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So Sick

Ava

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Ava Newbie
Ava
Posted

I was wondering if it was still possible for me to develop Celiac with these test results. My symptoms are: diagnosed Hypothyroidism, IBS, fingers go numb,head aches, loose stools, heart burn, depression,anxiety, chronically ill, asthma,rash on ankles, and fibromyalgia. I also get canker sores in my mouth all the time. I was negative also for the HLA DQ2 and HLA DQ8 Alleles. I'm so depressed, I just don't know what to do anymore.

Anti-Gliadin IgG ELISA (AGA IgG) 1.3 U/ml

Anti-Gliadin IgA ELISA (AGA IgA) .8 U/ml

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) .3 U/ml

Anti-Endomysial IgA IFA (EMA IgA) Negative

Total Serum IgA by Nephelometry (Total IgA) 230 mg/dl

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Coinkey Apprentice
Coinkey
Posted

Many people are gluten sensitive and get negative results to every test. Your real results will come from going gluten free for a while to see if you get any improvements. I have negative results to the celiac panel except for low vitamin D and iron- apparently these are common ones to be low in celiac patients (according to what others have said on here). Yet, on the gluten free diet, I feel a million times better. Before getting the negative results it was important to me to have a diagnosis. Now, I don't need it from the doctor because I ate gluten at every meal for 3 days before the blood test and I felt AWFUL for a week afterward. Gluten is not something I wish to eat intentionally again. My so called know everything doctor doesn't think it's celiac and thinks the problem will probably go away ... uh huh... right..... :huh:

Skylark Collaborator
Skylark
Posted

Where's Ravenwoodglass when you need her? She's our local non-DQ2/non-DQ8 celiac poster child. I think she's double DQ9. The genes are only a risk factor, not a yes/no answer like some doctors seem to believe.

You can be negative on all the tests and still be very sensitive to gluten. My mom is. Try the diet for a couple months and see if it helps. You may be pleasantly surprised.

ravenwoodglass Mentor
ravenwoodglass
Posted

Where's Ravenwoodglass when you need her? She's our local non-DQ2/non-DQ8 celiac poster child. I think she's double DQ9. The genes are only a risk factor, not a yes/no answer like some doctors seem to believe.

You can be negative on all the tests and still be very sensitive to gluten. My mom is. Try the diet for a couple months and see if it helps. You may be pleasantly surprised.

Trying to de-bat her house. :o

First off those tests were done 2 years ago. I would have the doctor rerun the tests if you continued to eat gluten because of the results. You can't go off just the gene tests to rule celiac in or out. They are not diagnostic in themselves and gene testing is a relatively new science.

I would get the blood tests run again and if you want one have a endo. Then as soon as the endo is done get yourself on the diet strictly. Your body knows the real answer.

cassP Contributor
cassP
Posted

I was wondering if it was still possible for me to develop Celiac with these test results. My symptoms are: diagnosed Hypothyroidism, IBS, fingers go numb,head aches, loose stools, heart burn, depression,anxiety, chronically ill, asthma,rash on ankles, and fibromyalgia. I also get canker sores in my mouth all the time. I was negative also for the HLA DQ2 and HLA DQ8 Alleles. I'm so depressed, I just don't know what to do anymore.

Anti-Gliadin IgG ELISA (AGA IgG) 1.3 U/ml

Anti-Gliadin IgA ELISA (AGA IgA) .8 U/ml

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) .3 U/ml

Anti-Endomysial IgA IFA (EMA IgA) Negative

Total Serum IgA by Nephelometry (Total IgA) 230 mg/dl

ya Ava- dont worry- & listen to these other girls too- DQ2 & DQ8 are only 2 of several genes associated with Celiac... PLUS- Europe tests for 2 more genes they recognize as Celiac related that we dont even test for here.

i think you have way too many symptoms to be continuing on any kind of gluten filled Food Pyramid diet.

good luck :)

cassP Contributor
cassP
Posted

WHOA.. has anyone read this yet:

Open Original Shared Link

especially the last paragraph- wow... so much we still dont know about Celiac succeptibility

Skylark Collaborator
Skylark
Posted

WHOA.. has anyone read this yet:

Open Original Shared Link

especially the last paragraph- wow... so much we still dont know about Celiac succeptibility

Yes, I picked that one up in a lit search. There are some other genetic studies that suggest other loci but that's the largest so far.

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Ava Newbie
Ava
Posted
  • Author

Yes, I picked that one up in a lit search. There are some other genetic studies that suggest other loci but that's the largest so far.

Thanks to everyone that responded. That article is pretty amazing. I don't think there is any doctors here reading up on the research. I have had two colonoscopies and one endoscopy. The G.I. was so pissed to have to do the endoscopy, that I am not even sure if he did it correctly. "I'll do one, but I'm not going to find anything!". My family doctor told me that the test results were 100% and to forget about being gluten intolerant. She stated that I just have IBS. I'm just not getting why this makes some of the medical community so mad? I'm having a chest catscan tomorrow becuause I'm dizzy and having trouble breathing. Thanks again! :rolleyes:

ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks to everyone that responded. That article is pretty amazing. I don't think there is any doctors here reading up on the research. I have had two colonoscopies and one endoscopy. The G.I. was so pissed to have to do the endoscopy, that I am not even sure if he did it correctly. "I'll do one, but I'm not going to find anything!". My family doctor told me that the test results were 100% and to forget about being gluten intolerant. She stated that I just have IBS. I'm just not getting why this makes some of the medical community so mad? I'm having a chest catscan tomorrow becuause I'm dizzy and having trouble breathing. Thanks again! :rolleyes:

You doctor sounds like a real 'winner' and I wouldn't put to much value in what she is saying. Chances are once you are on the diet you won't need to see her much anyway.

As for the dizziness and the trouble breathing don't be surprised if the catscan doesn't show anything. Celiac disease can cause inflammation in the entire body. Thus it can cause asthma type symptoms and when it is hitting the brain it can cause issues with balance. Both may very well clear up once your gluten free so if the results don't show anything don't let the doctor talk you into thinking your a 'head case'. Cat scans are expensive and throw a lot of radiation at the body also so if this is a test you have had done a few times you may want to ask if there is a different test they can do. Pulmonary fuction tests by a respiratory therapist might be one way to go or even a simple chest X-ray. Please note I am not a medical professional and am only giving suggestions.

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    • trents
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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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