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

Not Sure What To Do Next

Melstar23

Recommended Posts

Melstar23 Apprentice
Melstar23
Posted

I am not sure if I have a problem with gluten and I was interested to see if anyone else has any suggestions.

For the last 3 months I have been having increasingly bad pain on my upper left side of my abdomen. I mostly feel the pain in the front, but when it gets really bad I also feel it in the back. The pain always comes in waves, sometimes it is just a discomfort, but other times it is so strong I am doubled up in pain and cannot think or do anything.

When I first went to the dr, he thought it was kidney stones or UTI, but a urine test and ultrasound showed nothing. He told me I just had gastro and sent me off. When it only continued to get worse for a month, I went back and I was sent for 2 more ultra sounds, a CT scan, blood test(I'm not sure exactly what was being looked for), urine and stool test. Nothing was found in any of these tests. I have been told that my next options are to have colonoscopy and if that has nothing, a laparoscopy. One problem is because my only symptom is pain, it will take me about 6months to get in for a colonoscopy and who knows how long for a laparoscopy.

As the pain was getting much worse, I'd been unable to sleep, pain killers were not helping much, I was getting desperate. A friend suggested that I try giving up gluten and dairy. I have done this for almost a week now. The pain has not completely gone away, but it has become much milder. I have only taken panadol twice. I was planning on trying dairy again on the weekend to see what happens with that. I'm not sure if I am doing the right thing avoiding gluten and I don't know what my doctor will say about it. Should I keep avoiding gluten and see if my symptons improve more? Could my pain be related to gluten?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Yes it could be related to gluten. It could also be related to other issues but hopefully your doctor has tested for those issues. Can you call your doctors office and see if they did a celiac panel on you? If they didn't you might want to pick up a lab slip and get those tests done. Do it ASAP because once you have been gluten free those tests will show a false negative. False negatives are not uncommon even on gluten though.

In the long run though if being gluten free takes care of the problem you have your answer. There are quite a few people here that are self diagnosed. Getting relief from the diet is part of the diagnostic process along with a return of issues when gluten is added back in either on purpose, a challenge, or by accident.

Looking for answers Contributor
Looking for answers
Posted

What kind of pain is it? Sharp, gnawing, achey?

I've had on and off pain in my upper left for the past three years. Eliminating gluten and dairy definitely helped, but about three months ago it came back worse than ever, following a week-long vacation in which I was eating little to no food that I typically eat. Well, doctor ran a bunch of tests, including food allergies. It turned out I had a high allergy to eggs, so I eliminated them. It helped some but I was still in agony. I cried every day, and I could find no relief. Having a full or empty stomach made no difference, but I started to lose my desire to eat. Finally, I decided to cut out psyllium husks that I add to my smoothie each day. Within three days the pain was gone and hasn't returned.

What I get is gastritis. It's a gnawing, awful pain in my upper left that often radiates to my back. I'm sharing this with you to consider that something even beyond gluten may be causing this. You may want to try to eat completely different than you normally do (try very bland gluten-free diet for a few days) and see what happens.

If this doesn't help, also consider having your gallbladder ultrasound to ensure you don't have stones.

BTW, while the gallbladder is on the right (I beleive, I could be wrong) my husband, mom and sister all had pain in the left that would come and go.

Archived

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

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


  • Member Statistics

    • Total Members
      131,550
    • 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.