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

Is it worth getting tested?

Tbetteridge

Recommended Posts

Tbetteridge Newbie
Tbetteridge
Posted

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

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

Celiac.com Sponsor (A8-M):


Fundog Enthusiast
Fundog
Posted

I feel your pain.  Literally, I do.  It all comes down to us each as individuals.  I get "The Rash" and after both blood test and the skin biopsy came out negative, the next step would have been endoscopy.  But I have been fantasizing about a wall "mural" made of sandpaper for 16 years, and had already given myself cellulitis.  Could I stand to go back to eating gluten for three months?  Unthinkable!  So all I know is, gluten makes me want to skin myself alive.  And I'm not alone.  There are several on here who are undiagnosed or self diagnosed.  Good luck in whatever you decide. :)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I'm thinking it won't change my lifestyle, I already avoid gluten like the plague. Two of my children are gluten intolerant as well as have other food allergies. So I know what to look for. For me it came on within the last 6 months. My whole house is now gluten-free, even my husband is on board as he sees how much more pain this causes me. (It doesn't cause my children nearly the pain/symptoms that I get, which is why I think I have celiac vs an intolerance). 

cyclinglady Grand Master
cyclinglady
Posted

Only you can decide if it is worth getting an official diagnosis.  

I can tell you that I am officially diagnosed (3 years).   Just a lucky catch during my GI consult for a routine colonoscopy (Yep, am over 50).  Anemia was my only known symptom.  No tummy issues.  My hubby went gluten-free 15 years ago when my allergist and his GP suggested going gluten free.  It worked.  The first year was a struggle of doubt and cheating on the diet though.  He would be the first to tell you that I have had it easier from family, friends , and medical regarding support.  Will he do a gluten challenge?  No.  He is thankful for my diagnosis.  Now, our daughter gets tested every few years and her doctor does not hesitate to check.  celiac disease is genetic.  It can be symptom free. It can cause unknown damage (I have had fractures from osteoporosis.)  Accommodations from schools (even university dorms), is necessary and a diagnosis paves the way.  

Again, it is a individualized decision.  I wish you well.  

cstark Enthusiast
cstark
Posted
12 hours ago, Tbetteridge said:

I know I react to gluten. Severely. Is it worth getting tested and having to go back to eating gluten?  I accidently consumed something last night and now i feel as though I am dying. That was one tiny item!  I can't imagine purposefully eating gluten for several weeks for a blood test and biopsy. 

I am right with you.  I had the blood test and found the intolerance.  However, if I do go for the biopsy (don't think I will), I would have to be on gluten and that sends my body completely out of whack.  I don't have "the rash" of GI issues, but I do experience the neurological side of consuming gluten.  Not fun by any sort of the imagination!

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

cstark Enthusiast
cstark
Posted
18 minutes ago, Tbetteridge said:

My husband wants me to get tested but I am not sure I can go back to that hell.  It is even worse now that I have been off gluten for 3 months.  The cross contamination I had the other night was enough to make me think I was dying.  I pretty much was living in the bathroom for 24 hours and then the gas, bloating, and burping continues for another 24 hours after that,  Who knows what it is actually doing to my intestines!

When you go off gluten and then accidentally get cross-contaminants, your body will go into hyper drive to get the poison out of system because it was starting to get used to operating without the gluten.  It stinks during the reaction time, yes, but hang in there. :) 

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

Celiac.com Sponsor (A8-M):


mama.liz07 Apprentice
mama.liz07
Posted

I'm essentially in the same situation you are, except my blood test came back negative.  I don't think I need the definitive diagnosis to eat like I have celiac (i.e. be really careful and not cheat).  I have two family members with celiac (one with a negative blood test too) and when I went off gluten I felt better than I've felt in years...and then when I ate gluten recently I felt awful again (still do).  My body does not like gluten and I likely have the gene for celiac disease.  I could even get tested for the gene which wouldn't require going back on gluten.  Positive gene, body hates gluten...that'd be enough for me.  But, if you need a more definitive, standard diagnosis I guess you do what you have to do.  Every situation is different.   Hope you feel better soon!  :-)

Tbetteridge Newbie
Tbetteridge
Posted
  • Author

I have had dna gene testing done, for other reasons and I have both genetic markers for celiac!

cashs mom Rookie
cashs mom
Posted

I went gluten free a year ago to see if it helped with some of the issues I'd been having.  It did help with some, not so much with others.  But overall, I think I'm doing much better without gluten.  It's a personal decision but I've decided not to go back on gluten to have the blood tests done.  There is no cure or treatment other than what I am doing now so I don't see the point of putting myself and my husband thru the misery of going back on gluten just to get a diagnoses.  But as I said, its a personal decision.

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.