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

Gluten-Free Newbie ... Need Assistance

BlessedChef

Recommended Posts

BlessedChef Newbie
BlessedChef
Posted

Hello - I am a gluten-free newbie and been almost "perfectly" gluten free since end of April 2010. I love my Braum's breakfast bagel, but have discovered that I have to go completely gluten-free. My system reacted BIG time!!

I went gluten-free because my husband's doctor was trying to find a "cure" or something to possibly help with his Peripheral Neuropathy. He's bad at being gluten-free, it's a bad thing when you spend a lot of time on the road and most fast food restaurants are not gluten-free. I make his lunch, but those snack urges are hard to fight! :)

I now cannot eat gluten, which is kind of funny to find this out now at the age of 44. It's strange to have this happen now and not earlier in life have it bother me. I do not know if I can be tested because I do not have a lot of gluten in my system right now.

I have been told taking an enzyme would help if you have eaten gluten. I was given a newsletter that had the Mayo Clinic talking about Gluten Sensitity Formula.

Can I be tested still and has anyone heard of this enzyme?

THANK YOU!!!

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

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

If you've still been eating a bagel each morning you can still definitely be tested.

As far as enzymes go, I don't think there's much evidence of those enzyme things working at all for gluten problems.

Takala Enthusiast
Takala
Posted

Hello,

As you are discovering, if you are gluten intolerant or celiac, you can't do this incompletely.

There are gluten free bagels. If you chose to use or bake your own gluten free breads, you will need a gluten free dedicated toaster to cook them in.

The tests are not absolutely definitive. Some people still have a real gluten problem but for odd reasons don't have a positive blood test. I am one of them, I finally had my brain scanned and they found brain lesions, aka "bright spots," which the neurologist still insisted didn't mean anything re celiac or gluten, I concluded after getting the test results and having to fight for an appointment for followup, she was an idiot and self diagnosed based on all the other evidence/symptoms/research, I don't recommend this but people do what they have to do. I haven't been genetically tested but I fall into all the right ethnic groups to be a very likely carrier, about a third of the population carries the HLA DQ genes now that are associated with gluten intolerance or celiac, although only a small percentage get triggered into developing the disease. It is thought that now the incidence can be as high as 1 in 100 people getting it.

Many American insurances want a positive blood test for the antibodies to gluten proteins, before they will do a biopsy of the lining of the small intestine, and they will try to insist you can't be diagnosed without one. Some people get a rash called DH. Biopsy of that can also be a diagnosis. Guess what. I had a small and persistent patch of this for years, wrote it down on many prescreening surveys, and NOBODY thought to do this, either.

It is not unusual to go for a very long time before either being diagnosed or figuring it out after developing all the other side effects and related diseases.

Re the "gluten sensitivity formula" I found the newsletter huckstering this enzyme formula on the internet and it is a bunch of hooey. But it was written cleverly. Be cautious of dot com websites that are commercial in nature.

I can go thru and debunk each claim:

___________

"Mayo Clinic says celiac four times more common than in the 1950's." No. Yes, more common, no, wrong math.

"They have gluten intolerance, not an immune disease." NO. big mistake there.

"Misinformation about gluten can make this nearly impossible." Yes, and this totalhealthbreakthrough site is contributing.

"Some gluten myths are from so called experts." Oh, really ? Experience trumps theory everytime.

"The next time you

Skylark Collaborator
Skylark
Posted

I agree with Takala DPP-IV fad is a dangerous piece of psuedoscience.

Alvine Pharmaceuticals is testing an enzyme-based drug, but DPP-IV is not one of the enzymes, and the drug is too early in clinical trials to get an idea of whether it will work.

You need to get tested, then find a substitute for your breakfast bagels. The Glutino ones are pretty good. I like the poppyseed.

BlessedChef Newbie
BlessedChef
Posted
  • Author

WOW!!!! THANK YOU BOTH!

I am so new to all of this and APPRECIATE all of this information.... I needed this because I am so new to researching anything and everything I can about Gluten-Free lifestyle and if there are any type of "enzymes" that would help with the pain of the accidental gluten in my system.

As many of you probably have experienced, it's a horrible feeling!

I google search and read all of the forums and blogs I can about Celiac and non-Celiac Gluten Sensitity/Intolerance I can. I have checked out various books from the library also, plus purchased two that sparked my interest.

THANK YOU AGAIN!!!

Mari Contributor
Mari
Posted

Hi BC,

The blood tests are not always positive - a more sensitive test is the fecal antibody tests offered at Enterolab.com. And while looking at their informative website look at the genetic DNA marker tests which you do not have to be glutened to have. If you choose to have blood tests be sure they test for anti-gliadin antibodies and tissue transglutaminase.

Skylark Collaborator
Skylark
Posted

Hi BC,

The blood tests are not always positive - a more sensitive test is the fecal antibody tests offered at Enterolab.com. And while looking at their informative website look at the genetic DNA marker tests which you do not have to be glutened to have. If you choose to have blood tests be sure they test for anti-gliadin antibodies and tissue transglutaminase.

If you feel like you need a piece of paper, Enterolab will almost certainly find something. Can't say I'm convinced it means much. I always advise folks who have already figured out they can't eat gluten to listen to their bodies (that's the ultimate test anyway) and spend the $350 on new cutting boards, a new toaster, a nice rice cooker, gluten-free cookbooks, and some gluten-free goodies instead. ;)

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.

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


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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.