Jump to content

  • 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):

Does This Sound Like A Simple Gluten Intolerance Or Something More?

Melina89

Recommended Posts

Melina89 Newbie
Melina89
Posted

Hello.

About a year ago I went on an elimination diet to suss out the cause of my IBS and happened to discovered my life-long chronic eczema is actually caused by wheat/gluten. It seems, however, that ever since I went on this diet my intolerance has gone really low. So I decided to speak to a doctor about it and now I'm on a 6-week gluten diet to prepare for a blood test for celiac disease (I was previously eating 90% gluten-free).

Naturally, this diet is killing me.

I'm itchy all the time. My eczema has moved all over my body (as opposed to just my legs which is where it usually appears) and it's actually not exactly eczema-like anymore. Sometimes it's almost like I have bubbles. Not only that, my digestive system is all messed up, and I'm in terrible pain. Even more concerning is the stabbing pain I used to think was associated with polycystic ovaries in my lower right abdomen has returned.

I was hoping someone could answer me this: Does this sound like a simple gluten intolerance or is this more like celiac disease?

Any help is appreciated :)

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

Celiac.com Sponsor (A8-M):


tom Contributor
tom
Posted

Hi Melina,

Gluten Intolerance (or NCGI, non-celiac gluten intolerance) doesn't often seem to be all that simple around here, but I get that it's easy to use that adjective at first.

Re the eczema - you should look into whether it might really be DH https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/ , the celiac skin condition.

A DH diagnosis = celiac.

With so many symptoms from the gluten challenge, if I were you, I think I'd try to get the info to the Dr asap, & perhaps get the appt moved up. Particularly since you weren't really gluten-free before the challenge, going by the 90% gluten-free statement.

(As an aside, it seems a little puzzling that your symptoms were elim'd or so reduced while only 90% gluten-free. Maybe some weeks were 100%? :unsure: )

To answer your main question, it certainly sounds like either celiac or a "non-simple" NCGI.

Yeah ...not *really* answering the question, but such is the state of celiac testing. There are patients w/ celiac who are currently undiagnosable, as weird as it sounds to say about a condition w/ such drastic symptoms for so many.

What it means to me is that celiac vs NCGI isn't much of a distinction.

How long have you been on the gluten challenge?

nvsmom Community Regular
nvsmom
Posted

ugh, I feel for you. 6 weeks is a long time, I hope it's not too bad for you.

From what I've read NCGI people have pretty much the same symptoms as celiacs except they don't have the intestinal damage. Either way, it's not good. :(

Good luck!

Melina89 Newbie
Melina89
Posted
  • Author

Hi Melina,

Gluten Intolerance (or NCGI, non-celiac gluten intolerance) doesn't often seem to be all that simple around here, but I get that it's easy to use that adjective at first.

Re the eczema - you should look into whether it might really be DH https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/ , the celiac skin condition.

A DH diagnosis = celiac.

With so many symptoms from the gluten challenge, if I were you, I think I'd try to get the info to the Dr asap, & perhaps get the appt moved up. Particularly since you weren't really gluten-free before the challenge, going by the 90% gluten-free statement.

(As an aside, it seems a little puzzling that your symptoms were elim'd or so reduced while only 90% gluten-free. Maybe some weeks were 100%? :unsure: )

To answer your main question, it certainly sounds like either celiac or a "non-simple" NCGI.

Yeah ...not *really* answering the question, but such is the state of celiac testing. There are patients w/ celiac who are currently undiagnosable, as weird as it sounds to say about a condition w/ such drastic symptoms for so many.

What it means to me is that celiac vs NCGI isn't much of a distinction.

How long have you been on the gluten challenge?

Thanks for your response. I'm seeing my doctor again next week but I just needed some reassurance!

By "90% gluten-free" I meant that I might eat 1-2 serves of wheat per week, often less. Since the elimination diet I haven't completely eliminated gluten, I've just been trying to find a level I can tolerate. I've been doing that for about a year, but it seems I tolerate less and less each time. I've been on the gluten challenge for a little over a week. The itchiness I was expecting, but not feeling ill!

I think I will get a referral for a dermatologist so I can rule out the DH.

Thanks again.

Melina89 Newbie
Melina89
Posted
  • Author

ugh, I feel for you. 6 weeks is a long time, I hope it's not too bad for you.

From what I've read NCGI people have pretty much the same symptoms as celiacs except they don't have the intestinal damage. Either way, it's not good. :(

Good luck!

Thanks! It's just so frustrating! I prefer gluten-free regardless but I'd really like to know I don't have celiac so I can enjoy the odd gluten product...

:)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,084
    • Most Online (within 30 mins)
      10,442
    Melvac
    Newest Member
    Melvac
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...