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Need Advice Please :)

JessicaB

By JessicaB
in Coping with Celiac Disease

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JessicaB Explorer
JessicaB
Posted

ok. I would like to know everyones point of view on my stance. I had the blood test for celiac done on 11/15/2005. Here were the levels, IGA 1 (should be 0-4) igg 74 (should be 0-9)ttg iga 0, ttg igg 2 (should be 0-5), endomysial antibody iga 68l (should be 70-400). The doctor said usually two of the first numbers should be high for celiac but since my antibodies were low, thats why only one was high, DOES THAT MAKE SENCE???

Well.....He said the 74 is very high, most likely is has to be celiac. I recieved my biopsy results today THEY ARE NEGATIVE......!! Why???? If im in so much pain when i eat gluten why is there no damage? This has been going on since i had my daughter in july 2004??

Im going to see a specialist at the University of Maryland, Center for Celiac Research, anyone heard of that??

DOES ANYONE KNOW ABOUT THESE LEVELS???? PLEASE LET ME KNOW ASAP I WOULD LIKE TO KNOW YOUR POINT OF VIEWS. DO I HAVE CELIAC?? WHY IS THE BIOPSY NEGATIVE, I KNOW THE SPECIALIST WILL TELL ME BUT I NEED YOUR POINT OF VIEW, OF COARSE, EVERYONE HERE HAS THE EXPERIENCE AND KNOWLEDGE, THANKS A BUNCH!

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jknnej Collaborator
jknnej
Posted

Hi Jessica,

I can't tell you too much about the tests, but I can tell you that my situation was almost exactly like your own. I only had one high test and the others were normal plus a negative biospy. But, some of the people on the board have said to me that if any of my blood levels were high, I at the very least have gluten intolerance. According to what you said, I doubt a specialist will make very much difference. I have seen one and I didin't get a sure answer.

According to my doctor, I do not have Celiac disease because of the biopsy. He says I have a 50% chance according to the blood work and that I don't have to be gluten free because that is not enough evidence. That is because only one of my tests was high and the biopsy was negative. If you have the same situation you will probably hear the same thing. He is a specialist and knows a lot about celiac disease. He did give me the following advice though:

since I was always sick before going gluten-free it can't hurt to try the gluten-free diet. I am better now after going gluten-free. I have been gluten-free for a year now. I personally know that regardless of whether I have celiac disease or not I need to be gluten free because I am not sick anymore. After all this, he agrees with me and thinks I probably have at the very least gluten intolerance and possibly celiac disease even though there wasn't any damage. He is VERY schooled in celiac disease and as soon as my biopsy was done he was telling me that there are even histiological signs that he can see with the naked eye in most of his Celiac patients that were not present in me, nor were the lab results positive.

Your situation may be a lot different. I can tell you, though, that a biopsy is considered the "gold standard" test for celiac disease and if that came back negative they probably will not diagnose you with celiac disease. You can, though, try going gluten-free to see if you feel better on the diet. If you do, great! If not, maybe there is something else going on in your body.

I haven't had stomach issues in a year (except that i am lactose intolerant and from time to time I divulge in ice cream! ) I get a tummy ache then but it's my own fault and not gluten related!!

So, I would say since you already had the biopsy, try going gluten-free and see if your symptoms get better. It does take time for some, though, and for others they feel better right away.

Good luck!!!!!

JessicaB Explorer
JessicaB
Posted
  • Author

cool, so you saw him also. Yeah ever since i gave birth to my daughter i have had really bad abdominal pain. I went to like 6 different doctors, i have been xrayed, and tested for just about everything, i just want answers ya know. I mean i cant complain that much because the only symptoms i have is pain, depression, mood swings, and bloating. But the bloodtest came out high so i dont know. Thank you for replying to my post. It really helps to know what others have gone through and their similar experiences. Thanks again, and i hope we can keep in touch!

jknnej Collaborator
jknnej
Posted

No problem...there are so many other posters here who are more knowledgeable about the science than I am; however, I think a gluten-free diet can't hurt you since you've already had a biopsy. Normally the only reason NOT to try gluten-free is if you have an upcoming biopsy; then being gluten-free can give you a false negative. But if you were consuming gluten when you had your test than you are safe.

I would try the diet and see if it helps your abdominal pain. The symptoms certainly sound familiar and if you've already been tested for many other things it sounds like it can't hurt to try!

Keep in touch..we're always here!!!! for those of us who are gluten-free this board is like our lifeline!

gabby Enthusiast
gabby
Posted

The Maryland Celiac center is a top knotch facility....I've been thinking of going there myself. They are not just treating people, but they also do leading edge research. If you can remember...please post here about your experience with them, because I'd love to know if they are more helpful for you (note: I live in Canada, and want to know if it is worth the time and money to make a trip down!)

As for having a negative biopsy....here's what I know. Medicine is not an exact science, there is actually quite a bit of art to it. You can only get so much info from tests, and the rest has to come from putting all the pieces of the puzzle together. You wouldn't believe how many people are sitting in wheelchairs with multiple sclerosis, but all the MS tests come back negative (15% of them actually). Have you heard of women who are 7 months pregnant getting blood tests that say they are not pregnant? etc. The point is that there are always exceptions to the rule...and you could be one of them. A biopsy is a funny thing, because the doctors don't test your entire intestines. They take little pieces from a few parts...but they might miss the damaged sections.

The other possibility is that your intestines are not yet damaged permanently...maybe they are in the process of getting damaged, but your body is strong enough to heal itself for now. I'd wait until the Maryland visit before going too crazy. Tell them your fears, ask them for their recommendations.

All the best to you. I really feel for you, and want you to know that what is happening to you is not as unusual as the medical community wants you to think.

JessicaB Explorer
JessicaB
Posted
  • Author

I had a excellent experience at the University of Maryland today. I would highly reccomment Dr. Fesano, i think i spelled that wrong, sorry. Anyhow, since my bloodwork was high and biopsy negative i brought a copy of all my recent exams and tests with me, it was a full panel. The doctor asked me many questions and did a short exam. After about an hour or so we talked about what needs to be done. He needs to see the biopsy slide himself to determine if any damage has been done. He said sometimes a specialist should look at it because signs of damage can be easily overlooked normally. So basically i have celiac or a wheat intolerance. He discussed both situations to me and i understand more now than i did reading any website or any books i have looked at. He has a nutritionist that works with him, she talked to me, gave me samples of some gluten-free foods, and a free gluten-free cook book. It was great. Lets just hope that i just have wheat tolerance. Ill prob find out the end of next week. He told me that i should stay on the diet no matter which one it is of coarse, since i already feel better, since being gluten-free since thursday the 22nd. Has anyone had a similar experience? Well we will see. Oh, i got a sample of ANNIES gluten-free MAC N CHEESE, ITS REALLY GOOD, ESPECIALLY COMPARED TO ALL THE OTHER PASTAS IVE TRIED!!! Thanks for the replies. Email me anytime! mckaylaslove@aol.com

jknnej Collaborator
jknnej
Posted

I'm so happy you got some answers:) Pretty much what I thought; if you have positive blood work you at least have an intolerance.

Annie's mac n cheese is the BEST.

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JessicaB Explorer
JessicaB
Posted
  • Author

YESSS! THE MAC N CHEESE IS THE BEST gluten-free PRODUCT IVE TRIED SO FAR. I ALSO LIKE THE AMYS RICE CRUST CHEESE PIZZA. I PUT SOME EXTRA PIZZA CHEESE AND PEPPERONIS ON IT, AND IT WAS REAL GOOD. WHATS SOME OF YOUR OTHER FAVORITES??

YEAH SO EITHER WAY IF I JUST HAVE AN INTOLERANCE I WILL STAY gluten-free, I JUST AM ANXIOUS TO FIND OUT. HA I JUST ORDERED A CASE OF THE MAC N CHEESE :)

Lovinglife Rookie
Lovinglife
Posted

Dear Jessica,

I'm happy to hear that you've managed to get some answers. YES, be gluten-free/wheat-free as necessary. Take care of yourself.

Love,

Florence

  • 2 weeks later...
Jake Newbie
Jake
Posted
I had a excellent experience at the University of Maryland today. I would highly reccomment Dr. Fesano, i think i spelled that wrong, sorry. Anyhow, since my bloodwork was high and biopsy negative i brought a copy of all my recent exams and tests with me, it was a full panel. The doctor asked me many questions and did a short exam. After about an hour or so we talked about what needs to be done. He needs to see the biopsy slide himself to determine if any damage has been done. He said sometimes a specialist should look at it because signs of damage can be easily overlooked normally. So basically i have celiac or a wheat intolerance. He discussed both situations to me and i understand more now than i did reading any website or any books i have looked at. He has a nutritionist that works with him, she talked to me, gave me samples of some gluten-free foods, and a free gluten-free cook book. It was great. Lets just hope that i just have wheat tolerance. Ill prob find out the end of next week. He told me that i should stay on the diet no matter which one it is of coarse, since i already feel better, since being gluten-free since thursday the 22nd. Has anyone had a similar experience? Well we will see. Oh, i got a sample of ANNIES gluten-free MAC N CHEESE, ITS REALLY GOOD, ESPECIALLY COMPARED TO ALL THE OTHER PASTAS IVE TRIED!!! Thanks for the replies. Email me anytime! mckaylaslove@aol.com
floriter Newbie
floriter
Posted

:unsure: hi my name is teri

I'm new to this just register today i'm in the process of being dx or should i say dx with celiac I went for endoscopy to r/o gastitis my gi dr had told be she did some biopseys but didn't think any thing of it 3 weeks later rec'd lab slip in mail for iga , gliadin igg/iga,transglut iga, and reticulin iga I am am a nurse and wa curious about the test so i looked them up on the internet and saw they were all for celiac which I next looked up celiac disease I never thought my test would come back pos I still have not had my follow up with my gi its scheduled for next week I have alot of questions I called the office when I saw 3 of my test come back pos the nurse sent me copy of the celiac food list let me tell you this is all quit over whelming since i always considered myself a carbalcoholic I, trying the diet now its only been a week and I think I'm getting some contaminents ?? I'm not sure how serious I need to take this puzzled i

I've found this web site to be helpful but still have alot of ?

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