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I Ate Chicken Nuggets After Talking To My New Doc -- Hellp!

chgomom

By chgomom
in Coping with Celiac Disease

Recommended Posts

chgomom Enthusiast
chgomom
Posted

Uggghhh well I got in with one of the best docs in the country.

Who specializes in celiac disease and reseach.

She has me faxing over some labs another doc did tomorrow....and she explained why I must have a biopsy.

She said to put it bluntly....it could be any number of equally bad things. She said....renal, autoimmune liver disorders...and even something as serious as multiple myleoma(sp) can cause elevated levels....

Sooooo...I had chicken nuggets...and I have to start eating gluten, I WILL NOT EAT BREAK it makes me violently ill....I will not go hog wild....but I have to add it regualrly into my diet till my appt in a month.

I did nto get a reaction from the nuggets...but she said that means nothing....and that I don't always have to get a reaction....but roughing up my villi....are necessary for the biopsy

So anyway....I trust her....I just can't get over this....any suggestions for a challange diet????

Can high levels of inflammation and IGA and garbage really be all that equally awful stuff...???

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eKatherine Apprentice
eKatherine
Posted
Uggghhh well I got in with one of the best docs in the country.

Who specializes in celiac disease and reseach.

She has me faxing over some labs another doc did tomorrow....and she explained why I must have a biopsy.

She said to put it bluntly....it could be any number of equally bad things. She said....renal, autoimmune liver disorders...and even something as serious as multiple myleoma(sp) can cause elevated levels....

Sooooo...I had chicken nuggets...and I have to start eating gluten, I WILL NOT EAT BREAK it makes me violently ill....I will not go hog wild....but I have to add it regualrly into my diet till my appt in a month.

I did nto get a reaction from the nuggets...but she said that means nothing....and that I don't always have to get a reaction....but roughing up my villi....are necessary for the biopsy

So anyway....I trust her....I just can't get over this....any suggestions for a challange diet????

Can high levels of inflammation and IGA and garbage really be all that equally awful stuff...???

What sort of test results have you had so far that caused you to be referred to a celiac specialist?

CarlaB Enthusiast
CarlaB
Posted

I did a six week gluten challenge ... it's not long enough, mine was negative after all that suffering. Dr. Greene, the celiac expert, says 4 months, minimum four slices of bread per day!!!! I am not willing to do that, so I guess I'll never know for sure. I think gluten challenges are not the way to do it ... they wouldn't have you smoke to see if you're susceptible to emphysema.

I wish you luck.

chgomom Enthusiast
chgomom
Posted
  • Author

MY IGA, TTG, CRP, and complement levels were all off the charts.

I also had a CT scna that showed intentinal damage that they coined "severe colitis"

gfp Enthusiast
gfp
Posted
Uggghhh well I got in with one of the best docs in the country.

Who specializes in celiac disease and reseach.

She has me faxing over some labs another doc did tomorrow....and she explained why I must have a biopsy.

She said to put it bluntly....it could be any number of equally bad things. She said....renal, autoimmune liver disorders...and even something as serious as multiple myleoma(sp) can cause elevated levels....

Sooooo...I had chicken nuggets...and I have to start eating gluten, I WILL NOT EAT BREAK it makes me violently ill....I will not go hog wild....but I have to add it regualrly into my diet till my appt in a month.

I did nto get a reaction from the nuggets...but she said that means nothing....and that I don't always have to get a reaction....but roughing up my villi....are necessary for the biopsy

So anyway....I trust her....I just can't get over this....any suggestions for a challange diet????

Can high levels of inflammation and IGA and garbage really be all that equally awful stuff...???

More importantly does a positive biopsy rule out any of that awful stuff?

Who specializes in celiac disease and reseach.

Much as I am for a greater understanding of the disease ... are you sure your not being used as a guinea pig?

CarlaB Enthusiast
CarlaB
Posted
are you sure your not being used as a guinea pig?

This was my thought, I was just not bold enough to say it. Seems like she's trying to scare you into the tests for her benefit not yours.

chgomom Enthusiast
chgomom
Posted
  • Author
This was my thought, I was just not bold enough to say it. Seems like she's trying to scare you into the tests for her benefit not yours.

Why would it be a guinea pig, evrything I have read says the biopsy is the final diagnosis.

Then I looked up this stuff, and if you "google: "high IGA" the first thing that comes up is multiple myleoma....

Um, then again when I come in for my appt I can always say people are considered celiac with out a biopsy....can't we test to rule out those other things first....

I'm just freaking out...I have eaten cereal now and chick nuggets and I am feeling looney toons

By the way this doctor is a GI specialist and first and foremost a GI doc, ut her specialty is trating Celiac disease.

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CarlaB Enthusiast
CarlaB
Posted
Um, then again when I come in for my appt I can always say people are considered celiac with out a biopsy....can't we test to rule out those other things first....

I did a gluten challenge ... I would do anything to avoid it!! I am not biopsy proven ... biopsies can only prove you have it, not that you don't have it. So, if it is negative, then what?

I think it's good that you are trying to educate yourself about it.

gfp Enthusiast
gfp
Posted
Why would it be a guinea pig, ............Then I looked up this stuff, and if you "google: "high IGA" the first thing that comes up is multiple myleoma....

Well if the MD really thinks you might have multiple myleoma then they would be testing for it and an intestinal biopsy cannot in ANY way test for mylenomo which affects bone tissue....

Secondly they would specifically test for Beta 2 microglobulin, albumin absense and perhaps a bone marrow biopsy from your hipbone. If they even suspect this they should at least be checking for it... because MM is very serious and very rapid..... so they wouldn't be telling you to come back in a month after eating gluten!!!!

Thirdly they would schedule xray or preferably a MRI.... preferably before taking a biopsy sample of bone.

evrything I have read says the biopsy is the final diagnosis.

Um, then again when I come in for my appt I can always say people are considered celiac with out a biopsy....can't we test to rule out those other things first....

I'm just freaking out...I have eaten cereal now and chick nuggets and I am feeling looney toons

By the way this doctor is a GI specialist and first and foremost a GI doc, ut her specialty is trating Celiac disease.

Glad to hear she's not a cancer specialist then.... It took me 5 mins to find the diagnostic tests for MM.

Open Original Shared Link

Remember this is UK... so MRI's are frowned upon if Xray's will do because of the cost to the national health service....

I can give you references to probably 50 medical papers that all say biopsy is not...but first

CALM YOUR NERVES... read up on diagnostic of MM. What you have is an indicator.... something that might lead to other tests if IgG elevation can't be explained....

You already said you feel ill on gluten... you already know you react to it... the chances of it being something else are miniscule.... some of these tests are VERY cheap like albumin ... it would be absolutely gross negligence to send you away for a month eating gluten instead of testing.... because all the biopsy can do is RECONFIRM celaic... it CANNOT diagnose MM.

Start here: Open Original Shared Link

chgomom Enthusiast
chgomom
Posted
  • Author

I think peopel are really over stating things when they aren't docs.

I really take to hear the advice about peoples personal experience.

I have had every lab under the sun. I have elevated proteins, ALT and liver enzymes...not in the thousands but elevated. I have had a CT scan that shows intestinal damage and I have a fmaily history of auto immune disorders. I am well aware of the test involved, as I have one general practitioner in the family, and one nurse.

They ust like the GI doc, believe it is celiac but they have to do every investigation if one thing is questionable because to not do so, and then have me end up with something else would be gross neglience.

Now...all I am sayijng is my doc has me doing a gluten challange....I feel sick already....yes I whole heartedly beleive it is celiac and if the biopsy was negative and they said its not I would laugh at them.

Right now my stomach is in knots...after the lucky charms.....its been atleast 4 mos now....

Sheesh...I should have something good like ice cream or mc donalds french fries if I am doing this.

I just want personal experience with a challange....foods....things people went thorugh and if they know of any of the things the doc was mentioning.

Not basically calling me an idiot or questioning someone who treats adults and children who frankly is one of only two doctors who listened when I was screaming at everyone saying I don't feel well. Before this doc and another everyone said ohhhhh add fiber, eat better, lose weight...and the more whole wheat I added...the more whole grains....the sicker and sicker I got and they said nothing was wrong.

Till I fired my doc...referred myself out to a specialist who ran all sorts of tests...celiac panel being one of them and it came back positive...

gfp Enthusiast
gfp
Posted
I think peopel are really over stating things when they aren't docs.

I don't think you need to be a doc to say that the biopsy can't do anything but confirm celiac disease.

What I'm saying is that waiting a month (which in itself may not be long enough for a postive biopsy anyway) {According to the medical papers I linked to not my opinion} in order to rule out or rule in celiac doesn't make sense.

I really take to hear the advice about peoples personal experience.

They ust like the GI doc, believe it is celiac but they have to do every investigation if one thing is questionable because to not do so, and then have me end up with something else would be gross neglience.

Yes but to not test for something else in order to do an inconclusive test for celiac (biopsy after 1 month gluten challenge) is gross negligence especially when that thing is something far more serious than celiac disease.

Now...all I am sayijng is my doc has me doing a gluten challange....I feel sick already....yes I whole heartedly beleive it is celiac and if the biopsy was negative and they said its not I would laugh at them.

Right now my stomach is in knots...after the lucky charms.....its been atleast 4 mos now....

Sheesh...I should have something good like ice cream or mc donalds french fries if I am doing this.

I just want personal experience with a challange....foods....things people went thorugh and if they know of any of the things the doc was mentioning.

Not basically calling me an idiot or questioning someone who treats adults and children who frankly is one of only two doctors who listened when I was screaming at everyone saying I don't feel well. Before this doc and another everyone said ohhhhh add fiber, eat better, lose weight...and the more whole wheat I added...the more whole grains....the sicker and sicker I got and they said nothing was wrong.

Noone called you an idiot. If a MD tells you you might possibly very small chance have cancer its understandably worrying. I've been through the whole cancer worry myself before I was diagnosed. My take is you mention it so its worrying you... its only natural to try and set your mind at rest.

Many MD,s, especially world experts in celiac (follow the links) do not think the biopsy is a golden standard. I'm not saying don't do it but your words were

Then I looked up this stuff, and if you "google: "high IGA" the first thing that comes up is multiple myleoma....

this followed

She has me faxing over some labs another doc did tomorrow....and she explained why I must have a biopsy.

She said to put it bluntly....it could be any number of equally bad things. She said....renal, autoimmune liver disorders...and even something as serious as multiple myleoma(sp) can cause elevated levels....

I'm not a MD but I do know that just because something comes up as #1 in a google search doesn't mean its more likely... I mean you could list loads of celiac symptoms and not get a hit on page 1.

This is really just two seperate issues....

1) Try not to worry about specuative things.. it can't help and can hurt. This is not saying I think your an idiot, I think your human and its natural you would worry.

2) The biopsy and gold standard.

I can point you to many many cases in medical sites where biopsy has not proven celiac in one go.... and you can also see many examples on the members here.

Personal experience

My personal experience is being very ill for a long time and not knowing what is wrong is its easy to be browbeaten when you have been submitted to a whole battery of tests all inconclusive and you should read both sides before deciding.

Having MD's in the family will help because there are hundreds of papers many very technical on pros and cons of biopsy.

sorry if I offended you, that wasn't the intention.

ravenwoodglass Mentor
ravenwoodglass
Posted

I won't add my opinion on challenges, for one thing I don't think I'll need to when you find out what my reaction was. I was feeling better gluten-free after years of very serious and painful illness but my GI insisted we do a challenge and a biopsy to prove it and rule out other stuff. I was so sick from the challenge that when the time came to go to the appointment I was on the bathroom floor bleeding from my butt. I didn't make it to the biopsy, needless to say, and came close to needing hospitalization from the challenge.

I don't disagree with her wanting to do the endo to make sure nothing else is going on but your reaction to the challenge itself will really tell you for sure. I would drop the challenge as soon as you react but if your still worried about the other stuff have the tests to set your mind at ease.

penguin Community Regular
penguin
Posted

I did a challenge, 3 months, loads of gluten everyday for a biopsy. I have no doubt in my mind that celiac is the problem (and neither do my doctors), but I had the biopsy to see if I was doing damage and to rule out anything else. EGD's aren't only for celiac biopsies. My doctor advised being gluten-free anyway since I have a positive dietary response. It's a personal decision everyone has to make and I did the challenge and had the biopsy even though everyone on here told me not to and I'm glad I did, even though it came back normal (some irritation on the SI), and I was sick for 3 months.

What you do with your body is your business...good luck, and I hope it's not too terrible! :)

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