Ore ida

[Carin3 0]

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!!!

[tarnalberry 314]

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 1,346]

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 0]

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?