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beebs

If The Gi Says That There Is No Damage That Can Be Seen With The Naked Eye

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My 4 year old DS had his endo a couple of weeks back, he went gluten free straight away.

The Paed GI said he couldn't "see anything, but often you can't with Celiac" But would you say that means that the damage isn't bad if it is that?

Only reason I ask is because I'm not noticing any big changes so far with the diet. The only thing I have noticed is that he had his first solid stool in over a year and he also had one that was constipated like, pellets. Which is very unusual - but then today he had 3 accidents in his pants - which is more than he used to. Usually he has 1 a dayish. Also the colour is much more normal - used to be very pale and is brown now. But still hurts and stings him nmost of the time - still loose.

Today he got a big canker sore. He always gets heaps and sometimes his tongue gets covered in them.

His last bloods came back low in Zinc - but the GI said they don't care about things like that. It also came back with an ESR of 49 with no other weird markers. I have read that ESR can point to inflammatory autoimmune diseases. Anyone know anything about that?


HLA DQ8, gluten-free since January 2011

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My 4 year old DS had his endo a couple of weeks back, he went gluten free straight away.

The Paed GI said he couldn't "see anything, but often you can't with Celiac" But would you say that means that the damage isn't bad if it is that?

Only reason I ask is because I'm not noticing any big changes so far with the diet. The only thing I have noticed is that he had his first solid stool in over a year and he also had one that was constipated like, pellets. Which is very unusual - but then today he had 3 accidents in his pants - which is more than he used to. Usually he has 1 a dayish. Also the colour is much more normal - used to be very pale and is brown now. But still hurts and stings him nmost of the time - still loose.

Today he got a big canker sore. He always gets heaps and sometimes his tongue gets covered in them.

His last bloods came back low in Zinc - but the GI said they don't care about things like that. It also came back with an ESR of 49 with no other weird markers. I have read that ESR can point to inflammatory autoimmune diseases. Anyone know anything about that?

Often nothing can be seen with the naked eye during an endo - that is why they take the biopsy samples and look at them under the microscope. The degree of damage is not as important as whether or not there is damage; it can be merely a reflection of how long it has been occurring or the degree of sensitivity. The degree would only affect the healing time.possibly.

I wouldl say that a change in Poop is a big change, particularly the color. If gluten is causing the problem the recovery is not going to be an instantaneous overnight kind of thing. It will have its ups and downs, but the general trend should be up. But it is going to take a while to heal the damage and you must be patient.

I don't know why the doc was unconcerned about the zinc. I find docs often dismiss highs or lows in blood work and they often turn out to be important. I kept asking my doc why my MCV (mean cell volume - blood) was high, and she blew me off. When I made her test my B12 and folate I found out it was because I had pernicious anemia. I think I would explore this further with the doc. Yes, ESR measure inflammation in the body, but it is non-specific about what inflammation it is measuring, whether from infection, autoimmune, whatever - see here: http://www.labtestsonline.org/understanding/analytes/esr/test.html My ESR was high for years after I was first diagnosed with psoriatic arthritis, but it stayed high even on the arthritis drugs. Didn't know if it was the psoriasis, arthritis, or gut inflammation that was causing it. However, once I got the psoriasis as well as the arthritis under control it dropped right back down. If your son is reacting to gluten, it would be normal for his body to be producing inflammation.

I hope you get some definitive answer/response soon, but in the meantime do try to be patient. :)


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"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

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

Celiac.com - Celiac Disease Board Moderator

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I know, sorry - I should be patient!! But its more to bounce off ideas with you guys cause you know so much :)

I typed in google "high ESR and low zinc" which were the only two things that were weird on his bloods (this time) The first things that comes up is Malabsorption issues It comes up with page after page....hmmmmmm

At other times this year he has been severely aneamic, (developed a heart murmur from it) and low vitamin D.

He could be getting cross contaminated as well - well - he probably is on account of me having to make one of my other sons have as much gluten as possible - he is having his endo next week. I swear its never ending!!


HLA DQ8, gluten-free since January 2011

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I think two weeks is too soon to determine if the diet is helping. btw i got those pellet poops and major constipation, too. I attributed it to eating rice flour products. You might try avoiding any processed gluten-free substitute type products for a while if you aren't already, and see if that makes things easier.


Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.

Gluten-Free since November 2010

GAPS Diet since January/February 2011

me - not tested for celiac - currently doing a gluten challenge since 11/26/2011

partner - not tested for celiac

ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.

dd - age 12.5, not celiac, has Tourette's syndome

both kids have now-resolved attention issues.

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