Gluten withdrawal - intricacies and confusion

[Joefhow]

I’ve read a number of posts about gluten withdrawal in the archives but I have some specific questions I didn’t see any answers to.

 

I’m on week 9 of a gluten (and dairy) free diet; and I’ve noticed that the very symptoms I meant to improve are the same symptoms that the gluten free diet has aggravated. Memory, concentration, fatigue, and energy have all gotten much worse than they already were. I was diagnosed with chronic fatigue syndrome a few years ago but now I have to wonder what the cause of that is. No change has been noticed in my other diagnoses like IBS or hypothyroidism.

 

This is the second time I’ve tried this diet, I did it first just a month before the second attempt. I got these symptoms then too, but I had thought it was because I went cold turkey and shocked my system. So I ate gluten again for 2 weeks and weaned myself off this time before starting the diet again, but 5 days into the 9 week gluten free diet and the symptoms were as strong as they were the first time.

 

My first question is to people who have experienced longer withdrawals upon going gluten free. Was it the case that the withdrawal you dealt with was proportional to the improvement of symptoms after the withdrawal went away? That is, the improvement relative to your pre-gluten-free-diet state of health. I am wondering whether those with the most severe withdrawals notice the most intense improvements and whether those who experience more tolerable withdrawals only improve a moderate amount, or whether the two things are unrelated.

For my second question; can anyone speculate whether I might have made a major mistake by going off the gluten-free diet for 2 weeks? I am concerned about whether I somehow tricked my body into thinking that glutening was something that could happen again at anytime, and that it might think it can’t let its guard down now. If that happened it could be much longer until the withdrawal lets up, and 9 weeks with zero sign of getting better is making me a bit antsy already.

[kareng]

If you have Celiac Disease - you have to stop eating gluten!  Going on and off will not be helpful to your healing.  If you are going gluten-free for some other reason....???

 

For those with Celiac, the damage isn't " cured" in a few weeks.  

[SLLRunner]

Joe,

Welcome!

Have you been diagnosed with celiac? If so, Karen is right--you must stop eating gluten. Celiac is black and white: if you eat gluten damage to your intestines happen, but if you stop your intestines have a chance to heal.

If you have not been diagnosed with celiac: what is your reason for going on a gluten/dairy free diet? If you suspect you have a gluten sensitivity, or that you may have celiac, you need to continue eating gluten until all testing is complete. 

As for my experience: I eliminated gluten for about 4 weeks and began to feel remarkably better.  Due to this, I am currently doing a gluten challenge so that I can be tested for celiac. My symptoms have come back full force.  Whether or not I have celiac, I will once again eat a gluten free diet because it made me feel feel a whole lot better. 

[Joefhow]

 

I am refraining from gluten because of my doctor talking to me about the likelihood of non-celiac gluten sensitivity vs celiac disease. I showed up negative on a TTG IgA test but that was the only celiac related test I did, and with my extreme reaction to the gluten-free diet we aren’t certain what my deal is. I don’t intend to ever have gluten again in any situation, she says the treatment would be the same for either case.

Sorry, I wasn’t trying to imply that celiac disease was a quick fix. When I said “improvement of symptoms after the withdrawal went away” in my question I meant after however many days to years it takes for that to happen.

 

It wasn't that I thought eating gluten was okay, I just didn’t want to shock and damage my body further so I tried to ease it off before I went gluten free permanently.

[cyclinglady]

44 minutes ago, Joefhow said:

 

I am refraining from gluten because of my doctor talking to me about the likelihood of non-celiac gluten sensitivity vs celiac disease. I showed up negative on a TTG IgA test but that was the only celiac related test I did, and with my extreme reaction to the gluten-free diet we aren’t certain what my deal is. I don’t intend to ever have gluten again in any situation, she says the treatment would be the same for either case.

Sorry, I wasn’t trying to imply that celiac disease was a quick fix. When I said “improvement of symptoms after the withdrawal went away” in my question I meant after however many days to years it takes for that to happen.

 

It wasn't that I thought eating gluten was okay, I just didn’t want to shock and damage my body further so I tried to ease it off before I went gluten free permanently.

Why doesn't your doctor order the rest of the celiac panel?  I personally tested negative on the TTG (even on follow-up testing). Only my DGP IGA was positive yet I had a Marsh Stage IIIB (moderate to severe damage).  

The gluten-free diet is hard to adhere to.  It is easier if you can get a firm diagnosis, or at least rule out celiac disease.  My main symptom was anemia.  I was shocked that my doctor even suggested celiac disease testing.  Good call on his part!  

Healing?  Six months for the anemia to resolve.  One year to feel good.  Two years to feel normal.  "Your mileage may vary!"  ?

[Joefhow]

17 hours ago, cyclinglady said:

Why doesn't your doctor order the rest of the celiac panel?  I personally tested negative on the TTG (even on follow-up testing). Only my DGP IGA was positive yet I had a Marsh Stage IIIB (moderate to severe damage).  

The gluten-free diet is hard to adhere to.  It is easier if you can get a firm diagnosis, or at least rule out celiac disease.  My main symptom was anemia.  I was shocked that my doctor even suggested celiac disease testing.  Good call on his part!  ?

I guess she doesn’t want to do more testing because we want to see if the gluten free diet helps my concentration, energy etc problems. If it does, I’ll have no choice but to never eat gluten again despite the personal cost to myself. It wouldn’t matter that much to me whether it was celiac or not, just that I got better.

17 hours ago, cyclinglady said:

Healing?  Six months for the anemia to resolve.  One year to feel good.  Two years to feel normal.  "Your mileage may vary!"  ?

It’s impressive to me that the human body can recover to that degree from severe damage, I’m glad to hear you are back to normal!

[cyclinglady]

Then you better read our Newbie 101 section under "Coping".  I still think you should consider getting tested.  Here's why. I was formally diagnosed three years ago.  Again, my symptom was iron-deficiency anemia (on top of a genetic anemia).  No tummy issues.   I just went to a GI for a routine colonoscopy because I am in the 50+ club.  My husband went gluten free per poor advice of his GP and my allergist 15 years ago.    No more horrible snoring, sinus infections, body aches, irritability, etc.  Took him a year to really master the diet and stay the course ....."oh, the rye bread was irresistible!"  Luckily, I have some food intolerances and allergies.  I was really careful with his diet.

But he would be the first to say that I have received way more medical, family and friend support.  We have new doctors.  No problem for me.  One look at my pathology and lab reports was proof enough for my internist and GI.  Getting follow-up testing is easy for me.  Easy for my doctors to order and easy for the insurance to pay for  it.  (Bone scan, blood tests, etc.)   They do not believe hubby has celiac disease.  We don't even really know if he has it for sure.  Hubby gets all that eye-rolling from folks all the time.  Not me.  The best part is that we can save others in our family from doing long term damage to their intestines because it is genetic and you can be symptom free.  

What is bothering me is that your doctor is not following the recommendations for diagnosing celiac disease. Which makes me think that she could be incompetent in other areas.  Continued testing for celiac is done even if the TTG is negative and the doctor suspects celiac disease.  The American and British GI Associations do not recommend trialing a diet until all celiac disease diagnostic methods have been exhausted.  Some folks do not have a choice.  They can not afford to do more testing.  I get that.  I do not get a doctor not following or suggesting normal procedures.  

Just something to think about.  A year of being completely gluten-free is hard.  Especially on a guess.   Not impossible, but very hard.  

[squirmingitch]

I agree wholeheartedly with everything cyclinglady has said! 

 

BTW, this is the full, current celiac serum panel & you only got 1 test. 

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

[Beca]

On April 4, 2016 at 0:13 PM, Joefhow said:

 

I’ve read a number of posts about gluten withdrawal in the archives but I have some specific questions I didn’t see any answers to.

 

I’m on week 9 of a gluten (and dairy) free diet; and I’ve noticed that the very symptoms I meant to improve are the same symptoms that the gluten free diet has aggravated. Memory, concentration, fatigue, and energy have all gotten much worse than they already were. I was diagnosed with chronic fatigue syndrome a few years ago but now I have to wonder what the cause of that is. No change has been noticed in my other diagnoses like IBS or hypothyroidism.

 

This is the second time I’ve tried this diet, I did it first just a month before the second attempt. I got these symptoms then too, but I had thought it was because I went cold turkey and shocked my system. So I ate gluten again for 2 weeks and weaned myself off this time before starting the diet again, but 5 days into the 9 week gluten free diet and the symptoms were as strong as they were the first time.

 

My first question is to people who have experienced longer withdrawals upon going gluten free. Was it the case that the withdrawal you dealt with was proportional to the improvement of symptoms after the withdrawal went away? That is, the improvement relative to your pre-gluten-free-diet state of health. I am wondering whether those with the most severe withdrawals notice the most intense improvements and whether those who experience more tolerable withdrawals only improve a moderate amount, or whether the two things are unrelated.

For my second question; can anyone speculate whether I might have made a major mistake by going off the gluten-free diet for 2 weeks? I am concerned about whether I somehow tricked my body into thinking that glutening was something that could happen again at anytime, and that it might think it can’t let its guard down now. If that happened it could be much longer until the withdrawal lets up, and 9 weeks with zero sign of getting better is making me a bit antsy already.

I think it was a major mistake going back to non gluten free.  You dont need to wean urself off and ur not going thru withdrawl lol.  First off, gluten as you know, is the sole cause of celiac disease.  By going back to a gluten diet- you have caused your body to stop healing itself.  Also, as you know- your t-cells are attacking the gluten in your small intestine- namely your upper GI tract.  Your t-cells, while attacking the gluten, are also damaging the villi in your small intestine.  This causes inflammation, irritation, pain and suffering.  Go gluten free like this: try what I did.  Apple sauce, water, and soft boiled rice for a week.  You gotta let your stomach heal.  Don't go out to eat.  Also make sure you are taking gluten free vitamins in the mean time.  Make the rice yourself, and allow not even a crumb of gluten anywhere nearby.  As you know, even gluten free items can upset your stomach.  Reason being, gluten-free means there is less than 20 micrograms of gluten in your food.  Its best to make your own food!  You dont want to take that chance.  Dont eat gluten free bread, dont eat gluten free fake made food.  I would go on a "gluten free" diet, but paleo style.  I mean its your health!  But you should try to go paleolithic because that is an all natural way to get that nutrition and also ensure that you are healthy, I ate boiled carrots in my rice and homemade chicken broth (like I bought a whole chicken at the store and boiled it with kosher salt) and drink chammoile tea- this helped my small intestine heal.  That's what you need to do.  Don't waste your time with the gluten free food diet.  Some of those gluten free foods upset your stomach also because the food is so processed and unnatural (such as rice flour).  

[frieze]

what new foods have you introduced?

[ch88]

I am not sure if this will answer your question but... 

The antibodies to gluten can stay in the body for 4 months or longer.   Also according to a paper I read some people have elevated anxiety right after going gluten free but that by one year the symptoms are reduced. I recommend googling the "Gluten contamination elimination diet."  I had a sudden reduction in my anxiety when I first went gluten free, and a further gradual decrease which has taken a couple years. I still have some anxiety, particularly around people.  Removing oats from my diet helped, as well as going on the contamination elimination diet. Make sure you eating lots of fruits and vegetables as vitamin b can play a role in anxiety. 

Gluten withdrawal is real, but I am not sure on the exact mechanism. Eating wheat can be very dangerous if you have Celiac disease. 

I agree with Beca... Chamomile tea and Green tea helped and I am skeptical of food that is labeled gluten free.