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Emily8608

Repeated Blood Work Is Different. Now I'm Confused.

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Hey guys, I've had celiac blood work done twice now- once through a lab that didn't require an MD's orders and then again a few months later when I finally found a GI doc here in Los Angeles to follow-up with. What's confusing is that my results have changed. Here they are:

 

Original panel April 2014:

 

tTg IgA 9 (normal is <4)

IgA 163 (normal 81-463)

EMA IgA with reflex to titer was positive (normal is negative)

EMA titer 1:5 (normal is <1:5)

 

Second panel was done at UCLA on July 1st, 2014 (and after eating tons more gluten than normal since the 1st results came back positive):

 

tTg IgA 4 (<4 negative, 4-10 weak positive)

tTg IgG <6 (normal <6)

Deamidated gliadin, IgA <20 (normal is <20)

Deamidated gliadin, IgG <20 (normal is <20)

EMA <1:10 (normal <1:10)

 

So I've gone from a positive tTg IgA to a very weakly positive one, and from a positive EMA to a negative one. My GI doc sounded like she wouldn't have suggested the biopsy if all we had was the second set of results, but since we had already scheduled one we would do it anyway. I asked at my 1st appt with her if we could do the genetic test but she said no, she only dose those on borderline patients.

 

So I had my endoscopy with biopsies today, obviously the pathology report isn't back, but she said she didn't see anything that would obviously stand out as Celiac (like scalloping). What I do have is distal esophageal hyperemia (which could be GERD), multiple red based erosions in the pre pyloric antrum (biopsy taken) that she is guessing are from NSAID use, she took additional biopsies from my stomach, duodenal bulb, and 2nd and 3rd portions of the duodenum.

 

Not that I WANT celiac, but I do want an answer, which is what I thought I had back in April. I definitely feel better when I am eating a gluten-free diet, and as of today I am planning to eat and live as though I have celiac regardless of the biopsy results unless my doc can come up with another explanation for my symptoms (fatigue, brain fog, daily headaches and joint pain, constipation, gas, bloating, etc).

 

Any advice? Suggestions? Has anyone had their blood work change like this?

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A lab that doesn't require dr's orders might be more of the issue vs your results actually changing.  The quality of the equipment and the people using the equipment could account for the differences.  You won't ever know I guess.  I wouldn't give it any more thought.  You have had the testing needed and it's negative, but if you feel better not eating gluten, go for it.  It's not like its harmful to do that.  I can't eat spicy food, never have been able to.  I don't need a "diagnosis" to tell me not to eat it :D.  If it works better to tell people you have a gluten allergy or something, then do so.  It's not like anyone can check your medical records.

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Did your diet change at all in the six months prior to the first test? I've never had EMA tested, but I had tTG-IgA drawn twice, about a month apart. For about 15 years prior, I'd been eating gluten light. I didn't really know anything about celiac at the time, I just knew I felt sick when I ate bread and pasta, so I avoided it. Then I was completely wheat-free for four months because I suspected a wheat allergy, but I sometimes cooked with barley flour. Then I was completely gluten-free for a couple of weeks. At the end of that time my tTG was first tested and was negative but at the highest negative value. I did a gluten challenge for just under six weeks, eating about one slice of bread a day most days (had a really bad reaction and couldn't tolerate more), then had tTG tested again and it actually went DOWN one number! This was wacky because I'd been eating more wheat during that month.

I have no explanation, but two theories: 1) Maybe for some people tTG reflects what you were eating months ago more than it reflects recent diet. Prior to those four months I'd never been totally gluten free, and even though I was gluten light I was probably getting at least some every day in condiments, soups, etc. So if tTG takes a few months to reflect dietary changes, it would make sense that my first level would be higher than my second, since it would reflect more of the gluten-light time rather than the wheat-free and then brief gluten-free time right before the gluten challenge. 2) Maybe some people react more to barley than to wheat? Subjectively, I feel even worse after eating barley malt than wheat. I almost never ate barley prior to the wheat-free time when I experimented with cooking using barley flour. I didn't have barley during my gluten challenge either. However, I also have a problem with sulfites, so that could explain the malt reaction in a way that has nothing to do with gluten.

Anyhow, sorry I have no answers, but I find this kind of thing puzzling too! Good luck, and I hope your biopsy gives you clear answers.

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Lab tests do not correlate well with celiac disease severity.  There are people around here with normal labs but with serious intestinal damage and then there are others with normal intestines (or at least the samples taken were normal) but they have very high blood tests.  There is a huge variation between celiacs.  The problem with testing is that in order to get a definitive result, you need to make yourself quite sick so the doctors can see the "proof" of the disease... symptoms don't seem to count much when it comes to getting a diagnosis.

 

Also, you need to remember that celiac disease is an autoimmune disease and those can wax and wane.  They are not steady nor will they give steady lab results. Your body can change things around.  I remember getting my thyroid tested a week or so apart and the results varied by 50% - it came down enough to be considered normal and delayed my thyroiditis diagnosis by years, in which time I became sicker.  Anyway, my point is that there were some abnormal results and something caused that.  Which a tTG IgA, there is about a 5% chance of the results were caused by something other than celiac disease (usually colitis, crohn's, thyroiditis, liver disease, diabetes, infection).  If you do not have those disease, and you have celiac symptoms, it is probably celiac disease.  

 

The EMA IgA is even more specific to celiac disease.  A positive caused by something other than celiac disease has a likelihood of 0-2%.  A positive EMA IgA generally means the disease is getting to be more advanced.  Yours is still pretty low so perhaps the disease is still in the early stages?

 

Most celiacs do not have intestinal damage that is visible during the endoscopy.  You'll need to wait for the biopsy results (which is tough to do!).  Hopefully they took at least 6 samples and managed to sample the damaged areas. Let us know the results.

 

I think you should try the gluten-free diet regardless of the endoscopy result.  You've had positive tests and chances are they are caused by celiac disease. Hopefully you'll feel better within a few weeks.  Best wishes

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