Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Explanation That Comforted Me.


conniebky

Recommended Posts

conniebky Collaborator

Celiac Notes: Opiate Withdrawal from Gluten and Casein?

by Dr Charles Parker

You might want to warn gluten sensitive, celiac and casein sensitive patients about this odd and painful clinical phenomenon: Withdrawal after stopping wheat or milk products can be painful, exhausting, and depressing, with weakness, anger, and brain fog.

I have a very interesting and refractory client in Ohio who has struggled for years with a variety of severe reactions to psych meds, suicidal depression, mercury toxicity, and became completely regressed on previous withdrawal of Prozac before I saw him in DC. With autoimmune issues in abundance and at times psychotic like feelings of loosing control we tested him for gluten/casein sensitivity, hit pay dirt with positive findings, and asked him to go on a gluten free/casein free diet [Gluten-free Casein-free is the acronym].

He felt remarkably better at first, better than he had in years, then the withdrawal set in. Having had previous experience with addictive opiates prescribed for pain, he recognized signs of withdrawal immediately.

If you are a

member of this group, the very fact that you are experiencing many of

these symptoms should reinforce the need to exclude gluten from your

diet. These are common symptoms of withdrawal of detoxification from

gluten-derived opioid and brain neurochemical imbalances. The evidence

suggests that about 70 percent of celiac patients will experience these

symptoms when beginning a strict gluten-free diet.

I found this at Open Original Shared Link

and it made me feel better about how I've been feeling since going gluten-free.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Thanks for posting this. It will be helpful to many I am sure. One thing to keep in mind is that we need to be really strict, especially at first to stop the withdrawl and keep it from reoccuring.

Takala Enthusiast

Then there is managing expectations- some of us don't go through this but merely are getting carbohydrate cravings as a result of not tweaking whatever version of the diet we're on for our individual needs correctly, at first.

Plus it ignores the very real vitamin and mineral deficiencies.... THEY CAUSE SYMPTOMS.

Would hate to have everyone expect an opiate like withdrawal- talk about killing motivation to change to a healthier eating pattern - I don't think citing one source who deals with that sort of thing is the definitive proof that "70% are going to suffer withdrawal symptoms akin to addiction."

That's still 30% that are overjoyed that they have the power to fix their own auto immune symptoms with a diet change. No other people with a disease can do that except adult onset pre diabetics.

ravenwoodglass Mentor

Then there is managing expectations- some of us don't go through this but merely are getting carbohydrate cravings as a result of not tweaking whatever version of the diet we're on for our individual needs correctly, at first.

Plus it ignores the very real vitamin and mineral deficiencies.... THEY CAUSE SYMPTOMS.

Would hate to have everyone expect an opiate like withdrawal- talk about killing motivation to change to a healthier eating pattern - I don't think citing one source who deals with that sort of thing is the definitive proof that "70% are going to suffer withdrawal symptoms akin to addiction."

That's still 30% that are overjoyed that they have the power to fix their own auto immune symptoms with a diet change. No other people with a disease can do that except adult onset pre diabetics.

I think the 70% is a little bit high. Just judging by what I have seen folks write about here I think the numbers are likely reversed, in other words closer to 30% would have the severe withdrawl symptoms. I don't think it 'kills the motivation' though. The withdrawl is usually shortlived if folks are not getting CC'd. My withdrawl was over within a week and was basically being a bit overemotional. I think the folks who are more likely to suffer withdrawl are the ones who have strong neuro symptoms. The bit of withdrawl is well worth the hassle to get rid of the horrible pain and other problems we have.

conniebky Collaborator

I think the 70% is a little bit high. Just judging by what I have seen folks write about here I think the numbers are likely reversed, in other words closer to 30% would have the severe withdrawl symptoms. I don't think it 'kills the motivation' though. The withdrawl is usually shortlived if folks are not getting CC'd. My withdrawl was over within a week and was basically being a bit overemotional. I think the folks who are more likely to suffer withdrawl are the ones who have strong neuro symptoms. The bit of withdrawl is well worth the hassle to get rid of the horrible pain and other problems we have.

WEll now, it's true, 90% of my symptoms are neuro, so that would go along with that.

And I don't mind going through the withdrawal a bit, I complain about it loudly, yes, but I don't mind it, as long as I know it will eventually pass. The reason I looked that up in the first place was because I thought oh no, are these all new symptoms, or maybe my body/mind are getting pissy because I'm not giving them what they're used to, that was my reason for looking it up and when I saw that, it made me feel less crazy. :blink:

kwylee Apprentice

Thanks conniebky for posting this. I too have neuro wihtdrawal symptoms (woozy, dizzy, sometimes anxious) after two weeks of going completely gluten free/casein free, and it was a God send to read this today. Posts like this let me know this is normal and will pass.

Yoshi Newbie

I was diagnosed and went gluten free the first part of February. The first 3 weeks were wonderful. I felt so good. Then, I started having major withdrawal symptoms. For over a month, I felt worse than I had before going gluten free. If I hadn't had the good 3 weeks, I would have given up. But I wanted to feel that way again, so I struggled through it. I've gradually gotten better and feel good more often and for longer periods of time. I also have Crohns, and sometimes I'm not sure what's acting up or what set it off. Overall, though, I can see improvement. I've had consistant improvement in some areas since going gluten free, even when I've felt horrible elsewhere. I used to get really bad seborrhea breakouts on my scalp. They would itch, and I would scratch without thinking about it, until they turned to sores. I used to get canker sores inside my mouth, that would take forever to go away. I have had no breakouts on my scalp and only 1 canker sore in my mouth during the past 4 months. Reminding myself of the improvements, no matter how small they are, keeps me going when I want to give up.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



txplowgirl Enthusiast

Thankfully I was one of those who had no withdrawal symptoms at all. But my sweetie, who has diabetes, spastic colon, is a smoker, also has had 1 heart attack and open heart surgery tried to go gluten free with me. Bad bad gluten withdrawals to the point he finally said to heck with it. He now knows he has a gluten problem but refuses to go gluten free because it was so bad. He said he'd rather suffer through another heart attack and open heart surgery before going through that again.

summerteeth Enthusiast

Thankfully I was one of those who had no withdrawal symptoms at all. But my sweetie, who has diabetes, spastic colon, is a smoker, also has had 1 heart attack and open heart surgery tried to go gluten free with me. Bad bad gluten withdrawals to the point he finally said to heck with it. He now knows he has a gluten problem but refuses to go gluten free because it was so bad. He said he'd rather suffer through another heart attack and open heart surgery before going through that again.

Same here - I didn't have withdrawal symptoms with gluten. Milk products were another story - I CRAVED cheese.

My fiance, on the other had, cannot go a day without gluten without feeling crappy. Luckily it doesn't bother him - he has a problem with some fruits and vegetables, and also nuts. He has to have his multigrain sandwich thins. He is also the same with protein or he'll get sluggish-- but for me, I could go without meat (I eat it though).

We are quite the pair with our problems with food! :blink:

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.