Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Nonceliac Gluten Intolerance - Follow Up Care?
0

16 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!!! :).

0

Share this post


Link to post
Share on other sites

. 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.cureceliacdisease.org/archives/faq/do-those-with-gluten-sensitivity-run-the-same-risk-of-damaging-their-villi-if-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.cureceliacdisease.org/archives/faq/what-is-the-difference-between-gluten-intolerance-gluten-sensitivity-and-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."

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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."

0

Share this post


Link to post
Share on other sites

The modified Marsh classification of gluten-induced small-intestinal damage has been updated as of April 2012

Stage 0 Preinfiltrative mucosa; up to 30% of patients with dermatitis herpetiformis (DH) or

gluten ataxia have small-intestinal biopsy specimens that appear normal

Stage 1 Increase in the number of intraepithelial lymphocytes (IELs) to more than 30 per

100 enterocytes

Stage 2 Crypt hyperplasia. In addition to the increased IELs, there is an increase in crypt

depth without a reduction in villus height. Gluten challenge can induce these

changes, which can also be seen in 20% of untreated patients with dermatitis

herpetiformis and celiac disease

Stage 3 Villous atrophy: A, partial; B, subtotal; C, total. This is the classic celiac lesion. It

is found in 40% of DH patients. Despite marked mucosal changes, many

individuals are asymptomatic and therefore classified as having subclinical or

silent cases. This lesion is characteristic of, but not diagnostic of, celiac disease

and can also be seen with severe giardiasis, infantile food sensitivities, graftversus-

host disease, chronic ischemia of the small intestine, tropical sprue,

immunoglobulin deficiencies, and other immune deficiencies and allograft

rejection

This is why diagnosis of celiac is based on several criteria, not just one.

http://www.worldgast..._long_FINAL.pdf

also:

".... Instead we find clinically useful the shifting to a quantitative approach that can be defined as the "4 out of 5" rule: the diagnosis of celiac disease is confirmed if at least 4 of the following 5 criteria are satisfied: typical symptoms of celiac disease; positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer; human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes; celiac enteropathy at the small bowel biopsy; and response to the gluten-free diet."

http://www.ncbi.nlm.nih.gov/pubmed/20670718

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,885
    • Total Posts
      919,480
  • Topics

  • Posts

    • Eeek confused! Positive biopsy, negative blood test???
      Thank you! My PA said that she still thinks it's celiac....but I don't feel like she's fully explained why. Some people are hard to get a solid answer out of! I think I'm gonna get a second opinion somewhere else.....appreciate the feedback. Makes me feel a little less crazy
    • Potato Crusted Quiche Breakfast Casserole (Gluten-Free)
      Here is the Potato Crusted Quiche Breakfast Casserole that my Significant Other came up with. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,929
    • Most Online
      1,763

    Newest Member
    Robyn08
    Joined