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. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Son's legs shaking

    2. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    3. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    5. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

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

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748

    Jadelucia
    Newest Member
    Jadelucia
    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

    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
×
×
  • 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.