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Question About Antibody For Celiac Disease And Diagnosis

kari

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kari Apprentice
kari
Posted

Hello - I am a college student and last year I had issues with ongoing fatigue and general upset stomach, etc. I was also very iron deficient as well as deficient in many other vitamins even though I have always been very conscious to eat a lot of vegetables and to eat healthfully. Also, in the midst of this ongoing health kick, I had been paying attention to eating a lot of whole weat and grains, something in retrospect I realized I never mentioned to my doctors. The school health office refered me to a G.I. specialist, who told me that I did have the antibody for Celiac disease. We then scheduled the endoscopy and small bowel biopsy, which was a month or two off, and in the meantime, I consciously and unconsciously cut back a lot on eating obvious sources of wheat, mostly because it seemed silly to eat a lot of wheat when it was possible that I was allergic to it. Once the results from the biopsy came back, I was told that I did not, in fact, have Celiac disease, even though through casual conversation with nurses I know and with people who have Celiac disease, I had heard that if you have the antibody for it, then you definitely have the disease.

Now it is about a year later, and I have been eating healthfully, including eating wheat, since I was told I had no allergy to it, and I am having the same debillatating symptoms of extreme fatigue and stomach upset and cramping. Being a student, I also have thousands of dollars of medical debt from all the doctors I went to last year, and can't afford to go back.

My question is, if there are any doctors who read this post - is it possible for me to actually have celiac disease, even though the biopsies didn't show anything, since I did have the antibody? Is there a simple test I can go to a primary care physician and ask for without going through the whole expensive process again with a rushed G.I. specialist?

Thank you

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Rachel--24 Collaborator
Rachel--24
Posted

I'm not a doctor but to answer your question...yes, you can have Celiac even with a negative biopsy. The fact that you cut alot of gluten out of your diet would affect the outcome of any tests. I dont know which antibody test you had that was high but it means you either have Celiac or a gluten intolerance. Basically the same thing but only Celiac causes damage to vili. Either way you should be on a gluten free diet. Not just avoiding wheat but ALL gluten grains. If you would like to redo bloodtests you can ask them to run the Celiac Panel. Make sure they order the full panel. You should keep eating regular amounts of gluten daily if you plan on retesting.

In my opinion and since you've stated you are in debt from previous doctor visits...why not just go on the diet? You've already had a positive bloodtest and going back on gluten has gotten you sick again so I'd say just get on the diet and be healthy. :)

Guest nini
Guest nini
Posted

I agree with what Rachel said... ditto

chrissy Collaborator
chrissy
Posted

i have 3 kids with celiac. two did not show damage with their biopsies, and the 3rd did not even have a biopsy.

christine

kari Apprentice
kari
Posted
  • Author
i have 3 kids with celiac. two did not show damage with their biopsies, and the 3rd did not even have a biopsy.

christine

that kind of ties back to my question though - how do you know that they all have celiac disease? did the doctor say that they definitely have it? the reason i'm looking for second opinions with me is because my doctor told me after my bloodwork that i had the antibody for celiac disease and that that was probably the reason for my problems. they did the endoscopy, etc. and on the follow-up apptmt they said no, i do not have it because they didn't find any 'sprues'? So my question was basically whether (and how) i should get a second opinion as to whether I have the actual disease, because, being a college student and all, eating as healthfully as I do is really expensive in the first place, but a gluten free diet would be way more expensive and I can't really afford it unless a definite diagnosis says I have this disease, and this is what I can and can not eat. Otherwise, I'm back to the beginning again...

Guest nini
Guest nini
Posted

Kari, the diet does not have to be expensive. It's only expensive if you are trying to replace all of your gluten foods.

The Celiac Dr. that spoke at our support group meeting said that technically Celiac is the blunting of the villi, but if you have the positive antibodies, assuming they did the EMA and tTg, then you've got Celiac. The biopsy can only confirm a dx of Celiac. it cannot rule it out if it is negative. There is always the chance that the biopsy can miss damage, or you haven't been consuming enough gluten for damage to be visible (may be very sporadic) or may be in early stages of Celiac, which many of the experts are still not in agreement as to at what point does it go from gluten intolerance to celiac.

Ultimately the BEST diagnostic tool is dietary response. How does your body respond on the gluten free diet? If your health begins to improve you are most Definitely gluten intolerant. And in my book, gluten intolerance is the same thing as Celiac. The treatment is the same.

chrissy Collaborator
chrissy
Posted

my children had raised tissue transglutaminase levels. tTg is pretty specific for celiac disease. according to the test my children had done, .7 is normal. one of my kids had a level of 18.?? and another had a level of 22.?? i don't know the other one's level. get a copy of your blood test so you can tell what test was actually done by your doctor. and endoscope can only get into the small intestine about 6 ft. that leaves a whole lot of intestine that they can't reach to biopsy, and celiac can be patchy.

christine

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kari Apprentice
kari
Posted
  • Author
my children had raised tissue transglutaminase levels. tTg is pretty specific for celiac disease. according to the test my children had done, .7 is normal. one of my kids had a level of 18.?? and another had a level of 22.?? i don't know the other one's level. get a copy of your blood test so you can tell what test was actually done by your doctor. and endoscope can only get into the small intestine about 6 ft. that leaves a whole lot of intestine that they can't reach to biopsy, and celiac can be patchy.

christine

all new things that i hadn't heard before - seems when you go to the doctor these days, they're in such a hurry and they barely give you the chance to ask questions, let alone answer them for you. thank you for the responses, i guess i'll continue to do my research. I think maybe part of the reason I was getting so sick sometimes is because I'm also a vegetarian. I'm not hugely strict about it, I just don't like meat at all, so I don't eat any of it and never have, but I still eat dairy, eggs, etc. so my diet was always basically all fruits, vegetables, and grains, though I noticed that even something as simple as switching from my every day dinner of vegetables with pasta over to vegetables with rice made a huge difference in my energy level. So I guess I'll just try to substitute rice and rice products in place of the bread products I was eating?

Guest nini
Guest nini
Posted

stick with fresh fruits and veggies, potatoes and rice... corn chips, corn thins, rice cakes, nuts, and alternative grains like quinoa, and sorghum. There is so much you can do with these basics... Are you lacto ovo vegetarian or vegan? If you eat dairy and eggs that opens up a whole bunch of other options, but if you don't eat dairy and eggs that is ok too... there are ways! For the longest time when I was a poor massage therapy student, I lived on rice and beans (dried beans at that!) and popcorn! (and I wasn't even gluten-free then) Add some spinach and other veggies to that and you've got a fairly well rounded diet. I'm sure other's on this forum have some great ideas for vegetarian meals that are gluten-free on a budget!

CMCM Rising Star
CMCM
Posted
Hello - I am a college student and last year I had issues with ongoing fatigue and general upset stomach, etc. I was also very iron deficient as well as deficient in many other vitamins even though I have always been very conscious to eat a lot of vegetables and to eat healthfully. Also, in the midst of this ongoing health kick, I had been paying attention to eating a lot of whole weat and grains, something in retrospect I realized I never mentioned to my doctors. The school health office refered me to a G.I. specialist, who told me that I did have the antibody for Celiac disease. We then scheduled the endoscopy and small bowel biopsy, which was a month or two off, and in the meantime, I consciously and unconsciously cut back a lot on eating obvious sources of wheat, mostly because it seemed silly to eat a lot of wheat when it was possible that I was allergic to it. Once the results from the biopsy came back, I was told that I did not, in fact, have Celiac disease, even though through casual conversation with nurses I know and with people who have Celiac disease, I had heard that if you have the antibody for it, then you definitely have the disease.

Now it is about a year later, and I have been eating healthfully, including eating wheat, since I was told I had no allergy to it, and I am having the same debillatating symptoms of extreme fatigue and stomach upset and cramping. Being a student, I also have thousands of dollars of medical debt from all the doctors I went to last year, and can't afford to go back.

My question is, if there are any doctors who read this post - is it possible for me to actually have celiac disease, even though the biopsies didn't show anything, since I did have the antibody? Is there a simple test I can go to a primary care physician and ask for without going through the whole expensive process again with a rushed G.I. specialist?

Thank you

Kari....While a doctor goes to medical school and learns a little about a lot of things, no doctor knows about ALL things. Therefore, be wary of any doctor who tells you you do not have celiac despite having the antibodies. Do lots of your own research....for about $30 you can get 3 very good books on celiac from Amazon: Dangerous Grains, Against the Grain, and Wheat Free Worry Free. All very very informative about celiac and gluten in general. Wheat Free Worry Free has a chapter written by a doctor (who now specializes in celiac) explaining why doctors rarely diagnose celiac correctly. Very enlightening reading, to say the least.

I had a blood test for celiac about 5 years ago....came out fine. I got the test because my mom is a diagnosed celiac, and I had been having all sorts of digestive symptoms forever. So I thought I'd get checked out, it was negative (although I've been told it was an incomplete test...didn't test for enough things), and for 5 more years I ate wheat moderately all while having more and more symptoms. After I found this site in November, and learned about Enterolab's stool testing method of diagnosing, it all made great sense and I decided it was worth it to spend $350 for their full panel, which included a casein test and a gene test. The results didn't surpise me, really. I had the celiac gene plus a gluten sensitivity gene, sensitivity to casein, and antibody reactions onthe tga and ttg tests. So now I know, and I found out all on my own with no doctor involvement. Why pay them for tests that are often inconclusive? Beyond finding out, the solution is to not eat gluten.

For yourself, if you don't want to do the full panel, you could do the gene test of $149 and find out about that. And most important of all, do the diet very seriously for a month and see how you feel. The diet is the real way to find out. And there is no danger at all to doing the diet, either....unlike taking drugs for a condition would be. Actually, eating the gluten free diet is a very healthy thing to do!

kari Apprentice
kari
Posted
  • Author

I keep coming up with more questions, questions, questions.... everything you all have said has made sense - now - since I have not had an official medical diagnosis anywhere in my records, and I don't even have a regular primary care physician that I have seen for long and know well - when I go to doctors, fill prescriptions, etc. etc., when they ask about medical history and if you have any allergies to any medications, etc., what do I tell them? I don't want to sound like some self-diagnosing hypochondriac, but I do have regular meds (for ADD etc) that I take on a regular basis and when they ask if I have allergies, I say no. Usually when I see a new doctor they ask if I have any allergies, I say no. What would be the appropriate response and how would I deal with it?

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