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Gluten Cold Turkey

Jeongu

By Jeongu
in Coping with Celiac Disease

Recommended Posts

Jeongu Newbie
Jeongu
Posted

I have very debilitating symptoms which fit Celiac disease, so I decided yesterday to eliminate all gluten and dairy from my diet. Instead of my usual fix of milk and cereal in an evening I ate fruit.

It hit me as if I'd just gone cold turkey from heroin or something. I finally got to sleep about 5am after a horrible night of severe stomach cramps, huge amounts of wind from both ends, a very foggy mind which was going psychotic at times, and alarming heart palpitations. It's now the next day and I'm exhausted and still suffering a slightly calmer version of these symptoms.

I'd really like to hear about other people's experiences of cutting out gluten. Did anyone else have an experience like this?

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mftnchn Explorer
mftnchn
Posted

This is extremely common with food intolerances or food allergies. Some people report some initial negative symptoms going gluten-free although your reaction seems strong.

I would think that a positive or a negative response to the diet is significant and warrents staying to wait things out.

Just be aware that any diagnostic testing for celiac needs to be done before you go gluten free.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have very debilitating symptoms which fit Celiac disease, so I decided yesterday to eliminate all gluten and dairy from my diet. Instead of my usual fix of milk and cereal in an evening I ate fruit.

It hit me as if I'd just gone cold turkey from heroin or something. I finally got to sleep about 5am after a horrible night of severe stomach cramps, huge amounts of wind from both ends, a very foggy mind which was going psychotic at times, and alarming heart palpitations. It's now the next day and I'm exhausted and still suffering a slightly calmer version of these symptoms.

I'd really like to hear about other people's experiences of cutting out gluten. Did anyone else have an experience like this?

If you just went gluten-free starting with your evening snack last night this is not a withdrawl reaction but most likely still a gluten one. Gluten does not leave your system instantly the last time a bite goes through your mouth. It takes a day or two at least for your body to realize it is not getting it anymore. If you have not been tested wait on starting the diet until your testing is over. If you stop now and it helps a doctor will want you back on gluten so that they can confirm with blood and/or biopsy. When you challenge gluten after being gluten-free for a while and starting the healing process your body is really not going to like it. Most of us become very ill when we have to do a challenge. Call your doctor ASAP and ask for a celiac panel. If that is positive they will likely want to do an endo. After those tests are done then you can start the diet. You should also give the diet a good strict try even if the tests come back negative.

aorona Rookie
aorona
Posted

I was diagnosed via a blood test as celiac after being sick my entire life (28 years). Initially, when I started the gluten free diet, I was sick for 2 weeks. I was horribly sick, and I first thought why am I doing this? I thought I was getting glutened and ended up throwing out almost all of the food in our house [to avoid cross contamination issues, etc.]. It took about one month before I really started feeling better; but, I think this was because I went undiagnosed for such a long time. Many people do not take this long to begin feeling better. I am not sure if my children went through this same type of experience as I was so focused on myself at the time. In reading other forums I believe this is a normal reaction. I would, however get a definite diagnosis before completely eliminating all gluten from your diet. Of course if the bloodwork comes out negative and you still suspect gluten sensitivity, then I would do a gluten challenge for a few months. Good luck and remember that sometimes to get better you have to feel worse first. I know it doesn't make sense!!

Jeongu Newbie
Jeongu
Posted
  • Author

Thanks all for the advice. I'm going to ask my doctor for the gluten antibody test. I'm feeling a little better and had my first full night's sleep for weeks last night, so I'm hopeful I've found the culprit for my illness. I would like to do the full range of tests to confirm it's gluten, but the idea of going back to eating gluten so a doctor can get firm results is pretty horrific right now. If the non-gluten diet works then I'll be content to continue it based on my own experience rather than go back to more heart palpitations and psychosis. I'll update when the blood test results come back. Cheers!

CJS59 Newbie
CJS59
Posted
I have very debilitating symptoms which fit Celiac disease, so I decided yesterday to eliminate all gluten and dairy from my diet. Instead of my usual fix of milk and cereal in an evening I ate fruit.

It hit me as if I'd just gone cold turkey from heroin or something. I finally got to sleep about 5am after a horrible night of severe stomach cramps, huge amounts of wind from both ends, a very foggy mind which was going psychotic at times, and alarming heart palpitations. It's now the next day and I'm exhausted and still suffering a slightly calmer version of these symptoms.

I'd really like to hear about other people's experiences of cutting out gluten. Did anyone else have an experience like this?

Hi

I started gluten free yesterday also and had the exact same symptoms. And I'm still having the heart palpitations and foggy mind today. No energy.

I'd also like to say hello to all the members, I'm a newbie :rolleyes:

Jill

ang1e0251 Contributor
ang1e0251
Posted
Hi

I started gluten free yesterday also and had the exact same symptoms. And I'm still having the heart palpitations and foggy mind today. No energy.

I'd also like to say hello to all the members, I'm a newbie :rolleyes:

Jill

Welcome!

I know you'll feel better soon. Just stick with simple gluten-free foods to start.

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  • 2 weeks later...
Jeongu Newbie
Jeongu
Posted
  • Author

Hi, the blood test came back negative so it looks like I don't have celiac disease. The doctor's scratching his head and has forwarded me to a gastro specialist, so hopefully it will get figured out. All the best.

one more mile Contributor
one more mile
Posted

Lost of people get false negatives. Someone else can explain it better then me.

I have not had any blood work done but have been of Gluten now for a few months. I am amazed at the changes in me.

I no longer feel like I am dieing. Oddly this week I am noticing that the inside of my nose feels bigger. I do not have that stuff nose feeling that was just normal for me.

I read someplace that eating Gluten for us make a substance in our guts with an addictive ability similar to morphine causing us to want to eat more gluten. Please correct me If I am wrong. But I did find in the start of this I really did crave

gluten items. Now It is less so but being a recovered alcoholic I do tend to view things in the addictive mode. The first week was rough but then I generally felt bad any way so it was only a different bad that I felt. I feel so much better now.

I went though a stage of anger when I would go in the grocery stores and see all that I could not eat. but now when I go in I see what I can eat and do not get angry. It is just a progress and it gets easer as long as you stick to it.

one more mile

  • 5 weeks later...
Jeongu Newbie
Jeongu
Posted
  • Author

Still waiting for the gastro consultant but that's coming up soon.

In the meantime I had an intolerance test privately. They found that I had strong reactions (lots of antibodies) to milk, eggs, yeast, wheat and gluten. The celiac gluten test checks for antibodies that attack the intestines I think, rather than specific antibodies for gluten (I think), so, it seems that the traditional medical way of checking for intolerance isn't always effective at identifying the problem.

A nutritionist has advised that my symptoms and intolerances sound like a yeast problem: the yeast and bad bacteria make microscopic holes in the gut which allow bits of food through, and thats where the gluten, milk, egg causes a reaction. But the toxins from the yeast also produce my symptoms. So I have to avoid my intolerant foods, take healthy bacteria capsules, then take an antimicrobial to kill off the yeast. Hopfully then my leaky gut can heal.

Kit.DaMommy Rookie
Kit.DaMommy
Posted

I have been gluten free since monday. Well technically since Sunday night, anyways, I had a scope test, thing monday. My doctor took a biopsy of my small intestine and told me to stop eating gluten. I did and it has been extremely hard. I was horribly sick monday and tuesday. Yesterday I felt pretty good, but today I decided to have a sugar cookie and that bit me in the butt. I have been feeling awful ever since, which in my opinion confirms his prelimenary diagnosis. So tomorrow is a new day, and no more gluten for me.

love to all,

be blessed

:lol:

one more mile Contributor
one more mile
Posted
I have been gluten free since monday.

Good luck and Keep up the good work. I have been Gluten free since July and went though a period where I was mad at others that could eat Gluten. I am still finding my way, so at times my meals are strange, but they are all gluten free.

I have kept a list of the things that have improved for me since I started and look at it from time to time when I feel like this is annoying. The physical changes for me have been so amazing that If I think the bite though I choose not to be sick any longer.

As time goes on the good news gets better. This week I called a favorite restaurant of mine and the cook agreed to cook gluten free. I also notice my hand writing has gotten better, I can read my own notes. lol

DDlynn

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      By knitty kitty · Posted

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