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

Does This Sound Like Celiac?

KAG

Recommended Posts

KAG Rookie
KAG
Posted

Been dealing with digestive disorders for 12 years (since I was pregnant with daughter). Diary allergies longer but unknown. Candida problems. Low thyroid. I have been mostly gluten free for 4 years, but still problems. Recently went back to doctor. I alway thought I was celiac, but still having problems. Since I went back to doctor, found out about egg allergies (I feel so stupid that I didn't connect this before).

My new doctor is doing a colonoscopy (previous polyps) and endoscopy. Also blood tests. I need to be on gluten for 3 weeks prior (according to doctor). I was afraid going back on gluten. I have now been eating gluten for 3 days. These are the symptoms I am now noticing:

weight gain (not eating more)

very sweaty palms and feet

feel hot most of the time (have not adjusted throid meds)

constipation

feels like my lungs are bruised when I breath in deap or twist (hard to explain)

hard time breathing like the air is very polluted

I wake up around 3AM like I was jolted awake and hard to get back to sleep (I don't have sleep problems)

acne getting worse

some smelly gas (I found out the eggs were causing most of the smelly gas, did I mention how stupid I feel?)

Does this sound like celiac? It doesn't sound as bad as a lot of what I read here. It does sound like some kind of allergy though, doesn't it? I guess I want to see what the results are going to be from my tests, but then I probably won't eat gluten again afterwards. I want to know for my childrens' sake. It might help.

Kim

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

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Celiacs is such a fun disease! Yes it sounds like you should be tested. Some people gain weight, some lose weight. Some have diarrhea, some get constipated. Acne getting worse makes sense. Your intestines are inflammed so you get acne, others get eczama. My child gets eczama so badly it wakes her up at night scratching it to the point of bleeding. That is from a dairy allergy. Some people have sleep problems too. I get nightmares when I am glutened. It really sucks.

Unfortunately this disease does not have a clear cut list of symptoms, so it is hard to diagnose. And once you are dignosed be prepared for your family to make some pretty bad comments. I have heard it all from my family and we are a very loving and supportive family. (THAT doesn't come from my side of the family!) Eventhough there are tons of autoimmune disease and intestinal problems on that side of the family. Followed by family members refusing to get tested when they have symptoms, then telling me that I am wrong celiacs is not genetic! Best you can do is try to educate them and keep yourself healthy!

Best of luck!

nikki-uk Enthusiast
nikki-uk
Posted

Sorry to point out that 3 weeks back on gluten after being gluten-free IS NOT long enough for you to gain a positive blood test OR biopsy - your doctor is wrong :(

Ideally - you would need to back on a high (at least 4-6 slices of bread) a day for 6 weeks or more for a blood test. Some would say even longer for the endoscopy.

KAG Rookie
KAG
Posted
  • Author

I don't think that I can be on gluten for 6 weeks. I can't live in a hermit shell by myself for that long. (I guess I do have ups and downs when I am eating gluten!) But then that makes no sense either. I want to be diagnosed so that I can see that I am NOT crazy, but being gluten free is so hard. I mean, what is really hard is no gluten, dairy, eggs, alcohol (bad reaction to), processed foods, potatoes, sugar. When I eat really well I know I feel great but why is it so hard? I LOOOOOOVE food. It just doesn't love me.

I guess I'll see what my results are and hopefully they will come back with something.

Until then, I'll enjoy beer and biting people's heads off!

CMCM Rising Star
CMCM
Posted

Each person reacts differently to the effects of gluten poisoning the body...yes, poisoning....that's what is happening. If you continue eating gluten a whole boatload of other sensitivities can start popping out because the gluten is causing your immune system to be increasingly reactive. This happened with me....for simply years and years I thought MY problem was dairy. I knew my mom had celiac disease since I was 16, but since my symptoms weren't so strong and violent as hers, I never suspected celiac disease for myself. But over the years, I had more and more intestinal upset, headaches, asthma, joint aches, lots of stuff. And more and more foods seemed to be problematic. Before I finally figured it all out and got appropriate testing, I was at the point of believing there wasn't much I could eat except perhaps water. Seriously! I was in continual upset, and then I had a very frightening episode of vertigo that scared the dickens out of me. That's when I started really looking at this in a state of desperation. I got tested thru Enterolab, went gluten free, and within a couple of weeks I felt like a new person. Bit by bit, the other sensitivites lessened and at this point, 17 months later, I can actually tolerate moderate dairy again. I have to eat carefully, but most of the time I feel good.

There are so MANY symptoms that can be linked to celiac disease and/or gluten sensitivity. Too many to list, actually! I guess the message is that there is no one set of symptoms that point to celiac disease. For the things you mentioned, it would be good to test for celiac disease. And if you prove to have celiac disease, over time if you go gluten free, you will most likely see your other physical complaints go away, some faster than others, but they could all go away eventually.

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.