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Health Problems Due To Celiac

queenwhit

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queenwhit Newbie
queenwhit
Posted

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! :)

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

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
Foxfire62
Posted

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
cyberprof
Posted
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
LDJofDenver
Posted

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
Crayons574
Posted

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
NorthernElf
Posted

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 !

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cyberprof Enthusiast
cyberprof
Posted

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
nasalady
Posted
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
queenwhit
Posted
  • Author

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
daphniela
Posted
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
mouse
Posted

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
Lisa
Posted

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

mouse Enthusiast
mouse
Posted

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
jerseyangel
Posted

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

happygirl Collaborator
happygirl
Posted

Hi Mouse :)

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

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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