Feeling 10X Worse

[kwylee]

OK, while waiting for the results of my Entero Lab Gluten/Casein sensitivity test, I decided to go ahead and eliminate gluten and casein from my diet. Was this a mistake???? Before the elimination diet, I did have some dizziness at times and bouts of fatigue, plus a constant ringing in my ears, and what I would call EXTREMELY mild IBS-type symptoms here and there. But after two weeks of having eliminated EVERYTHING that contains gluten and casein, it feels as if someone literally dragged a fork throughout my intestines. Plus, the dizziness is MUCH worse, I feel shaky and almost panicky, plus I have a constant low grade headache. I still do get hungry, but it seems like a challenge to digest anything, even filtered water!!!

If my Entero Lab test comes back positive, I'm not sure how to take it. Continue on the diet from hell, or go back to eating stuff that will surely lead to additional health problems if I don't stop. I am more than a little freaked out right now. I was in a business meeting this morning and all I wanted to do was jump up and run out.

How can ELIMINATING something from your diet create the "fork through the intestines" feeling and everything else I'm experiencing? I am hoping that someone else besides me has had this experience.

[tictax707]

I actually wonder if it's what you are eating instead that is making you so miserable. Are they things that are out of the ordinary for you? Are you eating enough & is it balanced...? I hope you can get it sorted and start improving soon. Being so unhappy sucks, and I'm so sorry!!

[GlutenFreeManna]

I was thinking the same thing. What are you eating?

[conniebky]

  On 6/2/2010 at 5:26 PM, kwylee said:

OK, while waiting for the results of my Entero Lab Gluten/Casein sensitivity test, I decided to go ahead and eliminate gluten and casein from my diet. Was this a mistake???? Before the elimination diet, I did have some dizziness at times and bouts of fatigue, plus a constant ringing in my ears, and what I would call EXTREMELY mild IBS-type symptoms here and there. But after two weeks of having eliminated EVERYTHING that contains gluten and casein, it feels as if someone literally dragged a fork throughout my intestines. Plus, the dizziness is MUCH worse, I feel shaky and almost panicky, plus I have a constant low grade headache. I still do get hungry, but it seems like a challenge to digest anything, even filtered water!!!

If my Entero Lab test comes back positive, I'm not sure how to take it. Continue on the diet from hell, or go back to eating stuff that will surely lead to additional health problems if I don't stop. I am more than a little freaked out right now. I was in a business meeting this morning and all I wanted to do was jump up and run out.

How can ELIMINATING something from your diet create the "fork through the intestines" feeling and everything else I'm experiencing? I am hoping that someone else besides me has had this experience.

OH I feel just awful for you. I got glutened today, and I felt the exact same way you described. I was at work too and I couldn't wait to get out of there. I freakin' HATE that panicky, shaky, jump outta your skin feeling. I sooooo feel for you, Plus, when you're at work and feel like that, you have to double down on it because you have to hold your act together - right!?

What are you eating and how often are you eating? I just feel so bad for ya.

[kwylee]

I did go out and get a few things that are gluten and casein free, but mostly I am eating rice and beans and ghee, things like that which are only one ingredient and always agreed with me. Up until 2 weeks ago, I was ingesting gluten AND casein probably daily, and I didn't feel this bad. Not sure this is normal.

[WheatChef]

A withdrawal period is normal for many people going gluten-free. The duration of these stronger symptoms is potentially suspect however. With those 3 food staples you should be getting enough carbs/protein/fats but you might be somewhat devoid on vitamins. If you actually do have a gluten problem then your intestines are the most efficient things until they fully heal and so if you've cut back on the amount of calories you're ingesting before you heal then this could certainly cause the dizziness at least.

Gluten is far from an essential nutrient and so the removal of gluten itself is not a possible source of pain unless it's a part of withdrawal (where your body's adaptations to a chronic toxin all of a sudden overcompensate due to the sudden removal of the toxin).

[kwylee]

Yes! Yes! Wheatchef! I spent a bit of time doing some research this afternoon and I think I am experiencing withdrawal from gluten!!!! Who would have thought this? Much like an opiate withdrawal, my body can most certainly be reacting to a (previous) physical dependance on gluten (and possibly casein). All of my symptoms were cited.

I DO WANT TO THANK EVERYONE WHO RESPONDED TO ME TODAY!!! You have no idea how much I needed help getting through this day. Bad news is I may be in for a few more days or weeks of feeling like this, but at least I know it's not life-threatening.

[GlutenFreeManna]

  On 6/2/2010 at 8:52 PM, kwylee said:

I did go out and get a few things that are gluten and casein free, but mostly I am eating rice and beans and ghee, things like that which are only one ingredient and always agreed with me. Up until 2 weeks ago, I was ingesting gluten AND casein probably daily, and I didn't feel this bad. Not sure this is normal.

I've been gluten free for 6 months now and I cannot yet tolerate beans. They tear my insides up. I get bloating, painful gas and blood in my stool when I eat beans. This never happened to me prior to going gluten free. Some people have problems with rice. If you have just gone off gluten then your intestines need time to heal. You may not be able to handle some things that are difficult to digest like beans or large amounts of raw vegetables. Are you a vegetarian? If not, then you should eat lots of lean meats and eggs for protein. Peanut butter or other nut butters are a good source of protein if you need to eat vegetarian. Don't eat too many raw nuts or they can have the same effect as beans. Eat mostly steamed (or otherwise cooked) vegetables and fruit in moderation. Also be sure that you are getting the proper vitamins and supplements to help your body heal. I hope you start to feel better soon.

[lucia]

  On 6/2/2010 at 10:05 PM, kwylee said:

Yes! Yes! Wheatchef! I spent a bit of time doing some research this afternoon and I think I am experiencing withdrawal from gluten!!!! Who would have thought this? Much like an opiate withdrawal, my body can most certainly be reacting to a (previous) physical dependance on gluten (and possibly casein). All of my symptoms were cited.

I DO WANT TO THANK EVERYONE WHO RESPONDED TO ME TODAY!!! You have no idea how much I needed help getting through this day. Bad news is I may be in for a few more days or weeks of feeling like this, but at least I know it's not life-threatening.

I went through what must have been gluten withdrawal, and I felt crazy. I was dizzy, had rising and falling blood pressure and accompanying chills, had headaches ... It started about a week after going off of gluten and completely knocked me off balance for about 5 days. Sorry you're going through it, but just do your best to make yourself comfortable and know you're doing the right thing!

[jerseyangel]

  On 6/2/2010 at 5:26 PM, kwylee said:

How can ELIMINATING something from your diet create the "fork through the intestines" feeling and everything else I'm experiencing? I am hoping that someone else besides me has had this experience.

It's not all that unusual to experience gluten withdrawal--I remember being able to feel my food making it's way through my intestine--felt like ground glass.

[kwylee]

Yes, I'll be paying attention to EVERYTHING I eat for now, not just gluten and casein. Hoping that in time I'll be able to tolerate more foods than I can now. The advice here today has been invaluable. So thankful!

[GFinDC]

You could also be experiencing a change in your gut flora. All the juicy gluten and casein is gone and now the bacteria that thrived on that needs to adapt or die off. You might want to try some pro-biotics, may help. Many of the pro-biotics have dairy in them so do check labels.

Rice and beans and ghee may not be agreeable to you. Lots of us develop additional food sensitivities beyond gluten. You could try eliminating one of those items for 4 or 5 days and see if it helps any. My suggestion would be to get rid of the beans first, as many people have problems digesting beans.

Make sure to check your vitamin pills for any gluten or dairy also.

[rdunbar]

I felt like that when I got off of casien after not eating wheat for almst 3 years just 3 months ago. I was also careless about gluten cross contamination, and ate processed corn (which is always CCed), but when I cleaned up I felt like I had been kicked in the gut, and could barely get out of bed for 2 weeks. From what I understand gluten or casien cause a reaction from your immune system ( unlike an allergy) which cause it to produce antibodies which go on the attack. Unfortunatly they also attack you, and the front line is the intestine. When you remove the gluten, the antibodies might ramp up in your system, and the inflammation actually increases temporarily? maybe this causes the 'withdrawl affect'?

Anyways, I'm feeling a LOT better now having not eaten out in months and eating sweet potatoes, squash, greens like mustard greens and kale, salad with lemon and olive oil; actaully everything drenced in olive oil. meat like lamb and chicken, and fruit. You actually don't need rice if you have the carbs from the sweet potatoes and squash.beans,legumes are right out IMO, one of the last things you would ever want to eat with a damaged intestine. Your body needs to adjust in that your metabolism will balance out but it takes some time. I'm just starting to feel better, and it's really exciting, so just be patient, I know its painful, but it doesnt take that long to start feeling better.

[Mari]

Kayle - Ghee is clarified butter and contains milk protein. I have an allergy to cow's milk and cannot tolerate even a tiny bit of butter.

The spice turmeric may help cool down the inflamation in your gut - recepies and information online about that and other common antiinfalmatory herbs.

Peppermint or Spearment tea will help - make it strong by boiling water then adding a tablespoon or more then steep for 5 or more minutes. It is also very calming.

Hope this helps and you get better soon.

[kwylee]

  On 6/3/2010 at 5:42 PM, rdunbar said:

I felt like that when I got off of casien after not eating wheat for almst 3 years just 3 months ago. I was also careless about gluten cross contamination, and ate processed corn (which is always CCed), but when I cleaned up I felt like I had been kicked in the gut, and could barely get out of bed for 2 weeks. From what I understand gluten or casien cause a reaction from your immune system ( unlike an allergy) which cause it to produce antibodies which go on the attack. Unfortunatly they also attack you, and the front line is the intestine. When you remove the gluten, the antibodies might ramp up in your system, and the inflammation actually increases temporarily? maybe this causes the 'withdrawl affect'?

Anyways, I'm feeling a LOT better now having not eaten out in months and eating sweet potatoes, squash, greens like mustard greens and kale, salad with lemon and olive oil; actaully everything drenced in olive oil. meat like lamb and chicken, and fruit. You actually don't need rice if you have the carbs from the sweet potatoes and squash.beans,legumes are right out IMO, one of the last things you would ever want to eat with a damaged intestine. Your body needs to adjust in that your metabolism will balance out but it takes some time. I'm just starting to feel better, and it's really exciting, so just be patient, I know its painful, but it doesnt take that long to start feeling better.

Yes, rdunbar, I do feel like my system is undergoing attack. You've nailed it. I'm starving right now but so afraid to eat, because that's when the dizziness starts. I can handle the stomach discomfort. But those bouts of dizziness are scary. I know it's directly related because I've had mild dizziness for years, and have given up wheat before when a blood test showed allergy a number of years ago. But I've never given up wheat, gluten and casein all at the same time. But I've come this far, I'll stick it out.

[kwylee]

  On 6/3/2010 at 6:02 PM, Mari said:

Kayle - Ghee is clarified butter and contains milk protein. I have an allergy to cow's milk and cannot tolerate even a tiny bit of butter.

The spice turmeric may help cool down the inflamation in your gut - recepies and information online about that and other common antiinfalmatory herbs.

Peppermint or Spearment tea will help - make it strong by boiling water then adding a tablespoon or more then steep for 5 or more minutes. It is also very calming.

Hope this helps and you get better soon.

Well, I know that ghee is butter without the milk solids. But until I know what will agree or not agree, you are correct to suggest I suspect EVERYTHING as something that may not agree. I need a serious food diary.

[quincy]

  On 6/3/2010 at 6:03 PM, kwylee said:

Yes, rdunbar, I do feel like my system is undergoing attack. You've nailed it. I'm starving right now but so afraid to eat, because that's when the dizziness starts. I can handle the stomach discomfort. But those bouts of dizziness are scary. I know it's directly related because I've had mild dizziness for years, and have given up wheat before when a blood test showed allergy a number of years ago. But I've never given up wheat, gluten and casein all at the same time. But I've come this far, I'll stick it out.

I have been dealing with similar symptoms and have been gluten free for about 6 weeks, but I got cc'd 2 times and both times the depression and anxiety, dizziness, and pain on my right side all added up to just misery. I am going through this now after eating supposedly gluten free pasta at an Italian place. I wonder sometimes if I will ever heal or be over this. it seems like such a nightmare has come into my life in just a month's time...

the dizziness has been the strangest part of all this. It started last month and has eased up somewhat. I started taking my beta blocker again to help with my bp spikes and it has actually helped calm me down alot. but I still have the loose bowels which is disconcerting.

[julandjo]

I never had a problem (or so I thought) with rice until I went gluten-free. For months I couldn't figure out what was still causing me so many problems. I *finally* nailed it down to rice, and now that that's out of my diet I'm feeling so much better. I describe my "riced" feeling (get it, like "glutened"?) as a spikey dryer ball going through my intestines. Ughhhh. Even a couple of cookies that have rice flour as an ingredient will do it. I echo others on the bean issue too. I hope you feel better soon!

[kwylee]

I wanted to post an update for anyone new to this and reading about the troubles I complained of on this thread when I first went cold turkey off of gluten and casein. I don't want anyone to be reluctant to pursue a gluten free lifestyle if tested positive or they have reason to believe that gluten may be a problem for them.

I just finished my fourth week of my new way of eating. Here is a recap of what happened: (Keep in mind that everyone may not experience neurological symptoms as I did. Also, if you are going to be tested, don't remove gluten from your diet until after the test sample is taken.)

Week One - I cut out all obvious gluten and casein but was still eating some processed foods that probably had trace substances at least - still was symptomatic, some symptoms slightly worse

Week Two - Went cold turkey. Stopped all processed foods and ate things like beans, rice, beef, corn - all harsh on my stomach. Started getting feeling of "raw" gut and intestines (never had that before), and dizziness/anxiety was enhanced. Somewhere around this time I started reading this forum.

Week Three - by the end of this week I felt dizziness more and more frequently, had full blow anxiety attack, then felt woozy for days, my stomach was still raw but that got better as soon as I started a simple diet of chicken, olive oil, Bragg's apple cider vinegar, potato and steamed veggies like brocolli and cauliflower. Not a problem since I wasn't hungry at all. Not nauseous, just not hungry.

Week Four - continued minimal diet and saw huge changes. Dizziness and anxiety were at greatly decreased intensity and happening less and less. Hunger was back but cravings for sugar, starch, etc., were gone. Still eating much less than before the diet (used to overeat prior to this). By week's end, I felt better than I have in 20 years.

Along the way I've had a couple of accidental mishaps, but I am learning. And I wouldn't trade the way I feel on this side of the "gluten hump" for anything.

The biggest help for me during this last month was the forum. Everyone is different, but all here have the same thing in common. They know that it's so much better once you get the gluten out of your system. The dietary suggestions I got here were invaluable. And the moral support meant everything to me.

Some stop gluten and feel better instantly. Some go through a bit of a detox as I did. If it happens, just do what I was urged to do by the wonderful people on this forum: just hang on; it'll get better. They were right, and it's so worth it.

Thank you everybody!!

[T.H.]

So glad you are feeling better.

I went through something similar - very sick, dizzy, miserable after going gluten free, and only started feeling better after I dropped many, many foods.

It's been 8 months now and I'm still trying to find more foods to eat, but the food log - I tried that too - worked well for me, definitely. I would second everything you said: I feel so much better than before I went on this diet. it's worth the limited diet, to feel this much better!

Shauna

  On 6/15/2010 at 1:29 AM, kwylee said:

I wanted to post an update for anyone new to this and reading about the troubles I complained of on this thread when I first went cold turkey off of gluten and casein. I don't want anyone to be reluctant to pursue a gluten free lifestyle if tested positive or they have reason to believe that gluten may be a problem for them.

I just finished my fourth week of my new way of eating. Here is a recap of what happened: (Keep in mind that everyone may not experience neurological symptoms as I did. Also, if you are going to be tested, don't remove gluten from your diet until after the test sample is taken.)

Week One - I cut out all obvious gluten and casein but was still eating some processed foods that probably had trace substances at least - still was symptomatic, some symptoms slightly worse

Week Two - Went cold turkey. Stopped all processed foods and ate things like beans, rice, beef, corn - all harsh on my stomach. Started getting feeling of "raw" gut and intestines (never had that before), and dizziness/anxiety was enhanced. Somewhere around this time I started reading this forum.

Week Three - by the end of this week I felt dizziness more and more frequently, had full blow anxiety attack, then felt woozy for days, my stomach was still raw but that got better as soon as I started a simple diet of chicken, olive oil, Bragg's apple cider vinegar, potato and steamed veggies like brocolli and cauliflower. Not a problem since I wasn't hungry at all. Not nauseous, just not hungry.

Week Four - continued minimal diet and saw huge changes. Dizziness and anxiety were at greatly decreased intensity and happening less and less. Hunger was back but cravings for sugar, starch, etc., were gone. Still eating much less than before the diet (used to overeat prior to this). By week's end, I felt better than I have in 20 years.

Along the way I've had a couple of accidental mishaps, but I am learning. And I wouldn't trade the way I feel on this side of the "gluten hump" for anything.

The biggest help for me during this last month was the forum. Everyone is different, but all here have the same thing in common. They know that it's so much better once you get the gluten out of your system. The dietary suggestions I got here were invaluable. And the moral support meant everything to me.

Some stop gluten and feel better instantly. Some go through a bit of a detox as I did. If it happens, just do what I was urged to do by the wonderful people on this forum: just hang on; it'll get better. They were right, and it's so worth it.

Thank you everybody!!

[ravenwoodglass]

  On 6/15/2010 at 1:29 AM, kwylee said:

I wanted to post an update for anyone new to this and reading about the troubles I complained of on this thread when I first went cold turkey off of gluten and casein. I don't want anyone to be reluctant to pursue a gluten free lifestyle if tested positive or they have reason to believe that gluten may be a problem for them.

I just finished my fourth week of my new way of eating. Here is a recap of what happened: (Keep in mind that everyone may not experience neurological symptoms as I did. Also, if you are going to be tested, don't remove gluten from your diet until after the test sample is taken.)

Week One - I cut out all obvious gluten and casein but was still eating some processed foods that probably had trace substances at least - still was symptomatic, some symptoms slightly worse

Week Two - Went cold turkey. Stopped all processed foods and ate things like beans, rice, beef, corn - all harsh on my stomach. Started getting feeling of "raw" gut and intestines (never had that before), and dizziness/anxiety was enhanced. Somewhere around this time I started reading this forum.

Week Three - by the end of this week I felt dizziness more and more frequently, had full blow anxiety attack, then felt woozy for days, my stomach was still raw but that got better as soon as I started a simple diet of chicken, olive oil, Bragg's apple cider vinegar, potato and steamed veggies like brocolli and cauliflower. Not a problem since I wasn't hungry at all. Not nauseous, just not hungry.

Week Four - continued minimal diet and saw huge changes. Dizziness and anxiety were at greatly decreased intensity and happening less and less. Hunger was back but cravings for sugar, starch, etc., were gone. Still eating much less than before the diet (used to overeat prior to this). By week's end, I felt better than I have in 20 years.

Along the way I've had a couple of accidental mishaps, but I am learning. And I wouldn't trade the way I feel on this side of the "gluten hump" for anything.

The biggest help for me during this last month was the forum. Everyone is different, but all here have the same thing in common. They know that it's so much better once you get the gluten out of your system. The dietary suggestions I got here were invaluable. And the moral support meant everything to me.

Some stop gluten and feel better instantly. Some go through a bit of a detox as I did. If it happens, just do what I was urged to do by the wonderful people on this forum: just hang on; it'll get better. They were right, and it's so worth it.

Thank you everybody!!

Thank you for the update. Glad your seeing positive changes and you let us know. It will be helpful for others that are new and struggling.