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Lab Results


Carin3

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Carin3 Rookie

Hi! I was recently diagnosed with Celiac in Novemember 2009. I have barely any of the GI symptoms of celiac but almost all the non-GI symptoms of celiac!! I started seeing a hematologist for chronic iron deficency anemia which didn't improve with iron pills. She sent me to a GI doc who did a endo and colonoscopy. My biopsy came back saying small bowel mucosa showing minimal loss of the villous structures (mild blunted villi); increased density of intraepithelial lymphocytes and hyperplasia of the crypts. Marked increase in intraepithelial lymphocytes of superficial villous epithellum. So one GI doc didnt think it was celiac and sent the biopsy for a second opinion (he also told me not to go gluten-free if I could control my anmeia with iron pills!)to yale. There biopsy report reads: We concur with the original pathology interpretation. biopsies reveal normal to minimally abnormal villous architecture. There is a definite increase in intraepithelial lymphocytes. Then in the end of November I got a IV iron transfusion (my hgb was dropping). November 1st I started going gluten free. I do feel better but unlike a lot of you I don't have the GI symptoms so it is hard er for me to tell. A couple weeks ago I went back to the hematologist and my hgb is within the normal range for the first time in like 15 years!! After the IV iron in November she did not have me take any supplemental iron. Before I forget before going gluten-free the GI doctor did the TTG IgA and IgA both normal. I dont mind being gluten-free but want your opinions as to if you think I have celiac or not. I would love to hear what you have to say!! Thanks!! Now moving on to my son. He is 4 y.o and has had GI issues since he was 2 (well he did have reflux as a baby). He has had about 5 endoscopy's and one colonoscopy. His first endo at 2 they found a large nasty stomach ulcer in the fundu area of the stomach and they found chronic reflux esophagitis, about a year later they found a duodental ulcer (while on reflux/ulcer meds), duodenitis and reflux esophagitis, another newer endoscopy showed the duodenitis and esophagiits. During each endoscopy they have taken biopsies for celiac which have come back negative-although the doctor DID NOT know that I may have it. He freuqently complains of stomach pain,throat pain and we have a lot of problems with him pooping in his underwear (although that seems to come and go). We recently had to switch pediatric GI docs b/c our stopped taking insurance (and this may have been a blessing). We are now seeing a peds GI at CHildrens National Medical Center in DC (this new doc does know about me). He ordered a ton of lab work (including celiac panel and celiac genetic). All his lab work came back normal including the celiac panel (but remember mine was normal as well). I just got a call today that said he has the gene for celiac but is low risk. I am very confused by that and I hoping some of you might explain. If I do have celiac and he carries the gene wouldnt that put him at a higher risk for getting celiac? I realize the doctor is busy and we have only seen him once so far so he might have forgotten that I thinki I have celiac. He is getting a endoscopy and ph probe (never had that done to check out the reflux) on Tuesday b/c he continues to have some belly pain and its not good for him to continue to have the duodenitis. Any opinions would be helpful. I am sure tuesday I can find out more about what the genetic testing said but would love to hear what you all have to say. Every test any doctor has ever done on my son has been normal and they have never been able to firgure out why he had the two ulcers and the duodenitis. I am wondering if we could finally have an answer or not. SORRY this is so long but sooooo confused about myself and my son. I have found these forum VERY helpul in the past 4 months and appreciate everything. Thanks!!!


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tarnalberry Community Regular

Your bloodwork isn't very useful. They (apparently) only tested for IgA antibodies, and not a total IgA count or IgG antibodies. IgA deficiency is fairly common in celiacs, so without a total IgA count, the IgA antibody tests are useless.

ravenwoodglass Mentor

I am going to put it short and sweet. I would give him a couple of months trial on the diet after all the testing is done. False negatives in children are even more common than in adults.

string bean Newbie

Your bloodwork isn't very useful. They (apparently) only tested for IgA antibodies, and not a total IgA count or IgG antibodies. IgA deficiency is fairly common in celiacs, so without a total IgA count, the IgA antibody tests are useless.

I had a celiac panel done and the only thing that came back high was my total IgA. So, I understand that to mean I am not IgA deficient, but what does an abnormally high total IgA mean?

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    • Jula
      Thanks, trents, for both the welcome and the perspective. That is exactly how I'm feeling at this point. The main reason I was considering this particular confirmation is because 2 primary care physicians, one an internist, had said this should be done because they could not be sure based on the information I have that it is celiac and not gluten intolerance. When I asked why that mattered, either way I would have to remain gluten free, the internist especially insisted that she would have to watch for a different set of repercussions on other organs. I could find no proof of this but the questions she raised made me think I should have a definitive diagnosis. But now knowing that it's more than a meal's worth of contamination needed, I don't think I can do it, although  the occasional contamination from eating at a friend's place or restaurant may still happen and if it does and I end up with the rash again, I could get that biopsied and have the same results, it seems. Thanks, again.
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    • trents
      Jula, welcome to the forum. What possible benefit would having an official diagnosis give you at this point in your life? You already have medical test evidence that you are a celiac (antibody tests and genetic testing) and the symptom improvement when you went off gluten confirms what the testing already pointed to. Why on earth would you risk damaging your health by going back on gluten to get further confirmation of what you already have proved? You are now 15 years older than when you first went gluten free and your body will not tolerate the abuse it would back then. Call your GI doc and tell him you have decided to proceed as you are without the gluten challenge. If you want to go forward with the endoscopy to check for upper GI health in general, I can understand that but I certainly would not go back on gluten just to enhance the chance that you will receive additional confirmation of what you already know to be true. Are you having any other upper GI issues that you want to get scoped for? Having said all that, it sounds like you may need to double down on your efforts to eat gluten free and now have the freedom to do that since you aren't any longer caring for your parents.
    • Jula
      I will admit that when I was told I would have to eat gluten before getting the biopsy that would definitively diagnose Celiac for me, I was kind of psyched when I thought of all the things I would eat and enjoy since going gluten free in 2009. I was diagnosed that year after the results of tissue transglutaminase testing combined with persistent anemia (blood work also measured this) and a skin rash that definitely turned out to be gluten related (dermatitis herpetiformis) although it was never biopsied. For various reasons, I was never able to go for any follow-up testing, including the biopsy, as recommended by the diagnosing physician. I did, however, immediately go gluten free as much as humanely possible. There were a number of contaminations over the years as I was caring for parents who were not gluten free and who were going through enough so I did not feel good about depriving them of many of the things the loved to eat. I am about to have my first endoscopy, primarily to assess any damage that has been done to my small intestine over the years and to establish a baseline, but I thought it would also be a good time to do the biopsy and get the definitive diagnosis. My gastro doc agreed. But then his office called to say I would have to consumbe gluten for 6 weeks prior to the surgery. I freaked. I couldn't imagine feeling that bad for that long and couldn't figure out how I would function. I thought I would have to eat a meal or two, especially being that I have become more sensitive and can feel the impact of someone stirring my gluten-free pasta water with the spoon from their lots-o-g pasta. It usually takes 2-3 week to get rid of all of the symptoms, but if the dermatitis herpetiformis comes back, that remains for months or more, depending on the weather, my stress level (I tend to give in for the need to scratch the insane itch more) and a few other things. I spoke to my Gastro and we negotiated down to 7-10 days of gluten eating, but he was not sure it would give him all of the info he needs for the biopsy/diagnosis and I am increasingly worried that, judging how eating gluten shut me down, caused my asthma to get worse, my moods to swing wildly and to become so bone tired and joint sore that I couldn't make it up the subway stairs and so sat down and immediately fell asleep for about 10 minutes before someone shook me awake ---- all of which caused me to have someone look into what was going on with me, being that my doc at the time kept diagnosing different symptoms as issues and trying to give me more pills to treat them all. None of that helped. Going gluten free did. I also found out I have at least one of the genetic markers for celiace. I was adopted, so I didn't have that info before. I know this is not a unique story for people with Celiac pre-diagnosis. My question is: Will having an unquestionable diagnosis from the biopsy be worth ending this and starting next year feeling like crap, barely being able to function, likely depressed and a bit manic, and too tired and sore to move much at a time I have been battling to have my life back after being a very long term, 24/7 caregiver for my parents and getting lost in the serious shuffle of all that? Thank you to all of you who take the time to read and especially to those that take the time to respond and help me out of my vacuum! I need some perspective on this, please, because I am becoming increasingly anxiety-ridden about this but I want to do what will be the most beneficial to me in the long term. Thoughts?
    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
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