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Do I Need A Diagnosis?


saundiie

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saundiie Newbie

Hi,

I am at the end of my rope. I have suffered from extreme bloating, awful gas and occasional diarrhea for the last couple years. I've been to doctors and discussed IBS and "adding more fiber and water" to my diet. I grew up eating oatmeal almost every morning. My mother is a dietitian (no longer practicing) and taught me how to eat well-rounded healthy meals.

In 2007, I was in studying in Spain for one month and had a very stressful, anxious experience because of factors outside of my control. It was when I returned that I started having problems. As I say, my stomach blew up. I tell my family this every time it happens, not knowing why or what to do-- nothing alleviates the pain.

I saw a gastroenterologist and had an an endoscopy and colonscopy. He said I had "ulcerations", the beginnings of ulcers. I don't remember the results beyond this. I cut back on coffee and wine, but 3 years later, I'm in the same boat.

A year ago, I was talking to a new GP about it and she "suggested" I cut out gluten. I did and a couple weeks better i was feeling better. It wasn't solved and so I started reading books about the hidden places of gluten, so now I'm even more vigilant.

Celiac has been diagnosed in 2 people in my family, both on my mother's father's side. One is my mother's cousin and the other is my mother's sister. My grandfather's relatives come from Wales.

I still have issues when I go out to eat since I do not quite know what to ask for yet. My question is can I even be tested for celiac if I have been off gluten for almost an entire year?? What are the benefits of the diagnoses?

THANK YOU!


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beebs Enthusiast

If you are gluten free you will come back negative on the tests. If you want a diagnosis you would have to do a gluten challenge which is basically eating 4 slices of bread a day for 3 months. Alot of people have done one on here and I'm sure they'll chime in:)

Just be aware that after being gluten free often people feel worse than before when they start eating gluten again...I do.

come dance with me Enthusiast

Nah we had the blood test but nothing else because her blood test showed up positive for the gene and positive for the coeliac antibodies and my blood test showed up positive for the gene but negative for antibodies then on a gluten free diet everything changed and I wasn't willing to put her under anaesthetic for anything like that when there are ways around it. Either way the blood test was positive and she'll have a gluten free diet for life. Every time she is accientally glutened it has a very bad affect on her which further proves why I won't make her eat it.

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      Welcome to the forum, @Natosha! For future reference, when you share celiac blood antibody test scores, it is helpful to also include reference ranges for negative vs. positive since there are no industry standards in place. Each lab uses different scales. But, you have told us the results of the testing were negative, so we have the big picture. Looks like you had two tests run: tTG-IGA and DGP-IGA. One that should have been run and wasn't is "total IGA" which goes by some other names as well. Total IGA is important to run because it checks for IGA deficiency. If a person is IGA deficient, their individual IGA celiac antibody test scores will be artificially low and false negatives can be generated. Some doctors are under the mistaken impression that IGA deficiency only occurs in toddlers but we have had any number of adult contributors on this forum who were IGA deficient. I bring this up as you might ask that your PCP test you for IGA deficiency. No, three days of being gluten free would not likely have much impact on your test scores. I am also assuming that prior to that, you were eating liberal amounts of wheat products and not skimping on them because you suspected they made you ill. If you don't have celiac disease you may very well have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. I am including an article that discusses the various antibody tests that can be run for celiac disease detection. Your doc only ordered two. As you can see, there are several others. One one misses, another may catch. Some are more sensitive than others or are more specific. You could ask your doc for a "full celiac panel". For reference, you would need to be eating an amount of gluten daily for several weeks equivalent to what would be found in 4-6 slices of wheat bread leading up to the day of the blood draw or the testing to be valid. This is what current "gluten challenge" guidelines are recommending. By, the way, your doctor referring to starting the gluten free diet to address gluten sensitivity as a "fad" is not a good sign. That's a bad attitude and probably reflects outdated knowledge concerning gluten disorders. I think I would be shopping for another doc.
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