laura1959

I was gluten free for five days and I thought I was going to die.  I was sleepy (more than usual), brain fogged (more than usual), lethargic and miserable.  I went back to eating gluten because I needed to be tested, but am faced with having to go off it again.  

I work full time and during those five days I could barely pull myself out of bed.  How does anyone function during gluten withdrawal?  

I was off gluten for five days, and he asked me about that.  I told him that I had a lot of brain fog and sleepiness but that my gastrointestinal problems seemed to improve.  Since going back on the gluten again I've started having urgency and am back to feeling bloated.  

Some of you may recall my introductory post where I mentioned recently having multiple medical tests coming back with abnormal results.  I'd arranged for a visit with my doctor to go over those results, suspecting celiac.  

Well, I saw my primary care doctor today, and he agreed. He told me to stop eating gluten and gave me orders for a celiac blood test. He also said that the test would not be definitive. If it comes up positive, we have an answer but he said that there are many false negatives. I knew this, but was glad to hear him say it. He said that if I get a negative result I should stay on the diet for at least six to eight weeks before deciding if it's working for me or not. Of course, if it's positive, I stay on the diet for life.

I am relieved that I didn't have to argue with him to get this test.  He said he has many patients on a gluten free diet who are feeling better than they ever did with gluten in their systems.  What a relief to have that out of the way. 

All right, I think you have convinced me that I should eat normally and then beg for the test when I see him.  It will be interesting to see how eating normally affects me after the five days.  Thank you very much.  This site has a wealth of knowledge.  

Thanks; I can't reach my doctor right now because he's on vacation.  July 23 was the earliest appointment I could get with him due to his vacation schedule.  

Today is my fifth day gluten-free.  I'm still feeling quite foggy; would five days off of gluten be enough to mess up the test results if I decided to go back to eating normally until after I speak with him?  I'm on the fence about moving forward toward asking for testing or just continuing this course to see how I end up feeling.  Mainly I just want to go back to bed and sleep for three hours, but it's the middle of my workday so that's out of the question!

I have never seen any research that has investigated damage to the body caused by 'gluten intolerance'.

Lack of study does not mean lack of existence.

To suggest to anyone that they can eat gluten and suffer no harm is irresponsible. You have no way of determining what damage any individual is, or isn't doing to themselves by consuming a substance that may, or may not be harmful to them.

I realize this is an old post and I am new here, but I wanted to address this if the moderators will allow the post to go through.  

The natures of autoimmune disease, versus allergic reaction, versus immune reaction, are very different.  Celiac is an autoimmune disease.  In autoimmune disease, your body's immune system is actually attacking your organs, having decided that your organs (or some portion thereof) are foreign to the body and need to be destroyed.  By its very nature, autoimmune disease has the potential to do enormous systemic damage to every organ in the body, much more so than allergy or immune response.  The original poster was probably aware of this.  

I'm new to the celiac world but not new to the concept of autoimmune disease and I think it is probably very important to distinguish between these conditions for this very reason. 

Yes, it's quite daunting to think that, if this is my problem, I will not be able to eat certain things again.  On the other hand, if it fixes the fatigue that has plagued me my entire life, it will be well worth it.  I'll take your advice and go on an eating binge this weekend.  Seems to me that eating gluten for another 10 days will be a lot easier than having to eat it later for three months.  Kind of a drag because I am feeling a bit better this evening-- not as bloated as I usually am.  

Yes, I am a musician, a bass guitarist in fact, but played my very first "bass" notes on an Ovation nylon string guitar (they weren't really bass notes, just playing the bass part.  I fell in love with bass lines and the rest wrote itself.  My ex and I also had a little guitar shop for a while but that was a few years ago.  Nowadays I make my living in more conventional ways!  

Thank you for your advice.  I will continue to read here and learn.  

Thank you.  I'm not thrilled about the withdrawal symptoms.  

If I can talk my doctor into ordering tests, I'd go off the gluten free diet for a while before I go in for the testing.   How long would be recommended?  If I'm feeling much better by then I could possibly skip it, but it's probably worthwhile to have a diagnosis on file in case I have issues down the road.  

Love your avatar.  Been a while since I saw a pretty Adamas  

In the past month I have been diagnosed with osteoporosis (age 54). I have also been told that my liver enzymes are now slightly elevated.  I recently underwent a colonoscopy and endoscopy due to increases in digestive problems but I have been constipated for so long I have always considered it my normal. Unfortunately, no one was looking for celiac so the small intestine was not viewed or biopsied.  I am always bloated, frequently gassy and I have GERD-- now I know that I have Barrett's Esophagus from that.  I have suffered with chronic fatigue for many years, have eczema, have multiple environmental allergies, headaches (migraine and sinus).  

It seems as though all of this has hit a tipping point, because most of these results have just come to my attention within the past three or four weeks.  Now I'm sitting here looking at all of this diverse health stuff and when I put it all together it seems to spell a high probability of celiac disease.  

Unfortunately, all this testing is being done by a series of specialists, none of whom seems to know what the others are finding.  I have called my Primary Care doc and set up an appointment with him for July 23 to look at all of this and see if I can convince him to do whatever testing needs to be done to confirm or rule out celiac.  I think it would be important to know if all of this has an underlying cause because the treatments for some of these conditions (osteoporosis vs. GERD, for example) are contradictory and I feel like I am drowning in a sea of new information with nobody working to tie any of it together.  

In the meantime, I'm experimenting with gluten-free eating and, frankly, I feel horrible.  Today is the second day of the diet and I am tired and brain fogged to a degree that's pretty extreme, even for me.  Please tell me this is normal at first.  Any advice about how to talk with my doctor about my fears would be helpful.  Thanks.