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What Is Gluten Withdrawl?


eblue

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eblue Apprentice

Hey everyone:

 

I am a bit discouraged. I was diagnosed with celiac about a month ago. I did not have the endoscopy, as my blood test results were extremely positive. My Dr. did not feel it was necessary, and since I had already spent a fortune on every other test in the book, I decided not to. I started my gluten free diet immediately, and within a week felt so much better. I had honestly been feeling ill for so long that I forgot what it was like to actually feel a little bit normal.

 

So, I continued my gluten free diet, and some of my GI sympt began to go away. My stomach cramps, bloating, D, and nausea got noticeablly better. My anxiety, fatigue, and body aches were still there, but I knew that I had to be patient and that it could take a very long time for healing....

 

Until this week!!!

 

I have been miserable this week. I have had dizzy spells, rapid heart rate, fatigue, and moodiness like crazy. I even threw up one night.  I have not felt this bad since before my diagnosis. Even laying down sometimes, I get this horrible faint, dizzy, weak feeling like I am going to pass out. What in the world is going on?? I don't see how I could have possibly digested gluten, unless it was from hand soap or makeup or something like that.

 

What is gluten withdrawl anyways? I have heard of it but I have no idea what it actually means? Do yall think that could be the culprit in my illness this week? Did anyone else have something similar happen a few weeks after they went off of gluten?

 

HELP!!!


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shadowicewolf Proficient

Withdrawl is basically your body wanting more gluten and not getting any. So your body reacts without the presence of it. However, it would normally happen when you first start going gluten free.

eblue Apprentice

Withdrawl is basically your body wanting more gluten and not getting any. So your body reacts without the presence of it. However, it would normally happen when you first start going gluten free.

Thanks. Maybe I am just coming down with something. who knows.

1desperateladysaved Proficient

First off I had over 30 years of symptoms and am super-sensitive besides.  I had 4 days of bliss after starting gluten free.  After That I did really take a dive with fatigue and dizziness.  I eventually pulled back out of it.  My problem could have been withdrawal, but I also had let some gluten get by me by not reading labels closely enough. 

 

 

If I were you

 

I would try to rest extra. 

 

 

 I would consider quality gluten free supplements

 

 

I would check and recheck labels and find more and more gluten free products for you home. 

 

Give yourself time to adjust.  My family also had to make adjustments and we pretty much ended up without gluten in the house.

 

  I ended up doing many more things to keep my mind clear and the fatigue at bay, but that happened over months for me.  Over time it is easier to tell what is working for you, and then consider more if you need to.

 

You are on the gluten free path:  Keep Walking.  Get well!

 

D

eblue Apprentice

First off I had over 30 years of symptoms and am super-sensitive besides.  I had 4 days of bliss after starting gluten free.  After That I did really take a dive with fatigue and dizziness.  I eventually pulled back out of it.  My problem could have been withdrawal, but I also had let some gluten get by me by not reading labels closely enough. 

 

 

If I were you

 

I would try to rest extra. 

 

 

 I would consider quality gluten free supplements

 

 

I would check and recheck labels and find more and more gluten free products for you home. 

 

Give yourself time to adjust.  My family also had to make adjustments and we pretty much ended up without gluten in the house.

 

  I ended up doing many more things to keep my mind clear and the fatigue at bay, but that happened over months for me.  Over time it is easier to tell what is working for you, and then consider more if you need to.

 

You are on the gluten free path:  Keep Walking.  Get well!

 

D

Thank you :) Hearing that you went through something similar with the "4 days of bliss and then took a dive" makes me feel better

notme Experienced

i had withdrawals - it feels like a really bad flu - i may have even gotten a fever i can't remember.   take some time and baby yourself - it'll be up and down for awhile - hang in there!  and check those soaps and whatnot, if you're going through withdrawal, you want to do the best you can not to start over again.  :)

nvsmom Community Regular

It doesn't sound like withdrawal to me because you are weeks into the diet, it usually hits in the first week but who know, you could be the exception. I hope you feel better soon.  :(


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    • trents
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    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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