laura1959

Sadly, I do not have any vintage cast iron to send to any of you  .  We do have a bunch of coated stuff that is going to have to go away.  Hubby went out and bought a beautiful stainless steel skillet yesterday for me to use to make a stir fry, which was delicious.  

I went out and purchased a packet of these at Target:  Open Original Shared Link

They take up almost no space and I can store them in the original plastic sleeve they came in.  For the time being, they seem to be all I need and they also make great safe surfaces for placing my utensils while cooking.  A fairly low cost solution.  

Unfortunately, I had an endoscopy about a month ago but it was prior to suspicion of celiac, so they didn't go far enough in to diagnose this.  I'm sure the insurance company won't pay for another one and it would be hard to talk my doctor into ordering it even if they would, as he seems to think the proof is in the pudding, so to speak.  He is more concerned with the results from diet trials and whether I feel better than about test results.  

Thanks everyone.  I know how to do an elimination diet; had to put one of my dogs on one in order to keep him alive when he developed a malabsorption issue several years ago.  My personal opinion is that when stuff is working you don't mess with it.  

I'm five days into this now and doing pretty well.  The horrible withdrawal I had a few weeks ago when I tried this hasn't manifested yet, which is good.  I feel  a little bit brain fogged this morning, but that's not unusual for me.  My moods and energy are pretty good.  

On the downside, I just got a call from my doctor's office and the celiac panel they ran last week was normal, so no official confirmation of this problem is forthcoming.  That means I'll always feel like I'm stabbing in the dark a bit, especially since I have been through so many other theories and tests regarding my chronic fatigue through the years.  It would have been much easier to feel confident and hopeful and sustain that feeling if the tests had been positive, and now I am back to that sinking feeling of, "oh, this is just another dead end you'll pursue for a while which isn't going to make a bit of difference."  

That being said, I'm resolved to soldier on.  I do feel better.  Not a lot, but enough to feel like there's value in continuing this.  The doctor told me to expect that the test might be negative and to stay on the diet anyway for at least two months before making a decision about whether it's helping me.  That is the plan, and I'm sticking to it-- just with a heavier heart than I might have had, otherwise.  

Thanks!  I went out and bought a new colander that will only be used for my own foods, and also some of those thin cutting mats that can double as clean surfaces for resting my utensils while I cook.  Made a nice gluten-free meal this afternoon and am still feeling okay a couple hours after eating it.  Hopefully we continue to move forward and this will be a bump in the road rather than a huge setback.  

Thanks.  The only thing I'm eliminating is gluten right now.  I'll keep my eyes open for other reactions; this is the first time I had that particular brand of pasta so I suppose anything is possible.  I don't have another package of it but maybe next week I will buy more and see how it goes when I know everything is prepared cleanly.  

I feel soooo stupid, after posting here about how to avoid cross contamination I managed to do it, anyway!  I live in a town that actually has a gluten free store.  My husband and I went there yesterday afternoon and bought some food then came home and he made dinner.  He made a pesto using basil from the farmer's market and we put that over the gluten free linguine that we bought there.  

Oh, it was so delicious, but within a couple of hours I was bloating and miserable, and I spent the rest of the evening running in and out of the bathroom.  I had been so happy that after only three days I was starting to feel better already.  

So, the cross contamination most likely happened in our kitchen.  Hubby used a plastic utensil to serve the noodles and had strained them in our stainless steel colander, so I figure these items were probably contaminated.  The colander, of course, is often used for pasta and the utensil he used was designed for that purpose.  So I'm groggy and foggy this morning and feel as though I am back to day one again.  

Today I am going to go out and buy a new colander and cutting board, so that we have something I can use that I know is not contaminated.  This diet is very frustrating.  

I just told my husband about sanding down the one cutting board and he said, "we could do that to all of the wooden ones."  I suppose we could.  Thanks again!  

Thank you!  

My husband does most of the cooking here, due to my chronically low energy levels.  Hopefully, that can change if I start feeling better on the gluten free diet.  

I've been talking with him about cross contamination.  We currently have an array of wooden cutting boards that are used for preparing all manner of foods, including meats and salad greens, as well as breads.  Obviously, those are going to have to be de-glutened.  What's the best way?  Or should I just toss them out?  (one is built into the counter so that would be a problem).  

Any other advice for avoiding cc?  I'm planning to get all the gluten containing foods out of here over the next few weeks.  Been eating foods myself that are self contained to avoid CC, but I can't eat like that forever.  Will probably buy a new toaster oven (we need one anyway) once I get all the bread out of here and convince hubby not to bring that crap into our home anymore.  He read the book "Wheat Belly" a few months ago and got all gung-ho over not eating wheat for about a week, so maybe it won't be too hard to convince him.  

Any other advice?  

It certainly seems to have a solid basis.  I just googled "gluten opioid peptide" and a whole bunch of scholarly articles came up.  Here's one:  

Open Original Shared Link

And the search is here:  

Open Original Shared Link

So I'm going with the idea that there is, in fact, a "real" opioid-like withdrawal component to this.  

I'm not going to try to taper off of gluten, though, for reasons already noted (I want bone healing to begin).  My back hurts, and now that I know I have osteoporosis, that worries me.  I do think that for someone who has less systemic damage than I apparently do it could be an option but I would think most people would want/need to get their digestive system functioning as soon as possible.  

Interestingly, today is day three without gluten for me (again) and, while I'm feeling a little fuzzy, it's not quite as bad as it was when I did this before.  Hoping I can get through it with a positive attitude and holding out the hope of feeling better as the days go by.  

Here's an abstract from an old 1984 study that talks more about the opioid-gluten metabolic link.  I am running out the door but will do another pubmed search a little later to see if there's something more recent.  

Open Original Shared Link

Glad you got to enjoy them, even if only in dreamland  I hope you feel better from your bug soon!  

I am new to celiac, but learned a lot about it through Googling things like "celiac symptoms" and so forth.  This site has a lot of good information if you go to the home page at www.celiac.com and start reading some of the links.  

My understanding is that there is no perfect cure but that you can have healing that will last as long as you do not eat gluten containing foods again.  I think that hidden gluten, or cross-contamination, is a common fear and there is a lot written on that as well.  You will have to make changes in how you prepare your food and work to get all sources of gluten out of your kitchen.  Also, you will need to learn how to read labels on foods and how to determine ingredients that mean "gluten."  

Check out some of the links on this site and other sites dedicated to gluten-free diets and celiac disease.  Hopefully you can get a lot of your questions answered that way.  

It could be.  I work with doctors who do medical research, and the advice I get about things, even from professionals who are up on the literature, is all over the map.  Since I work in research I tend to read a lot, and it may be that I'm the one overthinking, but I do understand how compounds break down through metabolic processes and these metabolic byproducts do affect your body.  This is one of the main things they look at in drug research to determine if a compound is safe to ingest.  That's why the theory made sense to me, though I don't really know if it's true for gluten at all!  

I am so with you on the bone meds.  I did quite a lot of my own research on those when I was diagnosed last month, and they are nasty.  Am using supplements and weight bearing exercise as well, but it's early days for me.  I really hope you will show some improvement on your next scan.  

Well, at the end of gluten free day 1, I actually feel pretty well.  I was tired when I got home, but rested a bit, and now I am okay.  I remember that last time it really hit me by day 3, so we'll just plow through this as best as we can and see how it goes.  

I have osteoporosis, recently diagnosed, and as I was doing my osteo-walk tonight I realized that I will not have bone regeneration unless I get the gluten out of my system entirely.  So my idea about tapering, even if it would work, probably isn't something I have the luxury to fool around with.  All these things have hit at the same time so I'm really wrapping my head around a lot at once.  It seems like getting the gluten under control will be the key to everything else that's wrong.  

I was born in 1959 also, Laura...it was a good year! 

 

To answer your question.....there is no methadone for making symptoms any easier in transitioning to a gluten-free diet.  That would be nice, wouldn't it?  I am not sure there is actually a withdrawal, either. What I think is that you will not be entirely gluten-free once you stop eating gluten...even 100%. And once you stop, your symptoms don't disappear overnight.  Many people, including myself, had symptoms for awhile after going 100% gluten-free, because you are sick and your body is damaged and needs healing.  It's overall damage and you probably have vitamin deficiencies and other problems, all caused by eating gluten.  When I went gluten-free, the initial and most severe symptoms like nausea and the Big D stopped within 3 days but I still felt like I had been hit by a truck.  The fatigue was bad but I had suffered from it for so long, I had no idea what normal was.  You also don't know if you have other underlying issues that go along with Celiac. It can be very hard to figure out.  All of the symptoms you listed are flaming Celiac symptoms and they can modulate for awhile until healing starts to really kick in.

 

If you need to be gluten-free, then the best thing to do is go gluten-free 100% and not eat small amounts because that will prolong your misery.  I understand what you were trying to ask but if you were diagnosed later, like many of us, and there is a lot of damage, I think that's the problem and it does not go away overnight.  This isn't like weaning off of heroin...although honestly, I never did that so can't really compare. 

 

Try and post thyroid numbers when you can.  That still could be your problem, even though they said it was all fine.  How many times had I heard that before? 

Thanks so much.  Yep, I was born in 1959 so have been up against some of these symptoms for a very long time.  

I had read on some other sites about gluten that it breaks down into an opioid-like substance in the intestines, and that the withdrawal is exactly like withdrawing from heroin because, essentially, that's what's happening, and that this isn't related at all to the celiac symptoms.  So I guess there is no truth to that.  

This is certainly an interesting, new world that I find myself in.  So much to learn and so much to wade through, separating wheat from chaff (no pun intended).  From the bottom of my heart I appreciate the guidance and knowledge shared here.  I would be lost without this place right now.  

I passed the threshold of ten posts this morning and am now able to post without moderator approval.  I think once you pass 10, those warnings and notices you see will go away.  

I don't have the numbers on the thyroid testing; the thyroid tests were run by the endocrinologist on 7/15 and I was told over the phone that everything is fine with all of the testing they did.  They did do several tests in the thyroid series, not just the basic ones I've had in the past.  My doctor's office did not yet have those results in their file but once everything is in I am planning to ask them for a copy of my entire file.  I'll let you know what more I learn about the thyroid results once I do that.  

Not a good idea because even tiny amounts will aggravate your immune system so you will never calm it down until you stop gluten entirely....100%.  I know that is not what you wanted to hear. There is no easy way around this problem, in the beginning. 

I know that it would be pushing back recovery from Celiac by however long the weaning process takes, but I've apparently been pushing that back for 54 years already!  The question I'm posing is whether one can successfully wean to a gluten-free diet and avoid the lion's share of the gluten withdrawal symptoms prior to becoming entirely gluten-free.  Has anyone tried this?  If so, did it work and would you do it that way again?    

**Edited to add** My understanding is that gluten withdrawal is similar to a drug withdrawal and that the symptoms of gluten withdrawal aren't celiac symptoms.  Is that not correct?  

Being a mother with small ones in tow, I needed to muddle through somehow.  I had some help from my older children and managed a nap several days just after lunch.  I only did what I had to do, but this had been quite usual for  a number of years.  Stay home when you can and rest.  Don't expect too much of yourself for a time.  Put in some time on the forum and ask questions.

 

Get Better,  ***

D

Thank you!  And thanks to everyone who has offered advice.  

I have another thought.  Has anyone tried slowly withdrawing gluten?  Like tapering off of it, as you would an addictive drug?  Any chance that would be helpful?  

after years of complaining/feeling sick/trudging onward, half-dead, when i finally got diagnosed (O MY GOSH this is REAL) i 'allowed' myself to rest and take it easy, starting with the withdrawals.  i babied myself:  eat something, drink lots of fluids, then back to bed.  when there was "nothing" wrong with me, i didn't allow myself to be *sick* - maybe i got a little convinced after all the doctors/tests that resulted in no diagnosis except the dreaded IBS that i should suck it up and stop being such a wuss.  does that make any sense?  it's time to take care of YOU i guess is what i'm trying to say.  good luck and hope every day gets better than the last!

It makes sense; I'm just not sure I have the luxury of being able to take that time in the near future.  I work for a small department at a University with a lean administrative staff.  My immediate supervisor is the department manager, and she will be on an extended vacation soon, and I can't afford to have my head in a fog while she is away.  We are also kicking off a new initiative that I have been assigned to manage (until they hire someone to permanently run it at three salary levels above mine, but that's another story).  That initiative is on a tight timetable and needs to be planned now.  Waiting until after that is under control might happen, but there will always be something new that needs to be handled.  I'm not sure I can go to the doctor and get a medical dispensation for gluten withdrawal, but that's what it would take for me to take time off right now.  

I guess if things get really bad I could always back off the diet a bit and wait until she returns, but it's like trading one set of symptoms for another and indefinitely putting off feeling as good as I can.  A little bit frustrating!  Hopefully I can take some time to baby myself 

I never went through any withdrawal but I was very sick at diagnosis so I couldn't have gotten any worse than I was.  But from what you describe, you really should have your thyroid tested because not being able to get out of bed screams of a hypo thyroid problem.  It is common to Celiac and I have both myself.  Stopping gluten can sometimes make other problems come to the forefront and that is what I experienced.  You should feel somewhat better but not feel worse so maybe you have another problem on top of the gluten problem and you are feeling that more now?  My biggest symptom of a thyroid issue was not being able to get out of bed.  It took major effort for me to get up and go to work. 

 

If they test you, make sure they do a full thyroid panel and not just the TSH. 

Thanks.  I had that testing done last week, as well as parathyroid testing.  Those are all good, so Celiac is the diagnosis of exclusion at this point.  I have had my thyroid tested several times in the past as it's always the first thing the PCPs go to when you complain of fatigue.  Lately I just don't complain of fatigue anymore because, you know, it's kind of pointless.  If treating Celiac manages to fix the fatigue, I will be so happy.  So sorry that you experienced this after you stopped the gluten. I hope you are feeling much better now that they have found this.

If you have sick days or vacation time you can take you might consider doing so. If not take the advice above and try to rest as much as you can while going through the withdrawl. Remind yourself often that it is a temporary thing and that it will end. Be easy on yourself and let the dust bunnies wait or if you have family try to get them to pitch in on household chores during that time.

Withdrawl is tough but it does end. The one good thing about withdrawl is that it is a clear sign that you need to be gluten free whether testing shows positive or not.

I had been wondering if the gluten withdrawal had any significane in terms of being an indicator of likely disease.  Are you saying that non-celiacs don't go through it?

I can't think of any reason he would.  He seemed pretty accepting of the likelihood that this was my problem, and very positive about the benefits of a gluten-free diet.  I think that if, for some reason, he were to suggest that, I would just tell him no.  I don't have to do everything the doctors suggest.