[queenwhit]

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!

[Mother of Jibril]

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

http://www.leukemia-...dp?item_id=8965

[Foxfire62]

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]

queenwhit, on Jun 6 2009, 05:41 PM, said:

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!

Mother of Jibril, on Jun 6 2009, 06:21 PM, said:

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

http://www.leukemia-...dp?item_id=8965

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]

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

http://celiacdisease.about.com/od/symptoms...mplications.htm

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]

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]

[quote name='Foxfire62' date='Jun 6 2009, 07:19 PM' post='538395']
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

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 !

[cyberprof]

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]

queenwhit, on Jun 6 2009, 03:41 PM, said:

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:

http://www.umm.edu/n...ses/zonulin.htm

Good luck!

JoAnn

[queenwhit]

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.

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]

queenwhit, on Jun 6 2009, 03:41 PM, said:

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
sjögren syndrome
autoimmune thyroid disease
lupus erythematosus
dysrhymia
cholestatic liver disease and other liver diseases
neuropathy
seizures

[mouse]

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]

Hey Mouse. We miss you and we love you.

[mouse]

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]

Saying nothing except I love you too, my dear.