Not Understanding Lab Work

[mbg98]

After a nightmare of an appt witha nutritionalst I got to thinking about her saying that there are different degrees of having this disease, I wanted to know where I stood. I have always had MILD Gi issues nothing to the extent of whats discussed in here, I always chalked it up to poor diet or un diagnosed IBS. Anyway my Celiac was discovered by fluke, had and Endoscope to check for ulcer saw damage did biopsy came back that I could possibly have Celiac and to have bloodwork to confirm. I did that and was told there was no doubt i have Celiac and we went from there. I however went today to get copies of all my blood work and i am not understanding somethings or wondering if I truly do have it, so here it goes the test reads:

*ENDOMYSIAL AB (IGA)------------------------POSITIVE (Negative)

[a]

ENDOMYSIAL AB TITER --------------------------1:40

[a]

GLIADIN AB IGG-------------------------------------------5 U/ml (<11)

[a]

Referance range:

<11 U/ml negative

11-17 U/ml equivocal

>17 U/ml Positive

Gliadin AB Iga------------------8 U/ml (<11)

[a]

Then it gives the same referance guide as above.

The top one ENDOMYSIAL has a star that my doctor drew and then a note that says "needs dietary consult (gluten-free) "

I know the top one says POSOTIVE next to it but it then has negative in (), and then the 2 GLIADIN tests are in the negative range, what does that mean??

Please someone explain.

Thanks,

[mbg98]

After a nightmare of an appt witha nutritionalst I got to thinking about her saying that there are different degrees of having this disease, I wanted to know where I stood. I have always had MILD Gi issues nothing to the extent of whats discussed in here, I always chalked it up to poor diet or un diagnosed IBS. Anyway my Celiac was discovered by fluke, had and Endoscope to check for ulcer saw damage did biopsy came back that I could possibly have Celiac and to have bloodwork to confirm. I did that and was told there was no doubt i have Celiac and we went from there. I however went today to get copies of all my blood work and i am not understanding somethings or wondering if I truly do have it, so here it goes the test reads:

*ENDOMYSIAL AB (IGA)------------------------POSITIVE (Negative)

[a]

ENDOMYSIAL AB TITER --------------------------1:40

[a]

GLIADIN AB IGG-------------------------------------------5 U/ml (<11)

[a]

Referance range:

<11 U/ml negative

11-17 U/ml equivocal

>17 U/ml Positive

Gliadin AB Iga------------------8 U/ml (<11)

[a]

Then it gives the same referance guide as above.

The top one ENDOMYSIAL has a star that my doctor drew and then a note that says "needs dietary consult (gluten-free) "

I know the top one says POSOTIVE next to it but it then has negative in (), and then the 2 GLIADIN tests are in the negative range, what does that mean??

Please someone explain.

Thanks,

Can anyone help? Does anyone know what all this means?

[slpinsd]

I haven't seen any testings like yours, usually, I see antitTg antibodies done. I would ask your doc for clarification? Blood tests are not always accurate, and if you did have a positive biopsy, that is important. What were the findings from your biopsy? What is the response to the gluten-free diet?

[mbg98]

I haven't seen any testings like yours, usually, I see antitTg antibodies done. I would ask your doc for clarification? Blood tests are not always accurate, and if you did have a positive biopsy, that is important. What were the findings from your biopsy? What is the response to the gluten-free diet?

My doc does not have very good bed side manner and makes me feel as though Im a bother when i question things, he is a gastro specialist so I feel as though i should trust his opinion, but don't really understand the bloodwork results either. According to him the Pathalogist said that I may have celiac and to get my blood tested to confirm. As far as results from bieng gluten-free i was more of the person that didn't have all the GI issues so its hard to tell, and I have only been gluten-free since Thursday. I did make an appt to go see my family doctor so hopefully he can explain better and read my tests to me. Im also hoping that he would refer me to a celiac specialst to confirm everything.

[trents]

I'd look for another GE doc. No one should have to put up with a doctor who makes you feel uncomfortable in asking questions for clarification sake.

[Ursa Major]

Your nutritionist says there are different degrees of Celiac disease? I think you not only need a new doctor, but a new nutritionist, too. Because you either have Celiac disease, or you don't. There are different degrees of damage, but not different degrees of celiac. If you have it, you need to be 100% gluten free, period. Even if you only had mild GI symptoms. I've heard of people who's ONLY obvious symptom was anemia, no obvious GI issues at all. They had extensive damage to the small intestine (proven by biopsy), without ever having any severe GI symptoms!

Your tests prove you have Celiac disease. That's all you really need to know, and can go from there. Very few doctors know enough about Celiac to give you good nutritional advice, and the same goes for so-called nutritionists.

Unfortunately, you will have to do your own research. And you will find all the important info on this site. For starters, you need to be absolutely sure of not eating (or drinking) anything that has any part of wheat, rye, barley or oats in it. You also need to replace any shampoo, toothpaste, lipstick/lipgloss, handcreme, lotion, make up, soap.........................the list goes on..........with wheat germ, barley extract or any other form of gluten you own and use.

You will need to buy a new toaster, if you are planning on eating gluten free bread. You need to replace any scratched non-stick pots and pans (if you have stainless steel, scrub them well, then they're okay), wooden cooking spoons and cutting boards. Even a crumb of something containing gluten is too much.

You will need to read all labels. Gluten is hidden in a lot of foods, under different names (somebody will likely post a link to a list). Your best bet is to eat freshly prepared foods and to avoid processed foods.

It will be hard at first, but gets easier with time. And you have a lot of support here, I don't know what I would have done without the help and support I get here, I learn something new every day. Hang in there!

[mbg98]

Thanks everyone! My nutritionist was terrible, I have no plans on returning to see her. My GI doc also leaves a little to be disired in the explanation department, he had is secretaryu call me and say my test were positive for Celiac, i had to ask for him to call me to explain. I am really hoping that I can get refered by my family doctor to a hospital about 1 1/2 hours away, they have a center for celiac research, so they should have some doc's that know what they are talking about! I actuaally just went to see my surgen for my post gallbladder chek up and we were talking about it, he told me the same thing the nutritionalist told me, not to stress eat stuff with gluten if you want, it's not going to harm you that much. which goes against everything I have read and what my GI doc said. Peolpe around here are clueless, and it drives me crazy!

[Ursa Major]

Ah, another link in the puzzle, you had your gallbladder out, too! It's incredible how many people with Celiac disease end up having to have their gallbladder out, me included (as well as my mother and sister and a ton of other people on this forum). Gallbladder disease appears to be a symptom of undiagnosed Celiac disease.

And your surgeon is definitely clueless. Unfortunately, there are people here who were diagnosed with Celiac disease years ago, but didn't follow a gluten-free diet because of bad advice from clueless doctors like that. And got sicker as a result.

[VydorScope]

After a nightmare of an appt witha nutritionalst I got to thinking about her saying that there are different degrees of having this disease, I wanted to know where I stood. I have always had MILD Gi issues nothing to the extent of whats discussed in here, I always chalked it up to poor diet or un diagnosed IBS. Anyway my Celiac was discovered by fluke, had and Endoscope to check for ulcer saw damage did biopsy came back that I could possibly have Celiac and to have bloodwork to confirm. I did that and was told there was no doubt i have Celiac and we went from there. I however went today to get copies of all my blood work and i am not understanding somethings or wondering if I truly do have it, so here it goes the test reads:

*ENDOMYSIAL AB (IGA)------------------------POSITIVE (Negative)

[a]

ENDOMYSIAL AB TITER --------------------------1:40

[a]

GLIADIN AB IGG-------------------------------------------5 U/ml (<11)

[a]

Referance range:

<11 U/ml negative

11-17 U/ml equivocal

>17 U/ml Positive

Gliadin AB Iga------------------8 U/ml (<11)

[a]

Then it gives the same referance guide as above.

The top one ENDOMYSIAL has a star that my doctor drew and then a note that says "needs dietary consult (gluten-free) "

I know the top one says POSOTIVE next to it but it then has negative in (), and then the 2 GLIADIN tests are in the negative range, what does that mean??

Please someone explain.

Thanks,

IM NOT A DOCTOR

THe reason it says (NEGATIVE) is thats the normal result, meaning if you sorce NEGATIVE you are normal but if you score POSTIVE, you have celiac disease. Make sense? You have a postive blood test, time to start the diet.

[Patti]

Hi

I feel for you, as I too am newly diagnoised ( Positive Biopsy and Blood testing) and not getting enough answers to satisfy me. My nutritionist put me on flax seed and that sent me to the emergency room because it was milled in a plant that grinds wheat. (duh). I have been on a G.F. diet and am finally feeling better. My Sister died from Lymphoma a complication of Celiac disease. It's genetic and I also beleive that my Dad had it too.

I also have had my gallbladder removed and have Pheripheal Neuropathy for the past 10 years. I hope the P.N will subside with the diet. The nutritionist told me it woul take aleast a year before I will know.

Anyone else been told that?

Love to hear from you! Patti

[Ursa Major]

Vincent, what a sweet picture of Tymber! I've put in an order with my one daughter for a kid with red, curly hair. None of my kids has inherited my red hair or blue eyes. But my second daughter is due with her first baby in May, and her husband has red, curly hair (her hair is extremely curly, but very dark, like my husband's used to be). So, with her kids there are genes for red hair on both sides. Unfortunately, also genes on both sides for Celiac, as her husband's mother has it, too!