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Help?! For Post-Diagnosis: Mayo Vs Columbia Vs Chicago, Etc. - How Do You Choose Which Specialist To Visit?

doctors celiac clinics specialists

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32 replies to this topic

#16 pricklypear1971

 
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Posted 20 February 2013 - 01:42 PM

And a combo of SIBO with another AI disease could account for elevated antibodies on one gluten blood test (sorry, brain is drawing blank...Ttg?).

But most likely, it's gluten. Somewhere.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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#17 designerstubble

 
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Posted 22 February 2013 - 05:26 PM

Well I learnt something new today. Diary can cause villi atrophy????

Shock horror!

Why does everything I've read say that dairy doesn't damage?!

And soy can cause atrophy too? I thought it was just an irritant?

Anyone got any links to read? Very interested to know more!
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#18 Bubba's Mom

 
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Posted 23 February 2013 - 06:04 AM

http://www.celiac.co...illi/Page1.html

There's an article here on this site's info pages that tells of other causes for villi flattening.  There are others too, that you can find if you type causes for villi flattening into the search box here.


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#19 designerstubble

 
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Posted 23 February 2013 - 06:35 PM

http://www.celiac.co...illi/Page1.html
There's an article here on this site's info pages that tells of other causes for villi flattening. There are others too, that you can find if you type causes for villi flattening into the search box here.

Thanks bubba!
This is very interesting. I feel so naive not knowing all of this. Everything I'd read up to now said that dairy didn't cause damage.

So... All of these extra things that cause villous atrophy,.... Do they also cause other symptoms too or can they also be latent or silent line celiac?
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#20 Bubba's Mom

 
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Posted 24 February 2013 - 06:54 AM

Thanks bubba!
This is very interesting. I feel so naive not knowing all of this. Everything I'd read up to now said that dairy didn't cause damage.

So... All of these extra things that cause villous atrophy,.... Do they also cause other symptoms too or can they also be latent or silent line celiac?

Once the villi start to erode you won't be absorbing nutrients.  Over time some symptoms should start to show because of that.  Also, the  hormone (cck) that tells your gallbladder to squeeze and pancreas to release digestive enzymes is made and sent from the small intestine.  With damage there that function doesn't work..or doesn't work well.  Other digestive enzymes like for digesting milk are made on the tips of the villi too, so if they're gone, you won't be able to digest milk properly. 

With severe villi flattening you might also get proteins leaking through the wall of the intestine causing food intolerances.

 

Your symptoms could be severe or latent.  Each person is different.  For example, you could have joint pain, but not noticeable digestive issues.  You could have mood swings, GERD, insomnia, anxiety, ect. depending on which vitamins/minerals you're able to absorb. It all depends on how much damage there is, if it's patchy or total, and for how long you've had the problem.

 

I think generally, when flattened villi are seen by an endoscope, it's assumed that it's celiac.  If a person goes gluten-free and their symptoms don't improve, they start looking at other causes.  Sometimes it's a combo of celiac and other intolerances, or yeast /bacterial overgrowth.


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#21 dilettantesteph

 
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Posted 24 February 2013 - 08:57 AM

Some celiacs such as my son and I react to even the proposed accepted levels.  In the study done which determined those levels to be safe, one participant had to be excluded because he reacted to those levels.  While they are safe for the vast majority of celiacs, they are not safe for absolutely all celiacs.  Some of us need to be on a diet of produce and unprocessed meats, and even be careful at that.  Since you have continued villous atrophy on the gluten-free diet, you are likely to also be in that category. 

 

I saw Dr. Green speak recently and he has nutritionists who will work with you to remove trace gluten from your diet when you are having these kinds of issues.

 

The other option, if you are symptomatic enough to be able to do this, is to keep a food/symptom journal.  Go on a very safe diet of produce and unprocessed meats until you have no symptoms.  Then try adding foods one per week.  It can take that long for a reaction to be noticed.  That will let you know what foods are safe for you.

 

You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.

 

I hope that you find a solution that works for you.


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#22 a1956chill

 
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Posted 24 February 2013 - 09:09 AM

dilettantesteph said:You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.""

 

 

 

 

 

 

 

The issue I have with this suggestion is ; if you are still symptomatic ,  damage is still occurring inside your body. Just taking a medication to cover the symptoms is not helpful IMO .

My suggestion would be a strict elimination diet .


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#23 designerstubble

 
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Posted 25 February 2013 - 12:41 AM

Once the villi start to erode you won't be absorbing nutrients. Over time some symptoms should start to show because of that. Also, the hormone (cck) that tells your gallbladder to squeeze and pancreas to release digestive enzymes is made and sent from the small intestine. With damage there that function doesn't work..or doesn't work well. Other digestive enzymes like for digesting milk are made on the tips of the villi too, so if they're gone, you won't be able to digest milk properly.
With severe villi flattening you might also get proteins leaking through the wall of the intestine causing food intolerances.

Your symptoms could be severe or latent. Each person is different. For example, you could have joint pain, but not noticeable digestive issues. You could have mood swings, GERD, insomnia, anxiety, ect. depending on which vitamins/minerals you're able to absorb. It all depends on how much damage there is, if it's patchy or total, and for how long you've had the problem.

I think generally, when flattened villi are seen by an endoscope, it's assumed that it's celiac. If a person goes gluten-free and their symptoms don't improve, they start looking at other causes. Sometimes it's a combo of celiac and other intolerances, or yeast /bacterial overgrowth.


Thank you that is so interesting to know. I feel so silly on here sometimes, I feel I ought to know all this stuff.
I think I must obviously be in the severe villi flattening category then as I have become intolerant to virtually everything since becoming gluten free 4 months ago. My biopsy (it was done even though I had been gluten free for 2months already) and came back marsh 3. I had continued to have stomach pain until I cut out dairy, then corn evoked a nasty reaction, so on etc. I had no idea that dairy caused damage. Everything I have read up until this point suggested otherwise!

I am on strict non processed now (am veggie), but can't have seeds or citrus due to asthmatic reactions recently. I am wondering why I'm still continuing to have problems. I still get bad stomach noises and wind no matter what I eat.

Just hoping my guts decide to start playing nicely soon as I'm not sure what else to do!

Thanks for the info, really appreciated
Kimmy
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#24 mushroom

 
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Posted 25 February 2013 - 12:56 AM

To get your guts to play nicely you have to treat them nicely.  High quality probiotics; digestive enzymes; L-glutamine, all will help them out, to repopulate your gut with the good guys, to digest your food, and to promote healing.   (Providing you have killed off your SIBO :ph34r: )


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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#25 dilettantesteph

 
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Posted 25 February 2013 - 05:59 AM

dilettantesteph said:You can also take medications for symptom control if you don't wish to change your diet.  There are over the counter medications that you can try, or your primary care physician can suggest others.""

 

 

 

 

 

 

 

The issue I have with this suggestion is ; if you are still symptomatic ,  damage is still occurring inside your body. Just taking a medication to cover the symptoms is not helpful IMO .

My suggestion would be a strict elimination diet .

 

I understand completely.  I go to crazy extremes myself to eliminate gluten.  I recognize the fact that not everyone wants to do that so I wanted to offer several options.


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#26 Lady Eowyn

 
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Posted 25 February 2013 - 07:18 AM

I have not managed to eat out anywhere yet and not feel glutened the next day.

Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .

I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

 

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease  :ph34r:  no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.


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#27 Lady Eowyn

 
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Posted 25 February 2013 - 07:26 AM

Just to apologise ...

I thought that I was responding at the bottom of page 1 - so now I look completely off topic.

I think I'm losing the plot today :blink: .


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#28 designerstubble

 
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Posted 25 February 2013 - 02:30 PM

To get your guts to play nicely you have to treat them nicely. High quality probiotics; digestive enzymes; L-glutamine, all will help them out, to repopulate your gut with the good guys, to digest your food, and to promote healing. (Providing you have killed off your SIBO :ph34r: )

Thanks. What constitutes a high quality probio? I am taking one but have no idea if its good or not?! Also what kind of food repopulates good bacteria? I once heard that green juices are good start? Though cant find any info on that! Will look into the digestive enzymes too.
I have no idea if I need any of this! All I know is that my 'movements' are still not right all the time, and my gi seems to make too much noise sometimes! I am eating a lot of veg though so who knows! I almost wish they could take another look inside to tell me if I am on track or not. Ugh. So frustrating.
Thanks though
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#29 designerstubble

 
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Posted 25 February 2013 - 02:35 PM

I have not managed to eat out anywhere yet and not feel glutened the next day.
Our local Italian restaurant does gluten free people in a special pan ( :) ) reserved for gluten free and I have salad (olive oil only) but it still gets me every time :( .
I think there is just too much gluten going on in most kitchens and of course, flour in the air, etc must tend to get everywhere. Realistically, a busy commercial kitchen is not likely to have sensitive cc issues under complete control!

As for laundry detergent - a couple of years ago I changed ours from a general one (various makes) to a environmentally friendly, no harsh chemicals, etc one and am certain I can tell a difference, especially with underwear and bedding - it's just different and makes your body more at ease :ph34r: no kidding!! Not suggesting this is anything to do with gluten, but on a chemical front - it makes you think.

I have not eaten out once yet. In 5 months. I'm far too scared. The UK are too behind the times with celiac for me to trust. I don't even trust celiac UK website much for their info... Very basic.
Interesting about the bed sheets. And laundry... Might give that a go... I am becoming hateful of chemicals these days and anything 'manufactured'!
Hmmmm you know, I am wondering if a baked potato might be safe for me to eat out? I could leave the skin maybe? Anyway, I'm rambling off on one now!!
:D
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#30 designerstubble

 
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Posted 25 February 2013 - 02:36 PM

Just to apologise ...
I thought that I was responding at the bottom of page 1 - so now I look completely off topic.
I think I'm losing the plot today :blink: .

!! Glad I'm not the only one who does stuff like that ;)
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)






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