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Rae

Endoscopy & Colonoscopy

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Hello Everyone

Yes I am a newbie. Last year I was diagnosed with IBS-C, then for the last few months my symptoms continue to get worse- bloating, constipation with bouts of diarrehia, adominal pain, and new symptoms such as depression, extreme fatigue, weakness, swollen lympnodes and muscle pain. In Oct (05) my doc requested that I do blood work to check for celiac- it came up positive! I then went gluten-free until now and I still feel like crap. He recently tested me for anemia and hypocyglemic (did not get results yet) and he gave me a B-12 shot. He then request that I get a endo/colonoscopy. So, I met with my Gastrologist today and she seemed very laxed on the whole situation. She said that maybe its not celiac disease and just IBS. I asked her if I should go off the gluten-free diet (and do a gluten-challenge)for the biopsy and She said no. She suggested that I stop all dairy products. She also checked me for some liver disease (through blood work)

I am somewhat an experimenter :lol: - I went gluten-free for a month and then ate some gluten and got REALLY sick, I mean I had to take off work 2 days to recover (just needed evidenace for gluten intolerance) Then I went back to gluten-free for a few weeks and tried a product (frito-lays totilla corn chips) that might be cross-contamination (to see my sensitivity to gluten) and within minutes of eating the chips my stomach bloated like I was 8 mo pregnant and I had adominal pain with naseau. I go for my scopys on 12/6.Could someone have positive blood work for celiac disease and negative scopy and still really have celiac? Could a biopsy be wrong? Anyone with similar situation? I am sorry if I sound like I want celiac disease, I dont, but I do want some doc to diagnose me something that can be somewhat fixable- (not like IBS where docs are like hey your on your own-b/c there is no cure whatsoever or one single diet that helps everyone). Thanks for listening

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Hello Everyone

I go for my scopys on 12/6.Could someone have positive blood work for celiac disease and negative scopy and still really have celiac? Could a biopsy be wrong? Anyone with similar situation? I am sorry if I sound like I want celiac disease, I dont, but I do want some doc to diagnose me something that can be somewhat fixable- (not like IBS where docs are like hey your on your own-b/c there is no cure whatsoever or one single diet that helps everyone). Thanks for listening

<{POST_SNAPBACK}>

You should get loads of responses to this. They will mostly agree I imagine.

I don't entirely trust blood tests. Too many variables - especially if the lab work is done locally where they don't know or see celiac very often.

I do believe that genetic testing or stool sample testing is more reliable.

You ask: Could someone have positive blood work for celiac disease and negative scopy and still really have celiac? Could a biopsy be wrong?

I would say yes. A biopsy only takes a small portion of a small portion of the intestine. Unless the entire intestine is damaged the damage can be missed. Your situation is not uncommon. Many celiacs do not have extensive intestinal damage though your symptoms would strongly suggest it.

I don't mind saying that I WANTED to have Celiac - it looked better to me than my alternatives.

I tested with genetics and came up negative. The search continues. Good luck. Claire

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I'm wondering (hope I'm not hijacking your post here!) why doctors recommend colonoscopy rather than endoscopy? My doc told me to get a colonoscopy and on that day gave me the results of my bloodwork. I went gluten-free that day... and because my bloodwork was SO positive, I didn't do the endoscopy. Wouldn't an endo be more diagnostic (biopsy) than a colonoscopy??

Not to mention... there's no prep for an endo ('cept nothing to eat/drink after a certain time) and a really awful prep for the colonoscopy!!

Plus... there's no way I'd gluten challenge for an endo now!!

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You may be sensitive to gluten AND casein - the milk protein. Cutting out all dairy - including the whey protein supplement I'd been taking - made a huge difference for me.

IMHO, it's ignorant for a doctor to tell you to eat gluten after your blood tests came back positive. The fact that you're not feeling markedly better just indicates there's something else in addition to gluten that's affecting you.

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IMO if your biopsy is negative it really doesnt mean anything as far as whether you have celiac disease or not. If its positive you have it for sure though. Biopsies arent completely reliable...they can easily miss damage. The fact that you've already started the diet makes it even more unlikely they'll find damage but it doesnt mean you dont have celiac disease.

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Well, it sounds like gluten causes you problems, regardless of the lab tests that the doctors ordered. Listen to your body! The dietary test you gave it was a valid one! I also second the suggestion of eliminating all dairy for two weeks to see if that helps.

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Hello Everyone

Yes I am a newbie. Last year I was diagnosed with IBS-C, then for the last few months my symptoms continue to get worse- bloating, constipation with bouts of diarrehia, adominal pain, and new symptoms such as depression, extreme fatigue, weakness, swollen lympnodes and muscle pain. In Oct (05) my doc requested that I do blood work to check for celiac- it came up positive! I then went gluten-free until now and I still feel like crap. He recently tested me for anemia and hypocyglemic (did not get results yet) and he gave me a B-12 shot. He then request that I get a endo/colonoscopy. So, I met with my Gastrologist today and she seemed very laxed on the whole situation. She said that maybe its not celiac disease and just IBS. I asked her if I should go off the gluten-free diet (and do a gluten-challenge)for the biopsy and She said no. She suggested that I stop all dairy products. She also checked me for some liver disease (through blood work)

I am somewhat an experimenter :lol: - I went gluten-free for a month and then ate some gluten and got REALLY sick, I mean I had to take off work 2 days to recover (just needed evidenace for gluten intolerance) Then I went back to gluten-free for a few weeks and tried a product (frito-lays totilla corn chips) that might be cross-contamination (to see my sensitivity to gluten) and within minutes of eating the chips my stomach bloated like  I was 8 mo pregnant and I had adominal pain with naseau. I go for my scopys on 12/6.Could someone have positive blood work for celiac disease and negative scopy and still really have celiac? Could a biopsy be wrong? Anyone with similar situation? I am sorry if I sound like I want celiac disease, I dont, but I do want some doc to diagnose me something that can be somewhat fixable- (not like IBS where docs are like hey your on your own-b/c there is no cure whatsoever or one single diet that helps everyone). Thanks for listening

<{POST_SNAPBACK}>

That GI is an absolute idiot. My opinion only. Your blood tests and your response to the diet are proof enough. Her insistance that you have IBS after your positive bloodwork is proof of that she knows nothing about celiac disease. She did give good advice about cutting out dairy though, many of us can not tolerate dairy until we have healed. What I would do, and I am certainly not an expert in anything other than pain :) is I would cut out the dairy and move the scopes back a couple months. Cutting out the dairy for a while may alleviate your symptoms and if it does you won't need to go through any more tests. I hope you get some relief soon and remember to check all your cosmetics, shampoos, lotions etc for gluten content.

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Thank you guys for all the replies! Still have another question, if i cut out the dairy then i look for say milk that is dairy and lactose free. What does casein have to do with dairy? I though casein had to do with eggs? Is there any other intolerances associated with celiac disease?

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Thank you guys for all the replies! Still have another question, if i cut out the dairy then i look for say milk that is dairy and lactose free. What does casein have to do with dairy? I though casein had to do with eggs? Is there any other intolerances associated with celiac disease?

<{POST_SNAPBACK}>

Hi - I am inviting myself to this discussion if you don't mine..

First of all there many 'milk' available: including soymilk, several varieties of nut milk and rice milk if you can locate one that is gluten free (some use barley in processing).

Casein is the milk protein - equivalent to the gluten portein of wheat. They are structurally all but identical and and to be on the safe side it is a good idea to remove this protein from the diet as well. Gluten-free Casein-free diets go back quite a ways - better to be safe than sorry.

Many celiacs do put dairy back in the diet after they have been gluten-free for awhile and can handle it a bit better. That is a personal choice, of course. I am in the 'don't do it' camp on that one. If you check out the concept of 'mimicry' related to autoimmune disease you will see why dairy products can be a threat to celiacs or others who have been encouraged to go gluten-free. Claire

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