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

My Mother


jswog

Recommended Posts

jswog Contributor

About the same time I went gluten free, my mother's (at the time) brand new doctor told her that she needed to be gluten free as well. He diagnosed through a hydrogen breath test on which anything below 10 was ok (0 is ideal). She was 20. She had been 'attempting' to go gluten free, but still INSISTED on doing certain things (fast food, buffets, etc.) where she would almost certainly be getting glutened. As I had been gluten free for about two weeks before she was and given that I had researched how to go gluten free for almost a month before that, she would ask me questions. I would give her an honest answer, which she usually didn't like, and she would give me tons of excuses on why she couldn't do that. My mother is almost 62 and VERY set in her ways. And then she'd call me and complain about how she wasn't feeling any better and that this diet was NOT working. I was getting incredibly tired of hearing her complaints when I had offered her solutions. She had another doctor's appointmet last week during which they were doing a follow-up breath test. She was totally sure that it was going to come back as no change and she was "going to tell the doctor where he could put this diet." Well, it had dropped 15 points down to a 5! Now she's been eating crow and has actually been more receptive to what she really needs to do. She still refuses to take the few steps to prevent CC at home (like even wiping counters before making her food after my father's bread has been on there, extra hand washing, etc.), but she's come around this far, so maybe... She still swears that because she experiences no GI symptoms that she's ok to cheat now and then, and then in her next breath she says that she 'tested' gluten the other day with a cinnamon roll and some other 'bread' treat and had horrible D, gas, cramping about 12 hours later. Mothers! lol


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Goodness, does this sound familiar! It was my daughter who convinced me to go gluten-free and I made the same comments and mistakes that your mom did at first. Maybe it takes some of us a little longer for reality to dawn on us. I am glad you trying to help your mother, she probably doesn't fully grasp this yet. I know it took me a while to get my head wrapped around it. Hang in there!

captaincrab55 Collaborator

About the same time I went gluten free, my mother's (at the time) brand new doctor told her that she needed to be gluten free as well. He diagnosed through a hydrogen breath test on which anything below 10 was ok (0 is ideal). She was 20.

Tell us more about this hydrogen breath test for Gluten....

rosetapper23 Explorer

LOL! Your experience with your mom is similar to the one I had with my own mother. When my son and I were diagnosed with celiac, I happily called her up to inform her that I finally had figured out what was causing ALL of us to be ill (yes, I had suggested it to the doctor). You see, my mother had had celiac symptoms her whole life, and they'd gotten so bad, she thought she was about to die (she was 67 at the time). My son and I also thought we were dying, and the doctors were no help at all. However, when I told my mother about celiac, instead of being elated at knowing what was wrong and how easy it would be to fix, she indignantly told me that she didn't think she had celiac at all. I was flabbergasted! Apparently, she just couldn't stomach the idea of giving up wheat bread and pasta, her two favorite foods. She even insisted that she had NO celiac symptoms. Oh, yeah? What about the chronic D, joint pain, sinus problems, anemia, dental problems, muscle weakness, etc.?? After a year of pleading with her and getting nowhere, she finally received news from her doctor that her bones were 70% decalcified. She called me to ask me how her bones could have ended up in such a condition. When I told her that celiac could very well be the culprit, she broke down crying and admitted to having many symptoms of celiac but had chosen to eat gluten because she couldn't face giving up her favorite foods. After that heart-to-heart chat, she began to follow a strict gluten-free diet and became quite expert in preparing gluten-free meals and baked goods. She's been gluten free for almost seven years now, and her health has improved dramatically over that time--no sinus infections anymore, healthy bones and teeth, less joint pain, no D anymore, etc.

Hopefully, your mom will continue to remain gluten free. Sometimes people need to experience a scare or a certain level of discomfort to be motivated enough to stay on this diet. Had she waited another five years until she reached my mom's age, she might have really suffered from serious symptoms, so I'm glad her doctor caught it early.

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. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    2. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
×
×
  • 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.