Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Still Suffering Stomach Pains

mom2alex

By mom2alex
in Coping with Celiac Disease

Recommended Posts

mom2alex Newbie
mom2alex
Posted

Hello everyone. We are new to the diagnosis. I have a 22 year old son with Down syndrome.  We have been dealing with stomach issues for about 5 years.  I requested on our last dr visit to have him tested for celiac since he has lost a lot of weight and although eating isn't gaining it back.  The blood test came back positive 2 months ago.  We had a visit with the GI dr 2 weeks ago and have an endoscopy scheduled for next week. 

 

I had heard it was important not to stop the gluten until the endoscopy but his dr said it was ok to stop.  So I have put him on gluten free diet, its been a week. He is still tired all the time.  But what worries me is today he called me at work with such severe pains. The same ones we have had over the past years on and off.  Its in his abdomin and radiates to his right side. 

 

I know the endoscopy will tell us if there is anything else going on but the celiac.  I had really hoped this was the cause and the diet change would help...But gluten free for a week, why the pains today?

 

Thanks for listening, I am still a bit overwhelmed. 

 

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

It can takes months to heal.  It could be another cause. He could have eaten something he didn't realize had gluten (happens a lot in the beginning).

 

Is your doctor willing to diagnose him as having Celiac with a negative biopsy?  If not, I would put him back on gluten until the endo is finished.  Maybe they could do a colonoscopy at the same time to check for other issues and save you a trip?

 

 

Open Original Shared Link

 

How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

While it is best to continue to eat gluten until after the endoscopy, and everyone is different, just wanted to share my experience.  I was gluten-free for three weeks prior to the endoscopy and my biopsy still showed moderate to severe villi damage.  And I didn't even have any obvious symptoms before my diagnosis.  I'm not saying this is the case for everyone, but villi damage does not go away quickly.

GFinDC Veteran
GFinDC
Posted

Hi MomtoAlex,

 

Going gluten-free is not an instant fix to the digestive issues.  Pain can last for months afterwards in some people.  Or it can go away fairly quickly in others.  We aren't all the same and there is a great deal of variability in healing rates and how strictly people adhere to the gluten-free diet too.  If you think of the gut damage like a scraped knee, it can be easier to understand.  If you rubbed a chunk of broccoli across a raw piece of knee, it would hurt.  Or a chunk of steak or a hot pepper.   It's the irritation that causes the pain.  As the gut starts healing many changes are taking pace in the gut flora also.  People sometimes get very bloated and that can cause pain in an irritated gut.  Or spasms can occur in the gut also.  Also it seems that many people who go gluten-free report being more sensitive to gluten after being off it for a little while.  So even tiny amounts can then cause reactions.  A crumb is all it takes to cause the immune system to gear up for a major auto-immune attack on the gut.  And the immune system doesn't stop attacking the day after you ate gluten.  The antibodies slowly reduce over a period of time, most likely weeks to months.  gluten-free isn't the type of diet you can cheat on occasionally.  At least not without consequences.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

bartfull Rising Star
bartfull
Posted

Also, there is a very nasty stomach bug going around right now that includes "double you over" pains.

Archived

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

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


  • Member Statistics

    • Total Members
      131,216
    • Most Online (within 30 mins)
      7,748
    billiam3some
    Newest Member
    billiam3some
    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
      My mo,ther married a bread making when I was 4

      By Scott Adams · Posted

      Your story is a powerful and heartbreaking testament to the profound damage that can be caused by undiagnosed celiac disease and the profound pain of not being believed or supported by family. It is sadly a common narrative within the celiac community to have suffered for years, even decades, while autoimmune conditions stack up, all while being dismissed. To answer your core question: yes, living in a environment with significant, constant gluten exposure, especially from airborne flour in a home where milling and baking occurred, would have created a perpetual state of autoimmune activation for you, even beyond the direct ingestion. This chronic exposure is strongly linked to the development and exacerbation of the very autoimmune disorders you describe—Migraines, Meniere's, Hashimoto's, and more. Your body was under constant attack, and the lack of care and understanding from your family compound that trauma significantly. It is not your fault. Many in the community share similar stories of a cascade of illnesses finally explained by a celiac diagnosis, often coming too late to prevent irreversible damage. While I cannot speak to the legal aspects of your inheritance situation, your experience with the medical neglect and the lasting impact of your childhood environment is deeply valid and shared by others who understand this unique type of suffering. Thank you for having the courage to share your truth. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      7yo struggling!

      By Scott Adams · Posted

      It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out" to "empowered choice." Instead of "you can't have that," use language like "we choose these safe foods so your tummy feels happy and strong." Involve her directly in her own care; let her be the "Gluten-Free Detective" at the grocery store, picking out exciting new treats, or make her the head chef in baking a special dessert that everyone gets to enjoy. When eating out, empower her by having her call the restaurant ahead to ask about safe options (with your help), making her feel in control rather than a passive victim. Acknowledge her feelings—"It's okay to feel sad that you can't have the roll, I sometimes feel that way too"—and then immediately pivot to a positive action, like unwrapping the special brownie you brought just for her. This combination of validation, involvement, and reframing turns a limitation into a shared family challenge where she feels supported, capable, and loved.
    • Scott Adams
      Rice Flakes

      By Scott Adams · Posted

      I know that Shiloh Farms makes this product, but I don't think it is labeled gluten-free.
    • Scott Adams
      Food Allergies

      By Scott Adams · Posted

      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:    
    • Scott Adams
      Diagnosis and further testing Celiac

      By Scott Adams · Posted

      It's strange to see two very different results in what appears to be a single blood test--one is positive and one is negative for a celiac disease test. Are these results separated by time? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...