Trouble Getting Serious About Celiac

[yaelchai]

When my daughter was 23, she was diagnosed with celiac (after getting severely anemic and losing a lot of weight) with a biopsy. Her blood test was negative.

My son has not had testing, but he clearly has celiac and follows the diet (his symptoms tend to be skin related).

Another daughter tested positive with the blood test, but she chooses not to follow the diet (her doctor told her there were many false positives in the blood test). She has tried a gluten free diet and says she does not see any difference.

Three and a half years ago (at the age of 56), I developed chronic diarrhea and after several months, the gastro did a biopsy and said that it appeared that I had celiac, but there was also inflammation suggesting Chrohn's. After further testing, he decided it was not Chrohn's. I started following a gluten-free diet, and the diarrhea disappeared.

Now, you would think I would be happy to continue the diet! However, I find myself eating an occasional piece of bread or ordering something in a restaurant that has breading. I do not appear to have any bad effects from doing so. I should note that I do generally follow the gluten-free diet.

Unfortunately, I do the same thing with sugar and I am clearly at risk for type 2 diabetes (because of my family history, weight, and cholesterol).

Today, a light went on. I have had one cold after another, several bouts of bronchitis, and have generally just felt cruddy for the last year. Don't ask me why I didn't associate my "slips" with these symptoms, but I think I've been in denial--in the face of some pretty strong evidence.

Can someone give me a pep talk?? I know I need to take this seriously, but I have not been able to do so. Help!

[angel9165]

When my daughter was 23, she was diagnosed with celiac (after getting severely anemic and losing a lot of weight) with a biopsy. Her blood test was negative.

My son has not had testing, but he clearly has celiac and follows the diet (his symptoms tend to be skin related).

Another daughter tested positive with the blood test, but she chooses not to follow the diet (her doctor told her there were many false positives in the blood test). She has tried a gluten free diet and says she does not see any difference.

Three and a half years ago (at the age of 56), I developed chronic diarrhea and after several months, the gastro did a biopsy and said that it appeared that I had celiac, but there was also inflammation suggesting Chrohn's. After further testing, he decided it was not Chrohn's. I started following a gluten-free diet, and the diarrhea disappeared.

Now, you would think I would be happy to continue the diet! However, I find myself eating an occasional piece of bread or ordering something in a restaurant that has breading. I do not appear to have any bad effects from doing so. I should note that I do generally follow the gluten-free diet.

Unfortunately, I do the same thing with sugar and I am clearly at risk for type 2 diabetes (because of my family history, weight, and cholesterol).

Today, a light went on. I have had one cold after another, several bouts of bronchitis, and have generally just felt cruddy for the last year. Don't ask me why I didn't associate my "slips" with these symptoms, but I think I've been in denial--in the face of some pretty strong evidence.

Can someone give me a pep talk?? I know I need to take this seriously, but I have not been able to do so. Help!

I was asymptomatic so had a hard time buying into the new diet. It's now been 6 months. I can honestly say the biggest change for me has been neurological. Things are so much clearer for me, I no longer walk into walls for no apparent reason. I had my 6 month follow up with the GI doctor and he was surprised by this. I have to remind myself that they are not celiac specialist, but GI specialist. So every time you think you might want to cheat, just remember the colds and in general feeling like crud and that should help you just Say No! It's not easy...I want a cold Beer soooo bad.

[katiekay]

Hi. I'm new to the whole Celiacs thing. I haven't gotten the positive blood test yet but I'm pretty sure I have it... hard since you can get the false negative. Anyway I posted about a similar thing... I didn't know what was the big deal about celiacs... I mean if it's just a little discomfort and you want a piece of cake why not have cake and deal with discomfort? Didn't know how to feel comfortable not looking like / feeling like a jerk when I refuse certain foods someone offers just because I don't want to have diarrhea...

Someone sent me this article:

https://www.celiac.com/articles/22237/1/Better-Education-for-Celiac-and-Gluten-Sensitive-Patients/Page1.html

from the article:

"I am not a researcher but my clinic sees hundreds of patients who align with the results of this study completely. Patients come to see us who have been told that they shouldn’t consume gluten and for the most part they follow that recommendation. They know that they feel better when they are gluten-free so that is an impetus to not cheat. When they do cheat they know that they’ll “pay” for it but they still do so fairly regularly.

Why do they cheat? Because they believe that the diarrhea, headache, bloating, etc is temporary and that when it goes away they are “fine” again. Their thought process is not unreasonable, it’s just wrong!

If each patient was educated that cheating created intestinal destruction that in turn put them on a fast track towards disease and early death, I believe that cheating would take on a whole new perspective."

I am going to print out the article and keep it with me.

Hope that helps you as well. It really is more than just about not feeling the discomfort. Cancer is a big thing to worry about.

[LivesIntheSun]

Dr. O'Bryan will give you a good old pep talk too- check out the audio programs in which he spells out exactly why a little bit of gluten is so harmful, even though you may not feel anything. The info is great in general, enjoy!

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[Marilyn R]

My mother was diagnosed with celiac and chron's disease. She was an RN and felt it was ok to cheat, or she had a food addiction that she couldn't beat. If you continue to poison yourself, your autoimmune system will continue to wreak havoc on your body. You may experience neurological symptoms like neuropathy or migraine headaches or M.S. There's another wierd autoimmune disease that makes your skin blister all over. (I can't remember the name of that particular disease.)

Mom didn't drink a drop of alcohol but she walked like she was a drunk in her late 50's. I remember taking her on a cruise when she was in her early 60's. The ocean was really rough, people were seasick, and she mentioned how nice it was that everyone was walking like her.

I loved my mom to bits. I respected her immensely. I never understood why she wouldn't go gluten-free, but she spent the last six years of her life in a nursing home with two or three people assisting her to do very basic activities of daily living. If you love your children, you can sacrifice gluten. It isn't that big of a deal. I don't have children and it was a slam dunk for me to give it up because I saw what happened to my beloved mother.

Hope I didn't go overboard, but that is from my heart! If you can't do it for you, do it for your children. Please go gluten-free for your children! I can provide more gory details, just send me a message if this isn't convincing enough to stop cheating.

Sorry to be a bummer, but I really miss Mom with Easter and Mother's Day coming up...and it is so easy to deal with a gluten-free diet. A little inconvenient at best.

[WinterSong]

Another daughter tested positive with the blood test, but she chooses not to follow the diet (her doctor told her there were many false positives in the blood test). She has tried a gluten free diet and says she does not see any difference.

This may be slightly off the topic, but it concerned me - what's this about false positives being common? Everything that I've read online and in books have said that blood tests are very accurate, and most people who've replied to my posts on this site have said that false positives are very rare while false negatives are more common....Even if she can't physically feel a difference, there are a lot of long term health consequences that can happen by not following a gluten-free diet when you have Celiac including cancer and diabetes. You might want to speak with her about possibly reconsidering her diet.

[jeslk]

Want a pep talk? Only read below if you are ok with it being a litle harsh . . .

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Look at my signature below. I can't prove that the two cancers are related to the celiac disease, but several docs think it is very likely. And I don't have any outward symptoms, so there is nothing to keep me on track every day but the fear of more cancer. I say, stop eating gluten and consider yourself lucky that it's just been a few colds so far.

And please share with your daughter. Her doctor is an idiot if he said there are false positives . . . Rare, if ever. Good luck!

[katiekay]

Here is a book to help you get serious...

You Won't Believe It's Gluten-Free! by Roben Ryberg

I have only tried 3 recipes so far and all have turned out good.

I think the hardest thing is feeling like you have to give stuff up and with this book you don't have to. The other day I was going by a Dunkin' Donuts. I don't even eat doughnuts but the idea that I couldn't order anything there was very upsetting to me. I went home and using the book made my own doughnuts.

Also I am a vegan and have been able to substitute all dairy and eggs with vegan replacements with no problem. (just in case you have lactose issues). The book has recipes for breads, biscuits, even breading things like fried chicken.

She also uses four different flours: oat, rice, corn starch, potatoe... with each recipe she'll show how to make it with each flour in case you have a problem with one type of flour. On each she tends to also say which is her preference etc.

I hope that helps you get on track.

[GFinDC]

Do a search on "celiac related condition" or celiac associated condition" and you will find lists of disease that celiacs are more likely to get than other people. They say if you follow the gluten-free diet your chances of developing cancer are lowered after a few years. Hopefully the chances of developing these other conditions is lowered also... I believe they are, but I don't have a link to show that.

[yaelchai]

Thank you! I will speak to my daughter again about this.

[yaelchai]

Thank you for the encouragement. I found gluten-free beer here in Israel where I now live. I'm sure it is available in the States too. It's not quite a Heineken, but it's a fair substitute!

[angel9165]

@ Marilyn R

Thank you for sharing. It can't be easy but there's nothing like the truth to help a celiac patient see the need for living gluten free. Especially if you're like me and mostly asymptomatic.