MsCurious

Well so far (only day 3)

Had some brown rice pasta last night and it was actually quite good! I was pleasantly surprised. Should hear back from the dr. about possible Celiac on Monday but in the meantime hoping to feel better soon.

Glad to hear the rice pasta was good. I'm a little worried about the new taste of things to come! Monday is a big day for both of us...hope you have good news, goodnews! I'm going out of state for 3 weeks, about a week after my biopsy... sure hope I don't go through the irritability thing... that would not be fun, when I'm FINALLY visiting family 2000 miles away! Yikes!

Let us know how you do on Monday... I'm eager to hear how your test went.

Really good video. Thanks!

You're very welcome... glad I could help.

I've just started a gluten challenge in order for my doc to run an accurate IgA and TTG blood test. I've been gluten free for 10 months prior. My GI doc said I only had to eat gluten for 1.5-2 weeks. However, everywhere else I've read it can take 4-6 weeks. Which is true?

Hi Kathryn, I posted a reply to your question last night, but I must have just hit the preview button, instead of the post button. I do know that Mayo Clinic, Dr Joseph A Murray, head of Celiac Research at Mayo suggests 4 weeks gluten challenge consuming the equivalent of 4 slices of wheat bread per day. If at four weeks, the test is still negative, he will retest up to 6 months, but not longer. Here is a link to a rather technical video that was made for other doctors, but it has some very helpful info right from the doctor's mouth for you. The gluten challenge is more toward the end of the video, and he specifically tells you how long and how much. Hope this helps. Open Original Shared Link Good luck with your challenge, I think its good that you're doing it.

You are definitely not alone...and you are down to the homestretch. Monday is right around the corner. I just had my endoscopy Wednesday and should hear back today or Monday with the results. I started gluten free yesterday...it was bittersweet. Excited to start and possibly feel better but mentally was a little harder than I thought it would be grocery shopping. And I am suddenly going through doubt that it will help at all. But today is a better day. Good luck to you Monday and glad you are a part of this group and that we can be here to support eachother and be there for eachother through our emotional rollercoasters!

Thanks a bunch goodnews. We're just about at the same point... I will be gluten-free on Monday... and yeah, I think its already starting to sink in... that bittersweet feeling. It's odd, how some days there's no doubt at all, and some days you just wonder... I guess its because it seems so odd that something that causes so much trouble can be fixed with a change in diet. That sounds so easy, but in reality its a big adjustment. I guess we have to be just glad its an easy fix compared to some things. I think my emotions are so up and down right now because of so many things, but I'll get through it just as you will...and hopefully in a month we will look back on this time, and think... it wasn't so bad after all.

However, we don't normally resort to cannibalism

LOL, Mushroom! After the day I've had... I really needed a good laugh, and this did the trick. Thanks for that!

MsCurious, We have gone through so much together. I think we started on the forum about same time. You really have been encouraging to all of us and the articles you have found really changed my life. Remember you have a big family here. Keep us updated you your situation.

Thanks so much Igg... its been a rough day. Yeah, we have been going through a lot together, haven't we? There are several of us who started this testing process about the same time... and it seems like such a long time ago. I'm so happy that I could make things even a little easier for you... not that any of this is easy by any stretch of the imagination. Sweet of you to respond... I don't feel so alone... thanks for that. I'll be sure to let you know what comes of the testing on Monday.

Thanks again... for your kind words. They sure gave me a little lift, and I really needed that today. Its amazing, how little effort a kind word takes... and what a difference it can make in someone's day.

My name is Kathryn and I've been gluten free for 10 months after a positive IGG test. I opted not to do the biopsy, and instead went completely gluten-free. I immediately felt better without gluten, but now I'm developing other symptoms that the GI thinks might suggest Crohn's. This GI is new and didn't do the igg blood test. He doesn't trust the reliability of that blood test, and wants to do the endomysial antibody IgA and TTG. For those, I need to start eating gluten again, which I'm dreading. I've already eaten my first gluten meal (pizza) and already been bloated, nauseous, and just ill. My doctor told me I only needed to eat gluten for 1.5-2 weeks in order for the antibodies to show up. However, I read online that it can take upwards of 1 month. Which is true? How long do I have to eat gluten to ensure the accuracy of the test? How much gluten do I need to eat each day?

Hi KathrynL,

So sorry you have to face a gluten challenge. I know you can hear many different versions of what that entails, and even different doctors seem to give different answers, but this video clip is Dr Joseph A Murray, head of celiac research at Mayo Clinic, Rochester, MN. It's a bit technical and really directed toward doctors, but if you watch it, he will tell you what the gluten challenge consists of timewise, and if at that time the tests are negative, he will give it up to 6 months, but not longer than that. Typically, I believe he says equivalent of four slices of wheat bread per day for 4 weeks for the test to be positive...but up to six months if it shows negative at the four week test point. Open Original Shared Link

This video also explains why some positive biopsies may be false positive. The part about gluten challenge is toward the end of the video. Good luck ...hope this helps.

Hi everybody,

I've been popping in every few days, keeping tabs on how everybody is doing with testing, etc... and trying to get through the waiting period. I'm starting to feel a little anxious, and scared about all the changes coming down the pike. Testing is on Monday, so just a couple more days of waiting, and then I will go gluten free.

That is something I have been sort of "ignoring" because it doesn't seem real yet, but I know I should start cleaning out the cupboards and getting ready for the change. I'm a little terrified... still... of the biopsy and of course the results, and even more terrified of my dad's health situation. He's such a great guy and my mom takes such good care of him, and they have been through so much trying to deal with all that he's going through, but sadly I believe, much of it stems from undiagnosed celiac disease for decades... probably a lifetime. His ataxia is so bad that he fell four times last week, and its so hard for my little mom to be trying to get him up off the floor. I've suggested to her that he be tested, since his symptoms are so pronounced, but I think they are so tired of testing, and so fearful of more bad news, that she doesn't even want to hear what celiac disease is. It makes me so sad, because, he could at the very least stop the progression of the sypmtoms and possibly reverse some of them.

Ugh... so much on my mind, and really nobody to talk to about it. I just sit here with tear filled eyes, wondering if all this testing and waiting will give me answers, for both me and my dad... and a few other family members. I have been trying not to post, because it all is so repetative. Everybody's stories are so similar, and I feel so much compassion and empathy for everybody and what they have gone through, and continue to go through. I only hope I can stay as strong and positive as so many of you have.

It's funny... I'm normally such a strong and positive person, and this whole thing just terrifies me so much. I'm not sure why... because I know I can go gluten free and I'll be fine. I think its just that my dad's health is going downhill so fast, and I feel like I know something that would help him, but I "won't be heard"... its like having my hands tied while I watch in vain.

Anyway, sorry to unload, yet again... just feeling the need to talk with people who understand. Thanks for being there for me... I don't know what I would have done thus far without the support of the wonderful people here. Hope everybody's journeys to answers are going well. Sorry for the mini-meltdown.

I saw a new doc that seems promising. Found in him on the "good doc" list and he was progressive in his attitude about thryoid disease and celiac. He told me he didnt care about the blood test or the endoscopy (told me to skip it). Said that based on my symptons he would recommend me cutting out gluten immediately.

Good for you nuttmegs17! So good to hear you are having better luck with doc now! Hope you feel all better really soon.

hi... thanks for all of your input. I was going to get on here to write the reason I don't like saying gluten sensitivity is that it just doesn't do it justice... I mean in the book I read it said this is when people are ok having a little but alot gets them in trouble. I seem to get in trouble with even a little bit. I think it would work to tell people that I have found that I have a glutence intolerance - makes me sick to eat.

thanks!!!

Sounds to me like you DO have gluten intolerance, at the least. Mostly the people here that have self diagnosed from what I can tell, tried and tried to get idiot doctors to take them seriously, or couldn't get the doctors to do tests, so they removed the gluten to see if that helped and it did. Some tried to go back on gluten to get tested, but couldn't tolerate the gluten long enough to do that. Just that in itself speaks volumes. It is my feeling that if you're not diagnosed, and you have not gone gluten free for more than a few days/week or two, you should try to get diagnosed by a doctor, simply because if you DO have Celiac... there are lots of complications and other issues that can arise and need to be monitored. If you've already gone gluten-free and can't tolerated gluten long enough to get tested, you're at the very least gluten intolerant, but in cases where people are self diagnosed, I would hope like heck they REALLY are very very careful and strict with the diet, because like Dr Fansano says, being 99% gluten free just isn't enough if you have celiac. Just tell people you're gluten intolerant, and leave it at that. And good luck and feel better!

I'm so happy for you that you have an answer... and a solution! That's wonderful... good luck with your new gluten free lifestyle.

MsCurisous, you expressed very well the feeling one gets when treated so poorly. Many doctors whether from ignorance, not wanting to get to involved or figuring we would not understand take this route with there patients. It is very frustrating to be treated in such a manner. Walking with ones feet from their practice and not letting them know they have been fired is maybe the most appropriate. Just before I read your post I was checking on the background of a doctor on angieslist.com. I saw the name of a doctor that had been snippy with me. I looked at the write ups on this doctor by others. Lo and behold several had written about the same snippiness and the one way dictatorial conversations. So if this is any consolation on your treatment by your doctor, most likely many patients will vote the same way you have and fire this doctor by just not coming back to their practice. Glad you have a better doctor to see. Keep us updated.

Thanks Igg. It's been such a long haul for me, with this testing, and finding new doc, etc. First blood test was January 25, and I don't have my endo/biopsy until April 11. Today was an exceptionally bad day for me. One of those days... the intolerance is really rearing its ugly head in a big way. Some days are not so bad but we had pasta (intentionally) two nights in a row and I'm really suffering for it in a big way. It really makes the waiting so difficult, but again, just reading other peoples stories, gives me comfort that it will soon be over. The minute I'm done testing I'm gluten-free and I can't wait to feel better. We eat fairly gluten light, just naturally, so I'm trying to really step it up a bit before the biopsy. Did you ever get your results yet? I lost track! Thanks for the note... that was nice of you to take the time to write.

Yeah, he is no longer my doc. He also said, "I guess I can refer you to a GI if you really want to," Uh no, at the time I was tired of doctors!!

It's been 2 and a half year and I am just assuming it was the DGP. It said something to the effect of "gliadin, deamidated". It was right at the beginning of it being offered. I wouldn't think the AGA would have ever said deamidated-- right?

Sorry for the delay in responding, Emsstacey. I haven't been on until now. I'm not sure if the DGP was widely available 2.5 years ago, but the name is deamidated gliadin peptides. I'm not sure what the AGA is. I hope you get it figured out.

So I had my HIDA scan this morning. I kind of thought this was just a test to rule out the gallbladder and was waiting to get the results back from my doctor tomorrow about the gene testing to see if I needed a repeat endoscopy. But after my Hida scan the radiologist (or whoever the guy was), told me that my gallbladder is functioning at 23% and it needs to be taken out. At one point he had mentioning that it wasn't emptying and going into the small intestine...but it eventually did. I guess I am wondering a couple of things. I had inflammation of my small intestine which is why they were looking at Celiac, but could it just be the gallbladder? Or could the gallbladder be set off by gluten? I am average weight, eat healthy already and am not a high fat food type person at all. I rarely eat anything fried or too fatty so this is all kind of strange. I asked the guy if my gallbladder functioning could ever get better if I changed my diet to something gluten free maybe (if I find I have those issues), and he said that it wouldn't make it get better and that my gallbladder will eventually get infected and my body will fight against it as it already knows it isn't working right. I would love for the pain to go away, and I would love the it to just be my gallbladder and nothing else...but wanted to know what you all thought and other experiences with the correlation between gluten and gallbladder issues. He said "well you could have a bunch of little things like gallbladder issues AND celiac" LOL, "little things" ????

Hi goodnews, I'm no expert on the gallbladder topic, since I've not dealt with it myself, but I have seen many many posts on here relating to gallbladder, so I have to think it seems VERY connected to celiac disease. I'm curious about it too, because my GGrandmother, GAunt, Grandmother, Mom, and niece have all had gallbladders removed, and I do believe I got the DQ2.5 marker from my mom. I'm suspicious that there may have been undiagnosed celiac in the family, and still think my niece may have it. Seems like so many things are caused by that nasty gluten, systemically. Did you find out anything more about your celiac disease tests? Or did you just have them done? Hope you get things straightened out soon and feel better.

I feel like the brick in my tummy is constant all the time, feel sick to my stomach constant all the time. But sometimes it is worse than others, and sometimes it feels like there are 2 bricks in there. And I do think it is worse after I eat. I am up for my HIDA scan in the morning, and then food allergy tests in the afternoon and then Thursday I get to get my gene results back. I do have moments when I think it must be celiac, or some gluten intolerance....but since I haven't tried gluten free yet I also wonder. I can't wait to try it...but need to wait just to see if I have to get another endoscopy. Ugh. I hope answers come soon for me, and you too. And I know everyone's experience is different, but for my endoscopy I remember nothing. Just them telling me I may feel a little sleepy soon and I was out. So it wasn't all that bad, went home and slept the rest of the day. Good luck!

That IS good news, goodnews! Great to hear you're getting so much done...and you'll have answers in no time. My Endo isn't until 2 more weeks, but I'm just trying to prepare myself so nothing is unknown. I'd rather know what they're going to do before I get there. I've done 3-4 days gluten free... just a couple of 'mini" tests here and there and I noticed a pretty significant difference, so I just can't wait to get the endo behind me, so I can go gluten free. I dream of the day when I feel great!

I hope you have good results with all your tests tomorrow and the next day. Thanks for sharing.. it seems to make it more tolerable and less scary when there are others going through it too, doesn't it? And so many words of wisdom... from people that have been where we are... that really helps me a lot. Let us know how your tests turn out. How come you might have to have a second endo? Good luck and hope the next few days are good ones for you.

hi mscurious...i don't understand what you mean. do you mean that he may mean that i do have a mild case of celiac which is labeled gluten intolerance?

That kind of is what it sounds like he might have meant, but I don't really know, because of how he worded things. Best things to do is to pin him down. Ask him if he thinks you may have a wheat allergy, and if so... test for it. OR, did he mean you might have gluten intolerance (which is not wheat allergy in the conventional sense). Make him tell you what he thinks, and keep asking him questions until you understand the answers. If he doesn't know the answers, ask him what he is going to do to find out the answers.

Hmmm.. I just read what he said again, and it DOES sound like he is suggesting you get tested for wheat allergy.

After I eat something, I always feel like I have a brick in my stomach... not rock, but a brick with sharp/rough edges. I don't know if that's something others experience...and I wonder if maybe there's something entirely different wrong with me, and not celiac disease. Although, then I think of all the other things and the doubt subsides a little.

But do any of you (or did you) have days when you felt so sick, there was no doubt in your mind ... that you must be celiac disease positive? Or days days when you felt almost half way normal, and started thinking maybe it was all in your head? I do... and then I will have another day, where I think ... OMG... if I could make this go away by never touching gluten again, I'd be so happy.

I'm having one of those days today... as I sit here wondering how a big rock hard red brick got into my tummy. Oh, speaking of weird things like that... I saw a video on Utube last night (when I was looking up endoscopy so I know what I'm in for) and they showed someone having one...and they found A TOOTHBRUSH in the stomach... THE WHOLE DARN THING!!!!!!! WHAT? WHo eats toothbrushes? Wouldn't you notice? LOL OMG!

Anyway, sorry for rambling... just having one of "those days".

Thanks. I'm actually glad they were so high. It makes me feel more confident about the diagnosis. I just hope that it doesn't mean my intestines have been incredibly damaged. But we'll find out soon. I'm excited to finally understand what's been going on.

That's great news JessicaNYC! I know there are people out there who have never dealt with all these crazy symptoms lots of us have had, and they would think it "odd" for someone to say ... hey you have a disease... great news! LOL BUT... you know what I mean. It's just a relief to know what it is, and that you can control it! That's a whole lot better than never knowing and still feeling yucky. Happy for ya.

I had a similar result. My dr. said my celiac panel was negative and I expressed that I was surprised. He then added, well... only one came back positive-- the DGP. Not very convincing, overall negative.

OMG! I hope you fired that one fast... good grief! The DGP is the one I can't seem to get them to run. I believe it would be helpful.

Cannot begin to tell you how much I can relate to your frustration and anger. I have had many years of this kind of "treatment" from doctors. I was left to dwindle down to nothing.

When I am fully healed, I will be sending them all a letter, telling them exactly what was REALLY wrong with me and how they missed the boat.

There's not much we can do about it. I know I need to get over my anger with them all. In time, I will.

In the meantime, you should vent away ...it's therapeutic!!

Awwww.. Irish, I get sad everytime I hear bits of your story. I'm so sorry you had to have so many bad experiences. At least this one seems to be more limited. I'm not letting it go on... just nipping it in the bud. It really helps to have so many nice people giving me moral support to do that, though. I don't know if I would have been knowledgable enough without the help of everybody on this site.

Great color analogy, Mushroom!

So sorry about your crappy doc. I've had crappy docs myself and am so glad I'm not dealing with them anymore. If you are my doc, you need to leave your ego at the door, or you'll be seeing my back as I walk out of it!

I AGREE! That's just what I did with "GI Jerk" ... walked out, came home and cancelled my biopsy with him. I had to wait about 6 weeks extra...but I'd rather have a good doctor than a fast jerk working on me.

That is plain lying, to tell you a test was negative when it was never even performed. That being said, there are many, many doctors out there who regard anything borderline as negative for some reason. If it is not a clear positive then for them it is negative. This is the reason we keep telling everyone to get a copy of your test results because you do need to know the whole story. If you are borderline now, how long will it take until you are no longer borderline? My hubs was told he was borderline Celiac too. He is too lazy, I guess, to get a copy of his records, because he has the same doc I have who will willingly give them to him. He found out he was actually celiac when he broke out in DH. No more borderline there.

It is upsetting, and I'm sorry it happened to you, but having worked for doctors and lawyers for years I am used to their ways. Anything that is not positive is negative And yet we gluten intolerants live in the gray, not the black or white because those colours don't exist for us.. But gray is a color they cannot seem to see.

Good luck with your new GI

You are so right, Mushroom! Thank you so much for your reply, the support is very much appreciated. Sometimes I feel like my family is just tired of hearing about it or thinking about it... I think they don't want to deal with what is probably coming down the pike for some of them as well, and it will impact their families too... so based on that... I'm not their favorite person to chat with right now. ;P My sister said to me this morning, "I don't want Celiac... don't give it to me!" ROTFL... sheesh... I said its genetic... blame mom and dad ... not me! HAHA.. good grief! At least we can laugh about it ... for the moment.

I better go pick up a copy of my test results for the Celiac panel I had done then. They said everything looked fine, but now I want to see for myself.

Did you just show up there and ask for the results, or do they need some time to get them ready for you?

I just went to member services and filled out a form and she clicked on her lil buttons on the PC and they printed. Yeah, you really should get them. I was shocked at the things that are listed that they don't bother to tell you!

Am so confused. I have been bugging my doctor via email (because I left my cell phone elsewhere) about various info I've learned about celiacs. This is the response I got:

"Your Celiac tests- tTg IgA and tTg IgG are both absent.

Your sources are correct in that what this suggests is you do not hve severe celiac disease.

Wheat allergy is a different thing.

If you want a good resorce to discuss this with ( and get blood tests for) I recommend Karen Chagnon-Registered Dietician and Nutritionist at 221-3332 in Yarmouth.

I don't know much about those saliva tests but sounds reasonable."

Do you guys have any thoughts??? I will try and call him tomorrow. And just want to state that the blood test was taken after 6 1/2 days being gluten free but then 3 1/2 days being back on gluten. I would think that mild might actually mean that I have it... but am not sure what he meant or if that's what he meant.

This was the response I just emailed:

"Do you mean my results came in?

You wrote that I "do not have severe celiac disease" does that mean I have a mild case? Are you stating that this signifies that I have a wheat allergy?

Would you be able to mail me my results?"

I'm totally guessing here, but it "almost" sounds like he is using the term "wheat allergy" incorrectly ...and probably means gluten intolerance (which is why he said you don't have a severe case of celiac disease.... but wheat allergy (gluten intolerance is probably what he meant) is a different thing.) BUT ... again I'm just guessing. He may have meant that you don't have celiac, and you "might" have a wheat allergy... but those are so very different, that it seems an odd thing to say. Lots of people are gluten intolerant, but don't have wheat allergy and vice versa. Let us know what you find out! Hang in there... and good luck. Hope you feel better soon.

I'm so disgusted and untrusting of doctors after just reading through my lab results that I picked up from the doctors office. They didn't send me the "FULL" story... just whether the tests were positive or negative.

They told me my EMA was negative.... negative?... NEGATIVE? How can it be negative ... if they NEVER PERFORMED IT?

That's not the worst of it! They told me my tTG IgA and IgG were negative. Turns out they were ... Borderline! Not negative.

I'm so glad I went to a different GI! At least I should find out the truth from him. But I'm so disgusted! If I end up with a positive celiac disease diagnosis... I'm going to send a letter to "GI Jerk" along with several links to recent research findings, and tell him he's a disgrace to his profession, and has done his patients an injustice. I'm going to tell him he should either learn what he needs to know, or hang up his stethoscope, and let his huge pool of IBS patients find another doctor who WILL test them for celiac. I wonder how he can look himself in the mirror in the morning... knowing he does a half@$$ed job every day. Its very sad...when I think of all the people who have trusted him.

Sorry... just needed to VENT ... makes me very upset.