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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Publications & Publicity
      1

      Coeliac UK Research Conference 2025

      Thanks for sharing this!
    3. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared....
    4. trents
      - trents replied to Mmoc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Blood tests low iGA 4 years later digestive issues

      Keep us posted.
    5. Scott Adams
      0

      Celiac.com Video News: November 2025

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • 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.