Appetite Loss And Celiac Disease

[echopants]

I've been having pretty severe appetite loss since October, and I've lost at least 40 pounds since then due to that. Finally did an endoscopy today after doing lots of blood tests and having everything come back normal. Apparently they found what they think is celiac disease during the endoscopy, still waiting on the biopsy results. Is it possible that celiac disease is causing this? From everything I'm reading online, celiac disease is more likely to increase appetite than decrease it, and I'm having no other symptoms like pain or bloating.

If I do have celiac disease, it almost seems like I'm better off just letting it go for now. If I go on a gluten-free diet and my appetite comes back, I'll just be completely miserable because of all the foods I can't eat. If I continue on as I am doing, I will continue to lose weight painlessly and not have to deny myself anything. After all, I'm still overweight, it will take a while before losing too much weight is a problem. Seems like a no-brainer to me! Yell at me and tell me why this is wrong?

[lynnelise]

This is wrong because your intestines are being destroyed which will eventually lead to severe illness and death.

[echopants]

This is wrong because your intestines are being destroyed which will eventually lead to severe illness and death.

Thanks for the speedy response but, bear with me playing devil's advocate here, what I'm reading online indicates that the vast majority of people with celiac disease are never diagnosed and thus never start eating gluten-free. If it led to serious illness, wouldn't they eventually be diagnosed? If your symptoms are so mild that it's not causing you serious problems, do you have to go gluten free?

[Jestgar]

It's true, most people won't have severe issues from continuing to eat gluten. The only trouble is, if you are one who does, the damage caused may be irreversible. It's a risk, but it's your risk, and you need to decide what's most appropriate for you.

[momxyz]

Thanks for the speedy response but, bear with me playing devil's advocate here, what I'm reading online indicates that the vast majority of people with celiac disease are never diagnosed and thus never start eating gluten-free. If it led to serious illness, wouldn't they eventually be diagnosed? If your symptoms are so mild that it's not causing you serious problems, do you have to go gluten free?

Not causing you problems..... that you know of.

The severity of symptoms that people demonstrate is highly variable. And, some people do have problems and symptoms that aren't all that obvious and a lot of times, are not attributed to gluten intolerance. That's why many people are never diagnosed.

Between my daughter and myself, here's a laundry list of "issues" that were never attributed to gluten intolerance by our physicians: amennorrhea, anxiety, depression, constipation, acid reflux, peripheral neuropathy, itchy rash. After several months on a gluten free diet, all of these have been reduced if not eliminated.

We don't have to be gluten free; it's our choice. But it's made us both happier and healthier.

[luvs2eat]

What everyone else said... the physical horrors can be diverse and devastating... and life threatening. Plus... going gluten free is tough and giving up foods is hard, but there are so many things we can naturally eat and, w/ a little work, there's almost nothing we can't recreate. The memory (and longing) for the foods we can no longer have really does lessen w/ time and having yummy gluten free foods makes it easier.

I know how you feel... I'd be sorely tempted to keep eating gluten and not feel hungry and easily lose weight, but your long-term health could absolutely be compromised. It's not worth it!!

[kayo]

Health should always come first before weight loss. The weight loss should be secondary. Just because you don't have symptoms now does not mean you aren't doing damage to your intestines. So many of us have had ongoing medical issues for years, tens of years, most likely due to or exacerbated by the celiac/gluten issues. I know that if I had been diagnosed earlier my quality of life would have been so much better. Perhaps my rheumatoid arthritis wouldn't have advanced so aggressively at a young age. Perhaps I never would have developed Sjogrens. I'll never know but given the chance I would have done all I could have done to live better and longer. Who knows what 39 years of ingesting gluten has done to me. Will my life be shortened by cancer? Only time will tell. I think of gluten as poison, one that has been slowly damaging my body all these years. Would you take cyanide everyday if it caused you weight loss but caused internal but unseen damage? Would you willingly take that risk? Something to think about.

[sunnybabi1986]

If I go on a gluten-free diet and my appetite comes back, I'll just be completely miserable because of all the foods I can't eat. If I continue on as I am doing, I will continue to lose weight painlessly and not have to deny myself anything.

As far as not being able to eat any of the foods you love, that is a complete myth. When I first went gluten free, it FELT like I couldn't eat anything, but don't always trust your feelings. Going gluten free is very emotional and you may feel overwhelmed and depressed, thinking of all the things you used to eat, but it really is just your emotions.

I have yet to find anything that I used to eat that I can't eat now, with the exception of the Whopper, which I miss dearly. You can duplicate anything you used to eat, you just have to use different ingredients and sometimes different methods. I have had amazing French Toast, Fried Chicken, Biscuits and Gravy, Pizza, Wraps, and Pasta Dishes, ALL of which are gluten free. You have to get a little more creative, but you really can eat anything you want. Just not with wheat, barley, or rye. You don't have to deny yourself anything!

Going gluten free is life changing and very stressful in the beginning. But as time goes on, it becomes second nature and it doesn't bother you like it does in the beginning. I say this to encourage you and to help you change your point of view a bit. Going gluten free is NOT bad. It is NOT impossible, and it WILL improve your health and quality of life. You WILL feel better, after a period of healing time, and eventually, you will wonder how you ever ate wheat, barley, or rye products!

Look at going gluten free as an opportunity to experience new and innovative foods and new ways of cooking and being healthy. For me, I am SO glad I went gluten free, as I've discovered so many great foods I would have NEVER tried before. My diet is much more varied and I am so much healthier than I was before!

Feel free to PM me is you need recipes, food ideas, or anything else!!

Janie

[gf-soph]

I just wanted to add that you aren't thinking of your nutrition at all. You may be able to continue for a while eating gluten, happy with having little appetite, but eventually it will catch up with you.

I had a lot of symptoms for a couple of years, and 18 months after going gluten free I am still having to work really hard to get my nutrient levels back to normal. It is pretty miserable when you constantly need injections and supplements and doctors appointments to try and stay well. It affects my energy, my mood, my concentration, and has stopped me from pursuing further study until my health stabilises. It's pretty miserable and it really has affected my life in a lot of ways. As soon as I knew it was the gluten I gave it up, as I just wanted to get better.

No-one can tell you exactly how long you can keep eating gluten and not eat enough food without becoming unwell from deficiencies. But you are a lot better off looking after your basic health and achieving the weight loss through a healthy balanced diet and exercise than by allowing your body to starve. It could save you months or years of being unwell.

I'm not judging you because I have had periods of a couple of months where my appetite and stomach capacity had been greatly reduced, and I can see how it feels like a good thing. But be clear about it - you are losing weight because you can't eat normally. Your lack of appetite is most likely due to the gluten, which means it is causing you damage. When you lose weight by starving, when you do eventually return to eating properly your body will hold on to every calorie it can get. If you feed your body consistently it doesn't need to do this.

I can understand that the diet seems overwhelming and that you think you wont be able to enjoy food. Fortunately, there is a huge amount of information out there, gluten free foods and recipies to guide you through it. As sunnybabi1986 said, there is almost nothing that you can't find a way to replace, and the restrictions do stop bothering you as you go along. I think you know that what you are doing is not a long term solution, I hope you find one that works for you. You have no idea how much better you could be feeling if you don't give the gluten free diet a go!

[echopants]

Thanks for all your replies! You now have me sufficiently afraid of eating gluten. Then I got home last night and my fiance told me that the doctor doesn't want me to change my diet yet so they can do a blood test for the antibodies once the biopsy comes back. (I'd forgotten everything she said, yay sedative!) If I have to poison myself with gluten from doctor's orders, I'm thinking of going to the nicest restaurant around and doing one "last supper" before I'm banned from doing that forever.

[sunnybabi1986]

Thanks for all your replies! You now have me sufficiently afraid of eating gluten. Then I got home last night and my fiance told me that the doctor doesn't want me to change my diet yet so they can do a blood test for the antibodies once the biopsy comes back. (I'd forgotten everything she said, yay sedative!) If I have to poison myself with gluten from doctor's orders, I'm thinking of going to the nicest restaurant around and doing one "last supper" before I'm banned from doing that forever.

Haha! I still remember my "last meal." It wasn't worth it, though, as I was sick for a week afterward. Tasted yummy at the time, but I paid dearly for it. Please let us know how everything goes!

Pulling for you,

Janie