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

Curious —need help deciding

Stakei

Recommended Posts

Stakei Newbie
Stakei
Posted

Myself and one daughter were diagnosed via blood then biopsy as Celiac 3yrs who. Another daughter’s blood has always been negative. However, since the house has been gluten-free for 3 years now her GI issues have decreased. She recently completed 5weeks of eating gluten daily and had a biopsy. Her biopsy is negative however genetic testing shows one of the gene markers (HQ2). Final report not available yet, but we are trying to determine if she should return to gluten-free as she probably is celiac or will become celiac. Her reaction to gluten is fairly severe but because she doesn’t have the ‘celiac stamp’ she feels like it’s probably fine to not worry about contamination issues or eat gluten when she really wants the item. She’s 18 and off to college. Needs to make her own decision on gluten-free or not, but she is curious of experiences of others. Thoughts? 

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

does she want to potential impair her body for the rest of her life?  does she want to potentially impair her fertility?

Ennis-TX Grand Master
Ennis-TX
Posted

I was not diagnosed til other issues came up, wish I had gone gluten free much earlier when it was just digestive. This disease can evolve and cause other complications. I ended up with gluten ataxia, and it attacked my brain and nervous system, this effected my ability to do many complicated thought processes and made the stuff I studied for in college useless as computer programming no longer made sense like it used to. Nerve damage took away many delicate hobbies I had. Further immune issues gave rise to multiple food allergies, and a array of food intolerance and sensitivity issues. I have a entire list of stuff that makes me sick now that should not and my diet is very limited. Maybe if I had it diagnosed earlier and gone Gluten Free I could have avoided these.

If gluten makes her feel sick she should avoid it. There is Gluten free everything now days anyway ( I can not eat most of them now days with other issues)
 

cyclinglady Grand Master
cyclinglady
Posted

She is 18.  Some kids need to learn by experience.  It should not take her long to figure it out especially if she gets GI symptoms from gluten exposures.  

OregonDonna Rookie
OregonDonna
Posted

TTG IgA for me was 218 (twice). Negative biopsy. Positive for one genetic marker. It's extremely confusing, my gastro did not give me the 'stamp' either. But the nutritionist I saw said I was Celiac and never consume gluten again. She was the most helpful of any of the docs I saw in convincing me I had the disease and to be my own best advocate. But I was 67 not 18 and heading for college. I was having so many intestinal issues at the time and knew nothing about gluten. My massage therapist had suggested going gluten free so I had been pretty much gluten free by the time they did blood tests. So imagine my surprise when the results were so high both times. It's been a year since going gluten free and I have no doubt the nutritionist was right. I hope your daughter does her due diligence before she heads off on her own. Good luck.

 

GFinDC Veteran
GFinDC
Posted

She should plan on repeat testing for celiac disease every 6 months or so.  She has one of the genes and is having GI symptoms from eating gluten.  The signs point to her having or developing celiac disease.  It is better for her health not to let her immune system reaction intensify.

What EnnisTX said is a good warning.  Having a constantly irritated and inflamed gut lining can lead to our bodies developing sensitivities to lots of different foods, besides just gluten.  So she is taking a risk of not being able to at many other foods besides wheat, rye and barley.

A sample list from my own intolerances is wheat, rye, barley, oats, strawberries, carrots, potatoes, tomatoes, eggplant, peppers, dairy (including cheese), celery, soy, raisins, wine,.  There's probably some I am forgetting.  Anyhow, there is no way to reverse these food intolerances once they develop.  Some people are egg or corn intolerant too.

The celiac genes are associated with other AI conditions also.  So there are forum members who have additional AI conditions that develop.  Triggering the genes may cause that to happen.  They call those associated conditions or related conditions.  We tend to to call that multiple AI conditions and no fun.

So, those are some things for her to think about.  It is less likely she will have those kinds of problems occur if she avoids gluten IMHO.

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. Jess270
      - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions...
    2. cristiana
      - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

      I missed this article when it was first put up. It is interesting to read, as my old neighbour who sadly passed away a few years ago was a trainee midwife during WWII. Bananas disappeared from the shops in Britain during the war, but she told me that those that did get to the UK were kept back for infants with coeliac disease. I didn't realise that...
    3. trents
      - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    4. GeoPeanut
      - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease, and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with...
    5. trents
      - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,058
    • Most Online (within 30 mins)
      7,748
    Magali
    Newest Member
    Magali
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jess270
      Bitters for digestion?

      By Jess270 · Posted

      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      Vaccines

      By trents · Posted

      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Vaccines

      By GeoPeanut · Posted

      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...