Gluten Intollerant, can I become Celiac?

[ElleBelle91]

I was recently diagnosed as gluten intolerant or with non-celiac gluten sensitivity. The doctors told me I could try eating gluten to the point where I could tolerate it. I have noticed that, at first, I definitely didn't feel good but that it wasn't bad enough to keep me from cheating every once in a while. Over the last week however, I was on the road for work (I'm an admissions counselor) and I couldn't find anything gluten free on the run and so I grabbed something quick and I immediately felt ill. Then I ate something that they told me had breadcrumbs in it not thinking that a few crumbs would bother me and immediately felt like I was going to loose my cookies and now, a few hours later, I feel itchy all over. Is there a chance that I could be developing Celiac's by constantly exposing my body to it? Has anyone else noticed their symptoms coming on faster and getting worse over time?  I can't find anything online that says if this is possible or not. 

[kareng]

2 hours ago, ElleBelle91 said:

I was recently diagnosed as gluten intolerant or with non-celiac gluten sensitivity. The doctors told me I could try eating gluten to the point where I could tolerate it. I have noticed that, at first, I definitely didn't feel good but that it wasn't bad enough to keep me from cheating every once in a while. Over the last week however, I was on the road for work (I'm an admissions counselor) and I couldn't find anything gluten free on the run and so I grabbed something quick and I immediately felt ill. Then I ate something that they told me had breadcrumbs in it not thinking that a few crumbs would bother me and immediately felt like I was going to loose my cookies and now, a few hours later, I feel itchy all over. Is there a chance that I could be developing Celiac's by constantly exposing my body to it? Has anyone else noticed their symptoms coming on faster and getting worse over time?  I can't find anything online that says if this is possible or not. 

How did they diagnose NCGI?  Did you test negative for Celiac?  

[Ennis-TX]

Where you tested if celiac if not you might consider a gluten challenge and getting tested. Though funny thing about intolerance issues, You sometimes do not notice them if they are a daily staple, and symptoms are present but such a daily pattern you find them to be normal. After removing said intolerance your body starts feeling better and you start noticing a improvement slowly and this becomes your new normal. Then when you reintroduce said food you body will react much stronger to the offending item and show you who is boss and that it certainly does not want that. Unsure of the exact mechanics of it but I have seen this happen with gluten, diary, soy, and other common food intolerance with people over the years.

[ElleBelle91]

18 hours ago, kareng said:

How did they diagnose NCGI?  Did you test negative for Celiac?  

They did a tissue test through a scope and they did a blood test and it all came back negative. I was diagnosed at Mayo Clinic. 

[Victoria1234]

Yes, after I was off gluten, even a crumb would give me my dh itching back. Even gluten-free foods that were processed would do it. I was unbelievably sensitive,

i know you can activate celiac at any point in your life, so I imagine you are not immune. Not sure if you'd get it because of eating gluten, but I'd sure stay away from it if I were you. I wouldn't want to push my luck.

carry lots of yummy gluten-free foods with you in your car always, so you're u have something safe when you get hungry. Nothing is worse than being stuck without gluten-free food when you're starting to feel lightheaded from hunger!

[cyclinglady]

Ellebelle91,

It was great that celiac disease was ruled out for now.  A NCGI diagnosis does not mean that you can never develop celiac disease in the future unless you also lack the genes (but genetic tests are not perfect either and that is another story).    It is unfortunate that there is no specific testing yet for NCGI, other than to rule out celiac disease.  But, the treatment is the same as for celiac disease — no gluten.  I think you probably need to avoid gluten completely.  It it obvious that gluten makes you ill.  You just might not be causing villi damage in your small intestine, but still raising havoc in your body 

We have some members who have NCGI, and I am hoping they will add more.  I do know that they are very careful with their diet. 

Someday, research will catch up to NCGI.   

[Jmg]

Hi Ellebelle

On 10/28/2017 at 1:58 AM, ElleBelle91 said:

I was recently diagnosed as gluten intolerant or with non-celiac gluten sensitivity.

I also react to gluten but tested negative, so share your NCGS diagnosis. Welcome  

On 10/28/2017 at 1:58 AM, ElleBelle91 said:

he doctors told me I could try eating gluten to the point where I could tolerate it.

I've seen this advice given both here and elsewhere. I'm not a doctor but I do fundamentally disagree with this approach, both from my own experience and from what I've read. Here's one of the leading researchers in the NCGS field, Prof Umberto Volta:

Quote

 So, it’s very difficult for these patients to reintroduce gluten. We don’t know currently if non-celiac gluten sensitivity is a permanent condition or a transient condition. Celiac disease is a permanent condition. Wheat allergy can be a transient condition because it’s typical of first infancy and tends to disappear at the age of 14 or within the age of 14 or 15 in about 60% of cases. And, non-celiac gluten sensitivity, probably, we don’t know currently if it’s a permanent or transient condition. In my opinion, patients with non-celiac gluten sensitivity cannot tolerate gluten and cannot reintroduce gluten in their alimentation. 
 
Another important point is that of the small amounts of gluten for these patients represented by contamination in consuming food outside the home, probably, the majority of these patients do not tolerate small amounts of gluten presented by contamination. So, the situation is similar to those with celiac disease, probably not for the possibility of complications or major complications. But, because small amounts of gluten are able to cause the reappearance of symptoms.  
 

You can read his view and some other articles on NCGS here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/ There isn't a great deal known at present but there's interesting research underway including a possible blood test. 

On 10/28/2017 at 1:58 AM, ElleBelle91 said:

Is there a chance that I could be developing Celiac's by constantly exposing my body to it? Has anyone else noticed their symptoms coming on faster and getting worse over time?  

I think it's more likely that you're getting more sensitive to gluten now that you've mostly excluded it from your diet. This is exactly the same thing that happened to me and that happens to most of the celiacs here too. 

I think the answer is that you'll need to approach the gluten-free diet in the same way that anyone with celiac would. That means a level of preparation, travelling with some emergency snacks, getting to know the readily available safe foods and restaurants etc. The newbie thread has some good info about this. 

Of course you may be different to me and be able to tolerate some level of gluten. But I suspect celiac and NCGS are quite closely related and that soon the clinicians who are blithely telling people to eat a little gluten will change their advice. But what do I know

Best of luck

 

[lilo]

I have NCGI too . One year after my  autoimmune hypothyroidsm diagnosis , I started to have digestion problems. I lost too much weight and i was having diarrhea every week.  People around me thought that I had eating disorder. Eating pasta or a slice of bread was scaring me because it was making me bloated , and the funny thing is i didn't even know what gluten was. For few months i ate to much gluten containing stuff and my TSH went up . Then I started to have intestinal infections and couldn't go school for weeks. I still didn't think that my problem was with gluten . Then I saw many people with autoimmune diseases who started to feel better after giving up on gluten . I gave up for a week and started to feel a lot better. Then I completely removed it from my diet. 

 However, when I go on a holiday I cheated. Ate gluten and got sick.Couldn't heal for months . Even though I stopped eating gluten I was having diarrhea every day again. Then school started . A time later I was glutened from my school's food. I had a horrible diarrhea and rash like 5 minutes after eating it. This time, I reacted to gluten worse then ever.It took me a lot of time to heal again. I stopped eating at school and other restaurants.

 

  Now I feel good, my digestion got better . I don't want to test for celiac because I will have to eat gluten for testing and I know that my reaction will be very bad, it can also affect my education right know  (I'm starting university next year). I'm just hoping that there will be more research about this topic. I'm also studying a lot  to be an endocrinologist , my goal is to do more research about NCGI and autoimmune diseases  

 

[ElleBelle91]

Thanks so much everyone! I have also contacted my doctors during this and they want to reevaluate the tissue sample to make sure that there is no possible way that I’m celiac. I was under the impression I was just NCGS but apparently they aren’t 100% sure but said everything that you all did about treating as celiac since I am having such a strong reaction to gluten. 

 

This forum has been so educational to me! 

[Jmg]

6 hours ago, ElleBelle91 said:

Thanks so much everyone! I have also contacted my doctors during this and they want to reevaluate the tissue sample to make sure that there is no possible way that I’m celiac. I was under the impression I was just NCGS but apparently they aren’t 100% sure but said everything that you all did about treating as celiac since I am having such a strong reaction to gluten. 

 

This forum has been so educational to me! 

They may have someone else look at the biopsy sample. I think analysing them is a specialised skill, they may want to get a second opinion just in case. 

Either way, best of luck

 

[Beverage]

I strongly suggest a different doctor, find one who is more educated on NCGS.   He/she gave you very bad advice.  Doctors work for you, find one that have help you better.

[Posterboy]

On 10/27/2017 at 7:58 PM, ElleBelle91 said:

I was recently diagnosed as gluten intolerant or with non-celiac gluten sensitivity. The doctors told me I could try eating gluten to the point where I could tolerate it. I have noticed that, at first, I definitely didn't feel good but that it wasn't bad enough to keep me from cheating every once in a while. Over the last week however, I was on the road for work (I'm an admissions counselor) and I couldn't find anything gluten free on the run and so I grabbed something quick and I immediately felt ill. Then I ate something that they told me had breadcrumbs in it not thinking that a few crumbs would bother me and immediately felt like I was going to loose my cookies and now, a few hours later, I feel itchy all over. Is there a chance that I could be developing Celiac's by constantly exposing my body to it? Has anyone else noticed their symptoms coming on faster and getting worse over time?  I can't find anything online that says if this is possible or not. 

Ellebelle91

Can you become Celiac if you are gluten intolerant?
Absolutely!

Here is the celiac.com article on this important question.

https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html

quoting their summary

"This study shows that gluten is definitely the trigger for symptoms in a subgroup of patients with clinical NCGS."

IN fact the remission/occurrence was 90+ percent.

Quoting again.

"The results showed that 91% of patients had clinical relapse during gluten challenge compared with just 28.5% after placebo (p = 0.01)."

Read the whole article for yourself.

Without a positive blood test probably a better diagnosis would of been IBS.

    They did a tissue test through a scope and they did a blood test and it all came back negative. I was diagnosed at Mayo Clinic.

Since antibody test's are pretty specific.  . . . however the results for most IBS are similar to a NCGS/NCGI diagnosis.

https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html

quoting from the article.

"Nearly 84% of the gluten-free placebo group showed a significant improvement in symptoms compared to just under 26% for the (IBS) gluten consuming group (p < 0.001)."

Here is a thread that talks about some of these same issues especially what is NCGS or NCGI.

https://www.celiac.com/forums/topic/118308-positive-dgp-not-celiac/

https://www.celiac.com/forums/topic/118308-positive-dgp-not-celiac/?page=2

I have linked to both pages of the thread.

It also links to an older thread that explains how you might have received your NCGS/NCGI diagnosis.

Where someone else asks the same question.

https://www.celiac.com/forums/topic/116215-first-is-was-then-it-isn’t…-which-is-it/#comment-965813

The best research I have seen on the topic is the Columbia University study about the difference between NCGS and Celiac disease summarized in the above thread but here is a good link to the study for easy reference if you don't have time to read the whole thread right now.

Open Original Shared Link

The biopsy could of been faulty causing a false negative especially if not many biopsy were taken because the small intestine despite it's name is actually quite a large in area.   

On 11/2/2017 at 4:44 AM, Jmg said:

They may have someone else look at the biopsy sample. I think analysing them is a specialised skill, they may want to get a second opinion just in case. 

Either way, best of luck

 

as to jmg comment on the biopsy he is right.  Analyzing them is a special skill.

see dr. ford's great article about how biopsy's can be misinterpreted  without a good pathologists.

Open Original Shared Link

where he (Dr. Ford) says

an experienced pathologists needed

"As you can see, this area of small bowel histology is complex. Not surprisingly, it has been found that community histologists are less likely to pick up small bowel changes compared with histologist whose speciality is the gut." after he notes "Electron microscope show damage in normal biopsies" so without good detective work on the part of a good pathologist even a "good sample" might initially/seem to show no visual damage except to the trained eye using special equipment.

even those who  showed "normal biopsy" and "They/that were kept on gluten. After several months, three of them had a second biopsy that subsequently showed histological changes suggestive of coeliac disease."
also here is a great article that explains why multiple biopsies should have been taken.

Open Original Shared Link

sorry to overwhelm you with information but I think it will all be helpful when you get chance to read it all.

But you probably don't need a doctor to tell you what your body already knows . . . unless you want or need an "official" diagnosis for medical reasons.

*** this is not medical advice but some research that helped me over the years to understand how these diseases/distinct clinical pictures differ.

I hope it is helpful to you too!

2 Timothy 2: 7  “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,