Gluten Withdrawal

[Alison3]

Hello,

I am hoping someone can shed light on my situation. I was tested for Celiac disease and wheat allergy; both of which came back negative. This puzzles me because I have all of the tell-tale signs. I have had these symptoms since the pregnancy of my 2nd child, 10 years ago. I was given a diagnosis of crohns, although, the dr. isn't totally convinced.

I have been gluten-free for 7 days now, and will continue to do so, regardless of what the test results were. However, my symptoms are worse now than when I was eating foods containing gluten.

Headaches, joint pain, painful gas and bloating, diarrhea, SEVERE fatigue, difficulty concentrating, and the list goes on.

Please tell me this is a natural step in the process. I've been reading about gluten withdrawal online, but I really need to read it from someone who's gone through it or something similar.

Although the tests are negative, I am still not convinced. But it's just so frustrating to feel this badly after taking steps to BETTER my health....

Ugh...anyone??

Thanks,

Alison

[OptimisticMom42]

Hello Allison,

I'm sorry to hear that you are feeling so badly. Please give yourself sometime. Going off the gluten made me much better in some ways, mostly GI issues. But in other ways like swollen joints and fatigue, I was worse for awhile. I took a lot of naps the first six months. I used a lot of natural remedies for aches and pains and depression. I cried, called in sick to work and yelled at my kids and pets. And I started taking supplements. For every ache or complaint I researched this and other websites and found that many of them were easily explained. Mag for cramps, D for sensitivity to perfumes, acidopholus for yeast, B complex for cold chills. Before going gluten free I was so used to my low level miserables' that I didn't notice the individual stuff. I just took lots of antihistamines.

Be patient, it will get better. RA

Also my son's tests came back negative (both times), I was never tested. We were diagnosed by a respected immunologist. Our reactions are obvious to the naked eye and unplugged nostril!

[CGally81]

Hello,

I am hoping someone can shed light on my situation. I was tested for Celiac disease and wheat allergy; both of which came back negative. This puzzles me because I have all of the tell-tale signs. I have had these symptoms since the pregnancy of my 2nd child, 10 years ago. I was given a diagnosis of crohns, although, the dr. isn't totally convinced.

I have been gluten-free for 7 days now, and will continue to do so, regardless of what the test results were. However, my symptoms are worse now than when I was eating foods containing gluten.

Headaches, joint pain, painful gas and bloating, diarrhea, SEVERE fatigue, difficulty concentrating, and the list goes on.

Please tell me this is a natural step in the process. I've been reading about gluten withdrawal online, but I really need to read it from someone who's gone through it or something similar.

Although the tests are negative, I am still not convinced. But it's just so frustrating to feel this badly after taking steps to BETTER my health....

Ugh...anyone??

Thanks,

Alison

Celiac testing is absolutely terrible right now. I also tested negative for celiac despite having horrible (mostly neurological, plus some blood sugar related) symptoms when I eat gluten or casein. One thing I like to say, is that if it looks like a duck, walks like a duck, and quacks like a duck, but tests negative for being a duck, then something's wrong with the testing. And believe me, something is definitely wrong with celiac testing, especially that stupid gene test that the majority of people with celiac symptoms fail.

I've gone through gluten withdrawal symptoms, although mine were different. Mine were muscle spasms, random chills in my legs and forehead, feeling the skin on my chest be very sensitive and basically being able to feel as if my shirt was pressing into my chest, random nausea and feeling like I'm about to throw up but I don't, random joint pain in my shoulders, itchiness, and I even had the very left of my body seize up for a split-second. For about a week, I even had my blood sugar randomly go up and down throughout the day. The gluten withdrawal eventually went away, and now I'm having casein withdrawal (same symptoms, but not nearly as bad). A little over a month ago, I started to have fatigue, often after eating (sometimes I get it, sometimes I don't) and headaches, which usually go away after eating.

Celiac affects everyone VERY differently, which is why it's so hard to diagnose. My endocrinologist agrees with me on this, and is sending me away for further tests to see if additional issues might exist (for instance, he tells me that celiac can cause thyroid issues). You might want to go schedule an appointment with an endocrinologist if possible; they could probably help you more than a regular doctor or even a GI (who tend to only look for gastrointestinal symptoms) can.

[Alison3]

Thank you so much, CGally81 and OptimisticMom42, for sharing your wisdom. It gives me much hope knowing that I will get past this with patience and determination. And thanks for the advice about seeing an endocrinologist. It's something I've been meaning to do for quite some time. I think the time is now.

Thanks again,

Alison

[bluebonnet]

several people on this site (myself included) felt the withdraw symptoms. they won't last and you will feel better soon (some issues heal quicker than others though). i'm just over 2 weeks into eating gluten free. by the way, my first blood test came back negative but another lab confirmed celiac. trust your instinct and don't give up!

[sandsurfgirl]

Celiac testing is a joke IMO. I came back positive on blood tests but my idiot doctor said to keep eating gluten to confirm with a biopsy. So I promptly switched docs and will be seeing the new one next week. We all have bad doctor and diagnosis stories. I've read very few where they had a traditional positive blood test and positive biopsy and went their merry way.

The withdrawals have been awful for me. I ended up in the E.R. 2 1/2 weeks ago with an attack. When all my heart tests came back normal the doc, who is a celiac said my history sounded like classic celiac to him.

I'm still recovering from that attack 15 days later. I had 2 good days, and then yesterday had dizzy spells, alternating between C and D all day long and felt weak and out of sorts. Last night terrible brain fog for like half an hour. Today it's better but still not great. I posted that I might have been glutened but some said it just could be withdrawals still and eating foods that are too hard to digest.

However, even with the setbacks, I am getting a bit better everyday. I'm keeping a log of symptoms and daily there is improvement in something. Hang in there!

[lvanderb]

Hi Alison,

Well, I really really hope it's not Krohn's!

I just wanted to share that my husband had this type of withdrawal... he was good for the first 7 days, but the next 7 days, gosh, he was ready to eat gluten again! We struggled through day by day and after 2 weeks, his symptoms started to gradually go away again.

He was never tested for Celiac or anything else, as our dr. diagnosed his problems as normal and stress-related. He's much much better now. So is my daughter, whose problems were also supposedly treatable by less stress and anti-acids and pills for her headaches.

[Reba32]

you can be gluten intolerant and not have Celiac disease. Gluten intolerance won't show up on a blood test.

[Alison3]

My allergist called with the official results of the negative tests, saying that I am okay to eat gluten. I told her that I'd been gluten-free for 7 days and my symptoms got worse. Instead of seeing a connection there, she stated that it definitely isn't gluten-related then; that it's probably crohns or colitis. (HUH?!)

WHY WON'T THEY LISTEN??????????????? I would love to see a naturopath, but OF COURSE my insurance won't touch it....ugh....It's up to me I guess. My doctors can give me all the pills in the world to treat my symptoms, but I want to find out the cause of these issues. And if my gastro even MENTIONS Prednisone again I am going to scream. As if he MIGHT be able to convince me after I've made it abundantly clear that it's simply NOT an option.....

Just needed to vent.

Thanks. lol

[VickiLynn]

My allergist called with the official results of the negative tests, saying that I am okay to eat gluten. I told her that I'd been gluten-free for 7 days and my symptoms got worse. Instead of seeing a connection there, she stated that it definitely isn't gluten-related then; that it's probably crohns or colitis. (HUH?!)

WHY WON'T THEY LISTEN??????????????? I would love to see a naturopath, but OF COURSE my insurance won't touch it....ugh....It's up to me I guess. My doctors can give me all the pills in the world to treat my symptoms, but I want to find out the cause of these issues. And if my gastro even MENTIONS Prednisone again I am going to scream. As if he MIGHT be able to convince me after I've made it abundantly clear that it's simply NOT an option.....

Just needed to vent.

Thanks. lol

My diagnosis was 100% positive for Celiac Disease with a blood test 15 years ago. At the time I had lost so much weight I looked emaciated. My hair was falling out and I had many other symptoms. I felt a "little" better after 2 weeks on a gluten-free diet, as much as I could figure out about it 15 years ago. It took 6 months before I felt like I might be able to be a healthy person again. You have to remember that if gluten is truly toxic to your system then your entire system is out of whack. It needs time to heal. Patience is so hard but necessary. One thing that really helps me is mega doses of Calcium. I would swear by it. Also, doctors just don't know enough about this disease. Sad fact, but true. I started blogging about my experience hoping to help others. You can check it out at Open Original Shared Link

[dreacakes]

Alison-

Your withdrawal symptoms sound a lot like what I'm going through right now. I'm in week 2 of gluten free. Just a few days ago I felt AMAZING, so much energy, less pain (I have fibromyalgia type joint and tendon pains), I was in a great mood too. Then on friday my energy dipped, and by Sunday I felt like I'd been hit by a bus.

I'm trying to eat really gentle foods, no nightshades, no soy, mostly whole un-processed foods, and I'm already vegan so there's no dairy in the mix.

I'm so glad I found this website and all of these posts about withdrawal. I was so scared something was really wrong when I started to feel worse than I did before!

I certainly hope I feel better soon though... man, this is no fun.

How long did it take most people to feel better?

[alpha752]

Im in the same boat too. Been gluten-free for a little over a week, started feeling better, now feel horrible. If feels like ive been glutened, but I have been going out of my way to eat things that are specifically gluten-free (at great expense I might add). Its very discouraging. I thought I would be done with this crap.

[Switch2GF]

Lots of good questions in this thread.

My doctors can give me all the pills in the world to treat my symptoms, but I want to find out the cause of these issues.

Have you tried pills before?

There is no pill for celiac or gluten. Eating gluten free is the only prescription.

I certainly hope I feel better soon though... man, this is no fun.

How long did it take most people to feel better?

This all depends on the condition of the person's intestines and body. Your intestines will heal over time if you are 100% gluten free. The length of time could be 3 months to years. My intestines were only mildly damaged and I was not having the typical stomach symptoms. I was told that my intestines would heal in 3 to 6 months. I noticed a difference in how I felt daily in about a month, but could tell I was back to "normal" in about 6 months.

Someone like my dad or sister who were in really bad shape can take a long time. Since their bodies weren't taking in all the nutrients for years, they developed other problems. Although, their intestines may have healed, and stomach symptoms were gone in a few months, other problems too longer.

Stick with it... feeling better will be the biggest motivator of all!

[sandsurfgirl]

It just occurred to me that the fact that somebody gets sicker going gluten free should be an indicator that they do have celiac or gluten intolerance. I think that somebody who didn't have a gluten problem wouldn't feel too much difference whether they were on gluten or not. The withdrawals are a real process and they can be awful.

[Alison3]

Alison-

Your withdrawal symptoms sound a lot like what I'm going through right now. I'm in week 2 of gluten free. Just a few days ago I felt AMAZING, so much energy, less pain (I have fibromyalgia type joint and tendon pains), I was in a great mood too. Then on friday my energy dipped, and by Sunday I felt like I'd been hit by a bus.

I'm trying to eat really gentle foods, no nightshades, no soy, mostly whole un-processed foods, and I'm already vegan so there's no dairy in the mix.

I'm so glad I found this website and all of these posts about withdrawal. I was so scared something was really wrong when I started to feel worse than I did before!

I certainly hope I feel better soon though... man, this is no fun.

How long did it take most people to feel better?

I have now been gluten-free for over a month. I am just STARTING to feel a LITTLE better. My digestive "distress" (bloating, gas, diarrhea, cramping) is less frequent, my joint pain and headaches are much less severe, and I am starting to feel a little more energetic. I actually WANT to exercise sometimes! lol That's rare for me. I have gone years just feeling sluggish and achy. I do feel like there's finally a light at the end of the tunnel now. A few weeks ago, I wasn't so sure. I am so glad I stuck it out. And I did have gluten on purpose about 1 1/2 weeks ago as a test...Whoa....I don't care what my allergist told me about my "test results". I know my body and it doesn't like gluten.

[sandsurfgirl]

I have now been gluten-free for over a month. I am just STARTING to feel a LITTLE better. My digestive "distress" (bloating, gas, diarrhea, cramping) is less frequent, my joint pain and headaches are much less severe, and I am starting to feel a little more energetic. I actually WANT to exercise sometimes! lol That's rare for me. I have gone years just feeling sluggish and achy. I do feel like there's finally a light at the end of the tunnel now. A few weeks ago, I wasn't so sure. I am so glad I stuck it out. And I did have gluten on purpose about 1 1/2 weeks ago as a test...Whoa....I don't care what my allergist told me about my "test results". I know my body and it doesn't like gluten.

I'm on week 5 and I'm just starting to have good days.

[GFLindsey]

Today is my fourth week of going gluten-free. I am so happy I read this thread today, because I have been discouraged. I am definitely feeling better -- very few instances of D, less stomach pain now that my celiac-related gastritis is healing, gaining weight back, and I actually have an appetite again! However, some things have recently appeared since going gluten-free and some have gotten worse. My hair is falling out and breaking off easily. I get a dull headache every afternoon - something that has never happened before. Also, I am starting to feel the effects of the "brain fog" everyone talks about. There are times when I can barely think in a full sentence. I used to read at least an hour every night and now can barely make it through a page. At work I can hardly even stay on task most days (like right now.. haha). I was doubting my Celiac diagnosis, and thought maybe it was incorrect. However, maybe these are actually withdrawal symptoms??

Any thoughts??

[sandsurfgirl]

Today is my fourth week of going gluten-free. I am so happy I read this thread today, because I have been discouraged. I am definitely feeling better -- very few instances of D, less stomach pain now that my celiac-related gastritis is healing, gaining weight back, and I actually have an appetite again! However, some things have recently appeared since going gluten-free and some have gotten worse. My hair is falling out and breaking off easily. I get a dull headache every afternoon - something that has never happened before. Also, I am starting to feel the effects of the "brain fog" everyone talks about. There are times when I can barely think in a full sentence. I used to read at least an hour every night and now can barely make it through a page. At work I can hardly even stay on task most days (like right now.. haha). I was doubting my Celiac diagnosis, and thought maybe it was incorrect. However, maybe these are actually withdrawal symptoms??

Any thoughts??

Sounds like withdrawal. I've gone back and read so many threads on here about withdrawal and it's definitey a process. Things will get better, then get worse, steps forward, steps back.

Have you gone to a simple diet like everyone recommends? That has helped me a lot, and I wish I had done it right from the start. It's not always fun, but it's not forever and it will help.

Also, REST as much as you can. Your body has all its resources in your gut healing it and it needs you to give it a break as much as you can. Last weekend I spent the whole weekend in bed and it made a huge difference for me this week. In the afternoons I've been taking it easy and trying to get to bed at a decent time. Rest is so important.

Week 4 I was feeling pretty awful too and now week 5 is better. Not 100% by any means but improved to a large degree.