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Update....... Confused More Than Ever


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14 replies to this topic

#1 troykm

 
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Posted 18 July 2012 - 05:09 PM

Ok I am a person that needs yes or no. Either I have celilac or I don't. Lol

Today I went back to my specialist. My genetic test is still not back until tomorrow so still waiting for that one. My other blood work is great. Normal antibody test and all vitamin and mineral levels are great. So Dr Gi is still hesitant to say yes 100% to celiac. As I have been gluten free for 3 weeks now she said there is no point doing more biopsies now.

But because my initial biopsy was positive even though it was only a screening biopsy as opposed to a diagnostic biopsy (3 sections taken instead of 8) but all 3 sections showed villi damage and increase in those cells too. The lab said "indicative of but not diagnostic of partially treated celiac disease, recommend serological investigation". So because of that biopsy and the fact that after 3 weeks gluten free I'm feeling better and things are changing as one would expect if I were celiac, she wants me to stay gluten free and go back in 3 months for follow up and at that point she may want to do a gluten challenge for a month and then do more tests and biopsies then.

I need an answer.

If I had only negative blood work done and responded to gluten free ok could safely say it's just gluten intolerance. But because the biopsy picked up the damage, something is causing it!

Symptom relief so far:

Foggy brain almost gone
Sleeping better
More awake during the day
Sinus are clear for the first time I can ever remember
Post nasal drip is gone (this I have had since I was a child and it has never gone before)
Gerd is gone! No reflex, no burping, no food coming back up.
Bad breath during the day going. I used to be able to taste it.
Bloating receding
Stools changing towards solid but still tan colour and float.
Anxiety gone (normally in this situation I would be having panic attacks waiting for results)
Irritability going.
Brain working again. I am not fumbling for words anymore and I feel sharper.

My sister has just been diagnosed from the blood test her TTG WAS 300+ and the one that should be under 5 was 42. So family link is there.

I jjust don't know. I'm gonna stay on the diet and hope my genetic test lights up tomorrow but even then Dr won't say yes. :-(

Is it celiac or just gluten intolerance and something worse causing the damage?

I'm not lactose or fructose intolerant.

Help me lovely people :-)
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#2 tom

 
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Posted 18 July 2012 - 05:46 PM

Ok I am a person that needs yes or no. Either I have celiac or I don't. Lol

With a necessity for a yes/no, I'd be tempted to shift the question to "either I feel better gluten-free or I don't ".
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>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#3 troykm

 
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Posted 18 July 2012 - 06:25 PM

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.
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#4 Gemini

 
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Posted 19 July 2012 - 07:35 AM

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.



You had a positive biopsy, your sister is a diagnosed Celiac, and you have had a positive response to the diet....explain to me why this hasn't convinced you? You could keep eating gluten for another biopsy down the road but are you willing to trash your intestines completely and develop other AI diseases to convince your doctor to baptize you as an official Celiac?

Having negative blood work and a positive biopsy is all too common for a Celiac. It sounds like you are being swayed by a doctor who does not know how to diagnose Celiac Disease. From what you have described, you have Celiac. I hope you do the right thing and stay gluten free!
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#5 frieze

 
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Posted 19 July 2012 - 09:47 AM

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.

Don't think I have ever seen the term "screening" used with an endoscopy when biopsies have been done.
Either those specimens were positive or not. Sounds like an attempt at duplicate procedures to make money. Going gluten free and continuing to pursue other reasons for damage are not mutually exclusive.
See if you can get your specimens sent to another lab for rereading.
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#6 troykm

 
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Posted 19 July 2012 - 11:23 AM

You had a positive biopsy, your sister is a diagnosed Celiac, and you have had a positive response to the diet....explain to me why this hasn't convinced you? You could keep eating gluten for another biopsy down the road but are you willing to trash your intestines completely and develop other AI diseases to convince your doctor to baptize you as an official Celiac?

Having negative blood work and a positive biopsy is all too common for a Celiac. It sounds like you are being swayed by a doctor who does not know how to diagnose Celiac Disease. From what you have described, you have Celiac. I hope you do the right thing and stay gluten free!


Yes I know it sounds silly but after being misdiagnosed for so many years has made me question everything. I would love for this to be celiac because it would be easy to treat. But I just can't help thinking what if it's wrong and I'm missing something more serious. It's not a silly thought but i agree not helpful.

I'm staying gluten free. Thanks everyone for your answers :-)
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#7 kareng

 
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Posted 19 July 2012 - 12:12 PM

So...you had enough damage that they found it with only 3 biopsy samples? The reason 8-12 samples is recommended is because some people don't have enough damage to find it with only 3 samples.

I guess you can live in denial for a few more years. That denial can lead to the more serious issues you are looking for.

I know you don't want to have Celiac, none of us really do, but looks like that is what you have.
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#8 troykm

 
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Posted 19 July 2012 - 01:29 PM

I really want this to be celiac. But when the Dr says "this list of diseases can also cause villious atrophy" you start to wonder when the tests don't all point to yes.
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#9 eatmeat4good

 
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Posted 19 July 2012 - 08:13 PM

Here is the Yes/no for you.

Symptom relief so far:

Foggy brain almost gone- YES!
Sleeping better- YES!
More awake during the day- YES!
Sinus are clear for the first time I can ever remember- YES!
Post nasal drip is gone (this I have had since I was a child and it has never gone before)- YES!
Gerd is gone! No reflex, no burping, no food coming back up.- YES!
Bad breath during the day going. I used to be able to taste it. - YES!
Bloating receding- YES!
Stools changing towards solid but still tan colour and float.- YES!
Anxiety gone (normally in this situation I would be having panic attacks waiting for results)- YES!
Irritability going.-YES!
Brain working again. I am not fumbling for words anymore and I feel sharper.-YES!

My sister has just been diagnosed -YES!

Do positive biopsies diagnose Celiac? -YES!
Is it commonly known as the Gold Standard of diagnosing Celiac?- YES!

Is there any other disease that has all these symptoms AND they all go away when you go gluten free?-- NO!

Celiac?- YES!

I think you are diagnosed...
And I think any other Dr. than the one you have would say you are Celiac.
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#10 beebs

 
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Posted 19 July 2012 - 09:43 PM

What were the list of the other things that cause flattened villi? And are you experiencing any symptoms that sound similar to any of those things? Sounds like celiac to me, I'm not a doctor obviously.
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#11 GFinDC

 
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Posted 20 July 2012 - 03:32 PM

Casein sensitive enteropathy and parasites are a couple of other villi flatteners' But neither should improve because of a gluten-free diet.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 nvsmom

 
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Posted 22 July 2012 - 09:05 AM

Casein sensitive enteropathy and parasites are a couple of other villi flatteners' But neither should improve because of a gluten-free diet.


This is a really good point! Other problems can cause villi flattening but your doctor wants you to go gluten-free to see if you feel better because he thinks it could be celiac. gluten-free diets only help celiacs so it sounds like you are in the process of confirming the diagnosis through diet... successfully. I guess that's the good and bad news all rolled into one, isn't it?

I believe I've seen stats stating somewhere between 20-30% of celiacs have negative blood tests, and their ceilac is only found through biopsy or vitamin deficiencies. It sounds like you fall into this group.

I hope you continue to improve on the diet. :)
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#13 MitziG

 
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Posted 26 July 2012 - 04:51 AM

Please give me your address so I can direct the skywriter to spell out YOU HAVE CELIAC.

Seriously....if you keep looking, you will find a reason to convince yourself that it isn't celiac. But it won't make it true.
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#14 troykm

 
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Posted 26 July 2012 - 01:15 PM

Please give me your address so I can direct the skywriter to spell out YOU HAVE CELIAC.

Seriously....if you keep looking, you will find a reason to convince yourself that it isn't celiac. But it won't make it true.


Thanks it's all good now :-) diagnosis is 100% celiac. No other health issues. Onwards and upwards from here
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#15 cavernio

 
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Posted 27 July 2012 - 04:10 AM

For what it's worth, most food intolerances are *only* diagnosed by 'Not eating it, I feel better, and when I try it again, I feel worse'. There just don't exist accurate enough tests to say otherwise. And I say this now because celiacs often have other food intolerances which we only figure out once we've been gluten free.

It's very frustrating not knowing 100% for things, but for the vast majority of medical diagnoses, 100% certainty is just an ideal we strive for.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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