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

How To Help Family Cope!


sheilaamistone

Recommended Posts

sheilaamistone Newbie

I have been gluten free for about 5 years. I am a female who needs advice from men who get severe cramping followed be diarrhea, on how to compare the pain of the cramping to other pain a man might feel. My husband is great, but I just can't explain the cramping pain I feel. Monday night of this wk, I had an experience with cross contamination. I had severe cramping for 12 hours and now my stomach and ribs still hurt from all the cramping. I have nothing to compare the experience to so my husband doesn't fully understand why I don't like to "RISK" the possibility of cross contamination to eat out at places I used to be able to eat at. He understands the medical issues, but not how I feel when it happens.


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



Celiac.com Sponsor (A8-M):



eers03 Explorer

Tell your husband it is the equivalent of getting the worst possible cramp from eating a 12 ounce steak with sides, washing it down with a bottle of beer and then going for a brisk run immediately following.  Its sharp, it lingers, and the worst problem is, you're not running on a steak--you were merely cross contaminated!!!  

 

It's basically like that but worse because it sits lower, hurts worse, and if you're running you can usually just stop and it goes away...  Gluten related cramping can last awhile...  Like hours or for some, days...

kareng Grand Master

Has he never had a bad stomach virus?

 

Even so, The fact that you are in obvious pain should be enough for him.  I have never had open heart surgery, but I understand it hurts like hell.  And then there is the fact that gluten starts to damage your intestines....   I guess he won't believe that child birth hurts either?  

NoGlutenCooties Contributor

I'm also a female, but this might help....  It doesn't sound like he doesn't believe that it hurts, he just doesn't have anything similar to compare it to.  Has he ever had a bad charlie-horse?  It's like that, only rather than being in an extremity it is eminating from the center of your body.  And there is no way to stretch it and relieve the pain.  And similar to a severe charlie-horse, even after it starts to go away it comes back if you move wrong, breate deeply, etc.  And the soreness lingers well after the sharp pains have gone away.

IrishHeart Veteran

I ran this one by my hubs ( although it is EXACTLY what I was going to say, honest!)

and he said "tell him to imagine being hit in the jewels.... and then having them squeezed for several hours". 

 

Any man can relate to this pain.

bartfull Rising Star

Great minds think alike, Irish! I was just thinking the same thing because from what I have heard, that pain is also accompanied by cold sweats and nausea, which also often accompany celiac pain.

Archived

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


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