laura1959

The genetic testing is in, and I do not have the marker at HLA-DQ2.5 that is most often associated with celiac disease.  

However, I do have things at other places that place me at slight risk for non-specific inflammatory problems that can be associated with celiac disease.  Here's what the report says:  

4q27 region

Thanks; since I wrote this I went back to gluten for a bit, and now am back to gluten free.  I'm doing okay.  The gastritis has resolved, though I had another bout of something which I really think from the symptoms was a very mild case of pancreatitis(!) but that has resolved, as well.  Taking things a day at a time.  

Okay, I take it back  I wouldn't have believed it, but it is true there is lots of misinformation out there!  

I'm relatively new here, and I have to say that you all should relax about the newbies.  Being new does not equal being stupid or gullible.  

This is an obvious troll.  No one is going to take this seriously unless they remain completely uneducated about gluten in all other respects.  Even if the bran didn't contain gluten itself, the mere fact that it's processed from wheat would make it rife with cross contaminants.  I think even a newbie is smart enough to sort that one out  

It will get so much easier, especially when you really start to process that you're feeling so much better and it's all because of the diet!  I related to so much of what you wrote, the random pains, the not waking up feeling refreshed, and have also noticed that these things get better when i eat gluten-free.  Once you really wrap your head around how much being gluten free improves your life, you will never look back.  It does take a little time, as was pointed out, for it to all sink in.  I'm still in the early days too.  

There is a lot of great information about avoiding cross contamination here, so I'd encourage you to continue reading this site, asking questions, and reminding yourself that you are entering into a quality of life that you never thought possible, just by changing what you eat.  It's so worth it!  

Thanks, everyone.  It's probably the classic age-related weight gain.  The ice cream didn't help, either!  

Yeah, I understand what you are saying.  I just wonder-- does that happen to other people here before getting on the gluten-free diet?  Does the metabolism change with age and bring with it the usual weight problems even if you are celiac?  I guess I'm trying to tease out whether my inability to gain at a younger age might have something to do with gluten intolerance or if that is just coincidental.  Same with the wheat germ reaction.  Is there something about wheat germ in particular that makes it particularly heinous, like a high gluten content?   

I guess I'll continue to post in this pre-diagnosis forum, since I probably will never have an official diagnosis.  

I thought I'd ask the group about a couple of things.  The first is wheat germ.  I used to love this stuff, but even back in the day I discovered that, when I'd eat it, I'd get terrible indigestion and stomach pain.  I never had this with other wheat products, just wheat germ.  So I stopped eating it entirely and probably haven't had any in 30 years.  Anyone else experience that with wheat germ before you realized you were GI/celiac?  

The second thing is kind of odd.  I was always very, very thin in my younger years.  We're talking 5'7" and 95lbs kind of thin.  No matter what I'd do, I could not put weight on, and I stayed this way into my late 30's or early 40's, at which point I finally began to gain (I quit smoking and went on an ice cream binge which, I swear, changed my metabolism).  Now, in my 50's, I struggle with weight gain like anyone else my age.  

I know that being very thin and unable to gain weight can be a sign of celiac, but why would it change all on its own without stopping gluten?  Any thoughts?  

Thank you all for making me feel welcome.  Yes, it's an odd thing to have the clear benefit from not eating the stuff, but to have all the testing come back with no indications of disease.  It's clear even after only a few days of not eating gluten again that I have much more energy and focus without that in my diet.  Whatever-- I guess I don't need to hang a label on it, I just need to take it seriously.  It will be interesting to see if the genetic testing shows any elevated risk for celiac.    

My husband was marvelous-- yesterday he went through the cupboards and fridge and got rid of EVERYTHING that might have contained gluten.  All the wheat flour, Bisquick, anything resembling bread or bready stuff, all in the trash.  Then he went out and bought a whole pantry's worth of gluten-free replacement products.  I guess he's on the bandwagon with me, which is wonderful.  

Celtic Queen, you may be right about the spectrum and it may also take some time for the disease to fully develop.  I had a dog with autoimmune disease which was kicked off by a rabies vaccination.  He was healthy for years, up until about 6 months after his last rabies shot, then he just fell apart.  I'm sure any testing for AI when he was younger would have shown nothing, even though it was clearly in there waiting for the right set of circumstances to really kick it out and into a symptomatic state.  Could be the same with gluten intolerance.  

I was here a few weeks ago with a strong suspicion that celiac is my problem.  Since then, I got copies of my antibody test results and decided that they were pretty strong indicators that I do not have celiac.  Before anyone asks, I am sufficient in IgA, so it's not that.  I also discovered that my gastroenterologist did suspect celiac as one possible diagnosis before going in for the endoscopy I had, so it's clear that he would have looked at that region of my intestines.  I had thought that he had not done that before.  Since there's no report of anything amiss from that part of my body, I think I can safely conclude that I do not have celiac disease.  I do have a genetic test out there which will tell me if I have any genetic predisposition to celiac, but I don't expect that to be abnormal, since none of the other stuff was.  

I was borderline low in vitamin D on other testing done around the same time, and decided that was probably the whole of my problem, especially since the improvements I felt on the gluten free diet also correlated with beginning vitamin D supplementation for the osteoporosis.  

So, I decided to chuck the gluten-free diet.  I didn't get intestinally sick after eating gluteny food, but after several weeks I have noticed that the increased energy and mental clarity I had regained after beginning the diet / supplementation has really receded and I'm back to being the slightly stupid slug I had become prior to the diet.  

I guess this means that I have some sort of gluten intolerance which is not celiac disease, so I've decided to adopt the gluten free diet again and just stay with it as though celiac were my problem.  Fatigue and brain-fog are huge things I battle through each day, and if this diet fixes that, for whatever reason, I'm in.  

I didn't really see an appropriate place here for people who aren't true celiacs to participate in discussion about symptoms, etc.  Not sure if I should continue posting on celiac.com as a certified non-celiac, but I will certainly continue to participate here to find information about foods and diet, etc.  Thanks for being here and being such a great resource!  

Thanks.  This was a big shock to me, too.  I had so many problems with my digestive system that I never realized were there.  I knew I had occasional problems with my stomach, but nothing like this.  

They looked at just about everything except the small intestine when they did the endoscopy and the colonoscopy last month. I so wish we had thought to suspect celiac disease before I had the endoscopy done, but it is what it is.  There's no way I'll have another one for at least another year, so I am left to diagnose the old-fashioned way, through observing what happens with the diet change.  By the time they go in there again to check the BE, I'll be gluten free for too long to see anything, I suspect.  

So far in other ways the diet change has been good; I have more energy, better mental focus, and I believe I have less overall bowel distress (less bloating, distention and constipation) but it's too early to know for sure that this is a lasting change.  I sure wish I could get this gastritis resolved and I guess I am going to have to go a little bit bland with my diet in order to help that happen.  I had wanted to avoid that but it's probably necessary.  

Yes, Barrett's esophagus.  I do not know if I have celiac; they did the endoscopy before there was suspicion of celiac and did not go far enough in to get biopsies from the right area.  Antibody tests were "normal" I was told but I am waiting for them to send me the actual results so I can investigate that further.  My doctor asked me to go gluten free as a test to see if it helps.  I have a lot of other problems that point to celiac (osteoporosis at 54, etc.)  

Does anyone have an explanation for this?  I have a diagnosis of gastritis made through endoscopy, but I've never really had much stomach pain-- only occasional, intermittent problems.  I also have GERD which is severe enough to cause cellular changes in my esophagus, and I never had a lot of pain with that, either.    The gastroenterologist gave me a prescription for Prilosec, which I take in the mornings.  

Since going gluten-free approximately three weeks ago, my gastritis has become extremely noticeable and painful.  I have only been on the prilosec for less than a month, as well, and missed one dose about a week ago.  Since then I've been in a lot of discomfort and have been living on Pepto Bismol, which is about the only thing that will calm the pain.  

I know there can be a rebound effect with the PPI's, but I haven't been on them for very long, and I only missed one dose.  The only other explanation I can think of is that there's something going on due to the gluten-free diet and this is somehow part of healing?  Seems strange that my stomach would become so sensitive as a part of healing, but there's a lot that doesn't make sense about these problems I've had.  Anyone have any thoughts about this. or similar experiences?  

Thanks!  You all give me hope, and that's fantastic.  I'm very glad to hear that others are starting to feel more active, too!  Answerseeker, I think my moods have been affected for a long time; I'm just now starting to feel like the person I used to be, mood wise.  I have been so irritable and depressed for a long time.  I hope this all continues to get better for all of us! 

I'm heading into the third week of eating gluten-free, despite the normal test results on the celiac panel.  My doctor wants me to stay on for at least eight weeks anyway, to see if I notice a change.  

Observations so far: I am starting to feel less bloated, and I *seem* to have regained some of the mental agility that had gone missing in recent years. I am less error prone, and I feel more effective and efficient at work. 

More notably, I feel less irritable and more mellow. I am able to relax. I'm also noticing that my time at home in the evenings is slightly more productive. Instead of just getting home and shutting down, I'm beginning to putter around a bit at night, do small loads of laundry and other small tasks that I never had energy for in the evening. 

I have had many years of fatigue and trying various things that I thought would be "the answer," so at this point I'm quite cynical about the odds that this diet will prove a long-term fix for anything.  The jury is out; in the past I've had "placebo effect" improvements that seemed real, but didn't last.  

Maybe it's all coincidental, but I really do hope it lasts and continues in this vein. We shall see. I like the "more mellow" bit, quite a lot. It reminds me of the me I used to be.

I also get cramping in the area below my navel, which I'm pretty sure is related to my intestinal issues and chronic constipation (I'm guessing that is what "C" means here?  Not sure.)  In my case, it often precedes an urgent need to use the bathroom, but not always.  

Had my gallbladder removed about a year and a half ago, and also have occasional stabbing pains where it used to be.  I consider these to be phantom pains, but they may also be due to adhesions at the surgery site.  They only happen occasionally.  That surgery was laparoscopic, so no muscles were cut in order to get the gallbladder out.  If your surgery was done a long time ago, that could be a consideration, but today they are almost always performed with the laparoscopic technique.  

Thanks, Lexi.  I was worried about you, and not being around too much so far, I made assumptions.  Sounds like you are working out what you need to do to make this hard transition.  I admire you for that; not sure I would have been able to be that strong about it when I was your age!  

I had little success trying to explain any of this to my husband.  What I ultimately did was find some good articles on cross contamination and send him an email with links, asking him to read the articles.  In the email I told him that I didn't think he would take it seriously coming from me so maybe if he read it on his own in someone else's words he would understand better.  That did the trick and he's been very supportive since then.  

lexi is doing better, i think  i think i saw her on here, kicking around traveling food ideas, so she is planning ahead for her trip.   we all hit a bump sometimes, i know i have.

 

 

That's good to know!  I don't mean to be a meanie, but I get a bit rankled when I see parents taking their kids' health concerns too lightly.  I hope Lexi will continue to stay here and work toward figuring out how to protect her health.  It's a lot to take on, for sure, even for those who have excellent support systems at home.  Butting out now.  

Thanks for this clarification.  I am new here.  I haven't read through the whole thread or all of her posts and concluded that she was a minor based on her reliance on her parents to feed her, from this thread and others I've seen.  

It sounds like she is struggling with coming to terms with the need to take matters into her own hands as a young adult, and that her parents are not helping her.  Whether she is a minor or not, this is still abusive behavior on the part of her parents, and I think Lexi needs to understand it as such and protect herself accordingly.  

Honestly, I am appalled at this thread.  I can't understand why a parent would willingly give gluten containing foods to a child in their care after a diagnosis of celiac, and I can't understand why society would allow it.  What would we think if a parent withheld insulin from a diabetic child?  We'd call that abuse, and we'd have that parent hauled in front of a judge.  This situation is NO different.  

I have been eating these, figuring I should take it easy and that  I'll do more cooking if I start to feel better in a week or two.  Guess I need to rework this strategy.  

Since she is also gluten-free (or trying), maybe it would be good for both of you to look over information about cross-contamination together and then go through the cupboards and get rid of everything that might be a source for CC.  It sounds like all you'd need to do to make this work would be to get her to step up her game on the gluten front a bit.  This shouldn't be too hard.  Good on you for sticking up for what you need!  

Didn't I read in another thread that you tested positive for celiac?  If that's true, then you really need to start thinking of gluten as a poison to your body.  Your parents need to think that way, too.  Just because it doesn't kill you instantly doesn't mean it isn't going to kill you.  

I'm new to celiac/gluten intolerance myself, and this is the way I am forcing myself to look at any gluten containing foods.  I am much older than you, and have just been diagnosed with many problems stemming from gluten-- brittle bones, kidney disease, liver disease, and many digestive problems.  You don't want to end up where I am in another 20 or 30 years!  I wish I had known I had this problem when I was much younger because I could have prevented so many other problems.  If you take this seriously, you won't have to end up like me.  

"Basically, if it isn't made of glass or metal (is porous) then it is suspect."

 

Except for cast iron. Cast iron is is pourous so it must be replaced too.

 

As for the cutting boards, if you really want to sand them, make sure you sand them so deeply that ANY cuts are completely gone. Personally I would just buy new ones to use and leave the built-in ones for show. OR buy some of those new thin plastic ones to use on top of the old ones.

This is funny, we were both posting about the thin cutting mats at the same time.  That's exactly what I ended up buying.