Bowilove

You know, I didn't do anything different with the way I cooked my food. I wasn't told to, and really didn't realize it could be that sensitive. Is it that way for everyone? I can't imagine being able to follow a completely gluten free diet if it's that easy to consume gluten. Never getting to eat out, having to watch the makeup I wear even. That's insane. But good to know. I wonder if a tad of gluten such as what you would come across by using the same cutting board would cause that much problems? (compared to eating a regular gluten filled diet). I did post copies of the blood work that I had done just before I replied to you here. Hoping it will lead to some more answers. I'm so thankful people are willing to help me with my troubles here! I've felt so alone with this and in the dark about a lot of things. Even my own husband wants me to just forget about this since my stomach pain has went away and not returned. I just can't do that without getting a for sure answer of whether I have celiac or not. because I sure don't want to be celiac, and go on eating gluten for years and cause myself to get other horrible diseases. I want to take care of myself and I will do what's necessary. problem Is I need to find out the truth about what's going on with me first!

Ok I will continue with the gluten foods, and should have a dr appt by next week sometime. I have fixed my photobucket photos, please check them out again if you would for any possible other valuable info, maybe about the vitamin levels etc. THANK YOU! http://img.photobucket.com/albums/1003/prettybow/P1160637.jpg http://img.photobucket.com/albums/1003/prettybow/P1160636.jpg http://img.photobucket.com/albums/1003/prettybow/P1160635.jpg

Thank you so much for your input. I will definately have a new dr do a new celiac panel on me and bring that list someone suggested, of all the actual things I need tested in case once again, I get a dr who isnt through. In the mean time, I do need to be consuming a diet containg gluten in order to get accurate results, correct? I also was curious as to whether I am vitamin deficient in anything..which I guess by these tests, wasnt determined either? I wish I didnt have to rely on myself to be sure I am taken care of fully with all the testing and info I need. I thought thats what drs are for.

Wow. I am still in the process of figuring out whether I have celiac, but I totally relate to the memory loss or brain fog. I am only 27, but recently my memory has been so bad that I was starting to think I may be getting alzhiemers. I make lists for each day, can't remember things even when it's important info that at the time I KNOW I will need to remember it later. I didnt know bad memory was part of celiac. Now I have one more of the symptoms to add to the list.

Hi guys, I have copies of what my dr tested me for and was hoping it would help those that I have been chatting with, see exactly what my blood was tested for and let me know more as to what they think about my diagnosis and possible celiac. Here are the copies, hopefully I post the correct code for the images to show up: http://img.photobucket.com/albums/1003/prettybow/P1160629.jpg http://img.photobucket.com/albums/1003/prettybow/P1160631.jpg http://img.photobucket.com/albums/1003/prettybow/P1160632.jpg

Ahhh, too bad this has so much guess work. I want to bring the list of what to check my blood for to my next dr appt this week, but I am afraid of the cost of more medical bills :/ Especially if I don't get a for sure answer once again. I know that when i did the gluten free diet, I was living off of food that i bought that was the gluten free brands, and other than that i was only eating meat i cooked, veggies and a lot of quesadillas made by me with corn tortillas. I am stuck right now. My husband feels we have done enough testing and thinks I am becoming a hypochondriac So it's really hard being the only one concerned. Yet I don't wanna run around with celiac disease, loading up on the gluten for years and then come to find out years down the road that i did. But i cant make us go broke with medical bills. Time to PRAY harder for some direction. Thanks again guys for all the help.

Thanks skylark for all of your advice. I feel like ive been helped more here already than i have by my dr. Whats your theory on why my TTG was still elevated once I finished those 3 months of a gluten free diet that the dr ordered I mentioned in my first post? the dr told me if I had celiac, my TTG level would most likely have dropped quite a bit after having eliminated all gluten from my diet for so long. yet it didn't change.

Lilu- that's very smart! good idea! I will definately do that Thank you!

Wow, the EMA test *sounds* like it would cost us an arm and a leg! So the ttg is what was elevated in me then right? And you are saying that it commonly comes up high for other diseases such as arthritis ibd and diabetes? Just making sure I understand correctly! You seem to know your stuff, and I am so new and get mixed up easily but i want to get all the facts straight =) So because mine was high are you saying these are reasons it could have been elevated other than celiac? I believe thats what the dr looked for in the colonoscopy...she said I had no signs of crohns, colitis, or anything whatsoever and she took several biopsies during both colonoscopy and endoscopy. I understand inflammatory bowel diseases such as ibs, are not something that a test can prove you have, but after doing all other tests and narrowing down that it's nothing else, then you are left with ibs? Thanks for all of your help!

As for the false positives I just found this on webmd, the bold is what stood out to me: Endomysial antibodies and anti-tissue transglutaminase antibodies are highly reliable in diagnosing celiac disease. An individual with abnormally elevated endomysial and anti-tissue transglutaminase antibodies has a greater than 95% chance of having celiac disease. Anti-gliadin antibodies are less reliable and have a high false positive rate. Thus a person with an abnormally elevated anti-gliadin antibody level does not necessarily have celiac disease. Nevertheless, anti-gliadin antibody levels are useful in monitoring the response to treatment because anti-gliadin antibody levels usually begin to fall within several months of successful treatment of celiac disease with a gluten free diet.

Do you happen to know why the EMA is a harder test to process? My GP has a lab right there in the same buliding. It's PAL (Physician's Automated Lab)..not sure if these are just in my town, or elsewhere too. I have a checkup on the 16th for something else, so I plan to bring this list of tests to show my dr, and ask them then and there if they could run these tests for me. Hopefully the answer will be yes and we can get the ball rolling. Does how much intestinal damage have anything to do with your chances of how badly celiac is effecting your system as a whole? Because I am already a worry wart. And I keep thinking "what if" i have this or that already due to possibly having untreated celiac for who know's how long. I was hoping that if I did have celiac, that since I had no visible damage, that maybe it was early stages so to speak, and that I'd be lucky. Any thoughts? Thanks again everyone! =)

Yeah I am unsure if the test included all of those different things to test for, but I just remember her saying the one thing. And also, I remember her telling me sometimes there are false positives and that maybe that was the case for me. Sounds like from what you guys are saying, maybe my dr didn't do all that she could do for me. I wonder if i could just go in to my regular dr, and ask them to do the full celiac panel on me. Or if I need to see my gastro dr? I'd actually rather see my normal dr. Seems to be more caring. Thanks guys! I definately don't want to let this go.

Thanks for your replies guys. I guess i was confused about the colonoscopy..it's been awhile. The colonoscopy was done after finding nothing wrong with the biopsies of my small intestine when they did the endoscopy. They thought maybe there was something going on with me such as colitis or something of that sort, but nothing was wrong. I am sorry I am a little vague, It's hard to remember the details, but the bloodwork was to test my tissue transglutaminase (I looked it up and thats what i remember her saying she was testing). So that is what came back high. But according to this dr, she said that it could be elevated for other reasons, which is why they also do a test by biopsying the intestine. And my intestine wasn't damaged, so after finding out that, she seemed to be at the end of the road with what she could do for me as far as a for sure diagnosis and just told me I could continue the celiac diet if it was helping me, or not if I was not in pain anymore. So I would definately like to be healthy and live a long life and wish I could know 100% whether I have celiac or not.

Hello, I am hoping someone here can help me out. I have been through so much and still have no answer regarding whether I have celiac or not. Back in 2008, I gave birth to my first daughter. About a month after, I started getting horrible stomach cramps after pretty much everything I ate it seemed. The only thing out of what my daily diet consisted of that didn't bother me, was rice krispies and milk, so I was living off of that and scared to even eat. I would also have to go to the bathroom, and sometimes after having a BM, I would feel a little relief for about 15 minutes, but then the pain came back and always lasted about 4 hours. Which was hard because by that time, I was hungry again, and would eat and the miserable cycle would start all over again. Back then, I had never heard of celiac disease. I went to the dr once I realized the pain was not going away, but actually getting worse, and they did an endoscopy, the upper gi, stool samples and ultrasound. All came back normal. The dr gave me a prescription of some sort of muscle relaxer to take when i got pain that disolved under my tongue, cant remember the name but I thought it helped. I took that for a couple weeks, and then, I started feeling better as if the problem just dissapeared! So I sorta just thought to myself, "oh well, at least they found nothing wrong, glad it's gone" and forgot about it. I never had another stomach pain episode or any of those symptoms again. UNTIL last year, once again, a month after having my second child. The same exact thing happened. I was in such horrible pain this time after eating, that I thought I was going to die. I had a spell where the pain was so intense that I had to go throw up. This time I seen a different dr, and they did all of the same tests again. My bloodwork came back highly elevated in whatever it is they test to determine celiacs, so the dr suggested that they do a colonoscopy so they could do biopsies to check for celiac damage. Well my biopsies were completely normal and they said I was 100% healthy as far as my colonoscopy results went. So I asked the dr.."How could my blood be so highly elevated, yet my biopsies be normal? WHY is my blood elevated then?" She said because I have a diet high in carbs normally, that it would be uncommon for me to have celiac without any damage to my intestines. She then said she wanted me to do a 100% gluten free diet for 3 months, then come back and have my blood tested again and see if the levels dropped, which if they did, would tell us that i was most likely celiac. So I was very sure that I ate only gluten free foods, and while I was on this diet, I had no pain at all. What is confusing is, rememember the first time back in 2008 when i had this same problem, I never changed my diet and my pain went away back then as well on it's own. So i don't know whether the diet helped or had nothing to do with my pain going away. So anyway, after my 3 months of gluten free living, I had my bloodwork done again to check if my levels were still high, and guee what, they didn't change at all. They were still highly elevated. At this point, I was concerned that for one, what IS causing my high levels of that certain thing in my blood, and two, I don't wanna continue in pain and no one be able to help!!!!!! The dr was very unhelpful and basically told me that even though they don't think I have celiac, that if the diet helps and keeps me out of pain, then to continue. And that they could find anything else wrong. I resumed my normal gluten filled diet, and had no pain at all. I was back to my normal self just like I was after the first time this weird experience happened to me. So that leaves me at today, I still eat what I want and I have no pain. The reason I came here to find advice and help, is because I read that some people have silent celiac and could go on eating normally and be unknowingly damaging their insides, and putting themselves at risk of cancers, auto-immunine disorders, and malnutrition! I don't wanna be harming myself. Yet I don't want to be on a gluten free diet for no reason. It's very hard to follow and I would only want to do that if It was necessary for my health. I was pretty ticked off that after all the testing and money it cost us (our insurance isn't too good and we had so many medical bills, right on top of the bills we already had from having a baby)that it got me nowhere. I mean I was glad that none of my tests came back with something horribly wrong with me, thank God, but I still don't know what was wrong, or may STILL be wrong. And thats where I am today. I can't afford more testing. I just feel so lost and wondering what could be wrong with me or if I should just not worry about it. Hope someone can help. THANKS in advance! =)