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 Celiac?


BrittLoves2Run

Recommended Posts

BrittLoves2Run Apprentice

Hello!

I


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



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Could be, or also could be gluten intolerance. In that case, the celiac panel blood tests will come back negative. :ph34r:

If your blood tests come back negative, and you are not getting a biopsy, the next time you get one of those "mystery" rashes have them biopsy the skin next to it for DH, which could get you a positive diagnosis of celiac. After testing has been exhausted, try going on a gluten free diet anyway to see what happens, as your symptoms match having a gluten problem.

Don't forget that all your medications will have to be gluten free, also.

BrittLoves2Run Apprentice

Could be, or also could be gluten intolerance. In that case, the celiac panel blood tests will come back negative. :ph34r:

If your blood tests come back negative, and you are not getting a biopsy, the next time you get one of those "mystery" rashes have them biopsy the skin next to it for DH, which could get you a positive diagnosis of celiac. After testing has been exhausted, try going on a gluten free diet anyway to see what happens, as your symptoms match having a gluten problem.

Don't forget that all your medications will have to be gluten free, also.

So this might seem like a stupid question, but what is the difference between Celiac and Gluten intolerance? What do you do to deal with Gluten intolerance?

I'm really anxious to get to the doctors tomorrow. I don't want to put myself on a gluten-free diet if it's not necessary as it seems like a HUGE change.. and it's also expensive, but i'd like to do anything I can to start feeling better.

Aly1 Contributor

Celiac disease is a manifestation of gluten intolerance where the villi of the small intestine are attacked and a variety of symptoms follow. It is auto-immune in nature. Non-celiac gluten intolerance basically means the bad reaction to gluten effects areas other than the small intestine - and it can really effect any area and cause numerous symptoms from headaches to neurological symptoms to...brain fog and inability to think clearly, lol, which is happening to me right now. Anyway I'm sure others can fill in the blanks. The point is - if your celiac panel comes back negative it means one of two things:1) it was a false negative which is possible or 2) you do not have celiac. There is no way to test for non-celiac gluten intolerance - but it is just as severe and can have a major impact on one's health. So, once you have exhausted all testing - do note, you need to be eating a regular gluten diet in order for celiac tests to show anything - you should try going gluten free for a good stretch of time, at least a month or two. If gluten is a problem for you, you will likely start to feel better quickly.

The symptoms you listed could definitely be gluten-related. I hope they are, so you will be able to start healing ASAP. Good luck.

Aly1 Contributor

Ps. Yes it's hard, but believe me, we wouldn't all be eating that way if it didn't make us feel So Much Better. And that's pretty much priceless!

Aly1 Contributor

And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause. You've found a great resource here on this forum, the people here are so helpful and can offer guidance every step of the way.

BrittLoves2Run Apprentice

And another note - if gluten does Not turn out to be a problem for you - I get deep aching pain in my bones from eating sugar and variety of other things too lengthy to list here. I also got it from gluten. Point is there are many things that we eat that can cause pain and do harm so gluten may not be the end of your need to explore diet as a possible cause. You've found a great resource here on this forum, the people here are so helpful and can offer guidance every step of the way.

Thanks for your response! I had my doctor appointment this morning. My doctor seemed very apprehensive about testing me for Celiac. He basically said it's a pain in the butt to diagnose. I get that, but I'm sick! and i'm tired of being sick. So I insisted that we do it anyway. He asked me if my family had any problem with Thyroid problems. I never thought about the correlation. Every woman in my family has an underactive thyroid and my mom has a lot of the same gastro problems as I do. So he did the Celiac panel and a thyroid test. I'll see what comes of it.


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.


  • 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
      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
      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
      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
      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
      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.