have trouble accepting celiac diagnosis

[Mel Bauer]

Hi,

My daughter was recently diagnosed with Celiac disease. Which was something that took us by surprise. The only symptom she  had was low iron levels. Which is why they did the upper endoscopy and colonoscopy. I've attached her results of the upper endoscopy and I wondered if someone could tell me if this is a conclusive diagnosis. She was also told she has pernicious anemia which I've read is very rare to have both these conditions at the same time. 

[kareng]

Anemia/ low iron levels is very common with Celiac.  It is often the reason they test for Celiac.  My pernicious anemia was one of the reasons I was tested.  

I cant see any results.  Maybe you could copy and paste them?

[Mel Bauer]

This is the small bowel part of the diagnosis:

Pathologic Diagnosis

A. Small bowel, Biopsy

-small bowel mucosa shows villous blunting

-prominent brunner gland aggregate

-no significant acute inflammation or granulomata

Comment: the small bowel biopsy shows a few blunted villi and there is marked villous blunting. The lamina propria contains mild chronic inflammation and there are mild increased intraepithelial lymphocytes. A prominent Brunner glad aggregate is also seen The differential diagnosis includes spur/celiac disease in the correct clinical condition. Clinical and endoscopic correlation and correlation with laboratory studies is necessary.

[Mel Bauer]

Hi,

My daughter just got diagnosed with celiac disease and it caught us completely by surprise. She has  not had symptoms except low iron(which could be other things) I'm posting what the lab said about the biopsy, could someone tell me if this is a definitely celiac? 

This is the small bowel part of the diagnosis:

Pathologic Diagnosis

A. Small bowel, Biopsy

-small bowel mucosa shows villous blunting

-prominent brunner gland aggregate

-no significant acute inflammation or granulomata

Comment: the small bowel biopsy shows a few blunted villi and there is marked villous blunting. The lamina propria contains mild chronic inflammation and there are mild increased intraepithelial lymphocytes. A prominent Brunner glad aggregate is also seen The differential diagnosis includes spur/celiac disease in the correct clinical condition. Clinical and endoscopic correlation and correlation with laboratory studies is necessary.

Thanks so much I'm just hating this for her, she is just about to go off to college and it will be a major change for her.

[squirmingitch]

Yes, it is as far as the endoscopy goes. Did she have positive blood work?

There are lots worse diseases she could have. This is an adjustment in food & she doesn't have to get chemo or radiation or stick herself with needles every day or take pills every day. She's young & so should heal very quickly.

Please be sure to read our Newbie 101 pinned at the top of the Coping section.

Also, were you told that this is genetic so all first degree relatives should be tested every few years in the absence of symptoms & immediately in the presence of symptoms?

[kareng]

This might look a bit odd, but there were 2 different ones that just said the same thing, so I put them into one place.  This will keep everyone from posting twice and keep all the info together

[Mel Bauer]

She did not have blood work, and no-one has mentioned to me that we should get tested. I've had trouble getting any direction about what medical steps she or I should be taking. Does you Gi doctor monitor this situation or your family practitioner?

[cyclinglady]

I had no GI symptoms when I was diagnosed with celiac disease.  I just went in for a cancer screening colonoscopy (yep, I am over 50) and the GI saw that I was anemic (also have a genetic anemia) and ordered a celiac blood panel and included an endoscopy.  

You could ask for a celiac disease antibodies panel as there are a few other things that could cause villi damage, but the majority of the time, it is due to celiac disease.  Before the antibodies tests were developed, celiac disease was just diagnosed by endoscopy.  Your GI could recommend a gluten free diet and the resolution of the anemia will solidify the diagnosis too.  

Going off to college with Celiac Disease is doable.  You will have to notify the University and see about getting access to a kitchen if she is in a dorm.  Visit the food service group to see if they can (yes, required by law, but can they do it safely?).  See if there is a celiac support group in town.  There might be some Grandma celiacs who would take her under their wing).  I have a junior in high school who so far, does not have celiac disease.  Just in case, we have been looking into this type of situation.  She is getting retested this summer as she has been gluten light because of her Dad and me.  

A GI can monitor her situation, but a PCP doctor can also monitor her by checking her anemia and running repeat antibodies tests (another reason to get the complete celiac blood panel run as it can help by setting a benchmark for follow-up testing/care).    But honestly, my GI is my best source of support.  

 

 

[Mel Bauer]

Thanks so much for replying, it helps to talk to someone who knows more about this than we do at this point. She also has pernicious anemia so I wondered would that effect the villi. Her GI hasn't been very helpful just called and gave me the diagnosis and said follow up with her family doctor. Who said she would have to read up on it. Not very comforting to say the least.

[kareng]

3 minutes ago, Mel Bauer said:

Thanks so much for replying, it helps to talk to someone who knows more about this than we do at this point. She also has pernicious anemia so I wondered would that effect the villi. Her GI hasn't been very helpful just called and gave me the diagnosis and said follow up with her family doctor. Who said she would have to read up on it. Not very comforting to say the least.

The anemia doesn't effect the villi.  It is the damaged villa that cause the anemia.  the villi are how you absorb the iron, ferritin, B12, etc.  If you can't absorb the iron, B12, etc....you get anemia.  The anemia caused from the difficulty absorbing B12 is called pernicious anemia.  In Celiac, sometimes you never get the ability to absorb the B12 back completely.  I can now absorb some B12 but still take some supplements of B12.  Probably, only part of my intestine is able to absorb it - so you want to give the good part plenty of chances to absorb it.  

[cyclinglady]

How was her pernicious anemia diagnosed?  

[GFinDC]

Hi Mel,

CL is right, celiac is a very livable condition.  In fact, celiac causes most of us to eat a far healthier diet than the average Joe on the SAD (standard American diet).   Although it takes some time to get used to the gluten-free diet, it is not a big burden once you adjust.  There are lots of restaurants serving gluten-free food these days.  And it's not hard to take some fruit, hard boiled eggs, or peanuts along for backup food in case there isn't any safe gluten-free food around.

A local celiac group can be helpful to talk to.  Try searching in google or duckduckgo for gluten free and the city name.  You'll probably find some interesting links.  A local celiac group may be able to suggest a better, more informed doctor also.

She will be safer at school if she has a kitchen to prepare her food in herself.  Starting the gluten-free diet is best done by sticking with whole foods and avoiding most of the gluten-free processed foods for a few months.  Mission corn tortillas are a cheap sub for bread.

She may feel better if she avoids all dairy for a few months also.  Celiac disease can impair the ability to digest dairy.  After she has healed her gut a few months dairy may not be a problem.

There is a pretty good chance there are other students with celiac disease at her school too.  So if she can hook up with them it might be easier for her.

Either of her parents or both may have a celiac related gene.  Having the gene means you can develop celiac disease, not that you will.  Most people with the gene do not get celiac.  But first degree relatives have a somewhat higher chance of getting celiac.  The same genes are associated with a number of other autoimmune conditions.  So there may be a history of 
other AI diseases in the family.

Catching celiac disease at a young age is great, because it's much better than living with it for years and not knowing why you are so sick all the time.  And she avoids a lot of potential damage to her body.

We are glad to help with info and tips if needed.  Welcome to the forum!  

[kareng]

4 minutes ago, cyclinglady said:

How was her pernicious anemia diagnosed?  

Its diagnosed by the regular complete blood count panel most doctors do for routine exams.  The big clue is when your red blood cells are large and misformed.  This shows on the MVC part of the blood panel.  Then they see the level of B12 in your blood is very low and sometimes do  a special count to look a little more closely at the red blood cells.  Thats how I was diagnosed.  

[cyclinglady]

3 hours ago, kareng said:

Its diagnosed by the regular complete blood count panel most doctors do for routine exams.  The big clue is when your red blood cells are large and misformed.  This shows on the MVC part of the blood panel.  Then they see the level of B12 in your blood is very low and sometimes do  a special count to look a little more closely at the red blood cells.  Thats how I was diagnosed.  

 I was curious because I was recently diagnosed with autoimmune gastritis (stomach biopsy), but so far not Vitamin B-12 deficient, so I am assuming my intrinsic factor is still functioning enough to process B-12.    My blood cells are very tiny as a result of  Thalassemia which is a genetic anemia.  So, I am not sure how that will work.  Maybe, it will balance out and I will have  “normal-sized” blood cells!  ? I did also have iron-deficiency anemia (low ferritin which made my hemoglobin drop very low (usually just below range due to Thalassemia) at the time I was diagnosed with celiac disease five years ago, but that resolved when my small intestine healed.  I was curious as to how the OP ‘s anemia was diagnosed.  If her anemia presented like yours, she should expect healing on the gluten-free diet.  Too bad other autoimmune issues do not heal with a simple dietary change.  

So far, my GI has just instructed me to continue on the gluten-free diet.  We had a pretty lengthy discussion about my desire to avoid any medications to bring down or slow the inflammatory response.   

I am always learning!  

 

[Mel Bauer]

They did blood test to check her for pernicious animea.

intrinsic factor AB which was negative

 Prietal cell AB this was a 29.6 

So not sure how to understand these numbers

[kareng]

3 hours ago, Mel Bauer said:

They did blood test to check her for pernicious animea.

intrinsic factor AB which was negative

 Prietal cell AB this was a 29.6 

So not sure how to understand these numbers

Why not ask the doctor?  I have tried to explain it, but you might accept it better if the doctor explained it to you? And please, have the doctor explain it to your daughter.  She is the one that has to deal with this for the rest of her life.  I wish her luck.  If she would like to make an account, I am sure we would be happy to help her with her Celiac disease and life.

[cyclinglady]

Okay, Karen is right.  Both you and your daughter should talk to your doctor about these test results so that you understand them.  I am not familiar at all with this testing.  I was just curious about how pernicious anemia is diagnosed.  

I would ask your GI as to why the celiac antibodies have not been run as there are many things that could damage intestinal villi though the most common is celiac disease (I think).