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So Does This Mean I'm For Sure Negative For Celiac?

chris4845

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chris4845 Newbie
chris4845
Posted

I had a blood test for celiac and my results were

gliadin ab, deamidated IgG: 2.3 < 20

gliadin ab deamidated IgA: 6.5 ,20

My blood tests are negative but i have read on here people saying to make sure to get the full celiac panel, which i didn't do. So is this still an accurate test without the rest of the panel?

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lizard00 Enthusiast
lizard00
Posted

Nope. You really need the full panel. I will always test negative on blood tests because I'm IgA deficient... which they found by doing a complete celiac panel.

chris4845 Newbie
chris4845
Posted
  • Author

Nope. You really need the full panel. I will always test negative on blood tests because I'm IgA deficient... which they found by doing a complete celiac panel.

?

But i did get the IgA didn't I? And i wasn't deficient right?

chris4845 Newbie
chris4845
Posted
  • Author

I was tested for IgA though wasn't I? and I wasn't deficient right?

mushroom Proficient
mushroom
Posted

The two tests you had were the Deamidated Gliadin Peptide (DGP), the IgA and IgG versions, and both were negative, that is true.

What lizard was talking about was the total serum IgA, which measures whether or not you are a normal producer of IgA antibodies. If this is low, then they must run the IgG versions of all the celiac panel. You have had the IgG DGP, but there are also the following tests:

total serum IgA

AGA IgG

EMA IgG

tTG IgG

If your total serum IgA is negative these tests should be run order to be sure you are not celiac. If your total serum IgA is normal, then you should ask for also the IgA versions sof the AGA, EMA, and tTG, to be sure. Many doctors for some reason (maybe insurance company pressure?) choose not to run the full celiac panel, but it is known that you can be negative on some celiac tests and positive on others, and if you do not produce normal IgA quantities of antibodies, you will always be negative on IgA, so the IgG versions must be used. The negative DGP IgG does not rule out celiac, although it makes it less likely because it is a test that is pretty specific for celiac.

chris4845 Newbie
chris4845
Posted
  • Author

Ok i understand now, thanks for explaining :) If i go back and get those tests done and it comes back negative, does that mean i can rule out being celiac. Or can it all be false negative?

lizard00 Enthusiast
lizard00
Posted

Sorry for not explaining myself. I was getting tired. Thanks shroomie! :P

If you go back and get the full panel, and it comes back negative, your IgA levels are good etc., then most doctors would say that you can rule out celiac. But if you don't mind me asking, what prompted you to get tested? False negatives are more common than you would think, and if you have tried the diet and found success, then really, there's your proof.

If you were part of a screening process, have no problems with gluten and come back negative, I suppose if it were me, I would go on my merry way. :)

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chris4845 Newbie
chris4845
Posted
  • Author

Sorry for not explaining myself. I was getting tired. Thanks shroomie! :P

If you go back and get the full panel, and it comes back negative, your IgA levels are good etc., then most doctors would say that you can rule out celiac. But if you don't mind me asking, what prompted you to get tested? False negatives are more common than you would think, and if you have tried the diet and found success, then really, there's your proof.

If you were part of a screening process, have no problems with gluten and come back negative, I suppose if it were me, I would go on my merry way. :)

Thats ok, and i didn't mean to post my reply to you answer twice, i just joined and wasn't sure if i posted the reply right :) I got tested for celiac and a bunch of other things including some other autoimmune diseases. My symptoms i was having have been iv been having a lot of joint problems for about 8 months. Iv always been hypermobile but never had pain until about 8 months ago and its been getting worse since then. I also get little stomach aches daily, normally not real bad. Also I'm normally constipated unless I eat tons of fruit during the day. I get pain, kinda like a burning feeling in my lower right side of my abdomen as well. Then Iv always had like daily headaches since I was like 6. There not like real bad migraines but just like normal headaches. Im 16 now. I can also never seem to get enough sleep to now feel tired and fatigued. No matter how long I sleep I still have huge bags under my eyes and feel really tired. I don't have trouble falling asleep or staying asleep but I never feel like I got a good sleep.

chris4845 Newbie
chris4845
Posted
  • Author

Sorry for not explaining myself. I was getting tired. Thanks shroomie! :P

If you go back and get the full panel, and it comes back negative, your IgA levels are good etc., then most doctors would say that you can rule out celiac. But if you don't mind me asking, what prompted you to get tested? False negatives are more common than you would think, and if you have tried the diet and found success, then really, there's your proof.

If you were part of a screening process, have no problems with gluten and come back negative, I suppose if it were me, I would go on my merry way. :)

One more thing I forgot to add is that I have been losing weight too, Though I haven't ever been able to gain weight no matter what I ate. Then only thing I can gain is muscle but I had to stop working out because of joints. I was at 145 8 months ago and now I am 125. I know I lost most of my muscle but it just seems like Im really losing a lot of weight with out even trying. I eat a lot too. But I guess it could just be from not working out. Idk just thought I'd add this :)

GFinDC Veteran
GFinDC
Posted

I was always real thin, no matter how much I ate. And I ate a lot, plenty of protein and carbs. I didn't gain any extra weight until I went gluten-free. I eat much less now but have not lost the extra weight. I am also hypothyroid now though and in my fifties so things are slowing down. But for 40 or so years I was thin or even skinny.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

My blood tests were negative, but an endoscope was scheduled anyway. The GI wanted to have a look because I was so sick and losing weight, etc.

I was told that the blood tests can have a false negative in 20-30% of cases.

When the GI did the scope my damage wasn't microscopic like some people. It was glaringly obvious that I had severe damage.

I just wanted to add that..because some Dr.s consider a negative blood test as an answer and don't order the endoscope that gives the answers you need.

If you don't get the scope, try gluten-free strictly and see if you feel better?

chris4845 Newbie
chris4845
Posted
  • Author

My blood tests were negative, but an endoscope was scheduled anyway. The GI wanted to have a look because I was so sick and losing weight, etc.

I was told that the blood tests can have a false negative in 20-30% of cases.

When the GI did the scope my damage wasn't microscopic like some people. It was glaringly obvious that I had severe damage.

I just wanted to add that..because some Dr.s consider a negative blood test as an answer and don't order the endoscope that gives the answers you need.

If you don't get the scope, try gluten-free strictly and see if you feel better?

Do you think I should go back to the doctor and get the full celiac panel done or just try a gluten free diet?

Ollie's Mom Apprentice
Ollie's Mom
Posted

Do you think I should go back to the doctor and get the full celiac panel done or just try a gluten free diet?

Depends if you feel you need an "official" diagnosis or not.

I tried a gluten free diet after several doctors were unable to help me. The difference it made to my life was significant. And so, I don't need a doctor's "official" diagnosis to tell me that I need to stay gluten free.

BUT, do you think you will want to have any testing done in the future (like, if you try eating gluten free and start to feel better, will you want to have tests done to "confirm" that gluten is your issue)? If the answer is yes, get every test done NOW, before trying a gluten free diet. Because, if it works for you, you will likely not want to go through a 3 month gluten challenge prior to having tests done.

chris4845 Newbie
chris4845
Posted
  • Author

Depends if you feel you need an "official" diagnosis or not.

I tried a gluten free diet after several doctors were unable to help me. The difference it made to my life was significant. And so, I don't need a doctor's "official" diagnosis to tell me that I need to stay gluten free.

BUT, do you think you will want to have any testing done in the future (like, if you try eating gluten free and start to feel better, will you want to have tests done to "confirm" that gluten is your issue)? If the answer is yes, get every test done NOW, before trying a gluten free diet. Because, if it works for you, you will likely not want to go through a 3 month gluten challenge prior to having tests done.

I don't really care for an official diagnosis cause if it makes me feel better than its worth it and an official diagnosis wouldn't really matter. But since I'm only 16 and I'm not the one who buys the food, I'm not sure if my parents would start spending all the money to buy a bunch of gluten free food for me to eat to replace our heavy gluten diet, if I don't have an actual diagnosis saying thats my problem and thats whats wrong with me. If I do test the diet to see if it helps, How long would I have to be on it too know weather it helps or not?

mushroom Proficient
mushroom
Posted

Well, first of all you do not need a whole bunch of expensive gluten free food because the basis of your diet will be gluten free anyway: meat, fish, vegetables, fruits, rice, potatoes, nuts. The things you will need gluten free will be bread and pasta which will probably not break the bank, and you could convince your mom to use gluten free flour in cooking your meals for sauces, thickening, etc., and some gluten free breadcrumbs for breaded things. You may have to spend some of your pocket money to buy snacks and treats for yourself, or learn to make them yourself :o You can do a market survey and find the brands of things she would normally buy that do not have gluten (marinara sauce, corn and potato chips, tortillas, e.g.) and suggest she substitute those for what she has been buying. You can have your own jars of PB, spreads, etc., specially marked so no one else uses them, to avoid cc. It really does not have to be a major expense. You can buy individual frozen pizza bases if you want pizza or if pizza is being served for dinner, and make your own.

The normal length of a gluten free trial is three months but you will probably know sooner than that. :)

chris4845 Newbie
chris4845
Posted
  • Author

Well, first of all you do not need a whole bunch of expensive gluten free food because the basis of your diet will be gluten free anyway: meat, fish, vegetables, fruits, rice, potatoes, nuts. The things you will need gluten free will be bread and pasta which will probably not break the bank, and you could convince your mom to use gluten free flour in cooking your meals for sauces, thickening, etc., and some gluten free breadcrumbs for breaded things. You may have to spend some of your pocket money to buy snacks and treats for yourself, or learn to make them yourself :o You can do a market survey and find the brands of things she would normally buy that do not have gluten (marinara sauce, corn and potato chips, tortillas, e.g.) and suggest she substitute those for what she has been buying. You can have your own jars of PB, spreads, etc., specially marked so no one else uses them, to avoid cc. It really does not have to be a major expense. You can buy individual frozen pizza bases if you want pizza or if pizza is being served for dinner, and make your own.

The normal length of a gluten free trial is three months but you will probably know sooner than that. :)

Well thats good, I'v just read a lot of things about how a gluten free diet is a lot more expensive and stuff. Im probably going to see if I can get the full celiac panel done sometime soon but if not then I'm going to go ahead and try the diet.

GFinDC Veteran
GFinDC
Posted

Your parents deserve to know about your possible celiac disease. They need to be part of your medical decisions as they are responsible for you. You should talk to them before making any change. They may want you to stay on gluten until the testing is complete. Being diagnosed with celiac can affect your school lunches and your college environment etc... It might end up saving money on the school lunches or in college allowing you to skip paying for the meal program.

It also might be a negative thing to have on your medical record as far as insurance coverage goes. So there are several things to consider before deciding.

The gluten-free diet can be more expensive or less expensive depending on how you do it. Eating lots of processed gluten-free foods is expensive, but you don't need those to live. Regular whole foods like chicken, veggies, fruit, nuts etc are a much better way to go. And they don't cost any more for us than they do for other people.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

If you're still eating gluten, I'd say push for the tests. Knowing if you have Celiac disease, or just a gluten intollerance could make a difference in the way you approach a lot of things.

The expensive gluten replacement foods aren't good for you IMO. The rice based pasta, not a big deal..and you may want a gluten-free bread, but otherwise it's more healthy to eat whole foods.

A small amount of gluten can be in those replacement items labeled gluten-free. It *could* be enough to keep your symptoms going. It depends on how sensitive you are?

chris4845 Newbie
chris4845
Posted
  • Author

Your parents deserve to know about your possible celiac disease. They need to be part of your medical decisions as they are responsible for you. You should talk to them before making any change. They may want you to stay on gluten until the testing is complete. Being diagnosed with celiac can affect your school lunches and your college environment etc... It might end up saving money on the school lunches or in college allowing you to skip paying for the meal program.

It also might be a negative thing to have on your medical record as far as insurance coverage goes. So there are several things to consider before deciding.

The gluten-free diet can be more expensive or less expensive depending on how you do it. Eating lots of processed gluten-free foods is expensive, but you don't need those to live. Regular whole foods like chicken, veggies, fruit, nuts etc are a much better way to go. And they don't cost any more for us than they do for other people.

Yes I agree, They do know about my possible Celiac and I have talked to them about it. They took me to get tested and they might be able to take me this week to get the rest of the panel done.

GFinDC Veteran
GFinDC
Posted

Great! Another thing to think about is the genetic aspect. Celiac is passed on through genes, or rather the possibility to develop it is. So, your other family members should be tested if you are positive. It might be interesting to ask your parents about their relatives who may have other auto-immune diseases also.

People with celiac tend to have a somewhat higher incidence of developing other auto-immune diseases. You can find lists by searching for "celiac related condtions" or "celiac associated conditions"

Celiac Disease Research: Associated Diseases and Disorders

Some people end up going to the doctor for arthritis or other symptoms and it turns out later they actually have celiac disease. Hashimoto's thyroiditis is another auto-immune disease that celiacs tend to get more often. Dermatatitis herpetiformis is a skin rash that celiacs get. Lupus and fibromyalgia are also in there along with Sorgren's and diabetes. So if there are a lot of auto-immune disease in your family, it might be an indication of greater chance of celiac disease.

chris4845 Newbie
chris4845
Posted
  • Author

Great! Another thing to think about is the genetic aspect. Celiac is passed on through genes, or rather the possibility to develop it is. So, your other family members should be tested if you are positive. It might be interesting to ask your parents about their relatives who may have other auto-immune diseases also.

People with celiac tend to have a somewhat higher incidence of developing other auto-immune diseases. You can find lists by searching for "celiac related condtions" or "celiac associated conditions"

Celiac Disease Research: Associated Diseases and Disorders

Some people end up going to the doctor for arthritis or other symptoms and it turns out later they actually have celiac disease. Hashimoto's thyroiditis is another auto-immune disease that celiacs tend to get more often. Dermatatitis herpetiformis is a skin rash that celiacs get. Lupus and fibromyalgia are also in there along with Sorgren's and diabetes. So if there are a lot of auto-immune disease in your family, it might be an indication of greater chance of celiac disease.

My grandma actually does have Rheumatoid arthritis but thats the only family member I think that has an autoimmune disease that I know of. Im going to get the full celiac panel as well as a bunch of of autoimmune tests in about 2 weeks when I go see a rheumatologist. Would it be a bad idea to go ahead and start trying the gluten free diet or should I wait? I know it could effect the tests but is 2 weeks long enough to make a difference in the test results?

mushroom Proficient
mushroom
Posted

Stay the course! Two weeks could potentially make the difference between diagnosis and inconclusive :(

chris4845 Newbie
chris4845
Posted
  • Author

Stay the course! Two weeks could potentially make the difference between diagnosis and inconclusive :(

Alright, I guess thats what ill do then :)

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