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

Any help at all would be amazing, I'm desperate! :)

Sarah.e.may9602

Recommended Posts

Sarah.e.may9602 Newbie
Sarah.e.may9602
Posted

Hi,

I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps :)

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

Celiac.com Sponsor (A8-M):


Abir Mjarkash Newbie
Abir Mjarkash
Posted

Hello sara :)

Im sry for what u r passing through!

I recommend u to get back to a gluten containing diet for a period of time and then repeat the anti endomesial and anti trasglutaminase tests to rule out whether it's celiac disease or not and make an endoscopy to make sure ur intestines aren't damaged

All the best and hope u recover soon :)

cyclinglady Grand Master
cyclinglady
Posted

Welcome Sara! 

It sounds like you may not have had the complete celiac blood panel.  It sounds like your doctor is woefully mis-informed!  Why bother testing when you have been gluten free?  Can he not read Dr. Google? (My neighbor is an ER doctor and he consults with a medical version of "Dr. Google" at times because doctors are supposed to know how to research besides cramming all the medical information into their heads.)  

Anyway, you can either get back on gluten and get re-tested (must be on gluten for 8 to 12 weeks) or stay gluten free.   The University of Chicago's celiac website is the most consumer friendly (besides knowing their stuff).  Study this page and the other pages.....

Open Original Shared Link

If you continue to stay gluten free, it's for life.  Read every label.  Research and study up!   There is a steep learning curve.  Our Girl Scout troop studied Australia.  We tired the Vegemite for fun.  But not me.  It contains gluten.  Just reinforcing that you must know for sure if whatever you are eating is gluten free.

Abir gave you some good advice too!  

Take care.  

 

GFinDC Veteran
GFinDC
Posted

Hi Sarah,

I agree with cyclinglady, your doctor doesn't seem to understand celiac disease.   Maybe you can check on Google for a local celiac support group.  Ask them if they know of any good celiac doctors in your area.

The usual testing process for celiac is 12 weeks of eating gluten and then a blood test followed by an endoscopy later.  You are right, if you weren't eating gluten before the test it was not reliable.

Welcome to the forum! :) 

boron Rookie
boron
Posted

Sarah, if your pain (and tenderness) is mainly in your upper left abdomen, you may have "gas pain" or with a fancy term "splenic flexure syndrome" (splenic flexure is a part of colon that runs near the spleen).

Open Original Shared Link

The pain is caused by a collection of gas in that part of the colon - in people with "sensitive" colon, often diagnosed with irritable bowel syndrome.

The main two triggers of pain seem to be anxiety and certain foods: mainly those that either cause gas or make you constipated. You need to find out which foods or ingredients irritate you personally, for example, foods high in fiber (either soluble or insoluble), dairy, chocolate, soft drink... 

Stephanie78 Newbie
Stephanie78
Posted

Hello everyone I do not have celiac but I do have an allergy to wheat I have been gluten-free on and off for the past few years,more off than on.. But recently I decided I was tired of the swelling and looking pregnant ! So I am gluten-free again, now here is the tmi part.... I have been gluten-free for about 2 weeks now and today I noticed my stool is pale in color... Right now Google is NOTmy friend and quite frankly scaring the dickens out of me.. Does anyone out there know if this is normal??

cyclinglady Grand Master
cyclinglady
Posted
33 minutes ago, Stephanie78 said:

Hello everyone I do not have celiac but I do have an allergy to wheat I have been gluten-free on and off for the past few years,more off than on.. But recently I decided I was tired of the swelling and looking pregnant ! So I am gluten-free again, now here is the tmi part.... I have been gluten-free for about 2 weeks now and today I noticed my stool is pale in color... Right now Google is NOTmy friend and quite frankly scaring the dickens out of me.. Does anyone out there know if this is normal??

Frankly, this is a conversation you should be having with your doctor.  I wish you well.  

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

Celiac.com Sponsor (A8-M):


Stephanie78 Newbie
Stephanie78
Posted

I don't have insurance and the doctor I have I'm self pay and I can barely afford him and my monthly meds .. I thought I could come on here and see if anyone else has experienced the same thing after switching to gluten-free ..

Fundog Enthusiast
Fundog
Posted

Stephanie, do you drink a lot of milk?   During my time working in a daycare center, several of the children had very pale to white stools, from drinking the large quantities of milk the state required the center to serve.

 

cyclinglady Grand Master
cyclinglady
Posted
15 hours ago, Stephanie78 said:

I don't have insurance and the doctor I have I'm self pay and I can barely afford him and my monthly meds .. I thought I could come on here and see if anyone else has experienced the same thing after switching to gluten-free ..

Any change in your diet can change your bowel habits.  For example, vets will tell you to phase in a new dog food instead of an abrupt change.   Eat too many Oreo cookies and your stool can change color.   Too much broccoli can make you gassy.  

Try to stick with naturally gluten free foods for a while until your body adjusts.  Avoid processed gluten-free foods.  You might be reacting to all the additives and preservatives that can resolve once your gut is healed.  

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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.