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Can I live?

Nelly

By Nelly
in Coping with Celiac Disease

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Nelly Rookie
Nelly
Posted

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. 

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Scott Adams Grand Master
Scott Adams
Posted

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
bartfull
Posted

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
cyclinglady
Posted

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
nvsmom
Posted

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
Nelly
Posted
  • Author
 

 

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
squirmingitch
Posted

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.

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bartfull Rising Star
bartfull
Posted

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
nvsmom
Posted

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.

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      Thank you for the information ill will definitely bring it into practice .
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