Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Question About Difference Between Celiac And Gluten Intolerance


CGally81

Recommended Posts

CGally81 Enthusiast

I haven't gotten specifically tested for celiac disease, but I definitely have had the symptoms when I ate gluten, since March until I went gluten-free in August. And I'd even been accidentally glutened twice during that month, and knew it pretty quickly.

I got a question. I'd read somewhere that while gluten intolerance and celiac disease are actually not synonyms, though they supposedly have the same symptoms (for me it was severe brain fog and feeling like a zombie, my stomach making certain noises that seemed to continue non-stop for hours or over a day, wet D with only liquid coming out, and feeling really hungry 1-2 hours later and eventually getting a nasty headache if I didn't eat something).

But supposedly one key difference is that with celiac, if you eat only a tiny bit of gluten, your body goes insane, whereas with gluten intolerance, how insane it goes is related to how much you eat. Is that true? I have noticed back when I was being glutened that the more gluten-containing foods I ate, the worse the symptoms got, whereas if I ate small amounts (say, one 30 calorie pretzel nub instead of a full pretzel), I'd definitely get the symptoms, but not as strongly as I would when I ate a lot more.

Is that the case for all of you, or does it not seem to matter how much gluten you eat, you feel just as bad no matter what? Is it possible that I have a somewhat more "mild" (in relative terms, because this is still not fun!) version of this disorder?


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



Celiac.com Sponsor (A8-M):



ENF Enthusiast

The "difference between celiac and gluten intolerance" is the billion dollar question, lol! If you asked a hundred different people, who have some kind of problem with gluten, you'd likely get a hundred different answers.

Can't answer your question about gluten ingestion, and tolerance, since I don't eat it at all anymore and do not allow myself to get cross-contaminated.

Lisa Mentor

Here is some information from the Gluten Intolerace Group:

Open Original Shared Link

CGally81 Enthusiast
Here is some information from the Gluten Intolerace Group:

Open Original Shared Link

Darn. It says that the symptoms of gluten intolerance "may resemble some of the gastrointestinal symptoms of celiac disease". But nothing about the neurological ones, and I had both when I was glutened. Only for celiac does it list neurological symptoms. Not good.

On the other hand:

"My doctor says that I have moderately elevated blood tests but do not have

celiac disease. What do I have? You may have a form of gluten intolerance that

brings about a slight immune response but does not cause intestinal damage."

"Slight" immune response? That includes brain fog and memory loss? Because I definitely would get that.

Okay, I think I'm celiac. But I could swear that eating more gluten made the reaction stronger.

Lisa Mentor

Could you post your blood panel results here. I'm not sure what you doctor is referring to as "moderately elevated". Depending on what test he was refering to, a positive result is a diagnosis for Celiac. And coupled with your symptoms, (which can be over 200 known symptoms), it looks likely.

Here is some information on the Serologic Panel for Celiac:

Open Original Shared Link

CGally81 Enthusiast
Could you post your blood panel results here. I'm not sure what you doctor is referring to as "moderately elevated". Depending on what test he was refering to, a positive result is a diagnosis for Celiac. And coupled with your symptoms, (which can be over 200 known symptoms), it looks likely.

Here is some information on the Serologic Panel for Celiac:

Open Original Shared Link

I was just quoting the website that explained the difference between the two when I said the "moderately elevated" thing. It was part of a question-and-answer session regarding gluten intolerance.

I didn't have a "blood panel" for this kind of thing. Instead I took a "comprehensive" general blood test that looked at everything... except my vitamin levels. Everything that it did check for, such as potassium, calcium, peptides (my doctor wanted to rule out diabetes as a cause for my intense hunger, and I think it would also be nice to rule it out as a result of celiac, which can cause diabetes in the long term), and other things, was normal. Except my fasting blood sugar level, which was a little high, but not hugely so. Let's not forget I was really hungry at the time, a recovery symptom that's getting slowly better, and is better now than it was when I'd gotten my blood test.

  • 2 weeks later...
tmbarke Apprentice

My doctor didn't do any certain tests with me during my physical with the blood test being done the prior monday.

But when I told him symptoms I was having, he put me on a gluten free diet.

We didn't discuss anything about Celiac Disease or Gluten Allergy or Gluten intolerance......but it was obvious that Gluten was causing my symptoms.

My neck and tongue were swelling almost all the time! Sometimes worse than others.

My shoulder would not relax - like it was constantly twisted (and at the worse, like someone stuck a screwdriver in my shoulder!)

I was bloated and having digestive problems......with the fog - depression - vision laziness - back pain and neck pain (to mention a few)

I saw the list the doctor gave me and I said in confusion "But Dr., I'm a wholegrain JUNKIE!"

He replied saying, "That's a sign Tena, You crave and become addicted to what is hurting you"

That is so true! I'd have a wyler's singles drink mix in my bottle of water, and then another and another and another....sucking them down like I could never quench my thirst. (artificial color and flavor)

I could eat a gluteny meal, get bloated, and start back up again! What was I becoming!?

He also put me on certain vitamins to supplement my multivitamin I was already taking.

Are you positive you are NOT eating any gluten? Could there be a hidden one somewhere?

Do you think that maybe it's not just gluten? but maybe dairy as well?

It used to be that before I was put on the gluten-free diet, I'd eat a salad and become a salad shooter! Now it doesn't react at all like that in me as I have salads everyday, I've had soft and constipated......while at first I was going 4-5 times a day! My body is changing now to accomodate.

I don't really know if having a gluten allergy or intolerance is Celiac (unless you're tested) but as for me, I'm treating mine as if it were..........looking at my family history, diabetes runs in my family - there are two known cancers in my family (1 dead and 1 dealing) - my dad died of a heart attack at 57, my brother had a heart attack in his 20's and my sister had a heart attack at 40 and a stroke at 45.

So for me, it doesn't matter........I'm healthy oriented and determined to stay gluten free! Because it works! I feel like a new woman and I haven't seen her since my 20's.

It just matters!

What are you eating that doesn't make you feel hungry too soon?

Are you taking supplements?


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748

    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    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

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
×
×
  • Create New...