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Questioning Diagnosis
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I just had the blood test done for Celiac's and the doctor said "one of the five tests came back very positive". She wants me to go on the diet to see if my symptoms go away. My question is...if only one part came back positive, doesn't that mean four parts came back negative. Should I ask for further testing BEFORE I change my diet? I was diagnosed with an very slight allergy to wheat as a child...but not even enough to treat. Could that have affected the test? I am new at this, so how would you suggest I proceed? Any guidance would be appreciated.

Sandy

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Which test came back positive?

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I got the results from the nurse over the phone. I had to ask which one came back positive. She sounded hesitant, started to say "anti-gl....", then said "ABS". I didn't know there was an ABS!!

Sandy

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The Anti-Gliadin Antibodies are IGA and IGG. That is what they were referring to. Did they say if both or one was positive? With both of those positive there is 95-98% chance you have celiac are stats I have heard of people with both positive. Which other tests did they test for?

If they both tested positive I would go on a gluten-free diet.

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She didn't tell me if it was one or both. I made an appointment to go in and talk to the doctor instead of the nurse this Thur. I will ask then. Thanks! That is exactly the kind of thing I need to know in order to even know what to ask the doctor. Do you know what the percentage is if only one test was positive? The nurse did say "one of the five tests came back positive".

Sandy

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It depends what all they tested for. There are certain tests that are more specific for celiac then others. The IgA is more specific then the IgG.

These are stats that I got from a site about it:

For, celiac disease, anti-gliadin IgG are more sensitive (about 100%) than IgA (about 50%), but IgA antibodies are more specific (about 95%) than IgG (about 60%).

If you decide to do further testing make sure you get it done by a reliable lab who is experienced and skilled in testing for celiac. I got my 2nd blood test(the one that diagnosed me) from Prometheus which is an experienced lab with celiac. They test for some things that regular tests don't test for and they are experienced with celiac reading.

Also this is at the bottom of a blood test I have and it says that Celiac patients have an increased IgA deficiency. Therefore, negative IgA antibody assay results do not necessarily rule out celiac disease.

If you need more info just let me know :D

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What kind of symptoms do you have? Is it worth it to you to try the diet and see?

Did they mention doing a biopsy?

richard

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Blood tests can come back negitive even if you have Celiac Disease.

If you feel that you need more proof before trying the diet there are other tests you can take. My brother hdid blood and biopsy even though there is afamily line of Celiacs. It's up tpo you. You could just try the diet and see how you feel.

If you think you might just have a wheat allergy then look further into that.

Good luck!

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I have irritable bowel symptoms and am VERY skinny. I have some neurological problems (tics, tremors) but those don't seem to relate to celiac disease, do they? I am on Topamax for the tremors which kind of explains my weight (Topamax is also used as a weight loss drug)... so I feel like it may just be IBS.

No one has mentioned a biopsy yet. But I have only talked to nurses. I get to see an actual doctor on Thursday. With the way insurance is I don't know if I can talk them into any further tests. That would cost them MONEY!

Thank you for all your input. I am learning so much. I feel like I know more of what to ask about on Thursday. I hope my doctor is informed about celiac disease.

Sandy

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Neurological problems can be associated with celiac. Celiac has many symptoms and some people don't have symptoms, and people who do have symptoms vary from person to person.Celiac is commonly misdiagnosed. IBS can be one of the misdiagnosis issues. A blood test can turn out negative and you could still have it. A biopsy was mentioned by a few people and you might want to consider talking to your doctor about that as well. You could always try the diet and see if you improve or not, you could look into other possibilites, or get a biopsy done. Talk to the doctor about your options and about your blood tests you had done.

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Sorry...I meant to say that none of the nurses mentioned anything about a biopsy. I will talk to the doctor about the biopsy, the blood test results, and a possible link to the neurological problems. Thanks again for all your explanation.

Sandy

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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