Test Results Came Back Negative

[edonnelly69]

My test results came back negative and I was pretty certain that they would come back positive. Not sure how to read them, the nurse just said they are negative.

Gliadin antibody (IGG) in range <3 *** Reference range <11 U/mL

Reference Range:

<11 U/mL negative

11-17 U/mL equivocal

>17 U/mL positive

Ednomysial AB Screen (IGA)

Reflex to Titer

Ednomysial AB (IGA) Screen *** in range - negative Reference range - negative

Any help would be appreciated.

[ravenwoodglass]

There is up to a 30% chance of a false negative with blood testing. Doctors relying on the blood tests alone cost me many, many years and a lot of pain. If your going to have an endo keep on a full gluten diet until that is done. If you have already had one or don't plan on having one give the diet a good strict try. Your body will give you the answer.

[Mari]

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

[edonnelly69]

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

I am having the following symptoms:

Abdominal cramps, gas, bloating, pressure, stomach rumbling all the time, constipation, fluid retention, vitamin D deficient (dr. prescribed a high dose for 6 months), bouts of vertigo, teeth issues (in the past year I have had 2 root canals, 2 crowns, 2 fillings due to my teeth chipping and breaking).

I am due to have a colonoscopy on Monday. I called my doctor and spoke to his nurse about having further testing done for Celiac and she said that she would talk to the doctor about and endoscopy. I also asked about starting to eat gluten free and she said to hold off until they did further testing. Tonight I went out for dinner, I had crab legs for the first time in a few months and the pain is terrible. I feel that I have found the source to my problems and I want to eliminate it but can't until the doctor does further testing.

I just realized that I also had shrimp in a coconut cream sauce tonight, last time I had that I had so much pain and that is what is going on tonight.

[Kay DH]

My GI problems started last September, a couple of weeks after getting the flu. I went gluten-free after a few weeks because of D, C, bloating, mood swings, brain fog, stiff joints, muscle aches, etc. My Celiac panel came back negative, probably because of my being gluten-free. I had a Celiac Panel 3 years ago because of a rash I've had for a few decades, and it was negative (not uncommon for DH, but I didn't know that then). My endoscopy in May was negative, but then the GI only had me on the gluten challenge for a week and only took 1 biopsy of my duodenum (hard to find good doctors that know anything about celiac). So, aside from being HLA-DQ8, all tests were negative. I now know a lot more about gluten intolerance. I'm gluten-free because my health requires it. It is important to trust your body. There are reasons why it can take 9 years or more for some people to be diagnosed; these include that celiac symptoms mimic other diseases and conditions, the poor knowledge level of doctors, that people don't go gluten-free until there is considerable damage (partly because of doctors), and that the tests are not as reliable as they say.

[cassP]

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

[edonnelly69]

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

Thank you so much for the advice. I will call my doctor and request the Ttg test as that is not one that he ran. I did actually suspect the sauce and not the shrimp, the sauce did look quite thick like it had flour in it. I am ready to change my diet but unfortunately I need to have more testing done and I really want to have the testing done to that I can put my mind at ease and deal with this head on.

[edonnelly69]

This morning I came across a website that I had not seen before - The Gluten Syndrome and it is full of information about all of the different problems gluten can cause and their section on lab tests is very good.

You may have to find a Dr who will work with you in resolving your health problems, some people find that seeing a DC or ND is helpful. Some people do start living gluten free but I would suggest that you take some time to decide the next step before doing that as going back on gluten may make you feel ill. The Enterolab.com website may also help you understand what to do next. None of the blood tests can rule out celiac disease or gluten problems, they can miss 20 to 30% of Celiacs.

You could start eliminating some non-gluten foods from your diet - corn, soy, cow's milk, hot peppers - common foods which cause problems in Celiac's and non-Celiacs.

It may help us make cmments if you would describe your symptoms.

I did check out the website that you suggested and it has a lot of information, quite overwhelming but still very helpful. The nurse has told me not to adjust my diet in any way right now until they are finished with testing, although I am ready to make some changes. I did read somewhere that people from Northern Europe are prevelant to Celiac, I was born and raised in Scotland. I knew that wonderful Scottish diet would come back and bite me.

[edonnelly69]

i think its a good idea you stay on the gluten - and get an endoscopy along with your colonoscopy. and make sure they take several biopsies in different areas of your small intestine...

its good to check for everything else in the colonoscopy- while you're at it- so you can check off other possible worries.

false negatives DO happen, and many on here had negative tests - only to get positive results years later.

the EMA is 100% specific to Celiac- but i DID read that it can be a difficult test for the lab technician to execute, possibly resulting in an inconclusive result.

and i dont see Ttg on your test order. also you should get your Total Iga serum tested- being deficient in Iga could make your tests negative.

good luck, keep us posted....

ps- what makes u suspect SHRIMP to be the culprit, and not the COCONUT CREAM sauce?? also- be aware that A LOT of cooks add WHEAT FLOUR to sauces

Called my doctor, and he scheduled me for an upper and lower endoscopy on Monday along with the colonoscopy. Thank you so much and I will keep you posted.