Had The Blood Test, Biopsy Next

[the57motz]

Hello I've lurked on your board a few weeks, so I'm new here.

Celiac Disease runs in my family- My mom had it from childhood, and generally only avoided gluten when she got sick even then would eat it anyway. In the end years of her life she had osteoporosis (lost 5 in in height) scoliosis and severe degenerative arthritis of the spine. the osteoporosis, and arthritis i believe were purely caused by her celiac disease.

I never realized that this was hereditary until recently for various reasons I started researching it. I believe that it's almost a given that my grandfather (mom's dad) had celiac also.

I went to the Digestive clinic doctor- had the blood test done. it's funny because i generally do not eat large amounts of bread, pasta etc. that is pertinent, but i'll try not to ramble. anyway- i was negative for 4 out of the 5 antibodies- one was positive the doctor told me she was almost ready to not test for the one i was positive on because people seemed to get false results. she also said that the false results were usually 30 or so.

Mine were 99. we discussed it- and both decided that i needed to have the biopsy done to be sure.

I was diagnosed with irritable bowel disease or spastic colon in my teens. that diagnosis was pretty much by ruling out everything else. the thing that most fascinated me in my research- was the rash that often comes with celiac disease because also in my teens i had this horrible blistery rash that ITCHED MY GOD IT ITCHED!!! like nothing else i have EVER dealt with. it itched so badly at night it would wake me up. I also had low blood pressure. (those are the high points)

I started this research because (funny enough) after a week of eating more sandwiches than I have in years in the same week- i was belching, gassy, and having severe diarhea. a coworker said to me " don't you think you need to look into this?" i realized that she was right. then i realized that the most symptom free period in my life was when i was living in miami, and eating mainly stir fries, rice, potatoes- i realized i ate ALMOST NO GLUTEN. i realized that week that i was so so sick- i'd eaten a tremendous amount. so i went gluten free (even stopped beer geez that was hard, i do love my beer i will admit) within 48 hrs the difference for me incredible. i felt so much better. after 4-5 days- i ate some gluten. got symptoms again (diarhea, indigestion, bloating, gas on both ends) the doctor told me for the test i needed to eat a normal diet- incorporate gluten in again to make sure the test was accurate - asked me to do this for 2 weeks. i lasted about 1 week and a half before i was getting so sick that i was afraid i was halfway there to a colitis attack. (coppery mucus, stomach cramps and almost dysenteric diahrea at this point)

anyway- i hope y'all don't mind the descriptions of symptoms here- again my test results (i think doc said it was the iga test) were 99.

i'd welcome any comments. thank you for this forum!

[plantime]

If you are still on gluten, go ahead and get the biopsy. Keep in mind that if the doc just takes random samples, and does not get one from a damaged area, you will get a false negative. You also might not have enough damage to show up on a biopsy. It does sound like you have positive improvement from doing the diet, which I think is a test in itself. Did you have the gene test done? It is genetic, and if your mom had it, there is a good chance that you have it.

[tanyaj58]

Hi there-u poor thing! Reminds me of my childhood when I was in hospital for 3 months before they finally diagnosed me! My parents and doc'.s. were actually preparing for my death-I was soooo ill and they didn't know what the hell it was! I was down to 40 lbs. . Thank goodness they finally figured it out!

I'd say go with the biopsy for SURE-it doesn't hurt and they can tell what the lining of your stomach is up to, and whether it's celiac disease for SURE, although, I think we all know it certainly sounds like it!

Funny how yours was genetic...I had only a distant 2nd cousin of my Mom's (so, third cousin of mine?) that has it, and so does her daughter, but that was it!

When I was at a National Canadian meeting of celiac patients a few years ago, I asked the entire room of 500 persons to raise their hands if they also were a diabetic. Approx. HALF of that room raised their hands, and I found that unbelievable! I was diagnosed with diabetes at 9 yrs. of age, and celiac at 10 yrs. of age. I most certainly feel there is something in the immune system that makes a lot of diabetics get celiac disease, AND vice-versa. Weird, isn't it, what our bodies and immune system can do to us?

Thanks, this is my first posting EVER on this board-I just joined! Later...

Tanya : )

[lcmcafee2]

My doctor told me he thinks I have Celiac Disease. Five years ago I had a colonoscopy and the biopsies came back with microscopic colitis. With the symptoms being cronic diarrhea (I thought that was just normal for me), back ache, mucus stools, bloating etc... I just made sure I KNEW where the restrooms were in every building I went into and put up with it. Have been diagnosed with IBS in the past as well. Then the doctor told me he needed to do another colonoscopy and I left. Five years later I have HAD enough of the symptoms and went back to him. Had another colonoscopy, and a blood test. The blood test came positive for celiac disease, but the scope came back as inconclusive. Didn't even show up the Colitis this time!? The doctor then did a endoscope and it too came back inconclusive. Over time I have had gall bladder scans, ultrasounds of the abd., and a CT scan of the abd. and pelvis. All coming back as inconclusive. In November, after the endoscope the doctor told me to go gluten-free. I tried and it was not so successful as gluten is in so much ..... I was sent to another "specialist" he wants to do the capsule endoscopy (Anyone ever had that). They want me to continue the gluten-free diet which I REALLY have been for the last 3-4 weeks. The diarrhea is off and on now, but I still have fatigue. Any suggestions on what is next? I am beginning to wonder if missing out on the foods I really liked is the answer to the problems ....... or is this just part of the process of Celiac Disease?

Laura

[celiac3270]

A few things:

- It's completely worth it. It took me a year to feel healthy, but I've never felt this good in my life. I'm gaining weight, and not having the symptoms of vomiting, abdominal cramping, diarrhea, gas, bloating, etc. Additionally, if you do in fact have celiac and do not follow the diet, you could face severe consequences: osteoporosis, cancers, development of type 1 diabetes-- to name a few.

- The capsule endoscopy is a new development...so most of us will only have had the traditional endoscopy done. If the capsule endoscopy works the same way, though, you'll need to return to gluten numerous weeks before the endoscopy, so as to get accurate results (otherwise they will automatically some back negative).

[the57motz]

Thanks everyone- and best of luck to anyone that is about to be tested, or start the gluten-free diet.

I believe that I'm actually going to get the capsule endoscopy. The doctor asked me if i was going to be gluten free before the test and i said yes. I'm guessing because she asked me first, that she will make sure that the pathologist gears his results towards that?

Does anyone know about the capsule endoscopy? I read an article about the biopsy that scared the CRAP out of me. (sorry...that was a pun of sorts) the rare but possible side effects {{{shudder}} is it the same with the capsule test?

no, i've not had the genetic test- i'm going to though. i saw a link to that endolabs (spelling not right) web site- and I'm going to go for it. I want to establish either that I have the disease, or that the gene runs in the family because of an article I read a week or so ago. It said that adolescents with undiagnosed celiac disease, even asymptomatic ones had the possiblity of having low bone density because it's possible that they may not be absorbing calcium. I have a beautiful 13 yr old niece that I want tested. I told my sister in law, albeit by email and never got a response. When i told my brother about it (he is a nurse believe it or not) he asked how it went but eventuall all but laughed at me. If i can prove this runs in the family, I'm thinking I can force the issue. At least pay for that genetic test or the entolabs kit.