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

Can I live?


Nelly

Recommended Posts

Nelly Rookie

Can I live a normal life while being a celiac patient with TTG level more than 300 but not actually take gluten free diet as I've no prominent symptoms except for occasional fatigue and low HB? Doctors won't agree on an endoscopy. 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Just because you don't have symptoms doesn't mean the risks associated with celiac disease won't affect you. Your risk of  other diseases and conditions might be higher whether or not you have any symptoms,  thus you should be on a gluten-free diet. Be sure to discuss this with your doctor as I'm sure he or she will agree.

bartfull Rising Star

A number of people here who went untreated for years can tell you. Some have MS, some have diabetes, some have lupus, many have thyroid conditions, some have cancer. Would we have gone on to develop these conditions if we had gone gluten-free right away? Maybe, maybe not.

But why  take a chance? Especially with the prevalence of good tasting gluten-free foods available now. And not only will you prevent health complications down the road but you will likely discover that you DO have symptoms - symptoms that you never would associate with celiac, or my not even notice now, considering them normal for you. In other words, even if you think you feel good now, going gluten-free will make you feel better.

cyclinglady Grand Master

But you said you do have symptoms:  fatigue and low HB (I assume this is low hemoglobin which makes you anemic).  I would encourage you to research the impacts of anemia!  I have two anemias.  One is a genetic anemia called Thalassemia which in my case is mild (hemoglobin just slightly out of range)  But the other is iron-deficiency anemia brought on by celiac disease causing my hemoglobin to drop even lower resulting in  fatigue and breathlessness.  Enough to make my doctors worry about heart damage! 

Anemia was my main symptom when I was diagnosed.  Just a lucky guess on my GI's part when I went for a routine colonoscopy because I am in the "Over 50 club and all my friends were getting them!"  My anemia in the past was brushed off because one was genetic and the other was attributed to peri-menopause.  Solution?  Have a hysterectomy which I declined after a few other GYN consults out of my network!

I was shocked about the suggestion of celiac disease.  First, I knew the drill having lived with my hubby who has been gluten-free for 14 years.  I knew exactly what giving up gluten meant.  Second, I had no gut issues (well, only if I consumed milk).  But my blood panel was high (DGP only) and my biopsies revealed a Marsh Stage IIIB (moderate to severe damage). 

Two months after my endoscopy, I fractured two vertebrae DOING NOTHING!  What?  Osteoporosis?  I had no clue and I am not that old, plus I am an athlete.  I can ride 100 miles on my bike!  I teach a few exercise classes, swim, and run! 

So, you may not think you have symptoms, but you probably do.  You are just used to them.  Think about it.  I started to slow down, but it was not due to age, but to celiac disease.  I am cranking again on my bike when my anemia resolved by eating gluten free. 

Finally,  you can develop other autoimmune disorders.  Many of us have more than one (I have Hashimoto's Thyroiditis too!)  So, I encourage you to be as healthy as possible by adhering to the gluten free diet and you might just avoid developing lupus, multiple sclerosis, cancer, etc.

I wish you well!  Don't forget to encourage  your first-degree relatives to get tested.  This autoimmune disorder is genetic.  Just needs something to switch it on (stress, illness, etc.)!

I wish you well! 

nvsmom Community Regular

Like the others said, you can ignore it but things will get worse.  They will.  Some symptoms may become permanent and you could develop life threatening conditions.  I developed ITP, which almost killed me and hashimoto's too. Those are with me forever. My hair thinned and never really came back thick again.  I had joint issues that have resulted in arthritis and soft tissue damage.  I can no longer be nearly as active as I would like to be. I feel older than I should.

You could ignore but you WILL hurt your health and age yourself.  I wouldn't do it.  Eating gluten-free isn't horrible.  Meats, veggies, fruits, nuts, eggs, potatoes, rice, quinoa, flax and baking from gluten-free flours... Nothing bad there.  It takes a few months to get used to new brands and tastes, but it's worth it in the long run.

Nelly Rookie
 

 

Like the others said, you can ignore it but things will get worse.  They will.  Some symptoms may become permanent and you could develop life threatening conditions.  I developed ITP, which almost killed me and hashimoto's too. Those are with me forever. My hair thinned and never really came back thick again.  I had joint issues that have resulted in arthritis and soft tissue damage.  I can no longer be nearly as active as I would like to be. I feel older than I should.

You could ignore but you WILL hurt your health and age yourself.  I wouldn't do it.  Eating gluten-free isn't horrible.  Meats, veggies, fruits, nuts, eggs, potatoes, rice, quinoa, flax and baking from gluten-free flours... Nothing bad there.  It takes a few months to get used to new brands and tastes, but it's worth it in the long run.

Thanks everyone for so much information. I am 44 years old lady and she  is my daughter who asked about the repercussions of not going gluten free. Have been convincing her since one month but she was just delaying it. Now hopefully with all the replies She got on this forum has convinced her. She's 17  years old With a good height and has been suffering from stomach issues since she was six. I myself was diagnosed with celiac in March this year without endoscopy and inspite of so many requests  for it have been declined by many doctors as they say that there's a greater risk of infections and more over it will damage you from Inside

squirmingitch Veteran

Make no mistake about it - untreated/ignored celiac can eventually kill and it won't be an easy death. it will be a decline with tons of pain & suffering along the way and odds are there will be more & more autoimmune diseases jumping on the bandwagon along the death trail.

Sorry to be so harsh but that's the bottom line. Celiac tried to kill me. I thought I would be in a wheelchair inside a year's time when I discovered what I was really suffering from was celiac. it was wrecking my mind and my body & it was horrid & extremely painful - a pain that is so intense you don't have the energy to cry or scream.


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

So now what you both need to do is go to the coping section here and read (and STUDY) the Newbie 101 thread pinned to the top. :)

nvsmom Community Regular

Thanks everyone for so much information. I am 44 years old lady and she  is my daughter who asked about the repercussions of not going gluten free. Have been convincing her since one month but she was just delaying it. Now hopefully with all the replies She got on this forum has convinced her. She's 17  years old With a good height and has been suffering from stomach issues since she was six. I myself was diagnosed with celiac in March this year without endoscopy and inspite of so many requests  for it have been declined by many doctors as they say that there's a greater risk of infections and more over it will damage you from Inside

That was me. I was 5'8", and on varsity teams in high school even though I had stomach aches a few times a day and had migraines... I think I was a bit more fatigued than average too because I would love to stay home and rest rather than stay out too too late.

My ITP developed when I was 18. I had been working for 8 months and saving for a trip to Europe.  I had to cancel my trip and spend a summer in and out of the hospital.  I developed inflammatory arthritis at about age 22, and had hashimoto's show up at about the same time - during university.

I wish your daughter luck.  It is hard to change and be different, but within a few months she'll notice a huge difference.  Best wishes.

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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

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

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    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

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.