnosed with my third autoimmune disorder, chronic autoimmune Gastritis   I do not want a fourth (AI).  

My hubby had been gluten free 12 years before my diagnosis.(Hey, new study shows spouses are at risk leading researchers to think that environmental issues are a factor).  Anyway, I have never glutened myself (I probably did gluten my hubby during the early years.....).  It has always occurred while eating out for me.  So, I stick to dedicated gluten-free restaurants.  

Old member Jebby who is really Jessica Madden, a Preemie Baby doctor who contributes to the celiac community when she can (The Patient Celiac), made her house gluten free.  Her five little kids were exposing her to gluten.  Something to consider.  

Hope you all feel better soon.  

 

 

I feel your pain...my symptoms are different than more which always freaks me out as I feel like maybe something else is really wrong with me.  I am not losing weight as I cannot go to the bathroom at all since I glutened myself. (a month and I went maybe twice....and when I d go it drums up all the symptoms again too)   I also don't have stomach pain, but I know when I eat it will be moments later that I will get the worst headache of my life.  It will be a headache that makes me think I am having a stroke.  The worst pressure behind my eye and nausea.  I don't even want to eat as everything and anything causes this to happen, but it will also happen when I am hungry and need food.  I hope this too shall pass for myself and everyone else.  Anyone else have the head stuff I am speaking of?

[LAGurl0823]

10 hours ago, Irishmom6l said:

Got Glutened!!

I’ve learned to have 4 things in my house at ALL times. 
-liquid bentonite clay

-ginger chews

-a good  digestive enzyme.  (Love! love! love! My kids Tummygize by animal parade.)

- kumbucha ginger 

these all seem to help when it’s bad.  I’ve been following the celiac diet for 15 years after being diagnosed.  My symptoms range from bloating to fainting then coming to with horrible sweats and shakes.  How is it I get glutened? I now have kids lol, they seem to always drink my water or tea after a big mouth full of something containing gluten.  
 

seems like the longer I’ve followed the diet the more sensitive I’ve gotten.  Which I’ve read can happen. 

 

Thank you so much for your post.  I am sorry for your suffering as well and I thank you for  the suggestions.  I can use all the help I can.

[cyclinglady]

Constipation, headaches, and migraines are commonly associated with celiac disease.  But they are symptoms of other illnesses too.  

If you are questioning your diagnosis, consider a gluten challenge, but first consult with a doctor.  People can get pretty sick on a challenge. If bad, the GI can order an endoscopy right away.  

How are your kids?  Any symptoms that warrant their testing?  

[Kelly2]

On 1/31/2020 at 5:46 PM, LAGurl0823 said:

I wanted to share my story in case anybody has a similar I would sure love to hear because I feel like I’m alone and going crazy. Five years ago was when I first believed I had the symptoms of celiac disease. I never was tested formally as when I was told that was more than likely what I had.  I stopped eating gluten altogether. It was a very long road to healing and literally took me years to feel better. Last year I started the keto diet and I have never felt better. All of my allergy symptoms were gone completely and I felt like a new person again. I was going to the bathroom normally for the first time ever. FlashForward to this past Christmas I have had a couple of glasses of wine and someone had brought cupcakes over and I just decided that I was able to eat gluten and maybe it was all in my head as many people had told me over the years. I ate two cupcakes and the following day I ate two pieces of pizza as I did not feel any different from ingesting the gluten. Fast forward again to New Year’s Eve. I started feeling extremely sick.  I was dizzy. I had a migraine, I had pins and needles feeling in the side of my head. I had such a bad fatigue and nausea. The headaches have stayed with me. I have crazy spells at least once a day where I become very weak, nauseous feel like I’m going to faint and I literally have to take Benadryl and Tylenol and after an hour the episode leaves me. I am left feeling exhausted. I’ve been going to bed every night at 10 PM and sleeping until 10 AM and I still can’t shake it. It seems my digestive system is completely under duress. I’ve been trying to do whatever I can and eat more of a liquid diet.  I really can’t remember how I healed myself the first time. All I remember was it was a long road ahead. If anyone here has any advice for me I would be greatly appreciative of it. It really stinks when I’m driving my kids around and I suddenly have this very horrible spell that seems to be happening when my body is trying to digest my food.   I have developed such bad anxiety over it. Anyone have a similar situation? 

Oh my goodness, you poor thing!!  I have similar  experiences if I accidentally ingest gluten or any other grains.  My system begin 24 hours after the ingestion.    I don't think it is unsual that your symptoms began one week later.  Everyone's body reacts differently.  My symptoms tend roll out over time.  Since Celiac is an autoimmune disease, it attacks a number of my body's systems.  I will first get a rash on my face and I know I am doomed!  Then it attacks my Thyroid and I wind up with hypothyroidism which results in horrible fatigue, brain fog, some weight gain, and constipation.  Then it attacks my adrenal glands which results in too much adrenalin and cortisol being released into my system which results in generalized anxiety and panic attacks.  I also experience depression.  The symptoms will last from days to months and one time even for a year - all based on just how much I accidentally ate.  There doesn't seem to be too much I can do about controlling the symptoms - autoimmune diseases turn off on their own.  But I do take L-Tyrosine (a thyroid supplement) to help my thyroid.  I plan to ask my doctor about an adrenal gland supplement to help with anxiety, etc when it happens.  But basically, I am neurotic about not getting contaminated.  I also have intolerance to all grains, dairy and soy so I avoid those foods also.  A contamination of those will lead to certain symptoms - each one has its own set of symptoms.  I hope you feel better soon!!!   

[Fenrir]

I have definitely found that fasting helps immediately after a glutening. 

I will fast for as much as 24hrs after getting glutened, is just gives the GI tract time to heal and not be stressed as much. I often use intermittent fasting as a tool because since becoming celiac my GI tract is a little more finicky than it used to be. Basically what I do is I will eat nothing after 8pm, then eat nothing until about noon the next day. 

[Felix Nuts Tomcat]

I have a weird system.  It system flushes at the drop of a hat because of its sensitivity.  I consider that a blessing in disguise.  So I will deliberately trigger a flush with a tablespoon of honey with cinnamon or two oranges to move the gluten out of my system.  Then I do the mint tea regimen.

I wouldn't recommend other trying this unless there system acts this way.

If the gluten dose is big enough, It will come back and that's pretty much the end of it.

[Felix Nuts Tomcat]

I will have a try the fasting next time I get glutened.  When I get glutened I just want to lay in bed.

[Javi]

Hello,

I am sorry you feel like this. Some once recommended Kefir to me, it did help with my digestion, but at the same time it gave me horrible headaches and my dizziness came back. I drank it for about 3 or 4 days and it took me several weeks to "recover" from that. There is a ton of info online about the relationship between your gut bacteria / flora and the brain, something about the vagus nerve sending info from your gut directly to the brain. I do get this stabbing pain on the left side of my head, in the jaw, like inside my cheekbone (zygomatic bone), there is this important nerve running through your face called the trigeminal nerve and you cannot forget the masseter and temporalis muscle groups. So according to my physiotherapist, if this nerve is irritated or those muscle groups are strained or tight, it can also lead to headaches, dizziness and severe pain in the face (neuralgia or myalgia). I will get to see a good neurologist at the end of the month to see what is causing my headaches, dizziness and the pain in my face, it is really uncomfortable and it makes you very anxious because I don´t really know what triggers them and when they just pop up... I wish you well!