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

Wondering What This Could Mean

daltons

By daltons
in Coping with Celiac Disease

Recommended Posts

daltons Rookie
daltons
Posted

When my step son was diagnosed with Celiac, my husband and I decided that we were going to try the gluten free diet to see what effect it had on us, so we tried last week. My husband was unable to stick with it for one day, but I ate gluten free for about 4 days. Over the weekend we went out to eat and I ate a very small amount of gluten on Sat. night, and then a little larger amount on Sunday afternoon (Superbowl....). I had horrible stomach cramps all night Sunday night and a little diarrhea late Sun. night and Mon. morning. I've since gone back to eating gluten free. During the four days I was gluten free, after the first day or two, my stomach felt much better and I did have more energy. I have no idea if that had anything to do with going gluten free, but it seemed to. Could this mean that I have a gluten intolerance, or is this something that would happen to anyone? I don't think that I have Celiac disease, is gluten bad for pretty much anybody?

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

Of course it could mean you have a gluten sensitivity. Eating gluten-free can't hurt you and if you feel better eating gluten-free, then you should do it. Now my mom eats gluten-free with my dad, yet when they go to Senior Dinners and the like, she eats gluten and it doesn't effect her, so I would say, you just may need to be gluten-free.

daltons Rookie
daltons
Posted
  • Author
Of course it could mean you have a gluten sensitivity. Eating gluten-free can't hurt you and if you feel better eating gluten-free, then you should do it. Now my mom eats gluten-free with my dad, yet when they go to Senior Dinners and the like, she eats gluten and it doesn't effect her, so I would say, you just may need to be gluten-free.

Well, one of the reasons I ask is because I have read so many conflicting things about going gluten free when you don't have celiac. I've read that it can be harmful to your body, but then I've read that about 99% of people should eat gluten free. I think I am going to continue with the diet and see if there are any other improvements. Anyway, thanks for the reply.

happygirl Collaborator
happygirl
Posted

Eating gluten free, even for someone who does not have a gluten problem, is NOT unhealthy. As long as they eat a well rounded diet and are getting similar nutrients from other sources, most people will be fine. There is nothing that gluten has in itself that you cannot get from another product.

However, some doctors think that the diet is restrictive and don't think people should be on the diet unless they have a reason to be.

If you want to be tested for Celiac, you must continue eating gluten. Otherwise, the tests will not be accurate (i.e., a negative won't really tell you if you are really negative).

All that being said, you don't need a doctor's diagnosis to eat gluten free. Many on this board feel better on a gluten free diet, whether it is due to Celiac, non-Celiac gluten intolerance, gluten allergy...and many others have never been tested or have had inconclusive results.

blueeyedmanda Community Regular
blueeyedmanda
Posted

There are so many foods that are naturally gluten free so I can't see why people say the diet is unhealthy for non-celiacs. I do believe that our diet does lack some nutrients so as long as you are getting a balanced diet there shouldn't be a problem.

If being gluten free is making you feel better all around, well thats enough of a reason to keep going. :)

CMCM Rising Star
CMCM
Posted

I've done a LOT of reading on gluten and celiac disease, etc. and one thing is emphasized over and over: There is ZERO need to eat wheat/rye/barley...the main gluten grains. Wheat is actually POISON....if you put gluten into a petri dish with human tissue, the gluten attacks the tissue. Gluten containing grains have only been eaten for a small part of human history...enabled by the development of agriculture, cultivation, and with the advent of processing machinery....all fairly recently. Therefore, humans had a very LONG history of eating no grains. The agricultural/advertising folks want to convince you that these grains are necessary to get adequate fiber in your diet, but actually, more than enough fiber can be eaten via vegetables (particularly raw ones) and fruits.

New research is pointing to the idea that at least 80% of Americans are gluten sensitive, and a smaller amount...perhaps 3 to 5% are celiac. Gluten sensitivity causes an unbelievable number of symptoms, many of them unrelated to the digestive system.

I suggest getting the very readable book called "Dangerous Grains" (on Amazon, about $10). It will really open your eyes to the whole thing. It lists over 200 symptoms/conditions that can be/often are related to eating gluten.

From your description, you certainly sound gluten sensitive at the very least. My feeling after all the reading I've done is this: People would be much better off not eating wheat/rye/barley at all. I think our daily gorging on gluten containing foods is largely behind the very recent epidemic of diabetes and overweight among children, and the general overweight condition of Americans. Remember that gluten is also very very addictive, and most people are eating in in all sorts of products multiple times per day. This keeps the body in a continual state of inflammation as the body tries to deal with this poison inside the digestive system.

lonewolf Collaborator
lonewolf
Posted

It's very possible that you could be gluten sensitive. And I agree that you DON'T need gluten grains to be healthy. I've been off wheat (and eaten very little gluten) for almost 11 years now and am healthy. If you feel better gluten-free or gluten "lite" then stick with it. It will help your step-son too to see that he's not the only one eating that way.

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted

I might add that my celiac mom was diagnosed in 1969...not a single intentional gluten grain has passed her lips since then...and she's a very healthy, happy, young looking 86 year old! So 37+ years without grains hasn't hurt her a bit! :P

Guest happynwgal
Guest happynwgal
Posted
I might add that my celiac mom was diagnosed in 1969...not a single intentional gluten grain has passed her lips since then...and she's a very healthy, happy, young looking 86 year old! So 37+ years without grains hasn't hurt her a bit! :P

Wow, what a great thing to hear about your mom - 37 years on gluten free! Good for her. Just goes to show that grains are NOT needed to be healthy.

Guest happynwgal
Guest happynwgal
Posted
When my step son was diagnosed with Celiac, my husband and I decided that we were going to try the gluten free diet to see what effect it had on us, so we tried last week. My husband was unable to stick with it for one day, but I ate gluten free for about 4 days. Over the weekend we went out to eat and I ate a very small amount of gluten on Sat. night, and then a little larger amount on Sunday afternoon (Superbowl....). I had horrible stomach cramps all night Sunday night and a little diarrhea late Sun. night and Mon. morning. I've since gone back to eating gluten free. During the four days I was gluten free, after the first day or two, my stomach felt much better and I did have more energy. I have no idea if that had anything to do with going gluten free, but it seemed to. Could this mean that I have a gluten intolerance, or is this something that would happen to anyone? I don't think that I have Celiac disease, is gluten bad for pretty much anybody?

I was just diagnosed with gluten intolerance and I am SURE that you will NOT get hurt being on a gluten free diet if you are not sensitive to gluten.

Sounds to me like you might be, though. Somebody else suggested you continue eating gluten and get diagnosed - it is just a simple bloodtest that comes back in just a few days. It will tell you if you are gluten intolerant. If the answer is yes, then you can discuss with your doctor if you should go on to the biopsy to see if the villi inside your gut has been damaged. I chose not to do that, because it is enough for me to know I should stay off gluten. Celiac/gluten intolerance is same treatment - my nephew is diagnosed Celiac, so I probably am, too. Runs in families... My brother, whose son is celiac, is probably an undiagnosed celiac - but refuses to have it looked into.....

Good luck! And welcome to this friendly community... I am thrilled with what I am learning here. Gives me hope that I will be able to live gluten-free for the rest of my life.

daltons Rookie
daltons
Posted
  • Author
I was just diagnosed with gluten intolerance and I am SURE that you will NOT get hurt being on a gluten free diet if you are not sensitive to gluten.

Sounds to me like you might be, though. Somebody else suggested you continue eating gluten and get diagnosed - it is just a simple bloodtest that comes back in just a few days. It will tell you if you are gluten intolerant. If the answer is yes, then you can discuss with your doctor if you should go on to the biopsy to see if the villi inside your gut has been damaged. I chose not to do that, because it is enough for me to know I should stay off gluten. Celiac/gluten intolerance is same treatment - my nephew is diagnosed Celiac, so I probably am, too. Runs in families... My brother, whose son is celiac, is probably an undiagnosed celiac - but refuses to have it looked into.....

Good luck! And welcome to this friendly community... I am thrilled with what I am learning here. Gives me hope that I will be able to live gluten-free for the rest of my life.

Wow, thank you for all the replies. I am very health conscious, so I want to be sure I'm not harming myself in any way. I have noticed though, that since going gluten free that my face has been breaking out pretty badly. Anyone else have this problem? I'm sure it's just the change in diet and hopefully once my body gets used to it, it will go away.

TygerCubs Rookie
TygerCubs
Posted
Wow, thank you for all the replies. I am very health conscious, so I want to be sure I'm not harming myself in any way. I have noticed though, that since going gluten free that my face has been breaking out pretty badly. Anyone else have this problem? I'm sure it's just the change in diet and hopefully once my body gets used to it, it will go away.

My face broke out too. It seems to be clearing up now.

TestyTommy Rookie
TestyTommy
Posted

I agree that there is NO downside to eating gluten-free, even if you have don't have celiac.

When I was being diagnosed, I remember reading how doctors insist that everyone get a biopsy before they take the "extreme" step of going gluten-free, and I couldn't figure out why they thought it was such a big deal. Compare to how sick I was (and how many weird things I had tried in desperation) eating gluten-free seemed pretty trivial.

What I've realized (and confirmed by conversations with doctors) is what a warped view of humanity doctors have. Doctors spend the overwhelming amount of their time with people who are trying to kill themselves -- smokers, drinkers, drug addicts, morbidly obese people. Doctors assume that everyone who sees them is stupid, lazy and uncooperative. That's why many of them don't bother telling diabetes patients that their disease can be managed thru diet. Why bother? Patients are all non-compliant whiners

I think the doctors who think eating gluten-free is extreme or dangerous say that because, for the 'typical' patient, trying to eat gluten-free would be impossible. Doctors don't have any first-hand experience with people like us who actually WANT to be healthy and will work to do so.

sfm Apprentice
sfm
Posted
Wow, thank you for all the replies. I am very health conscious, so I want to be sure I'm not harming myself in any way. I have noticed though, that since going gluten free that my face has been breaking out pretty badly. Anyone else have this problem? I'm sure it's just the change in diet and hopefully once my body gets used to it, it will go away.

Just a note - my face broke out when I first went gluten free - but since has gotten better, and is much less prone to breakouts. I've been gluten free since just before Thanksgiving.

I hope that helps.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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.