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Nonceliac Gluten Intolerance - Follow Up Care?


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#1 kvanrens1

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Posted 16 January 2013 - 06:49 AM

In a couple of weeks, we have a follow up appointment with our daughter's ped GI. To make a long story short, over the past several years she has been diagnosed with:

1. Failure to thrive
2. Chronic Gastritis - treat with prescription omnezeprole
3. Pancreatic Insufficiency
4. Constipation
5. Idiopathic growth hormone deficiency - treat with growth hormone injections
6. Severe Lactose Intolerance

GI docs never did a full celiac panel (partial panel was negative - 4 years ago) and celiac biopsy was negative. She tested positive for gluten sensitivity through Enterolab. She has been on a gluten free/lactose free diet since March of last year. Since going gluten free, she has gained weight, pancreatic insufficiency has resolved, and constipation no longer an issue. She is doing fantastic!!! She is only on two medications at the moment down from 5 daily medications.

What is the typical follow up care for Nonceliac gluten intolerance? Is there any?

Thanks,
Kristy
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Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


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#2 peeptoad

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Posted 16 January 2013 - 07:31 AM

What is the typical follow up care for Nonceliac gluten intolerance? Is there any?


Gluten avoidance? I also have NCGI and I didn't even know there was lab test for it...
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#3 IrishHeart

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Posted 16 January 2013 - 07:42 AM

I hate to say this but, right now, there is no valid test for "gluten sensitivity". :(

According to Dr. Alessio Fasano, a leading celiac researcher

"If anyone claims they have a test that is specifically for gluten sensitivity" (such as stool or saliva tests) "there is no such thing, though I'm not ruling it out in the future."

Another celiac specialist, Peter Green, MD states: "Recent studies are showing that gluten sensitivity may be much more common than previously thought. It may, in fact, be a separate disease entity that involves different organs and different mechanisms than celiac disease. While there is no doubt that the condition exists, the lack of definite criteria for a diagnosis has resulted in a skeptical attitude on the part of many doctors."

Many people who test negative on celiac panels and biopsies do so well off gluten, however--and I have seen other's children thrive when gluten is removed from their diets (researchmomma's daughter, for example)
and this indicates (to me anyway)that non-celiac gluten sensitivity is as much of a health problem as celiac...,IMHO.

As for follow-up care, a physical with a CBC and CMP would cover the basics.
I am sure her GI pediatrician or your PCP will see her tremendous progress as a sure sign of her gluten intolerance.

I'm going to ask researchmomma to chime in here with some thoughts.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 kvanrens1

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Posted 16 January 2013 - 08:00 AM

I understand that Enterolab was/is controversial. I could have just tried the diet but she was 8 at the time so making a dramatic change for an 8 year old and wanting her school to appreciate the necessity, I was glad that we did the Enterolab. I was able to tell the school that she had lab results indicating that this was a health issue for her and not just a "trendy" diet to try. I also ordered the gene test so we also learned that she does not have the primary genes associated with celiac disease. However, she is adopted from China and one of her genes is associated with celiac disease in the Asian population.

Thanks for the replies!
  • 0

Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#5 Traveller

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Posted 16 January 2013 - 08:14 AM

Although the only treatment for NCGI is a gluten-free diet, there is no generally accepted test for it. However, NCGI sometimes causes intestinal inflammation and a Marsh 1 or 2 degradation to the intestinal villi, and that may create issues with absorbing certain nutrients properly. I noticed that you did not advise the full results of the endoscopy/biopsy. You might want to look at the Marsh level, and for indications of dairy intolerance.

FWIW, the best test I took for NCGI was elimination and reintroduction. The second best tests were how I react whenever I get glutened. And yes, my physician has told me that I do not absorb many items properly. Therefore, I supplement.
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Looking forward to a better life since 03/09

#6 gatita

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Posted 16 January 2013 - 08:48 AM

My feeling (for myself anyway :) ) is that followup care should be pretty much the same as for celiac. After all, we don't know how many cases of NCGI are really just very early-stage celiac, or latent celiac. So much is still unknown.
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Diagnosed with wheat hates me 4/13


#7 IrishHeart

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Posted 16 January 2013 - 08:55 AM

I understand that Enterolab was/is controversial. I could have just tried the diet but she was 8 at the time so making a dramatic change for an 8 year old and wanting her school to appreciate the necessity, I was glad that we did the Enterolab. I was able to tell the school that she had lab results indicating that this was a health issue for her and not just a "trendy" diet to try. I also ordered the gene test so we also learned that she does not have the primary genes associated with celiac disease. However, she is adopted from China and one of her genes is associated with celiac disease in the Asian population.

Thanks for the replies!


You absolutely did the right thing, Mom!:) Some people need to see "proof" and if lab results work, then all the better.
Just wanted you to know the current thoughts on NCGI testing, if you were unaware. Looks like you're very aware! :D
Best wishes!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 IrishHeart

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Posted 16 January 2013 - 09:00 AM

However, NCGI sometimes causes intestinal inflammation and a Marsh 1 or 2 degradation to the intestinal villi, and that may create issues with absorbing certain nutrients properly


I have never heard this before. That does not make sense to me because why wouldn't it be Celiac then?--since Celiac is specifically diagnosed by the Marsh scale.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#9 kvanrens1

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Posted 16 January 2013 - 09:06 AM

During her testing process, I knew very little about Celiac and gluten intolerance. I trusted the doctors that a negative blood test for celiac ruled out celiac and did not know about full panels. I have since learned that she did not have a full panel and probably should have been retested at some point. She was tested at age 5 and never had another blood test but tons of symptoms. Three years later, the GI doc did the celiac biopsy only because he was scoping her anyway. Again, I did not know about proper number of samples and where they should be taken. I have since requested the lab report and there is no mention of any intestinal inflamation or Marsh 1 or Marsh 2. It just says negative for celiac. He tested for three things with the scope and said he usually takes 6-8 samples. So I don't know if it was 6-8 total for 6-8 for each condition tested. The only thing that came back positive from the scope was chronic gastritis. We have used two different ped GIs during this process and I am not thrilled with either but not a lot of choices within a day's drive for us.
  • 0

Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#10 kvanrens1

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Posted 16 January 2013 - 09:17 AM

The positive response to the diet and how she feels if she is glutened is the biggest test of all for us. We rarely let her eat in restaurants because of the couple of occasions of accidental glutening even when ordering gluten free. I love that she takes it seriously and reads the ingredient list on snacks or in the grocery store. Her 5 year old brother, who is just learning to read, has been able to read "gluten free" for a long time. He will yell out in the store - Mom, that says gluten free so my sister can eat that and it won't hurt her stomach. :D

At her last GI appointment after going gluten free, the GI doc asked if we would put her back on gluten in order to do a full celiac panel and testing. I politely said NO, but I am thinking you guys had your chance. All you could do was scratch your head, do more tests, and prescribe more medicine!!
  • 0

Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#11 IrishHeart

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Posted 16 January 2013 - 09:17 AM

If she was consuming gluten and the blood test and biopsy were negative (6-8 samples sounds thorough--according to the major celiac research sites) then he concluded she did not have active celiac disease.He followed the diagnostic protocol. (although some people think that needs work.)
There has been much debate in the medical community over this protocol and proposals have been made to revamp it. (I read what Dr. Fasano had to say about it and he makes the most sense)

Of course, testing could always be faulty and of course, she could potentially have developed celiac down the road. Anything is possible.

The major differences between gluten sensitivity and celiac (two ends of the spectrum) is autoimmunity and villous atrophy in celiac.

The point is, she has progressed well being off gluten and you have done everything in your power to assure her of good health. Her symptom resolution speaks volumes!!! :).
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 kareng

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Posted 16 January 2013 - 09:41 AM

. However, NCGI sometimes causes intestinal inflammation and a Marsh 1 or 2 degradation to the intestinal villi,



Please tell us here you heard this? It is usually accepted that villi damage is because of Celiac or a few other things but NCGI isn't one of them.

http://www.curecelia...they-eat-gluten

"Do those with non-celiac gluten sensitivity run the same risk of damaging their villi if they eat gluten?
No. Celiac disease is an autoimmune disorder where the body acts to destroy it’s own tissues. Non-celiac gluten sensitivity has no known association with an autoimmune reaction and typically results in gastrointestinal symptoms, like IBS, fatigue or headaches."

http://www.curecelia...d-wheat-allergy

"What’s the difference between gluten intolerance, non-celiac gluten sensitivity and wheat allergy?
We use “gluten intolerance” when referring to the entire category of gluten issues: celiac disease, non-celiac gluten sensitivity and wheat allergy.
“Non-celiac gluten sensitivity” causes the body to mount a stress response (often GI symptoms) different from the immunological response that occurs in those who have celiac disease (which most often causes intestinal tissue damage).
As with most allergies, a wheat allergy causes the immune system to respond to a food protein because it considers it dangerous to the body when it actually isn’t. This immune response is often time-limited and does not cause lasting harm to body tissues."
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#13 kvanrens1

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Posted 16 January 2013 - 09:44 AM

Agreed IrishHeart. Given how bad she felt and how her little body was reacting (pancreatic insufficiency is very rare in children; pain so debilitating that she would get disoriented), I just don't want to miss anything important in her follow up care. I no longer trust the docs to be experts and want to go in educated. If she needs a CBC and CMP, I want to know that going into our next appointment. The last appointment we only saw the GI nurse and this time we see the GI Doc.

Thanks everyone!
  • 0

Daughter, age 9, is gluten sensitive, growth hormone deficient, pancreatic insufficient (now resolved), severe lactose intolerance, and other food sensitivities
Blood test/biopsy negative for celiac disease
Enterolab positive for gluten sensitivity
DQ7 and DQ9

Gluten Free since March 2012


#14 GFinDC

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Posted 16 January 2013 - 09:55 AM

The lactose intolerance sure lines up with celiac disease. They go hand in hand for untreated celiacs. Many people recover the ability to eat dairy though after they have healed. Pro-biotics may help with that.
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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

#15 Traveller

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Posted 16 January 2013 - 04:12 PM

I have never heard this before. That does not make sense to me because why wouldn't it be Celiac then?--since Celiac is specifically diagnosed by the Marsh scale.


Please tell us here you heard this? It is usually accepted that villi damage is because of Celiac or a few other things but NCGI isn't one of them.

<references deleted>


Here's some quick references from my friend Google:

http://celiacdisease...-Research_2.htm

"Many physicians will not diagnose celiac disease unless intestinal damage reaches Marsh III orMarsh IV levels."

http://www.biomedcen.../1741-7015/9/23

"GS were considered those patients with negative autoantibody serology (endomysium antibodies-immunoglobulin A (EMA-IgA) and tTG-IgA), normal mucosa (Marsh stage 0) or increased intraepithelial lymphocytes (Marsh stage 1) and improvement of symptoms within days of the implementation of the diet:

http://www.cleveland...tive-disorders/

"The hallmark of celiac disease is Marsh 3 or villous atrophy"

http://www.celiaccen...nd-definitions/

Non-celiac gluten sensitivity has been clinically recognized as less severe than celiac disease....Some individuals may experience minimal intestinal damage, and this goes away with a gluten-free diet.


http://www.medscape....rticle/757916_3

"According to the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) current criteria, duodenal villous atrophy (Marsh stage III and onwards) is the necessary criteria for diagnosing celiac disease and recommending a gluten-free diet....Despite these observations, caution is still necessary before diagnosing celiac disease in patients with Marsh I lesions. Intraepithelial lymphocytic infiltration can be a common, nonspecific inflammatory response of the epithelium to a number of noxious or inflammatory signals."
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Diagnosed 03/09
Gluten-free since 03/09 (and manic about it)
Looking forward to a better life since 03/09


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