Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I’m not sure about diagnosis of NCGS. Is there anything else I should be checked for?


Emma84

Recommended Posts

Emma84 Explorer

Basically, I have done food diaries and from what time could tell, since elementary school, gluten has caused my to have gas, abdominal pain, and diarrhea.
 

the incident that brought me to get tested for celiac was when I have severe abdominal cramps to the point I couldn’t even stand up or walk, paired with several rounds of diarrhea. The amount of gluten consumed in that meal would have been very, very trace amounts (a sauce that I dipped 1 peice of food into had some worceshsire sauce in it which is not totally gluten free but mostly is). Friends were very concerned and told me to get tested for celiac. Everyone else ate the same food and did not get sick.

 

did the blood test, only IgG demiated gliadin came back elevated. Proceeded with biopsy. Biopsy was normal, but they found some inflammation in my stomach. 
 

they diagnosed me with IBS and gluten intolerance. But typical IBS foods (artificial sweetners, carbonation, high FODMAPS food) do not bother me, and that reaction I describe above seems way too intense for just an intolerance considering there were only cross contamination levels of gluten in that food. Also, gastritis symptoms don’t match my symptoms at all? So I’m not convinced that just some stomach inflammation is causing all of this. 
 

what are my next steps here? When I eat gluten free, my bowel movements are normal aside from the times I get really sick (always from someone else making my food, always seems to be some level of gluten in that food). Incidents like I described above have happened my whole life, and happen about 3 times a year. I do not have any vitamin deficiencies or wonky blood work in general aside from that one elevated antibody and some wacky hormone levels (do not have pcos, they checked for that, no cysts either). They have tested my thyroid like 5 times and it’s always normal. 
 

should I push for more testing? If so, what testing? Is it at all possible that the biopsy was done incorrectly or missed any sign of inflammation or damage? I find it odd that they didn’t even find inflammation. 

Other symptoms I have that may or may not be related: wacky hormone levels, brain fog, very extreme fatigue (sleeping like 10 hours and still being tired, not being able to keep up with others my age despite being in the same physical shape etc.), and frequent and urgent urination and problems emptying my bladder (saw a doctor about this, said this was VERY unusual at my age (24, never given birth) but didn’t do testing or explain just offered meds for it) 

any help at all in highly appreciated. I have a 15 min follow up on Friday and I want to be prepared.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Tall Holly Rookie

Have you had an endoscopy? My bloodwork for celiac is negative, but I have increased leukocytes in my duodenum. This landed me a diagnosed of NCGS by Mayo Clinic. However, they also believe I have post-infectious IBS after a terrible round with Covid in January. The pain from the IBS flare ups is absolutely unreal. I sweat and almost pass out. 

I admittedly thought NCGS was imaginary until all of this happened. But it is so very real and can be just as severe as celiac disease. I have endometriosis, PCOS, had a hysterectomy, migraines, joint pain, you name it. 

I would push for an endoscopy just to see if you are having any damage like the increased IEL's. My doctor said it really needs to be taken just as serious as celiac disease, no cheating with any gluten ever, etc. 

Emma84 Explorer
1 hour ago, Tall Holly said:

Have you had an endoscopy? My bloodwork for celiac is negative, but I have increased leukocytes in my duodenum. This landed me a diagnosed of NCGS by Mayo Clinic. However, they also believe I have post-infectious IBS after a terrible round with Covid in January. The pain from the IBS flare ups is absolutely unreal. I sweat and almost pass out. 

I admittedly thought NCGS was imaginary until all of this happened. But it is so very real and can be just as severe as celiac disease. I have endometriosis, PCOS, had a hysterectomy, migraines, joint pain, you name it. 

I would push for an endoscopy just to see if you are having any damage like the increased IEL's. My doctor said it really needs to be taken just as serious as celiac disease, no cheating with any gluten ever, etc. 

would I have a severe reaction from such a small amount of gluten with NCGS?

 

they did the endoscopy which is how they got the biopsy. They didn’t mention IELs just that my villi were normal. I’m not entirely sure what the biopsy testing entailed, seems like they looked at the villi mainly. 

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,879
    • Most Online (within 30 mins)
      7,748

    Peta Dunn
    Newest Member
    Peta Dunn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.