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Diagnoised Celiac But With No Biopsy


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36 replies to this topic

#31 gf4life

 
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Posted 22 January 2004 - 08:49 AM

Thank you Sarah, it sure helps to have all these other people to share expereinces with.

celiacfreeman, I agree with you. I think it is important to have the colonoscopy as well. I had one in November, and I had some inflammation, but no polyps or anything. I think the inflammation was due to the gluten and the casein, which I had just found out I was sensitive to, so I hope it is not a problem. My son's doctor wants me to reconsider being further tested for IBD(inflammatory bowel disease), since he is concerned about the joint pain in both my son and myself.

A sort of strange thing happened when I went for my EGD the other day. I was there for an "Upper Endoscopy", and the paperwork they were having me sign said I was having a colonoscopy! She says to look over it and see if everything is correct. I read the first line and said, nope. She thought my name was wrong, and I said, no I'm not here for a colonoscopy. I had that done a few months ago. So they had to go change the paperwork. It's a good thing I got there early! Then when I got in the room, the computer said I was a 60 year old man named Ronnie! I don't think so. I was wondering if this was a good place to be having the procedure done!

Then I have this really strange memory. Now I'm all drugged up on Demerol and Versed, and the doctor insists on talking to me as soon as the procedure is done. I'm not sure if I am remembering correctly, or if it was a dream, but this is what I remember. The doctor says, "Well you have a hiatal hernia, but you knew that , right?" I said, "no." (Now I didn't have one a year ago when the first doctor did the EGD, but didn't do a biopsy!) Then she says,"oh, well I took lots of biopsies." I said, "good." Now I am wondering if the conversation even happened, and I have to wait three weeks to see her again. As I'm leaving she(the doctor, who was busy talking to another patient's family, and I wasn't going to wait for her) asks if I am okay. I say yeah and she says to the nurse who is helping me out that she wants to see me in two weeks. The nurse says that she will have someone make me an appointment. Well I'm not going to leave it up to these people who can't even figure out what test I'm there for, so I called yesterday to make sure that an appointment was made. The scheduling nurse, says that no appointment had been made, but that she was going to make it. She had my name down on a list, but the doctor told her that I needed to be seen in a month! So she compromised with me and made it for three weeks. I am really sick of these guys!

Well thanks for listening to me rant about my experience.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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#32 wildones

 
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Posted 14 April 2004 - 05:17 AM

Aldo
I have wondered the same thing, many times when I have read postings here. My son, who was the first to be diagnosed in our family, had false negative blood tests (the older, less effective in diagnosing ones) and never had anything suggestive of celiac show up on quite a few biopsies, until his last one. He has short bowel syndrome (had 70% of his small intestines, his ileocecal valve and part of his colon removed as a newborn) and so he had a lot of testing done for related issues. He had a repeat biopsy that confirmed that the damage had healed. My other son was diagnosed, as I was through the newer blood tests.
Why in the world would you back on a gluten containing diet to confirm what you already know, cause a huge setback and potentially cause damge to yourself. A blood test is enough to confirm a diagnosis. Sometimes an endoscopy is done to investigate the extent of the damage, but it is not necesary to confirm celiac. If you are still having symptoms after a reasonable period of time on a totally (not partially) gluten free diet, then probably a GI dr would want to investigate with a colonoscopy and an endoscopy, to see if you have secondary or compounding issues.
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#33 dotandevan

 
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Posted 14 May 2004 - 08:57 AM

This is in response to Sarah's posting regarding grandparent compliance without diagnosis. I have a very similar problem. My 11 month old son gets horrible diarrhea from gluten and is doing fine now that I don't feed him gluten ( Not too hard since I am generally the one feeding him). I just mentioned this problem to his doctor and she rec. gliadin IgG and IgA and tissue transglutinase antibody IgA. I took him to get his blood drawn but they tried unsuccessfully to draw blood from his pudgey arm. I know a blood draw is not an invasive procedure, but it was still stressful to Evan to be restrained and poked and surrounded by strange people. Should I try again to get his blood drawn? Is there any point since he has no issues as long as he is gluten free? There is a very selfish part of me that wants a medical diagnosis so friends/relatives will take me seriously when I say he can't have wheat ( I haven't began trying to explain gluten, but wouldn't you think people would know that pizza crust or crackers contain wheat?). Any advice would be greatly appreciated.
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#34 trishz5

 
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Posted 14 May 2004 - 10:20 AM

I understand what you are saying about going on the diet even without firm confirmation, but what do you do in the case of a child too small to tell. My child, now three had a viral illness that resulted in three months of diarrhea when he was 2 years old. He had many tests to determine the reasons behind the diarrhea and all came back negative. I eventually asked about the possibility of GSE or celiac disease. We had the blood test done and it was negative. My doctor did not think a biopsy was indicated. However the diarrhea was not resolving. I put my son on a gluten-free diet (lets say no obvious sources of gluten) and added pro biotic to his meals. Within 2 weeks the diarrhea stopped. However he remains sensitive to dairy (he gets a mild rash on his trunk with milk) but can tolerate small amounts of cheese and yogurt. I only kept him on the diet three weeks and as per my doctor slowly added back grains. He appears to do fine on a "normal" diet.
However
He has a big belly and seems to get a lot of colds, and recently had tubes put in his ears. and all of those theings are normal for his age and the fact this is his first year in daycare.
Am I reading too much into that one incident with concern towards the future?
No one else in my family has any problems but my husbands parents are from Italy and have had colon cancer and bowel problems (no diagnosis of celiac but I don't think they were ever tested) and are both under 5' tall.
I am a dietitian and sometimes think that because I am so familiar with certain nutritional diseases I may be reading too much into the situation.


Do I possibly unneccessarily put him on a gluten free diet or possibily unnecessarily subjuct him to a biopsy that may not show any damage even if he has celiac.
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#35 amfcsg

 
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Posted 22 November 2004 - 03:59 PM

I've been reading everyone's story about how they were diagnosed. I recently had a blood test for celiac that was inconclusive. The doctor said I had a deficency in some antibody and that would show a negative result even if i was celiac. I'm now scheduled for a biopsy as well as a colonoscopy. I'm very nervous about both procedures. Any words of advice would be appreciated

Marilyn
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#36 gf4life

 
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Posted 22 November 2004 - 05:25 PM

Marilyn, I had a much easier time with the biopsy, than with the colonoscopy. Both procedures were fairly easy, but the prep kit for the colonoscopy made me very ill. For me it was the Fleet Phoso-soda drink. It is a laxative with a lot of sodium (6000mg per serving!) and it really bothered me. I threw up for days after the procedure and I still can't drink ANY form of liquid that is salty.

I would guess that the deficiency your doctor is talking about is IgA deficiency. That would be Immunoglobulin A and it would result in your testing false negative on the Celiac tests, since almost all of them are based on testing the levels of antibodies to gluten in the IgA. Here is a really good informative link to IgA deficiency.
http://www.vaccinati...ADeficiency.htm

I hope you are able to find out if gluten in one of the problems with your health.

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

#37 Rikki Tikki

 
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Posted 22 November 2004 - 05:50 PM

Hi Weebits

I would go ahead and have the biopsy done to see if you have flattening of the villi. The only concern that I can see is that if you are gluten free for a while before you have the test the villi may heal depending on how severe it is.
The thing about the coloncospy is that my dr. did it and I am glad he did. He removed three pre-cancerous lesions so I would also have that done.
Just a suggestion, take care
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice




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