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. Gluten Intolerance

laura3377

Recommended Posts

laura3377 Rookie
laura3377
Posted

I have been tested for Celiac by my Dr. and was negative although my TTG was borderline positive (one point below a positive score). I also had a endoscopy and biopsy which were negative. I have been having trouble with gaining weight, floating stools, oil in water with bowel movements (not always), many vitamin deficiencies - potassium, calcium, iron, B12, Vitamin D and some other symptoms. If I don't have Celiac what could be causing these symptoms? Could a gluten intolerance cause malabsorption? I've been tested for other things that could cause malabsorption and they are all negatvie. My stool test ordered by my Dr. showed no malabsorption but I know that I have a problem. I was fine up untiil a couple of years ago and now my digestion and health are a mess. Any words of advice?

Thanks!

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

Celiac.com Sponsor (A8-M):


C'smum Newbie
C'smum
Posted
I have been tested for Celiac by my Dr. and was negative although my TTG was borderline positive (one point below a positive score). I also had a endoscopy and biopsy which were negative. I have been having trouble with gaining weight, floating stools, oil in water with bowel movements (not always), many vitamin deficiencies - potassium, calcium, iron, B12, Vitamin D and some other symptoms. If I don't have Celiac what could be causing these symptoms? Could a gluten intolerance cause malabsorption? I've been tested for other things that could cause malabsorption and they are all negatvie. My stool test ordered by my Dr. showed no malabsorption but I know that I have a problem. I was fine up untiil a couple of years ago and now my digestion and health are a mess. Any words of advice?

Thanks!

C'smum Newbie
C'smum
Posted

I have family members that have the same symptons as you with negative test results as well as some members including myself positve for celiacs.I can only suggest as long as you are not due for more testing is to go gluten free for a month and see how you feel.

AndreaB Contributor
AndreaB
Posted

If you aren't planning on further testing then go gluten free for some time (at least 1 month, preferrably 6) and see if you notice any changes for the better.

Other things can cause malabsorption but gluten free may be all the further you need to go. If symptoms don't resolve you'll need to dig deeper. For my family it was metals, but soy can also cause problems if you eat it.

If you can swing it I'd reccomend dairy and soy (if you eat it) free as well then add one at a time back in about 1 week apart, 2 weeks if you want to see if you have a threshhold that's crossed given time. Some people can eat foods that bother them on occasion (such as dairy) but not regularly.

Rosebud710 Apprentice
Rosebud710
Posted

I'm relatively new at this, but here are my thoughts . . .

I consider myself gluten intolerant. I don't get immediate reactions when I eat gluten, it just slowly breaks down my immune system. So I just get sick easier if I keep eating gluen foods. If I eat too much gluten, like days on end, then I'll start getting a reaction. But I think celiacs have the immediate, digestive irritability than those who have an intolerance to gluten.

Hope this helps B) !

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm relatively new at this, but here are my thoughts . . .

I consider myself gluten intolerant. I don't get immediate reactions when I eat gluten, it just slowly breaks down my immune system. So I just get sick easier if I keep eating gluen foods. If I eat too much gluten, like days on end, then I'll start getting a reaction. But I think celiacs have the immediate, digestive irritability than those who have an intolerance to gluten.

Hope this helps B) !

Rosebud

The majority of people with celiac disease or gluten intoleance do not have symptoms that show up immediately. Gluten reactions are delayed for many whether 'celiac' or 'gluten intolerant'. Gluten causes an immune mediated response, this creates other autoimmune problems because the body starts to attack itself in the fight against gluten. The real difference between gluten intolerance and celiac as far as the medical community is concerned is villi destruction. If your villi are not destroyed you are considered gluten intolerant. Many are starting to realize that gluten effects the entire body and that the villi destruction is only one factor of the disease, and usually appears in the later stages. A lot of damage is done for many of us before we get to that point.

Laura, You should give the diet a try regardless of the outcome of your testing. You have nothing to lose and testing unfortunately misses a lot of us. Whether you are technically gluten intolerant or have progressed to full blown celiac the 'prescription' is the same, the gluten free diet. And the only way to know for sure if it will help you is to try it for a couple of months strictly.

Many of us do not show up in blood work, even folks who were diagnosed by endoscopy but you did. One point into positive is positive. Two of my family members had results that low and have seen fantastic resolution of their problems, I didn't show up positive at all and I am the one who was almost killed by this disease. Try the diet.

Rosebud710 Apprentice
Rosebud710
Posted

Ravenwoodglass,

Thanks for clarifying that for me!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Ravenwoodglass,

Thanks for clarifying that for me!

It is sooo confusing at first.

It doesn't help that in general the medical professionals know less about celiac than those of us who have been diagnosed and researching for years. Too bad many won't even take the time to look at valid research even if we shove it under their noses in black and white.

JennyC Enthusiast
JennyC
Posted

I personally think that people are being diagnosed with gluten intolerance because of low quality testing methods. Classic intolerance is the inability to digest something and then digestive issues result from the overgrowth of bacteria or the osmotic activity caused by the undigested food in the gut. Intolerance is not an autoimmune disorder. If someone is intolerant they should have a low tTG and not show symptoms of autoimmune disorders. I think celiac testing must not be adequate. That being said, I don't know how to improve the testing methods. ;) It seems to me that if serology numbers are elevated above normal mid range and there are symptoms or family history of celiac disease, then a person is most likely celiac. There are too many people on here with too severe of symptoms to be considered simply intolerant. In my personal opinion there needs to be research done to come up with more accurate testing methods.

Sorry for the rant.

grommet Newbie
grommet
Posted
I personally think that people are being diagnosed with gluten intolerance because of low quality testing methods. Classic intolerance is the inability to digest something and then digestive issues result from the overgrowth of bacteria or the osmotic activity caused by the undigested food in the gut. Intolerance is not an autoimmune disorder. If someone is intolerant they should have a low tTG and not show symptoms of autoimmune disorders. I think celiac testing must not be adequate. That being said, I don't know how to improve the testing methods. ;) It seems to me that if serology numbers are elevated above normal mid range and there are symptoms or family history of celiac disease, then a person is most likely celiac. There are too many people on here with too severe of symptoms to be considered simply intolerant. In my personal opinion there needs to be research done to come up with more accurate testing methods.

Sorry for the rant.

Jenny you raise some interesting points. I don't have answers by the way - just further musings :huh:

I've not been diagnosed with celiac disease (neg bloods neg biopsy). My Gastro did not recognise GI so I diagnosed it myself. wish I'd just gone gluten-free straightaway when i suspected it was that that was causing the problem. Any ho hum...

However I am very poorly when eating gluten. Not just S & D but aching joints, fuzzy head, extreme fatigue. migraines; these would seem like malabsorption issues. I also feel that my immune system is definitely affected ( I have another illness that is worse when my immune system is low).

I go round in circles with this - if I haven't got damged villi then how do I get the malabsorption. If intolerance is not an auto immune condition then why do i feel my immune system is affected etc etc.

This article is interesting : Open Original Shared Link

Also there are 3 other close family members with different symptoms - all better when gluten-free. So intolerance can be hereditary!?!

hathor Contributor
hathor
Posted

It doesn't help when definitions or diagnostic criteria vary, does it? I have symptoms, a dietary response, and the relevant antibodies (albeit it was fecal testing) but not the so-called celiac genes. Wouldn't the presence of antibodies indicate an immune response? My genes are linked to neurological damage due to gluten, which seems kind of autoimmune to me. I also have (or had in January ...) malabsorption, according to Enterolab.

But there are plenty of doctors who would tell me I cannot have a problem with gluten.

I've heard some people refer to this as gluten sensitivity, rather than intolerance, to try to draw a distinction with classic intolerance, like lactose intolerance.

Anyway, laura3377, you could have had false negatives. That happens. Or the damage just hasn't gotten bad enough to show, but it is bad enough for you to react.

If I were you, I would try the diet and get the Enterolab testing, which is supposed to be more sensitive and show a reaction to gluten earlier than the traditional celiac tests. (You also don't have to be eating gluten.) You can have them test for casein and soy at the same time. Also, have you been taking probiotics? Those can help with a variety of digestive issues and they can't hurt you.

Your reaction to the diet is the ultimate test. It isn't as if there is any danger from omitting gluten (dairy/soy -- if you choose to go that far). And it isn't as if changing your diet stops you from doing what your doctors are recommending, since it sounds like they don't have a clue or a solution. It sounds like a situation where a little self-help is warranted.

laura3377 Rookie
laura3377
Posted
  • Author

Thank you so much for all of the great responses! I think I will try to the gluten-free diet and see if I notice a difference. I have been "gluten-light" off and on for the past couple of years while trying to get a hold on all of the health problems I have been experiencing. However, I haven't managed to stay off gluten totally for any period of time. I will have to do a lot more meal planning but if this helps me to feel better it will be worth it.

  • 8 months later...
SIBLING/DAD Newbie
SIBLING/DAD
Posted

I have a father and sister both diagnosed with Celiac. I'm in the process of getting retested. I was tested 5 years ago but didn't come up positve. Have you heard how often family members should be retested?

Rosebud

The majority of people with celiac disease or gluten intoleance do not have symptoms that show up immediately. Gluten reactions are delayed for many whether 'celiac' or 'gluten intolerant'. Gluten causes an immune mediated response, this creates other autoimmune problems because the body starts to attack itself in the fight against gluten. The real difference between gluten intolerance and celiac as far as the medical community is concerned is villi destruction. If your villi are not destroyed you are considered gluten intolerant. Many are starting to realize that gluten effects the entire body and that the villi destruction is only one factor of the disease, and usually appears in the later stages. A lot of damage is done for many of us before we get to that point.

Laura, You should give the diet a try regardless of the outcome of your testing. You have nothing to lose and testing unfortunately misses a lot of us. Whether you are technically gluten intolerant or have progressed to full blown celiac the 'prescription' is the same, the gluten free diet. And the only way to know for sure if it will help you is to try it for a couple of months strictly.

Many of us do not show up in blood work, even folks who were diagnosed by endoscopy but you did. One point into positive is positive. Two of my family members had results that low and have seen fantastic resolution of their problems, I didn't show up positive at all and I am the one who was almost killed by this disease. Try the diet.

ravenwoodglass Mentor
ravenwoodglass
Posted
I have a father and sister both diagnosed with Celiac. I'm in the process of getting retested. I was tested 5 years ago but didn't come up positve. Have you heard how often family members should be retested?

Are you symptomatic? In any way? If so get retested. In countries that screen their populations on a routine basis they usually test at around 4, again at puberty and then will retest when a person becomes symptomatic. If you are having issues of any kind your doctor should again run a complete panel. Then no matter what the results you should give the diet a good trial as blood testing does leave a lot to be desired and misses up to 30% of us.

Archived

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

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


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.