MsCurious

Kudos to you for getting your son into a Celiac Clinic! That is probably the best thing you can do for him. As you can see from my signature, I am also DQ2 positive, and had negative tTG and EMA. I'm still in the throws of finding a doctor who KNOWS about celiac disease and NCGS, which is harder than it would seem. Once you have acheived that, your son will be well taken care of. At the very least, he probably has a form of gluten intolerance, which could very well end up being full blown celiac disease if untreated. I KNOW I have one or the other, just from mini-gluten-free trials and my symptoms, but getting a good doctor who is current on Celiac and recent findings and research is not easy.

I have been reading quite a bit, and there is evidence (yet no official scientific studies to confirm) that there are several kinds of gluten intolerance, one of which has a name, and specific tests to confirm it... that being Celiac Disease. There are many people who suffer just as greatly from other forms of gluten intolerance that the medical community is just recently beginning to understand and do research on.

I know I haven't given you any answers, I'm not a medical specialist, but honestly from reading some very good books on the topic, sadly I and many people here are as knowledgable or even more knowledgable about celiac disease and NCGS than many doctors, at this point. SO again, kudos to you for taking your son to people who know there stuff! He will be in good hands, and you will have all your questions answered by people who actually understand celiac disease and NCGS.

Oh, and as for being DQ2 positive, that DEFINITELY puts your son into the "pool of people likely to get or have celiac disease". DQ2 and DQ8 are the celiac genes, and while a third of the population may have these genetic markers, only some people will get celiac disease. I have read however, that some doctors (wise beyond current research) will tell their patients who have either of these two markers, and symptoms of celiac disease, they should go on a gluten free diet. (again because there is so much they don't know, and it IS toxic to us). And, never say never, .... there is a tiny population who don't have either of these markers that have confirmed celiac disease.

Just make sure you keep your son on a gluten FILLED diet until all of his testing is done. Good luck to you... hang in there and it will get better soon!

Hey NancyL, How did you do with your gluten party? I'm fairly miserable today... just as anticipated.

Thanks everybody, for all your suggestions and personal experiences! That really helps me out in finding a Vitamin Supplement to replace Centrum. Thanks again!

Hi,

Now I am a bit worried about what will happen if i am never officially tested.

I just want to ask if it was safe not to be tested and officially know if you are coeliac. I am new to all this and not sure what follow up I would receive if I tested positive.

i know regardless of any test results I would not go back to eating gluten as I feel so much better. I am just concerned that I might be risking my health if I am not officially diagnosed.

Hi confusedandworried, I'm a little bit "in your boat" and its been FRUSTRATING and at the same time a little frightening to navigate this maze of medical brick walls, and in my case "idiocy"...to find a doctor that even remotely knows that celiac and NCGS (non-celiac gluten sensitivity) DO affect people other than children with bloated stomaches and diarrhea.

That being said, I came upon celiac disease while looking up IBS (which I am 200% positive I don't have) and kept finding links to celiac. I got curious and started reading, called my doctor, gave him my symptoms and said I think I should be tested for Celiac. He thought I was crazy, but ordered ONE blood test ...which came back negative. I wasn't okay with that, especially after reading about and talking with all the great people here, who have been willing to share their stories. So I thought about it logically, and knew that if he wasn't willing to consider other testing I would push for one that would ease my mind and send me looking for other reasons for my health issues.

The test that would ease my mind, I decided, would be HLA genetic testing. When I talked to my doctor, I simply said, "You know if we do the gene test and it comes back negative, I can take myself out of the "possible celiac pool" and try to find another cause, BUT if it comes back positive... I want further testing. He agreed and we did the test (he ordered the lab work). After a MONTH of no results, and my doctor sending me off to "G I Joe" ... I had to ask that ("SOB" 'scuse my language but that's what this guy was) to show me my HLA test results on the screen in his office. It was POSITIVE! My doctor, being so unfamiliar with celiac, I guess ...didn't even want to tell me my genetic results. I had a VERY bad experience with this "G I Jerk" and ended up in tears in his office. He didn't listen to a word I said, and told me that I had IBS, because only skinny people have celiac disease! OMG! I'm not THAT overweight... but he went on to say its mostly kids that have it... (that's a myth) and only skinny people have it (also a myth).

Now that I had a positive HLA DQ2.5 gene, I knew the possibility was there...and I knew I wasn't crazy. I had also performed "mini tests" of gluten free for 3 to 5 days here and there, and felt a HUGE difference for the better. SO, I thought I'd just go gluten free myself and "screw the idiots"! Then I talked to my parents, and they talked to some of my aunts and uncles, who were waiting to hear the results. Now I felt an obligation to give them a solid answer, because others in the family apparently have been suffering with symptoms, but didn't know what it was.

Then I started reading, and one of the books I read, "Revised and Updated Celiac Disease A Hidden Epidemic", by Peter H.R.Green, MD and Rory Jones.... and that scared me! It scared me because my dad is in poor health and I saw LOTS of his sympoms...and I could help him greatly by finding out definitively if I have celiac disease. It was scary because I read about the possible complications of not being correctly diagnosed. So I have decided to do what he suggests in the book. Call a local Celiac association and get a referral... a name of a doctor that KNOWS celiac disease, and that can figure this out for me. Once I do that I will know with absolute assurance that I either have celiac disease or NCGS (non-celiac gluten sensitivity). As soon as I have a biopsy I will be gluten free either way. I would encourage you to READ, LEARN and make an educated decision about your testing path, before you go gluten free. As I see it, I have this one window of opportunity to get tested, after that....there's no turning back. Most people refuse to do a gluten challenge once they feel better gluten-free, and I think that would happen to me, so I have decided to find out first, because of the medical implications of having celiac disease and not being properly diagnosed.

Hope this helps you! Good luck and feel better! (sorry so long winded... it just happens.. lol )

Wow - in the month I have been gluten-free I have called and emailed almost daily to inquire about products

Me too love2travel.... better safe than sorry! Besides, the more calls we make, the more aware these companies are ...of our needs, and our numbers... so to that I say... INQUIRE ...INQUIRE... INQUIRE! There IS strength in numbers.

Its official.... Lifesavers Gummies Bunnies and Eggs out for Easter are Gluten FREE!

Yummy little delights ...not too sweet ...not too tangy... Just right! And ... Ohhhhh soooo CUTE!

Fun for "Gluten Free-ks" of all ages! ENJOY!

I had my endoscopy today after undergoing a 3 month gluten challenge. My celiac panel was negative but doctor still wanted to do endoscopy to confirm negative blood work. He said that there was gastritis and apparently I have a hernia somewhere causing indigestion (I found that interesting since I don't experience indigestion when gluten free). He said that he didn't see anything that made him suspect celiac but that I would need to wait on the biopsy which should be back in 7 days. I guess my only question would be about the gastritis. Is it common to see gastritis but have a negative biopsy? Would gastritis maybe point more towards non celiac gluten intolerance? Of course he prescribed prevacid which I have no intentions of taking, I'm gluten free again starting right now

Congrats on having the biopsy hurdle behind you! And good luck with the results. Happy for you that you can go gluten-free again starting now!

Well...I'm back from my EGD. The paper they gave me at the end says that my intestinal mucosa look normal. Does that mean that the biopsy will likely be negative as well? Have any of you had positive biopsies after "looking" fine through the scope?

Thanks.

Mary

Hi Mary,

Wish I could give you an answer, but I have more questions than answers, at this point. How was the endo? Does it take long, does it hurt, or is it uncomfortable? Any after effects? Did they tell you how long until you will get the official report from the lab? I'm also curious to see what other people have experienced, so hopefully you'll get some good responses here. People are so wonderful about sharing their experiences. Hope you feel better real soon!

Well, NancyL... I joined you in glutening myself tonight.... with PIZZA! It was soooo good going down, after 3 days of totally gluten-free. After talking with my regular doctor yet again, I may do the biopsy, and didn't want to get too far into the gluten-free thing. I read your post and laughed! What are the odds we'd do that on the same night. Its been about 4 hours and tummy hurts, heartburn started, and I now have a headache which I didn't have for 3 days.... that a rare thing for me... not to have a headache. Every little "mini test" is like this. I'm totally convinced its either celiac disease or NCGS. So once the biopsy is done.... there's no looking back! I hope you enjoyed your gluten party tonight! You'll be paying the piper tomorrow... right along with me! LOL

Actually that's a typical CYA statement and true for many products we use all the time. So I'll continue to take my Centrum Silver. I know we take chances buying a lot of things and this is just one of them...we each have to make that decision every day.

Well, the bottom line is, her answer to the question "Is Centrum Gluten Free"... was NO! They have no clue anymore than we do, because they have no control of the ingredients before it reaches them and she said they have MANY sources for ingredients (not always the same one for the same ingredient) and there is no way to track that at this point.

The only way they can say it is gluten free, is if their ingredient providers all certify that they are gluten free, and at this point, they are not. So ultimately, the answer is no, Centrum is not gluten free. One batch may be gluten-free by the "luck of the draw", the next batch, not so much. I'll stick with the gluten free products. Centrum may eventually come around and see that they need to have some accountability for their customers. Until such time, they lost me.

Would you please provide a source for this. I see nothing in the ingredients of either regular Centrum or Centrum Silver that would indicate it contains gluten. Open Original Shared Link

Hi Sylvia,

Because I'm new to the world of gluten free, and trying not to make too many "mistakes" right out of the shute, I couldn't find anything on the bottle, so I called the customer help line... twice! LOL The first time the person, said I can't really say one way or the other, and that answer wasn't good enough for me. It sounded like she was a typical "I don't give a rip...don't bother me" kind of employee so I called again the next day and got someone different on the phone. She said, something like, "I'm sorry, but I can't tell you that it is gluten free" So I asked her specifically why... was it because it was processed in a plant that processed products containing wheat or...? And she replied, unfortunately no, its not that simple. We get ingredients from sources all over the globe, and we don't have control of how they are handled prior to reaching us, therefore we cannot guarantee or state that Centrum is gluten free. I asked if they would be doing that anytime soon and she said she was not aware of that being "in the works". I know.. it made me sad too, because I trusted them. They recently merged or were acquired by another company... (it slips my glutened mind at the moment) but perhaps they will tackle that issue. Sorry for the bad news.

And thanks Fire Fairy, Tigercat17 and shopgirl for the addtional info! Very helpful!

So two responses to you tonight.

I use NatureMade multi vitamins. They had good ratings on Consumer Reports and say gluten-free right on the label.

I would also advise you to take a sublingual (under the tongue disolving) B-12 or B-multi: I use Trader Joes or Twin-labs. I also take a Calcium/Magnesium/Vit D supplement, but if you're already taking D just take magnesium. It really helps my energy, as does the B-12. B-vit also help with sleep and anxiety.

You are a GEM! Thanks cyberprof!

MsCurious, I don't know what blood tests were done. When the doc called and told me about the positive celiac biopsy, everything just fell into place. I went gluten-free for one day (as best I could) and felt so amazing that I didn't care what the blood test would say. Plus I'd already talked to people here who told me that a positive biopsy overruled a negative blood test. The day after I went gluten-free I served a frozen Beef Bourguignon dish that I had made previously and it had like 2 tablespoons of flour in eight whole servings. Sick as a dog. So technically I was still eating gluten when I had the test but was gluten-free for one day before that.

However, that being said, I wonder if you're on to something with the negative blood tests. My son also has the same 2.5 gene and his blood test was negative. But I'll never know what his biopsy would say because he didn't have one. Endoscopies for kids have more risk than that for adults, so my husband nixed it. Who knows, maybe someday he'll do a gluten challenge. Or maybe he'll be a biochemist and develop a better, quicker, cheaper, faster and not requiring gluten!!

Now you've got me curious to see what my blood tests results showed. Maybe I'll ask. Sorry I can't be of more help. Oh and Patty in Jersey is also 2.5.

Thanks for answering so quickly. I am really curious... just read a study where something like 177 people ALL diagnosed with postive celiac were given blood tests (EMA) of those 177 ... 22 had NEGATIVE results. They were ALL "older" and all had significantly more advanced celiac and more digestive symptoms than the others that tested positive. I just had a negative EMA.. thinking I should get the biopsy before I go gluten-free. I should really copy and paste the correct figures... but it was very close to that. I'll try to find it and edit this post. Thanks again for your reply!

Okay ...here's the direct quote from the study: "Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other complications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts."

Interesting, huh?

Thanks for posting this question Bis-quit, this gives me reassurance that I'm doing the right thing by having a endoscopy despite my negative blood work.

When is your biopsy scheduled? How long till your challenge is done? Good luck to you!

I did. I had the endoscopy with biopsy first (doc thought I had an ulcer) and it showed stage Marsh I, meaning early celiac disease. I had the blood test to follow-up.

I am so thankful that the biopsy was taken and that they looked for thngs other than an ulcer. With the amount of bad things I had going on, I'd hate to have waited to see what the damage was if I'd waited until the blood test was positive and/or biopsy at Marsh II or III.

Hey cyberprof, if you see this... may I ask you a few questions? Which blood tests did they do on you that were negative? I'm so curious, how long you think you might have had symptoms before you were diagnosed. Like you I have DQ2.5 marker and negative blood tests. Doctor suggested doing biopsy AFTER I try gluten-free for 6-8 weeks! OMG... I told him I want to see a different GI "Joe" Anyway, interesting that you have same marker, and neg blood tests like me. Curious about your story. Glad things got resolved for you... I would count you a lucky one.

WOW... okay I just read the last few posts here..and MANY of you had negative bloodwork and positive biopsy! Hmmm... that makes me wonder if I should just bite the bullet and get the biopsy before I completely go gluten-free. Every time I do that (mostly unintentionally) for a few days I feel about 99.9% better.

I, probably like most of you, feel a huge difference when I don't take a daily multivitamin. I feel draggy, run down, no energy, etc. Its REALLY apparent if I forget to take it (which probably is because all my levels are low, but Dr didn't feel the need to run those tests other than Vitamin D)... Anyway, long story short... Centrum is a no go for gluten-free. So, I'm trying to find an equivalent supplement in gluten-free form. Anyone have suggestions for me? THANKS so much in advance!

Great BIG "Group Hug" to all you wonderful Gluten Free-ks !!!

Just when you THINK the roller coaster is slowing down so you can jump off... WHAM !!! Here comes another BIG OLE DROP! ... Then come the screams! LOL And you've heard me scream enough! But, I can't tell you how... well I guess you already know just from feeling the support yourselves, ... but I really can't tell you how much your patience, understanding, support, willingness to listen to the same story for the millionth time... means to me ...AND my sanity!

I guess when the conversations with my doctor slow down it won't be such a wild ride, but for now .. YIKES! You've been my moral support, my sounding board, my touchstone for sanity (scary huh? LOL) and all that stuff. My husband is the sweetest man on earth, but he thinks this has taken over my life. Remember...he's the one with the "iron gut" so he has no concept of what its like to feel like "cr@P" all the time... and its just very very nice to have somewhere to come and share ..and read other stories that make me feel ... not so alone... and not crazy.

That's all I wanted to say.... just a big huge ... THANK YOU to all of ya! I know its far from over, but you're all making it a lot easier to get through the maze. Had a bit of a self doubt type day today.... but hangin in there.

I just sent a note back to my doctor.... and I was wayyyyy too honest about my feelings!

OMG!!!!!!!!!!!!!!! Venting already! ... pfffffft! You all read the note I sent the doctor (above)... and well, I got his reply... *BIG OLE HEAVY...TIRED OF TRYING TO EDUCATE THE DOCTORS... SIGH*

This is what he said:

"I would try gluten-free diet for 6-8 weeks. Then consider biopsy, which is definite diagnosis tool for this problem." <---- MY DOCTOR SAID THIS!!!!!!

This is my regular doctor... VERY NICE guy... but totally CLUELESS about celiac disease! He obviously doesn't even realize there would be a 3 month gluten challenge involved with much sickness. I think I'll stick with the woman doctor's advice that I posted yesterday. She said because there's so little known... when she has a DQ2 or DQ8 positive patient exhibiting significant symptoms and they test serum negative... she tells them to go gluten-free anyway.

I could opt to still do the biopsy (now)...and the guilt part of me feels some sort of obligation to my family to find out definitively... so they will get tested if biopsy is positive. Even my aunts and uncles are waiting to hear the results, because some of them and their kids have "issues" that are like mine. But the rational part of me says... the doctors are not too up on things in the USA ... and I'm fighting a losing battle trying to educate them. What do I do?

I read a brief intro to a world wide conference for celiac researchers from all parts of the globe, and the speaker said: (paraphrased) Celiac is like a huge iceberg... Sweden has the iceberg exposed above the water line, most of Europe has the tip of the iceberg showing .... and in the USA the iceberg is still completely submerged. Doesn't say much for our medical professionals... does it?

Thanks for your kind words of support... I"m still really torn... but had gluten free dinner tonight. Sorry for being so emotional.. I just don't know what to do.

I'm tired... I'm worn down.... I give up... not on me... on doctors... and here's why:

Most of you know my story, so I won't go down that road, but after random blood tests (dr wouldn't do full celiac panel) and having some negative and some positive... the most recent EMA negative, I have given up getting them to listen to me. Doctor did suggest I might consider biopsy, "if I wasn't convinced of the negative diagnosis"... so after discussing this with my husband, this is the note I sent to Dr:

"Thanks for trying to help with this issue. I know my body, and my symptoms, and the years and years of dealing with this, and the fact that I have the DQ2.5 marker which is the strongest risk factor for celiac disease other than a first degree relative being diagnosed. I also know researchers admittedly know next to nothing about gluten sensitivity, and celiac disease. For instance Dr. Katri Kaukinen and colleagues at the University of Tampere looked at 177 celiac disease patients and found that 22 were serum EmA-negative. A common theme among the 22 serum EmA-negative patients was that they were older and had more abdominal symptoms and other complications that indicated a more advanced stage of celiac disease than their serum EmA-positive counterparts. Interesting, huh? I don't know what the value of a biopsy would be, so I guess based on minimal "testing" on my part with the gluten-free diet, I'll do that and it will be the true test. I believe it will resolve my issues. Your thoughts?"

I have not heard back from him, and the "gist of the note" will probably go right over his head, but so be it. Husband and I tossed it around ... pros and cons of doing the biopsy, and decided against it (treatment is the same either way, invasive procedure has unnecessary risks, would cause pre-existing condition for future insurance, etc). Either way, I need to go gluten free and as one of you always says... "give it a good strict try" ...and that will be the true diagnosis. I know what my body is going through and its NOT normal! As I said before, just one example is the 5 days my husband just had off of work. We were together the entire time, ate the same foods and he was fine, I was sicker than a dog at various times because of what we ate. Doesn't take a rocket scientist to know if it makes you sick you shouldn't eat it. So, NancyL... you may have a week or so on me... but move over... I'm hopping on the bus!

I'm sure I'm going to need a lot of guidance and support from all you wonderful people...and thanks in advance for that. You've been amazing ... going through this with me even this far. So I guess I'll go pick up a book or two, clean out the cupboards and fridge... and start the new stage of my toxic free life!

Again, thanks to Mushroom, Ravenwoodglass, cassP, IrishHeart, Marlie, and everyone else who's name slips my mind at the moment... you know who you are!

Guess this is it, I can officially move from the pre-diagnosis forum! LOL I'm a little frightened... but I keep thinking how great I'll feel and that's exciting!

My girls seem to do ok with a little cheese or yogurt but they can't handle milk or ice cream at all! It may just be that your body can handle a little but not too much, maybe the ice cream and milk in one week was just too much.

I absolutely cannot tolerate any "cows" milk period. Ice cream, is an odd thing though. I'd say 99.9% of the time it hits me hard just like milk would, but once in a blue moon over the course of probably the last 6 years, I've decided to indulge (when I know I'm going to suffer but I'll be home alone!) LOL ) ... and low and behold.... nada!!!! I think I ate Stonecold ice cream once...and it was fine... that other brand I'm not sure of... but its very odd! I don't go down that road hardly EVER...because it makes me miserable! (except for those rare two or three times). I can have yoplait yogurt (with lactaid.. just in case) and I can have parmesan cheese, but that's about it for dairy.

Hey Ms.Curious! I've been MIA because my 3 yo had pneumonia (AGAIN! 2 times since Jan 30th!) and my oldest son got suspended from school AND my mom has a possible breast cancer recurrence scare so I've been going to her dr.s appts. It's been VERY challenging over here. But yes, I've stayed gluten free and don't really miss it! I hope you're seeing some good results now? I'll try to find some of your posts so I can catch back up.

OMG... they never told us at birth being female meant becoming grand-master juggler, did they? You poor dear! Just having a child with pneumonia is bad in itself, but you've really got a plateful! I'm sorry... let me know what I can do to help....which isn't much from here, but I'm a good listener if you need an ear. Just shoot me a msg. Hang in there!

I still haven't gotten to the gluten free diet yet!!! I postponed my biopsy with "G I Jerk" as my husband calls him. Because my regular Dr sent me off to the allergist first... which confirmed that I'm not allergic to much other than mildly to shrimp and oak trees, and strongly allergic to birch trees.. but like I said before... not planning on eating a tree anytime soon.

I'm actually sitting on pins and needles ... expecting a call from my DR any minute now (its 5:15 pm here) regarding the results of my EMA. Something else occurred to me last night though... when I was thinking through the years, and my medical history...which has been relatively complaint free (except for the chronic digestive stuff that I thought was hereditary...and fatigue and headaches..and lol all the stuff I put up with cuz I'm not a whiner). Anyway, I'll investigate that tomorrow, but in the mean time... hoping to find out what the next step is today.

Keep smiling... even though at times its hard... it does help. Wishing the best for your mom and kiddlings..and YOU!

Update: 10:15PM Doctor never called And the wait continues...

Sounds like it could be atrial fibrillation. It's generally not life threatening, unless you've had it consistently for over 48 hours, and then it can cause pooling of blood where it should be pumping out and puts you at risk for blood clot. You should call your doctor and discuss what's going on. Dr may want to check it out, just to be sure its nothing serious. Fluttering of the heart happens now and then to most people at one time or another, but atrial fibrillation is when your heart "goes out of rhythm" and has a hard time going back into rhythm. You can sort of hold your breath/pushing like you're straining when constipated (lol .. I know that sounds weird), or bending over, or sticking your face in a bowl of ice water. These are things a doctor might suggest to "shock" your system enough to get the heart to transition back. I'm not a doctor... just what they've had my son do, when he has this happen, which unfortunately is far too often for my liking. (he's got an electrical problem with his heart that is not common)

I should add that my son has medication to take when A-Fib happens to him, and he has been instructed to get to the ER or see his doctor before 48 hours so they can zap him (with those shock paddle things) to restart his heart to get it beating normally. So, ultimately ... if you don't know what's going on... go see your doctor and let them instruct you on your specific situation.

OH, I'm DEFINETLY staying gluten-free! First time of no Big D in 2 years! That reason enough not to eat gluten ever, ever again!

Hey NancyL! Glad to see you're still here... I sort of lost track of you for a while and was wondering how you're doing with going gluten-free. We both posted for the first time on the same day, I think... so I sort of feel like your battle is my battle. So happy to hear you're feeling better with gluten-free! That gives me hope for the future. You asked if you should tell your OBGYN that gluten-free helped one or both ... and to that I would say, tell her that you "thought" it was helping both until your recent pain, but that you're definitely sure it DOES help with the "D", so now you're not sure. That might help her figure things out to... just be as honest and detailed as you can with her. Hope she can put an end to the pain for you. Good luck and keep us posted on your progress! It's really good to see progress by people on here.. gives the rest of us hope!

I did. I had the endoscopy with biopsy first (doc thought I had an ulcer) and it showed stage Marsh I, meaning early celiac disease. I had the blood test to follow-up.

I am so thankful that the biopsy was taken and that they looked for thngs other than an ulcer. With the amount of bad things I had going on, I'd hate to have waited to see what the damage was if I'd waited until the blood test was positive and/or biopsy at Marsh II or III.

Lucky you, cyberprof! Sounds like you have a great doctor. I have DQ2.5 also, and am very curious about your story. How did it unfold, symptoms, timeframe etc... Share if you'd like. Really happy for you that you got such an easy diagnosis.