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

Health Problems Due To Celiac


queenwhit

Recommended Posts

queenwhit Newbie

Hi everyone! Just found this forum today, looks good!

I was diagnosed about 10 months ago with Celiac, and I am very very intolerant, so I am quite strict with eating no gluten. Since then my sister and Dad have been diagnosed, however because they do not have as "severe" symptoms, they continue to eat gluten and it's very frustrating, especially since I know ignoring Celiac can cause many other health issues.

So here's my question: What diseases/issues have arisen with you or someone you know by either ignoring Celiac or being misdiagnosed for a time?

I'm hoping I will be able to show my Dad your answers and "scare" him into going gluten-free!

Thanks! :)


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

The main problem I know of with untreated celiac disease (continuing to eat gluten even when you know it's causing your immune system to damage your intestines) is cancer. Especially lymphoma :(

Open Original Shared Link

Foxfire62 Newbie

I can tell you, recovering from celiac disease can be complicated. Since my recovery process, I have had the following:

GERD

Burning in my throat

Feeling of fullness

Constipation which led to not eating which led to starving myself and losing weight, which led to:

Lightheadedness

Heart attack-like symptoms (i.e., pain in chest, shortness of breath)

Heart palpitations (specifically when trying to sleep)

Potassium and Magnesium level drops

Blood pressure drops and spikes

Vagus nerve irritation

Head surges/rushes (specifically when trying to sleep)

Hypoglycemia

Hormonal imbalance

Not only that, but undiagnosed celiac disease can lead to cancers of the esophagus and colon as well as Non-Hodgkins Lymphoma. Also, since celiac disease is an auto-immune disorder, it can lead to other auto-immune disorders.

Why wouldn't they want to feel better? Recovery can be difficult for some, especially if the damage is severe. If they do have celiac disease and continue to gluten themselves, they may end up miserable and having refractory sprue, which they will never be able to improve.

Good luck in trying to convince them!

cyberprof Enthusiast
Hi everyone! Just found this forum today, looks good!

...

I'm hoping I will be able to show my Dad your answers and "scare" him into going gluten-free!

Thanks! :)

The main problem I know of with untreated celiac disease (continuing to eat gluten even when you know it's causing your immune system to damage your intestines) is cancer. Especially lymphoma :(

Open Original Shared Link

It's really hard to "scare" or convince people to go gluten-free ore even get tested. Of course, the unreliable (IMHO) testing methods available to doctors and patients is partially to blame.

For example, I have two co-workers who I expect might have a problem w/gluten. One has rheumatoid arthritis and her doctor advised her to go gluten-free/CF, but didn't test her. I've explained about people - like Ravenwoodglass - who went gluten-free and had a marked improvement in their RA symptoms. But her compliance will have to be voluntary, as she hasn't been tested for celiac. Maybe going gluten-free will help and she'll stick with it.

My other co-worker has vitiligo and is lactose intolerant, and her mother died of lymphoma at a young-ish age. She isn't open to suggestion and I don't want to push too hard. She's always complaining of stomach problems.

Sheesh, it's really hard. Good luck to the OP.

LDJofDenver Apprentice

Here's a link with enough info (about complications of untreated celiac disease) to help someone take this seriously - especially numbers 4 and 5.

Open Original Shared Link

Personally, in addition to digestion and abdominal woes, I had a lot of the neurological problems -- pins and needles (neuropathy), balance, etc. All of which are either completely gone or significantly improved since going gluten-free last August after diagnosis.

I'm sure you've read (or will read) that there many celiacs that are asymptomatic -- but the damage is still being done, whether or not they are feeling it.

Welcome to the forum, there's a lot of support and good information here.

Crayons574 Contributor

Hypothyroidism and IBS......which many of us get mis-diagnosed with IBS, GERD, Leaky Gut Syndrome, etc.

I can understand your frustration that they won't adhere to a strict gluten free diet. My dad is gluten intolerant, yet he somehow feels that is happiness of eating piece of bread will overshadow his digestive problems that will soon follow. Makes no sense to me! <_<

NorthernElf Enthusiast

I can tell you, recovering from celiac disease can be complicated. Since my recovery process, I have had the following:

GERD

Burning in my throat

Feeling of fullness

Constipation which led to not eating which led to starving myself and losing weight, which led to:

Lightheadedness

Heart attack-like symptoms (i.e., pain in chest, shortness of breath)

Heart palpitations (specifically when trying to sleep)

Potassium and Magnesium level drops

Blood pressure drops and spikes

Vagus nerve irritation

Head surges/rushes (specifically when trying to sleep)

Hypoglycemia

Hormonal imbalance

:huh: Wow............I coulda wrote this post !!!!! I do still deal with GERD issues (thanks to my coffee addiction) but with gluten it is greatly magnified. I have almost passed out on gluten and those heart palpatations when trying to sleep - forgot about those !!! Kinda scary. Once in awhile I get accidentally glutened and when it clears my system I remember just how bad it makes me feel - and how good I feel OFF gluten. That's gotta be worth something too !


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



Celiac.com Sponsor (A8-M):



cyberprof Enthusiast

Foxfire and NorthernElf,

I too had a lot of the heart palpitations and head surges/rushes when trying to sleep, along with the HBP spikes prior to diagnosis. They went away but came back a few weeks ago. I was thinking that maybe I needed to have some heart tests done or see a doctor but then I realized that I had been too busy and had forgotten my magnesium, multi-vit and b12/ b6/folic acid sublinguals. I started back taking all my supplements earlier this week and all the palpitations and surges are gone. Something to think about.

nasalady Contributor
Hi everyone! Just found this forum today, looks good!

I was diagnosed about 10 months ago with Celiac, and I am very very intolerant, so I am quite strict with eating no gluten. Since then my sister and Dad have been diagnosed, however because they do not have as "severe" symptoms, they continue to eat gluten and it's very frustrating, especially since I know ignoring Celiac can cause many other health issues.

So here's my question: What diseases/issues have arisen with you or someone you know by either ignoring Celiac or being misdiagnosed for a time?

I'm hoping I will be able to show my Dad your answers and "scare" him into going gluten-free!

Thanks! :)

Misdiagnosed for decades (was told I had IBS). I believe this has been the cause of many of my other autoimmune diseases (and I have A LOT of them). The worst ones at the moment are the rheumatoid arthritis and the autoimmune hepatitis (my immune system is trying to kill my liver).

Why do I blame celiac disease? Because the latest research indicates that celiac disease can play an important role in the development of other autoimmune diseases:

Open Original Shared Link

Good luck!

JoAnn

queenwhit Newbie

Thank you, everyone, for your replies and advice! I feel a little bit more informed now, perhaps I'll launch another attack on my Dad and sister to not eat gluten! Just kidding...no attacking going on. :ph34r:

I have also had issues with my nervous system...One day I woke up and my entire left leg was numb...after being awake for a while it turned into very sharp pains coursing through my whole leg...Turns out I was severely deficient in vitamin B12 and in iron, and the doctor at my university gave me the stupid Canadian Food Guide like it was a prescription!

Apparently you should have enough B12 reserves to last you 3 years, and I was out of it all!! Now there is permanent nerve damage on the front of my shin... I don't even want to think of how many brain cells I've killed due to not knowing about my Celiac!

daphniela Explorer
Hi everyone! Just found this forum today, looks good!

I was diagnosed about 10 months ago with Celiac, and I am very very intolerant, so I am quite strict with eating no gluten. Since then my sister and Dad have been diagnosed, however because they do not have as "severe" symptoms, they continue to eat gluten and it's very frustrating, especially since I know ignoring Celiac can cause many other health issues.

So here's my question: What diseases/issues have arisen with you or someone you know by either ignoring Celiac or being misdiagnosed for a time?

I'm hoping I will be able to show my Dad your answers and "scare" him into going gluten-free!

Thanks! :)

enamel defects in teeth

calcium malabsorption

permeable gut condition

anemia

non-Hodgkins lymphoma

esophageal cancer

adrenocarcinoma of the small intestine

infertility

miscarriages

baby born with neural tubal defects

bad menopause symptoms

ataxia or cerebellat ataxia

ADD or ADHD

depression or anxiety

headaches

diabetes

multiple sclerosis

sj

mouse Enthusiast

I am so sorry your Father does not listen to you. I have a daughter that won't be tested as she says she eats healthy. And I believe that she has Celiac. It has to be a worry for you.

The only thing I can tell you is that I am 67 years old and I am going to leave this World in hopefully, a very short time. I was undiagnosed for too many years and the damage that the disease did to my body is unbelivable. I don't know how old your Father is, but if he does not want the possiblility of ending up like me, then he needs to go totally gluten free. My new heart problems have caused me not to have any real quality of life. If he only wants to end up reading books, because you are just too sick to do anything else anymore, then he can keep eating gluten. I understand as I would give anything to go to PF Changs and eat every gluten appetiser they have, but the neurological reactions I would have, would not be worth it. But, my mouth waters thinking of those edibles LOL.

I have lost an additional 25 pounds since my Celiac diagnosis and the doctors don't know why. I am so skinny, that it probably looks to people that I have to be a drug user. And I eat like a 250 pound man. I just had another Chemical Radiation Stress test this morning. I have no idea why as my Cardio agrees that I am too weak to probably survive the surgery. Hopefully it will help him to decide if I need an additional meds to make me more comfortable. At this point, comfort and very little pain would be nice.

Your Father needs to realize that the damage to his organs is being done as he consumes gluten. Malabsorption (the loss of vitamins and nutrients) does not happen overnight. It is a lengthy process and after some of your major organs are damaged, going gluten free does not always give those organs a chance for a full recovery.

I wish you luck and hopefully your Father will realize that he needs to do this, so that he can enjoy his grandchildren. I have a great granddaughter who is 6 months old and I am too sick to be able to spend much time with her. I was hoping that I would be able to read to her as I did my granddaughter. But, I only have the strenth to see her every so often and then for about an hour with her Mother doing the lifting, etc. This is not what I invisioned with my life.

Hugs to you and your Father.

Lisa Mentor

Hey Mouse. We miss you and we love you. ;)

mouse Enthusiast

Thank you. I get tired of reading and playing Freecell LOL.

But, no one else say anything as I don't want this thread highjacked.

jerseyangel Proficient

Saying nothing except I love you too, my dear. :)

happygirl Collaborator

Hi Mouse :)

queenwhit, this link may help: https://www.celiac.com/categories/Celiac-Di...Celiac-Disease/

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. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.