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

Celiac Vs Guten Intolerence

lilliexx

Recommended Posts

lilliexx Contributor
lilliexx
Posted

i was under the impression that all people w/ a gluten intolerence are at risk for developing celiac disease, but my doctor says no.

she said gluten intolerence and celiac disease are two totally different things that may cause similar symptoms.

i do have a gluten intolerence so i thought i might have celiac disease but she doesnt think so becuz im not underweight.....but i have had serious stomach problems for 4 years.

i realize that the only thing you can do for celiac disease is to stop eating gluten, so should i just keep up w/ my gluten-free diet and not worry about finding out if i have celiac disease? or should i get another doctor who is willing to test me?

thanks

lillie

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

Celiac.com Sponsor (A8-M):


Racheleona Apprentice
Racheleona
Posted

Hi lilliexx,

My doctor basically said the same thing. Because only my IgG was positive by one point, my doc said I was "non celiac gluten intolerant" and that I should correct it by not eating gluten for a while. I have not read anything that supports that! But he is the doctor that wrote the forward in the book "dangerous grains" and I really trust him with his knowledge. He later in the appt. called a doctor that runs celiac blood tests in california, and told the doc my problems, and the doc said I should go gluten free for life, because I said I got a stomach ache when I reintroduced gluten after being gluten free for almost 2 months. So I really don't know what to tell ya! I'm confused too.

Rachel

lilliexx Contributor
lilliexx
Posted
  • Author

what i'm confused about is, if i were simply gluten intolerant wouldnt my symptoms almost immedietly go away after i quit consuming gluten?? becuz if i dont have celiac disease then there shouldnt be intestinal damage. but i have been off for 5 weeks and still having major problems.

so it leads me to believe i iether have celiac disease, or am still somehow consuming gluten.

Alexolua Explorer
Alexolua
Posted

Not an expert, or a doctor. Though this is what I've believed to be true so far.

lilliexx it sounds like your doctor is clueless. Celiac Disease and a Gluten Intolerance, she claim to be two different things? celiac disease is cause by a Gluten Intolerance. And they are both "cured" the same way. By avoiding gluten the rest of your life.

The only real difference between the two, is that with Celiac Disease, there is damage to the villi in the small intestines. With GI, there isn't. But GI can develop into celiac disease.

I have a gluten intolerance. Also a casein intolerance, and I've been avoiding them for over 10 weeks now. Maybe 11, lol. I'm still not feeling much better. Others can see no improvement for even longer.

It's true, some people have improvement right away though.

It's also possible there may be other foods that bother you.

But when it comes to celiac disease and GI, they are more or less the same thing, and some on these boards just say celiac disease when they are talking about GI anyway. Umm.. hopefully this helped some?

lilliexx Contributor
lilliexx
Posted
  • Author

my doctor said people with celiac disease produce some kind of antibody and people with gi are just sensitive to gluten.

i was tested for a gluten sensitivity but she doesnt seem like she wants to test for other alergies.

i dont have insurance so i have to go to a public health clinic....im thinking that is why she is hesitent to run all these expensive tests.

i know i can do elimination diets, but i just want definate answers!! this is so frusterating.

thanks for the replies!!

tarnalberry Community Regular
tarnalberry
Posted

elimination diets - if done objectively - actually do provide you with definite answers. allergists, when they're unable to get accurate enough information out of blood tests, do elimination and challenge diets. I would encourage you - given the fact that your doc is hesitant to try more tests - to try it, in some form or another.

Tasha2004 Contributor
Tasha2004
Posted

My IgA keeps going up but everything else is normal. They say it is Gluten Intolerance/Latent Celiac.

I have not yet gone gluten-free, but I have a feeling it's coming.

Enterolab says a high IgA means Celiac.

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

Celiac.com Sponsor (A8-M):


Alexolua Explorer
Alexolua
Posted
my doctor said people with celiac disease produce some kind of antibody and people with gi are just sensitive to gluten.

You also produce anti-bodies to gluten when you are intolerant to gluten.

i do have a gluten intolerence so i thought i might have celiac disease but she doesnt think so becuz im not underweight.....but i have had serious stomach problems for 4 years.

At first I thought I had celiac disease too, but after learning more, and having a biopsy done that showed no vili damage, I had to admit I didn't have celiac disease. Though I did have gluten anti-bodies in my blood, so am intolerant to gluten. I've also had serious stomach problems for quite some time too.

Also, the doctor I had, despite me not being underweight, did do biopsies, thinking I might have celiac disease too. So maybe it's just because you have to go to a public clinic, or the doctor you're seeing just doesn't know as much about it.

Where do you live? Maybe you could get state-funded insurance? That's what I have.

But maybe the challenge diets would work best. Listen to tarnalberry on it! =)

burdee Enthusiast
burdee
Posted

With all this confusion about celiac disease vs. gluten intolerant, I am soooo glad I did tests through Enterolab which tests for autoimmune reaction to tissue transglutaminase, gluten sensitivity (antibodies), casein sensitivity (antibodies) and small intestinal malabsorption (fecal fat) AS WELL AS the gene test for gluten sensitivity. Even though I had been gluten-free for over 2 months when I took their tests, I still showed positive gluten and casein antibodies and autoimmune reaction to tissue transglutaminase AND the main celiac gene. I did not show malabsorption, but I was taking digestive enzymes at the time of the test (not realizing those might skew my results). Nevertheless the celiac gene test as well as gluten antibodies told ME I have celiac disease AND gluten intolerance antibodies.

I'm glad I didn't rely on blood tests which depend on the 'leaky gut' phenomena in which gluten antibodies leak from the intestines into the blood stream which doesn't happen until after extensive celiac disease damage. I'm also glad I didn't rely on hit and miss biopsies which may not take a damaged chunk of small intestine the first time ... or second time ... Unless the whole small intestine is completely damaged, any of those biopsies could miss the damaged portion. That's a rather unreliable test, too. I would advise anyone who has positive gluten intolerance tests but doubts they have celiac disease to get gene tests. That would confirm celiac disease. ;)

BURDEE

Stoole Newbie
Stoole
Posted

I was diagnosed as gluten intolerant last week based on three blood tests. I have pretty minor symptoms, so my doctor said I could continue eating wheat but just cut way back. I decided to go completely gluten-free anyway.

I have a phone appointment with my doc for Wednesday to discuss intolerance vs. Celiac and what we should do next. Does anyone have any suggestions for what I should ask her?

I definitely want to know why she thinks it's OK for me to have any gluten. I'm wondering if I'm at risk for Celiac and I'm just lucky we caught it now.

Thanks for the advice.

Alexolua Explorer
Alexolua
Posted
I'm wondering if I'm at risk for Celiac and I'm just lucky we caught it now.

I'd say yeah, at risk. If I'm learning things correctly, a gluten intolerance doesn't always lead to Celiac. Might be wrong there. But it definitely leads to other health problems, so why risk getting really sick in the future? I'd say go with being gluten-free completely.

Would say you're lucky it was found now, before you got worse symptons though. =)

GEF Explorer
GEF
Posted

Intolerance can lead to celiac, especially in individuals who are genetically pre-disposed. I'm sure that in some, celiac never develops. There are some here that were intolerant and didn't go gluten-free and then developed celiac year's later.

Gretchen

Alexolua Explorer
Alexolua
Posted

Yeah.. the odds are much much greater for developing celiac disease. Though throwing out personal experience, after about 10 years I haven't developed celiac disease, when my symptons first started.. of course, my symptons have gotten so bad, really can't live life.. so, even if you don't officially develop celiac disease, being off gluten is a good thing. =)

lovegrov Collaborator
lovegrov
Posted

Yep, if you can't function or you feel like crap all the time, I don't reckon it matters what they call it. You still need to avoid gluten.

richard

Stoole Newbie
Stoole
Posted

Thanks for the help, everyone.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mmoc
      - Mmoc replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Blood tests low iGA 4 years later digestive issues

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to...
    3. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies...
    4. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted...
    5. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)

      Have you had your 25(OH)D vitamin D blood level checked? Vitamin D deficiency occurs in 40 - 60% of western societies. It is even more common in Celiac Disease because of malabsorption syndrome. Appropriate intake of vitamin D or skin production from sun, increases the absorbtion rate of Calcium.and phosphorus, two minerals crucial to...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748
    LizzieE
    Newest Member
    LizzieE
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      Gluten free nuts

      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.