taynichaf

Also, i want to do all the testing right away..how long do i have to fast for loe blood sugar? andwill fasting mess with my celiac tests?

Two times my blood tests came back negative. I recently had a biopsy that came back negative, but they found GERD and a hiatal hernia.

For some reason, my doctors will not test the full panel and I just don't get why!

Being gluten free for just a few days I can already start to see changes.... I have MANY symptoms of celiac, and now i'm just starting to think that I'm an early celiac... So I am going back to the doctors tomorrow and pleading that they test the full panel for my own sanity! Along with my thyroid levels and to see if im hypoglycemic...

Any advice/tips? I know I might just have NCGS but I will not let this go until they run the full tests... And I want to quit eating gluten already!

Are there any other tests that I should ask for???

Thank you.

Results are in... Negative for celiac :/

Super disappointed because I'm still worried that they are missing something...

For my GERD, i'm supposed to be taking medicine or something and for my constipation I have to be eating high fiber... Example, wheat bread instead of white bread. I just really feel like doctors arnt listening to me....

I was gluten-free 6 weeks before the blood work, and 8 weeks total before the challenge started. I suppose it's possible that my 4 weeks back on gluten weren't long enough to redo the damage undone by 8 weeks of healing, especially since I was "gluten light" prior to going gluten free for about a year...so many "ifs" and "buts" and "maybes" in my situation. One thing is for sure, that challenge was 4 weeks of hell, and, at this moment, I have no doubt that Celiac or NCGI is to blame. Luckily, I don't *need* a diagnosis for school/work/etc at this point. And I did decide to talk to my son's pediatrician at his next well check. Hopefully she is willing to run the Celiac panel if only for my piece of mind.

As long as your happier gluten free!

Ohh.. She better run the tests! I would be so angry if she didn't!

How long were you gluten free prior to the challenge? How long was your challenge? Maybe it was too short, so that's why your results were inconclusive.

Ohh my... I'm so sorry that this happened to you And you were so worried about this all to begin with! Well atleast it is all over now... I'll pray that you get accurate results <3

Good evening everyone I'm coming to you hoping for some shredded insight as to what I'm experiencing. I was diagnosed with celiac disease almost one month ago I quit gluten cold turkey and have progressively started feeling worse and worse and worse to the point that I cannot function. I was a silent celiac with none of the typical symptoms it was a fluke that we found out after I went into my physician complaining of weight gain and chronic fatigue. Since I went gluten-free I've been going through the worst withdrawals. I have been exhausted to the point I cannot function I am now having diarrhea I've been having constant headaches have been completely unable to sleep and have been so weak that I can hardly stand long enough to take a shower.

My physician has me on a plethora of supplements including multivitamins digestive enzymes and amino acids to try to bolster my already depleted system but nothing is helping.

I'm so upset that I'm almost one month in and feeling physically and mentally worse than I have ever felt in my life. I honestly want to just go eat a big old loaf of bread and hope that I will at least go back to feeling normal. I felt crummy to begin with but I feel absolutely horrific now. From everything that I've been told and have read I should be starting to feel better now does anyone else have experience with this?

I'm sorry that I'm unloading I just reached a breaking point mentally between how crummy I feel and how little I can function. I also apologize if there are any typos or weirdness in my words is I've been using my voice recognition from my phone and I may not have caught the errors when I proofread.

This scares me... I am the same way when I stop eating gluten... I'm tired and a mess when I'm eating it, and then once I stop i'm exhausted, but I can usually sleep very well, but I also need to take constant naps to get through the day.. Plus go to bed at around 7ish. I ve only been gluten free for about 2 weeks though, so i'm afraid that one month gluten free will make me feel as crappy as you

One thing, maybe you have another food intolerance? Some celiac members suggested that I get my thyroid tested and something about hypoglycemia.. Maybe you should do the same?

So sorry that your going through this!

I have not been diagnosed with celiac, but I have a problem with gluten. When I had my endoscopy they found I had a hiatal hernia and GERD... So I think gluten intolerance and GERD are tied together a lot.

Fats will help. Slows down the digestion, too.

Also, do you think you might be going a little hypoglycemic? Because that's how I get when I do that...I eat nonstop. Adding fiber rich foods and 2x the protein, and preemptive eating helps. And if it gets too bad, 12 ghiradelli semi sweet chips.

When you go through withdrawal the body can flip out - wouldn't surprise me that your body goes hypoglycemic from withdrawal and from eating gluten....one is from shock, the other from irritation.

Actually this makes a lot of sense... If I don't eat for a long period of time a get really shaky and i get heart palpitations (i think... my heart will feel like it beats rapidly for a short time, then it usually goes away) and probably other symptoms that I don't even realize... And I thought that these were just related to gluten. How do I get tested for this?? I've been going to the doctors a lot and I'm afraid they just think i'm a hypochondriac...

Fats will help. Slows down the digestion, too.

Also, do you think you might be going a little hypoglycemic? Because that's how I get when I do that...I eat nonstop. Adding fiber rich foods and 2x the protein, and preemptive eating helps. And if it gets too bad, 12 ghiradelli semi sweet chips.

When you go through withdrawal the body can flip out - wouldn't surprise me that your body goes hypoglycemic from withdrawal and from eating gluten....one is from shock, the other from irritation.

Hmm... I have no idea! I'll have to do some more research on that... I used to actually think there was something wrong with me that had to do with diabetes... How long did it take you for this problem to go away?

Maybe you have other food intolerances? maybe lactose intolerance, since you said you are eating a lot of yogurts and everything. Lactose intolerance also causes bloating and stuff like that.

So, what did the biopsies show?!

When I went gluten free in October 2010 I had the opposite reaction.

I went hyper and I barely slept and was talking really fast like someone on speed.

 

Later I tried the high protein diet and I was starving on that one.

So that was useless for me.

 

Are you ok with eating cheeze?  

I found eating real cheeze made with real cream really cuts my appetite.

Peanut butter without all the additives is better too as it has less sugar.

I also ate Coconut cream (it's comes in a little box and tastes quite sweet but is low in sugar).

 

I like eating a cut apple and cucumber pieces which is quite filling.

 

I eat broccoli and steamed carrots which I sprinkle with garlic powder.

 

I drink water rather than juice and sodas which are loaded with sugar.

 

Keep on eating and don't starve.

I don't like cheese all that much... But cheddar cheese is pretty good.. I'll think i'll buy some more soon ha. and I already eat A LOT of peanut butter.. And it's the natural kind I love eating natural when I can.

Lol, ohh i'll defiantly keep eating! Ha.

But your lucky that it made you hyper! Ha. I feel like once my body adjusts i'll be more like that too, but for now I need lots of naps! But in general I feel a lot happier and nicer, so i'm good with that  

Yep. When I first went gluten-free I was eating meat, potatoes, veggies, and I would munch on fruit for snacks. And I was ALWAYS hungry!

 

Before gluten-free, I always felt that unless I had meat, I never felt full. After gluten-free I thought it must have been the bread (I lived on burgers) that made me feel full.

 

I suggest you eat lots of small meals instead of three big ones. After a while the hunger will diminish. Gluten acts like a drug and until you "detox" from it, your body will keep craving it.

 

Uh, it took me about three months.

YES. When i'm eating gluten I'm never full either! Ohh my... I'm going to be spending ALL my money on food for the next three months... Lol!

I'm eating my regular diet pretty much, except no bread. I'm eating a lot of fruits, veggies, chicken, peanut butter, rice, rice cakes... and just fairly healthy stuff.

Ohh and im tired all the time... but being gluten free makes it WORSE! I feel like I can get better sleep though.

After my first celiac tests were negative I tried eating gluten free anyways.. I ended up STARVING! I lost weight really fast and I just needed to stuff my face all day! I love food, but it got to the point were I was just so tired of eating lol. Having such a big appetite is what caused me to cave and start eating gluten again and just get more tests done.

Well, gluten free again and I can feel the hunger slowly coming back! How do I deal with this?? Does this happen to anyone else? I've only lasted like a week gluten free because of this...

I had these results come out negative too.... Then I decided to go to a different doctor and get ALL the tests done... But she ran the same exact test :/ Which came back negative again. But that doctor got me in to get an endoscopy, so I can't complain too much. Now just waiting for those results... I was going to try and go to another doctor and get the tests, but I'm so tired of feeling like this, and gluten makes my depression reallllly bad..

So, don't give up yet! Write down the other tests and bring them to your doctor. Ohh, and try to get them to listen to you...

I can understand your disappointment.  It's so backward, isn't it?  To be disappointed when a disease has been ruled out??  I've begun preparing myself for "normal" results, too...caz, as weird as the normals would think this sounds, I know having Celiac would justify all the pain and suffering, and maybe make me seem less crazy to them. To "only have IBS" just doesn't seem to mean enough.  The important thing to consider is Non-Celiac Gluten Sensitivity/Intolerance (I see the terms used interchangeably, not sure which one it really is).  If you have seen improvement on the gluten-free diet, that speaks volumes. More importantly, if you decide to go back to gluten, and your symptoms come raging back, are worse, or change significantly, you'll have an answer.  Celiac or NCGS, gluten really messes with many people.  

 

Anyway, I hope your disappointment is short lived, and things improve for you.

((HUGS))

 

ET correct spelling...but there are probably still lots of mistakes. LOL 

I am preparing myself for normal results as well

But we know we have a problem with gluten, so no matter what our tests says, we should be gluten free! It's tough not having an official disgnoses, but i'm sure, in time, you'll be doing so well on the gluten free diet that your endo results wont make any difference for you... Don't give up the diet!!

Take a look at the lupus diagnostic criteria in the below link. A patient needs to have at least 4 of the criteria met to be diagnosed with lupus.

Open Original Shared Link

I suspected that I had lupus. I have arthralgias, hemotalitic abnormalities, have had a positive ANA in the past a few times, mouth ulcers (when the pain hits), and what could be a malar rash under my roseaca. That is 4, and maybe 5, of the criteria and my doctor says it it most likely the celiac. I am half annoyed and half relieved. Annoyed be ause if it was lupus, I could get treated, and relieved because if it is celiac then my symptoms might actually resolve....What I mean is that lupus is not so etching one would want, but if you suspect lupus, see you doctor and get the blood work done, and show him any symptoms (take pictures of transient ones). Be patient. It often takes years to diagnose that disease. It canbe one of the hardest to pinpoint.

But, before you worry about lupus, give the gluten-free diet some time. It can take months or even years for some symptoms to go (pain seems to be one of the last to resolve). It's only been a shrt time now. Hang in there.

I looked and I don't even fit the criteria.. I must be mixing lupus symptoms with something else.

Lol, thanks everyone! I think it actually is just sunburn! I'm so freaking pale, so it makes sense.

Hi taynichaf, I'm having my endoscopy on the 29th of this month and I'm getting really nervous about it, how did your endoscopy go? im going to have the sedative but im worried that I might wake up during the procedure and im thinking all kinds of things, its scaring me any words of advice would be great x also how did you feel after? did you feel okay or did your throat hurt after? Thanks x

Hi! Good luck! It's really nothing to worry about... I didn't think it was bad at all, but I wasn't that afraid to begin with. I was heavily sedated, and the worst part for me was putting the IV thingy in my hand because I hate needles. My throat didn't hurt that much at all, but they sprayed it with this numbing stuff. Once I was sedated I was knocked out right away lol. I woke up in a chair somewhere and it's all just really bury from there... I only remember little snip-its of people talking to me and everything else is just black. My memory was terrible, and I couldn't comprehend anything the nurse was telling me, lol. And I kept asking my mom the same stuff over and over... Sorry if this sounds kinda scary to you, but it's what happend to me! I went home and passed out and then I felt normalish when I woke up... Just a little out of it and I didn't have much of an appetite, but I never puked or anything.

If you're worried about waking up, let the nurses know that and they can give you reasurance or make sure to give you a large dose. After the procedure, you won't remember much either so it's not bad.

Thanks!

And it just dawned on me that I might have lupus...? How do doctors even check for this?! Would he be able to see it with an endoscopy or anything? Because I have always had some of the symptoms of lupus, but they are also the same for gluten intolerance. I'm very pale and today I was sitting outside for awhile, then an hour later I didn't want to eat anything and my face just felt all flushed and my mom said I was a little warm... I mean it could just be sunburn but i dont know... I have redness across the bridge of my nose and everything, but it's not like the distinct lupus rash... I don't know how to bring this up to my mom because she already thinks I just have a ton of problems ha, but do you think the doctor would have been able to tell somehow if I had lupus?

Yeah I don't remember much...procedure at 9, home by 1130 (according to my hubby) and I slept from 1200-430pm.  Then went back to sleep at 9pm. HAHA!

 

I also "looked normal" so hopefully that's good news.  Something about abnormal z-line, but I don't think that's too big of a deal.  Results might be in as early as Wednesday.  All that really matters right now is that I'm back the good life (gluten free).  Hooray!  

Yay! I think I'll go get myself some good food tomorrow

Let me know your results!

Okay thank you for your response! I The longest I have intentionally gone gluten free is like 1 week... And even then I was amazed with the difference, so i'm pretty excited to see what eating gluten free for longer will be like!