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

Relatives Are Stubborn!


angellove839

Recommended Posts

angellove839 Rookie

On my test results it shows that my dad also gave me a Celiac gene. Of course, he denies anything that has to do with Celiac even though he has several symptoms. His brothers and sister and mother all have the same symptoms but they are all too stubborn and hard-headed to get tested! I dont know what to do!!


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



Celiac.com Sponsor (A8-M):



Carriefaith Enthusiast

I know it can be hard to get them tested when you know they should. The best thing to do is provide them with the complications of having untreated celiac disease. Just say that you care about them and you don't want anything to happen to them. Ultimately it is their decision but you can provide them with the facts to help them make the right decision.

Open Original Shared Link

Complications in adults

Adults who have celiac disease may develop:

* Refractory disease, which means symptoms persist even if a person eats a gluten-free diet.

* Blockage or sores (ulcerations) in the small intestine.

* Iron-deficiency anemia and folic acid deficiency anemia.

* Osteoporosis.

* Infertility.

* Recurrent miscarriages.

* Absence of menstrual periods (amenorrhea).

* Anxiety and depression.

* Lymphoma of the intestine and possibly cancer of the esophagus.

* Autoimmune diseases (in which the immune system attacks the body's own tissues), such as thyroid disease, or Sjogren's syndrome.

Open Original Shared Link

Complications of Celiac Disease: Damage to the small intestine and the resulting problems with nutrient absorption put a person with celiac disease at risk for several diseases and health problems.

* Lymphoma and adenocarcinoma are types of cancer that can develop in the intestine.

* Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption is a contributing factor to osteoporosis.

* Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for untreated pregnant women with celiac disease because of malabsorption of nutrients.

* Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.

* Seizures, or convulsions, result from inadequate absorption of folic acid. Lack of folic acid causes calcium deposits, called calcifications, to form in the brain, which in turn cause seizures.

KaitiUSA Enthusiast

You can't really force it on them. You can present them with information and tell them it is genetic. After you give them the info then it is in their hands and they choose how to deal with that info.

My extended family is very stubborn and even though stomach problems are in the family they will not get tested.

christtheking Contributor

I did not feel better until I had eliminated all my allergy related foods, yeast being on of them. Most people with an allergy to gluten most certainly have other allergies. Check here for more info. :)

Open Original Shared Link

ianm Apprentice

You can lead people to knowledge but you cannot make them learn anything. I am convinced my dad and brother have it but they don't want to know anything about it. Even after losing a lot of weight and seeing so many positive changes they just aren't interested. Nothing you can do except get healthy and stay healthy.

Guest nini

I'm convinced quite a few of my relatives have it too. My sister denies having any symptoms, however, she has severe eczema and other not so typical symptoms. My mom did well on the Atkins Diet until she started adding gluten containing foods back into her diet... she refuses to acknowledge she may have this... she's had IBS for years. My dad is the only one that seems to be willing to look into this. His Dr.s suggested he try the gluten-free diet for his symptoms and he admits he feels a ton better when he stays gluten-free. He's becoming more and more convinced now that he sees that me and my daughter are doing so well on the gluten-free diet.

cmom Contributor

When I was at the doctor last week, I got orders for both my sons to be tested. I have told the younger one who is getting ready to leave for college but not the one who is already there. Thought I'd break it to him when he comes home this weekend. Getting them to follow the gluten-free diet will probably be quite a challenge if they end up being positive. :lol:


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

This can be a hard situation. You can encourage them, but they may never choose to get tested, so at some point, if you have no success with them, you may need to try and move on. My dad is very stubborn as well, and finally got tested last week. We are still waiting on the results. Unfortunately, knowing how my dad is, if he tested positive, he would not go on the gluten-free diet. That would be heart-breaking to me, but at some point I have to let go and allow him to live with that choice and the consequences. It would only damage our relationship to continue to push and push him. I hope your family listens to your input, sees how you are improving, and get curious for themselves!

printmaker81 Rookie

I'm positive my mother and one of my brothers have it. They have a long list of celiac symptoms. Neither of them will even listen to reasoning that they should get tested. Another of my brothers has no symptoms at all and has already scheduled to get tested in a month. Funny. I'm hoping whatever results Jeff gets will help persuade the other two to get tested. I think when your relatives refuse to get tested, it because part of them sees that theycould have it and all they can see from there is the trouble of the diet not the benefits of it. Going gluten free sounds a whole lot scarier when you're not used to it.

I'm just hoping my continually improving health will be persausion enough one day whenever that may be.

PrincessLEah Rookie

Thank you for putting up this question of how to convince relatives to get tested. I'm sure that my mom, sister and brother have it. My sister has gone so far as to have her hemorroids banded but won't ask the doctor to test her for celiac. They are so afraid that their lives will be drasticly changed that they won't even hear of it. They make me angry and sad at the same time. They would feel so much better.

Corrine Rookie

PrincessLeah is my daughter. I didn't know that she hadn't logged out.

Archived

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

  • 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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for 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/   
×
×
  • 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.