I Had No Idea!

[MallysMama]

I just finished reading the entire thread of conversation for what you were surprised to find gluten in. I had no idea that anyone with celiac was so sensitive to gluten that they couldn't use certain shampoos or makeup or even the same pots and pans as non-celiacs! My goodness - that's so awful!! How do you all do it?? I always read the ingredients in food - but it never occured to me to check anything else. (I don't think I'm quite so sensitive these days....but I wonder if I was that sensitive to gluten when I was first diagnosed?)People are always so surprised when I tell them that I can't eat "flour"...their first response is usually "you don't eat BREAD!?" But I don't think anyone without allergies could even begin to comprehend what you all have gone through (I have a hard time comprehending, and I thought I was the same). I am brought almost to tears when I think of all the new people diagnosed and struggling with being totally gluten free. My heart goes out to all of you.

[ravenwoodglass]

I just finished reading the entire thread of conversation for what you were surprised to find gluten in. I had no idea that anyone with celiac was so sensitive to gluten that they couldn't use certain shampoos or makeup or even the same pots and pans as non-celiacs! My goodness - that's so awful!! How do you all do it?? I always read the ingredients in food - but it never occured to me to check anything else. (I don't think I'm quite so sensitive these days....but I wonder if I was that sensitive to gluten when I was first diagnosed?)People are always so surprised when I tell them that I can't eat "flour"...their first response is usually "you don't eat BREAD!?" But I don't think anyone without allergies could even begin to comprehend what you all have gone through (I have a hard time comprehending, and I thought I was the same). I am brought almost to tears when I think of all the new people diagnosed and struggling with being totally gluten free. My heart goes out to all of you.

Please don't feel sorry for me, feel happy. The change in the way I feel is well worth the hassle and expense. I was in so much pain for so long that the celiac diagnosis seemed like a miracle. I also consider myself fortunate to react to even the tiniest amount. I feel sorry for the ones who don't. They don't have as much incentive to keep all forms of this poison out of their lives. Even the smallest amount does damage to us, even if we don't realize it.

[MallysMama]

Is the damage permanent? I've never quite understood that. Isn't it just temporary - and everything goes back to normal when we eat right? Or, by cheating, am I permanently hurting myself past repair? How can I know for sure? Aren't there different levels of intolerance? Some higher than others? Is it possible that I've grown more tolerant of gluten - or has my body just stopped giving the signs of being sick?

thanks for your response! I am happy that you all have found the gluten free diet! As hard as it is sometimes - it definitely makes us all feel so much better. How could anyone not be happy for that!

[Guest nini]

Is the damage permanent? I've never quite understood that. Isn't it just temporary - and everything goes back to normal when we eat right? Or, by cheating, am I permanently hurting myself past repair? How can I know for sure? Aren't there different levels of intolerance? Some higher than others? Is it possible that I've grown more tolerant of gluten - or has my body just stopped giving the signs of being sick?

thanks for your response! I am happy that you all have found the gluten free diet! As hard as it is sometimes - it definitely makes us all feel so much better. How could anyone not be happy for that!

You are not going to like what I have to say. Celiac is Celiac is Celiac is Celiac. There are no varying levels of tolerance or intolerance. It only takes a molecule to do damage and yes your body has just stopped giving you the signs of being sick. If you are 100% gluten free than yes the damage will begin to heal, however since it only takes one molecule, cheating is absolutely out of the question. You are putting yourself at increased risk of certain kinds of cancers and other related autoimmune disorders. You are doing a disservice to your daughter and your mother that devoted so much energy to keeping you gluten free as a child. I am the mother of a celiac five year old, and I would be absolutely heartbroken if she didn't take responsibility for her diet after I have tried so hard to keep her from experiencing the same kinds of illness and experiences that I had growing up. You absolutely have to be 100% gluten free, no cheating, and consider that your daughter will need to be tested as well.

[Ursa Major]

The damage to the villi isn't permanent, they'll heal (it can take up to five years in some people, usually about a year or two) when you stop consuming gluten. The exception are some people who were diagnosed late in life (like me), were the villi may or may not completely heal.

The biggest problem is, that there can be other permanent damage to other organs, or the intestine, which could cause different kinds of cancers. Undiagnosed Celiacs, or those that cheat, have a magnified risk of developing cancers of the digestive system, even if they don't have any obvious symptoms any more. It takes five years on a strict gluten free diet for the cancer risk to go back to where the average lies.

Have you ever had a follow-up biopsy, to see what the status of your villi is? You may want to do that, just to make sure that there is no damage now. Especially because you didn't know about many ways of contamination, and undoubtedly have been getting some gluten as a result. Maybe not enough to cause obvious symptoms, but possibly enough to damage your villi.

[MallysMama]

Thank you for your replies. Yes, I do have a hard time hearing all of that. I guess I'm in a very late denial of my condition. I guess I don't want to face the fact that the little things I cheat with are actually hurting me. I don't eat a whole sandwhich or eat a lot of anything harmful - so I guess I've been justifying it. The thing I have the hardest with (after reading the posts) is being more careful when I eat out. I don't worry about seasonings or sauces having gluten. I don't eat the bun on a hamburger - but I don't bother ordering it without it. Stuff like that is what I don't want to deal with. I guess I try to be "normal" when I'm really not.

What kind of doctor can check my villi? A family practioner? A gastroenterologist? Some other specialist? That's something else I don't wanna do - I hate doctors! Could they just test my blood and see if I'm okay? Or do I have to endure a biopsy? Any answers to these questions would be very helpful! Thanks!

[Guest nini]

first of all {{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} I know it's not fair, you feel like you are not normal, but the truth is you absolutely are normal, you just have to be more vigilant in what you eat and how you order when you eat out.

A gastroenterologist would be the one that would do a follow up biopsy and blood work, however, I don't really think you need to worry yourself about that. IF you start today, right now committing to be 100% gluten free. If you do that then any damage that you have been doing to yourself will begin to heal. Take a deep breath, relax, and just move on. Move forward. Don't look back at how you've been doing things, look forward to how you are going to make them better.

Today is the first day of the rest of your life!

[floridanative]

You are normal as are we. We are just different from a large part of the population. I feel lucky that I can't imagine ever wanting to cheat since gluten is poison to me. It would be the equivalent in my mind, of saying I just want to have a tiny bit of rat poison on my fish tonight. It's just not going to happen. I'm not neurotic and I'm extremely careful when eating out but I feel as 'normal' as the next person any day. Finding out I had Celiac was a great blessing in my life. Good luck finding the strength to do what you know is right.

[jerseyangel]

Hi--I agree with Nini--having the testing is unnecessary. The thing that should concern you now is being 100% gluten-free. You can't do anything about what has happened in the past few years--but you can begin to heal any damage done--starting today . We are all here to offer support and tips on how to live gluten-free. You can do this

[darlindeb25]

Ursula--I had never heard before that some people never completely heal. I guess I thought if you were gluten free then you should be ok. I don't feel that I ever completely healed, I just didn't realize it was possible. I am 85% better then I was 5 years ago, but I don't feel I will ever be 100%. I was sick for well over 25 years before going gluten free and now I seem to develop more intolerances. I have to be very careful with soy and corn, can't tolerate tomatoes at all anymore and recently I found that tapioca starch tends to cause problems for me. Then there is the peripheral neuropathy I have because of the vitamin and mineral deficiencies I endured from undiagnosed celiacs. I never, never eat gluten, unless it's a freak incident out of my control. Deb

[MallysMama]

Thanks! So far - this will be my third day w/out cheating! Yea for me! haha! However, my hubby wants to go eat today since we both have today off. Now what do I do? I think he's sick of Outback and probably won't want to go there today - so what do I do about any other restaurants?

[Melzo]

Thanks! So far - this will be my third day w/out cheating! Yea for me! haha! However, my hubby wants to go eat today since we both have today off. Now what do I do? I think he's sick of Outback and probably won't want to go there today - so what do I do about any other restaurants?

Other restaurants are sometimes very accomodating to people with celiac disease as long as you explain fully what the disease entails and what they need to do on their part. I tend to stick to steak salads - without the crutons and french fries. (French fries on a salad you say!!!) I really think this is a Pittsburgh thing so you might not have to worry about french fries on a salad. Here I do have to worry. I also tell them that the meat must be cooked seperately and not be marinated in anything. The more bland the better. Also, take some gluten free dressing with you!!!

Steaks are good, as well as some chicken dishes. I have not had any trouble at restaurants - YET. Knock on wood. Don't be afraid to send a dish back if you suspect that there might be gluten in it. Some restaurants will bring the dish out with bread on the plate. I send it back. Sometimes they just don't listen.

Good luck and have a great time with your hubby!

[Guest nini]

Carraba's has a gluten-free menu

Open Original Shared Link

Bonefish Grill has a gluten-free menu that you ask any server for!

Open Original Shared Link

P.F. Changs

Open Original Shared Link

Ted's Montana Grill

Open Original Shared Link

[Nancym]

Is the damage permanent? I've never quite understood that. Isn't it just temporary - and everything goes back to normal when we eat right? Or, by cheating, am I permanently hurting myself past repair? How can I know for sure? Aren't there different levels of intolerance? Some higher than others? Is it possible that I've grown more tolerant of gluten - or has my body just stopped giving the signs of being sick?

thanks for your response! I am happy that you all have found the gluten free diet! As hard as it is sometimes - it definitely makes us all feel so much better. How could anyone not be happy for that!

It can be permanent in some regards. You can get a whole lot of other diseases from being gluten intolerant. I've probably got, or had, at least 2 or 3 already. Mostly autoimmune diseases. Certain forms of cancer, neurological diseases and even diabetes. Eating gluten causes immune reactions that last for months in your intestines, long after the physical symptoms are gone (if you get them). "Dangerous Grains" links almost 200 diseases to gluten intolerance, and I might hit them all at the rate I'm going. :\

[VegasCeliacBuckeye]

If you ever go out to eat at a restaurant a need a fail safe menu item ask for thus

1. Plain lettuce and vegetable salad with no croutons and oil and vinegar in the side

2. Unmarinated, unseasoned grilled plain chicken/steak/fish served with a baked potato or steamed vegetables.

99% of restaurants can do those things.

If you order the chicken, ask if the marinara sauce in the place is gluten-free (it probably is) get a side of it, with a steak you can have A-1, with fish get a little lemon and butter.

Eating out is not hard as long as you:

1. Prepare yourself

2. Educate yourself

3. Assert Your self

P.E.A. -- LOL!

[Lisa]

When ever I go out of town, I take a cooler with me. In that cooler, I have my gluten-free soy sauce, my own salad dressing and my book (Gluten Free Bible) that has pages in different languages that I can show the chef what my dietary issues are. I will in the quick future get the "Trump Dinning Cards" that do the same, althought they are in pocket form.

I just want you to know how serious this is for you. I had many years malabsorbtion, and my brain did not get the proper foods it needed to continue to function properly. As that result, my brain starved, my body structure starved. The good news is that I can rebuild my body, the bad news is that I can not ever regain the brian damage caused by malnoruishment. That is gone and it will never recover.

If that won't ring your bells, nothing will.

I don't mean to be harsh and the computer does not convey concern, but, please consider this a serious change in your life. It is not all that difficult once you get the hang of it.

We are all here to make it easy for you to get you on the road to healing and to prevent further damage to your body.

There are lots of people here that are here to help. That is why Scott created this site. It is all about Celiacs helping other Celiacs.

Please keep asking questions.

Lisa

[Lollie]

Does the brain function NEVER come back? I ask because I definately noticed a difference in my ability to deal with certain tasks or to get organized- both of which I used to be great at. I guess I had hoped that I would regain those skills once my body recouped!

Lollie

[Rachel--24]

Hi,

I cant offer much help as far as eating out because I havent attempted it yet since I've been on the diet. I just wanted to echo whats already been said...you really do need to commit to the diet in order to stay healthy. The other night I went to a lecture my doctor gave about Celiac. He said that they had done biopsies on Celiacs who were following the diet 100%...the participants were then fed some gluten and re-biopsied. They studied the changes in the tissue and did biopsies everyday to observe how long it would take for the tissue to return to what it was before the gluten was given. They found it took 3 weeks.

This means that everytime you cheat your body is having to repair itself. This puts a constant strain on your immune system and yes, it can lead to serious consequences. I'm glad you are going to take the diet more serious now. What might seem difficult to you now, such as eating out, will eventually become second nature once you get used to it. You can also order dining cards that explain your dietary needs to the restaraunt staff. That might make it easier for you.

[Lisa]

Lollie:

I am getting into a field that I am not sure about. Tiffany is the expert in this field. This is my thoughts after taking to my doctor yesterday.

The brain is a VERY complicated organ. If your brain is starved through lack of food to the brain, some of that will never be regained. That depends on the length of malnourisment to the brain. The brain is very much like the heart. If there is a blockage to the heart, in most cases the arteries to the heart will re-route themselves and find a new track.

I can't remember the amount of brain that is active, but I think it is way less than half. So, with continuous stimuli, the brain can find new places for activity and function.

My left side of my body is less responsive physically and I am right handed and most likely left brained. I have noticed a change in lack of articulation and recall. That does not mean that it is gone forever, it just means that my brain need to re-program where to put it.

I am not a medical person, this is just my theory with discussing this with my doctor.

I don't know how any one else feels about this. I definately have found myself with some mental regression, but I do feel,with proper stimulli that it can return to normal with the proper food to the brain.

This is pretty heavy for me on a Friday night.

Lisa

[Ursa Major]

Ursula--I had never heard before that some people never completely heal. I guess I thought if you were gluten free then you should be ok. I don't feel that I ever completely healed, I just didn't realize it was possible. I am 85% better then I was 5 years ago, but I don't feel I will ever be 100%. I was sick for well over 25 years before going gluten free and now I seem to develop more intolerances. I have to be very careful with soy and corn, can't tolerate tomatoes at all anymore and recently I found that tapioca starch tends to cause problems for me. Then there is the peripheral neuropathy I have because of the vitamin and mineral deficiencies I endured from undiagnosed celiacs. I never, never eat gluten, unless it's a freak incident out of my control. Deb

I read that the villi of people that got diagnosed very late (and I've had obvious celiac symptoms for 52 years, unfortunately, not so obvious to ignorant doctors I guess) might never really go back to normal. So, it is not only other problems that we might get, but our villi might actually never recover 100%.

The younger you are when diagnosed, the higher the chance of recovering fully.

[Dlapham celiac & DH]

I read that the villi of people that got diagnosed very late (and I've had obvious celiac symptoms for 52 years, unfortunately, not so obvious to ignorant doctors I guess) might never really go back to normal. So, it is not only other problems that we might get, but our villi might actually never recover 100%.

The younger you are when diagnosed, the higher the chance of recovering fully.

I agree with Ursula, I have not been "lab diagnosed" with C/D, but have been confirmed with D/H by positive biopsy and visual check by the top dermatologist in Oklahoma City. That was 18 years ago and I am now 59+ years old with symptoms going back for 58 years. It is not comforting to see all the possibilities of the late diagnosis, but late is better then not. I went gluten-free the first week of October 2005, and the change in my overall condition is just amazing. I have gained 35 #s since then, and have the best blood work in 15 years or more. My stomach problems (In 1983, I had a gastric resection and Billroth II, because of the atrophied duodenum) have cleared up, and I have never been free from that problem since 12 months old. My upper respiratory system congestion is gone, my memory is better, my cholesterol is up to my normal, my D/H is much less then it was allowing me to drop my dapsone to half what I was using. I had been diagnosed with pernicious anemia and that is looking a lot better, enough so that I no longer have to give myself the B12 shots every week (which were not helping the blood cells anyway). And the list could continue on for a while. The long and short of it for me is that I am thankful to know that what made me think that I was not long for this life is something that can be dealt with and that I do feel better. Not to be to personal, but even the impotence is better. That is on of the symptoms of C/D that we don't see much about.

Some do develop REFRACTORY SPRUE which is not thought to be reversible, but I wonderful if even that would respond if given the correct diet and enough time.

I do not know how far my recovery will go, I just do the best I can and thank God for finding out what is wrong.

[darlindeb25]

I was 46 when I went gluten free and I now realize I had symptoms most of my life. I didn't know then they were symptoms, but now I do. I always had problems with food that contained oatmeal, always had trouble with foods that contained flour-my symptoms worsened after my first pregnancy at 18 yrs old. This may explain why I never feel completely better. Gluten free flours are too heavy for me. My sister is a celiac too and was diagnosed at 43--she is gluten-free for 5 yrs this month. She tells me I am too easy on my tummy, that I need to toughen it up. I don't have time to be ill, I work fulltime and just do not have the time to experiment anymore. I just work with what I know works. Deb

[Ursa Major]

I agree with Ursula, I have not been "lab diagnosed" with C/D, but have been confirmed with D/H by positive biopsy and visual check by the top dermatologist in Oklahoma City. That was 18 years ago and I am now 59+ years old with symptoms going back for 58 years. It is not comforting to see all the possibilities of the late diagnosis, but late is better then not. I went gluten-free the first week of October 2005, and the change in my overall condition is just amazing. I have gained 35 #s since then, and have the best blood work in 15 years or more. My stomach problems (In 1983, I had a gastric resection and Billroth II, because of the atrophied duodenum) have cleared up, and I have never been free from that problem since 12 months old. My upper respiratory system congestion is gone, my memory is better, my cholesterol is up to my normal, my D/H is much less then it was allowing me to drop my dapsone to half what I was using. I had been diagnosed with pernicious anemia and that is looking a lot better, enough so that I no longer have to give myself the B12 shots every week (which were not helping the blood cells anyway). And the list could continue on for a while. The long and short of it for me is that I am thankful to know that what made me think that I was not long for this life is something that can be dealt with and that I do feel better. Not to be to personal, but even the impotence is better. That is on of the symptoms of C/D that we don't see much about.

Some do develop REFRACTORY SPRUE which is not thought to be reversible, but I wonderful if even that would respond if given the correct diet and enough time.

I do not know how far my recovery will go, I just do the best I can and thank God for finding out what is wrong.

Wow, you were not told 18 years ago that the only treatment for DH is a gluten free diet, and that a positive biopsy for DH automatically gives you a diagnosis for Celiac? That's just terrible! But I am glad you figured it out.

[MallysMama]

Carraba's has a gluten-free menu

Open Original Shared Link

Bonefish Grill has a gluten-free menu that you ask any server for!

Open Original Shared Link

P.F. Changs

Open Original Shared Link

Ted's Montana Grill

Open Original Shared Link

Carraba's, Bonefish, and PFChangs are all owned by OSI (Outback Steakhouse Inc.) which is why they all do the gluten-free menu thing. Last night, I won, and we went to Outback anyway... I was too stressed about dealing with any other restaurant (none of those other's are anywhere near where we live).

On to more serious matters. I just don't know if I can do what you guys are so good at! It's really stressing me out. I've never majorly cheated with this diet...it's just been the little things. And I think that's why it is so hard to be good now. I've stayed gluten-free for 3 days now...and it's been harder than I thought it would be. Like today - when I fed my daughter lunch...I cut up a little chicken nugget for her and it was all I could do not to eat a little piece of it. I guess a part of me rationalizes that a small piece of that breaded chicken won't hurt me - I wouldn't even notice any difference in how I felt. I'm learning that it IS hurting me - but it's still hard to get that in my head when it comes down "to cheat or not to cheat?" The temptations are all around me (they have been my whole life, I guess....it just wasn't up to me as much then as it is now). I don't personally know any other person with Celiac...no one in my family has it. (Well - my older sister had Derm. Herp. for a while...but she no longer has any symptoms of it.) I've always been the different one and struggled with that more than I ever realized - till I've thought about it now.

If you don't mind - I'm gonna get even more serious for a minute. When my hubby and I discovered I was pregnant with Mallory - we quickly told our families. I had never considered the possiblity of not being able to have children because of all my body went through when I was just a baby. Well, I guess it was something my mom had worried about (and never told me, of course)....she was so excited that I was able to get pregnant. Well, now that I'm starting to think of the time coming up to have another one (I don't want my kids more than three years apart)....I'm stressing about being able to have any more. Especially because since starting Mallory on food with gluten back in September - that's when I started cheating more. If I hadn't done damage before - is there a possibility I've ruined it now? Females in my family get pregnant pretty easily (pretty much first attempt with mallory). A couple months ago, and I will save the details, I was sure I was going to be pregnant again. The timing was right on (or off - cause we weren't ready)...but it didn't happen. I was so shocked (saddened and relieved at the same time). I guess it's normal for it to take months to get pregnant - but I assumed it'd be just as "easy" as the first time. Now I'm letting the fact that it didn't happen stress me out....even though we're not ready yet anyway. Does that make sense? Has anyone heard of celiac hurting the reproductive organs?

[Rachel--24]

Celiac Disease can cause infertility and miscarriages but this is more likely in undiagnosed celiacs or those who dont follow the diet. If you follow the diet 100% you're chances are just as good as any other healthy person. Another reason why its so important to adhere to the diet. That little piece of chicken nugget is just not worth it.