Family Says I'm Paranoid And Should Go Back To Eating Gluten

[mamaupupup]

It's true! Thank you again!

[Ninja]

I just wanted to say: YOU are the only one who truly knows how you are feeling. Doctors, family and friends are there to help — not to tell/direct. You get to choose where, when and how they can assist. Sometimes, advocating for yourself requires a level of ruthlessness.

Maybe you could try writing a letter to your family? I've found that many times verbal communication can be easily overlooked by people who don't want to hear it, whereas written allows for more time and consequently, impact.

Good luck!!

~Laura

[CR5442]

So feeling for you and your predicament. Families can be very tricky can't they?! I think mine only accept that gluten is bad for me because I was getting awful migraines right up until I stopped eating the stuff. Since then, I haven't had one migraine and it has been 8 months... touching wood here! It does help to keep things to yourself though, I have found. The more I talk about it the more my family roll their eyes! I guess you live with your family - so it isn't as easy for you to avoid possible CC even though they are gluten free in the main. Could you persuade them to give you an area in the kitchen to yourself and a shelf in the fridge. At least that way you could avoid any possible contamination. As for eating out... I don't really eat out any more. If I do I have things like salad with no dressing or baked potato - and then just eat the inside. There is not much that will get passed a potato skin! Sounds really dull I know but at least it might help.

What I found really helped is to cook and feed my friends things with no gluten to show them that it can be equally tasty etc. They do seem to be quite a lot more tolerant now. And I was wondering if your area has any gluten free restaurants. They do exist, even over here in the uk!

[IrishHeart]

Sometimes, advocating for yourself requires a level of ruthlessness.

Maybe you could try writing a letter to your family? I've found that many times verbal communication can be easily overlooked by people who don't want to hear it, whereas written allows for more time and consequently, impact.

You're so right, Laura! There is a level of self-preservation here that is required--with family, friends, and doctors. Only YOU know your body best.

And I also agree about writing the letter. I wrote my family and friends an informative letter after DX and it really helped me to get it all down and it helped them to understand all that had happened to me and why it impacts them as well.

Of course, what they DO with that information is their choice.

[llama3]

What I found really helped is to cook and feed my friends things with no gluten to show them that it can be equally tasty etc. They do seem to be quite a lot more tolerant now. And I was wondering if your area has any gluten free restaurants. They do exist, even over here in the uk!

There's a restaurant here that serves gluten free food (but they also serve glutenous food) and I've eaten there twice, both times had problems afterwards. I don't know if it was from CC or because I'm still having trouble with a lot of foods, but either way I'd rather just stay home and eat food I know won't hurt me. I'm finally at a point where I would rather eat my own food and feel better, even if it means offending someone. And, I am getting a lot better at cooking.

You're so right, Laura! There is a level of self-preservation here that is required--with family, friends, and doctors. Only YOU know your body best.

And I also agree about writing the letter. I wrote my family and friends an informative letter after DX and it really helped me to get it all down and it helped them to understand all that had happened to me and why it impacts them as well.

That is a good idea. I think I'll wait until after I've seen this new doctor. I'm hoping he can diagnose me on the basis of my elimination diet, as well as testing for what else might be wrong. I know it will be more convincing to others if I have a doctor's confirmation.

[IrishHeart]

I think I'll wait until after I've seen this new doctor. I'm hoping he can diagnose me on the basis of my elimination diet, as well as testing for what else might be wrong. I know it will be more convincing to others if I have a doctor's confirmation.

Unfortunately, many people never get a "firm DX" from a doctor, especially from an elimination diet. They go by the diagnostic criteria in place. (I am sure you have read enough posts on here to know all this by now) and this is when you have to say "I know what it is and I will do what it takes to feel better and it does not matter whether anyone else believes me or not."

Best wishes!

[Lori2]

Six months after the gastroenterologist told me to

[CR5442]

Six months after the gastroenterologist told me to

[Ninja]

Sometimes doctors will diagnose based on your reaction to a gluten challenge (bad) and the alleviation of those symptoms after removing gluten again.... plus any other issues; unexplained vitamin deficiencies, genetic markers, etc. The fact is, no one can really assume a gluten intolerance cannot turn into Celiac. Our bodies don't work in segregated systems, like many doctors seem to think.

Some doctors are even crazy enough to IGNORE the early signs of damage to the small intestine! However, I understand your desire for an accurate and firm diagnosis. I hope your doctor is flexible and willing to work with you on this.

[IrishHeart]

1. I hate feeling like garbage.

2. I don

[llama3]

Unfortunately, many people never get a "firm DX" from a doctor, especially from an elimination diet. They go by the diagnostic criteria in place. (I am sure you have read enough posts on here to know all this by now) and this is when you have to say "I know what it is and I will do what it takes to feel better and it does not matter whether anyone else believes me or not."

Thanks! This doctor is a naturopath as well as MD so I'm hoping he will be more willing to LISTEN to me and to my experience (a doctor - listen to a patient's experience? shocking!), but if not, I will certainly advocate for myself, as I have had enough of being pushed around by doctors. You are right, ultimately I have to know what I know and be firm about it.

[IrishHeart]

Thanks! This doctor is a naturopath as well as MD so I'm hoping he will be more willing to LISTEN to me and to my experience (a doctor - listen to a patient's experience? shocking!), but if not, I will certainly advocate for myself, as I have had enough of being pushed around by doctors. You are right, ultimately I have to know what I know and be firm about it.

Stand firm and realize that he may say he cannot DX you with Celiac without a proven biopsy, but he may grant you a NCGI DX, if he is so inclined. Depends on how enlightened he is. Good luck, hon. I finally found one of those amazing docs who listens and works tirelessly to help me; maybe you will, too!

You in NY by any chance??? I'll send you to him!

[llama3]

Stand firm and realize that he may say he cannot DX you with Celiac without a proven biopsy, but he may grant you a NCGI DX, if he is so inclined. Depends on how enlightened he is. Good luck, hon. I finally found one of those amazing docs who listens and works tirelessly to help me; maybe you will, too!

You in NY by any chance??? I'll send you to him!

Not in NY. But thanks! I actually have a couple of great doctors, but they are both specialists in other fields, so they can't help me on this one.

[IrishHeart]

Not in NY. But thanks! I actually have a couple of great doctors, but they are both specialists in other fields, so they can't help me on this one.

Okay, hon--best luck and keep us posted!!!! I'm rooting for you!

[plumbago]

For example being woken up by D is not an IBS symptom so if that is happening to you be sure to mention it and don't just say you are having cramps and D.

I wanted to pick up on just this part of your answer to the original question.

I have a friend who IS woken up by D in the middle of the night. Can you expand on your comment a bit more? I've posted here, trying to get suggestions. My friend does think (as do her drs) that it is IBS.

Thanks.

Plumbago

[CR5442]

I wanted to pick up on just this part of your answer to the original question.

I have a friend who IS woken up by D in the middle of the night. Can you expand on your comment a bit more? I've posted here, trying to get suggestions. My friend does think (as do her drs) that it is IBS.

Thanks.

Plumbago

What other symptoms does your friend have. It is not normal to be woken at all to have a bowel movement in the night and I would hesitate to say that it is IBS, as this is a catch all term for anything the docs can't explain! It could be a particular food intolerance or a number of other things.

[Lori2]

What a person reads on a forum proves nothing; however, on a forum I was just on, two people stated that their doctors told them that if their diarrhea awakened them in the middle of the night, they should look for a reason other than IBS.

[livelifelarge24]

A reallllly important point that the leader of my celiac support group pointed out to me - feeling super depressed, frustrated, and hopeless are total red flags that you've been glutened. When I joined the support group it was because I was feeling all of those things and very scared. Turned out I was definitely being cross contaminated. Even the most minute amounts affect me. I am sorry your family isn't very supportive :/ In my experience it is best to focus on you and getting yourself healthy and happy and with time they will see the improvement in you. If you are celiac and and not 100% avoiding all gluten and cross contamination then it is very likely for you to still feel cruddy. Do you live in a gluten-free household? This is very important. I had to kick my roommate out because he just couldn't follow the guidelines to keep me safe. Also, do you check any shampoos, lotions, makeups, etc.? I read a poorly misinformed book when I first was diagnosed that said if you're not eating it, that it doesn't matter - BS! I have gotten sick from mascara that had wheat in it, shampoo, even hairpsray. You ingest small amounts of those products and they build up and you react. Not everybody reacts to the small amounts but it sounds like you probably do.

It can feel so frustrating to be surrounded by people that don't understand. I highly recommend joining a local support group. If found mine through the Celiac Sprue Association website. I have learned so much from them and through the group have even found a few amazing restuarants that I can eat out at! We share recipes, stories, and rants about family and friends that just don't "get it". I also got into some inexpensive counseling so that I have somewhere to go each week and talk about me and my experiences and frustrations. I highly recommend that.

Stick to your guns and give your family some time. My dad is the most old - school skeptical man on earth. He thought this was some fad diet or made up thing. It has taken me 10 months of being gluten free and him seing HUGE changes in my life, heatlh and behavior. I could NOT believe it when he actually accepted a celiac brochure from me a couple of weeks ago and was even more in dismay when I received a call from him that he is now being tested for celiac Never give up hope!

You WILL be okay. It will be hard. And it will be easy. It will get frustrating, then you will find hope. You will find an amazing restuarant you can eat at then you will cross contaminate yourself on accident. Its a learning experience but it does get easier all the time. Its a roller coaster! The best advice I was given was to really focus on getting myself as healthy as possible so that if I DO happen to get glutened, my body is super strong and healthy to fight it. Best wishes to you and keep your chin up

[plumbago]

What other symptoms does your friend have. It is not normal to be woken at all to have a bowel movement in the night and I would hesitate to say that it is IBS, as this is a catch all term for anything the docs can't explain! It could be a particular food intolerance or a number of other things.

Hi,

The friend of mine I mentioned has for the last eight months been suffering through constant - 4 times a day - D and lower abdominal pain (hypogastric region - not inguinal). This pain often wakes her in the middle of the night. She is young, mid-20s.

The gastroenterologist scoped her large intestine. What the dr found was nothing that worrisome - no polyps, no outward indication of inflammation, just very mild redness. The exam also revealed interior and external hemorrhoids - probably because of the constant D.

She had a Celiac workup done and her antibodies were not high. They were fine. Her absorption of vitamins is good. Most other indicators on the blood tests were fine.

She is slightly - slightly - sensitive to milk, she says. So she does not drink it alone, but if a brownie has it or some other food has milk as an ingredient, she will eat it.

The last time she had a solid stool was many months ago. Nevertheless, she gave a sample to the gastroenterologist (I'm not sure what they would be searching for), and is expecting the results back within the next week or so.

Plumbago

[Skylark]

The gastroenterologist scoped her large intestine. What the dr found was nothing that worrisome - no polyps, no outward indication of inflammation, just very mild redness. The exam also revealed interior and external hemorrhoids - probably because of the constant D.

Celiac disease biopsies are taken from an endoscopy, not a colonoscopy. Your friend needs celiac biopsies becasue the blood tests have a 20-25% false negative rate. She needs an experienced GI who will take multiple biopsies to do it too. Some doctors only take one or two and miss the damage. It is also possible that she is severely gluten intolerant, in which case all her tests would be negative.

[IrishHeart]

I wanted to pick up on just this part of your answer to the original question.

I have a friend who IS woken up by D in the middle of the night. Can you expand on your comment a bit more? I've posted here, trying to get suggestions. My friend does think (as do her drs) that it is IBS.

Thanks.

Plumbago

Perhaps it may yield you more answers to post this question about IBS symptoms as a separate thread?

Also, since it is an entirely different topic than the OP's original post, we should try to get back to the subject at hand (in all fairness to her)

Thanks!

[llama3]

A reallllly important point that the leader of my celiac support group pointed out to me - feeling super depressed, frustrated, and hopeless are total red flags that you've been glutened. When I joined the support group it was because I was feeling all of those things and very scared. Turned out I was definitely being cross contaminated. Even the most minute amounts affect me. I am sorry your family isn't very supportive :/ In my experience it is best to focus on you and getting yourself healthy and happy and with time they will see the improvement in you. If you are celiac and and not 100% avoiding all gluten and cross contamination then it is very likely for you to still feel cruddy. Do you live in a gluten-free household? This is very important. I had to kick my roommate out because he just couldn't follow the guidelines to keep me safe. Also, do you check any shampoos, lotions, makeups, etc.? I read a poorly misinformed book when I first was diagnosed that said if you're not eating it, that it doesn't matter - BS! I have gotten sick from mascara that had wheat in it, shampoo, even hairpsray. You ingest small amounts of those products and they build up and you react. Not everybody reacts to the small amounts but it sounds like you probably do.

It can feel so frustrating to be surrounded by people that don't understand. I highly recommend joining a local support group. If found mine through the Celiac Sprue Association website. I have learned so much from them and through the group have even found a few amazing restuarants that I can eat out at! We share recipes, stories, and rants about family and friends that just don't "get it". I also got into some inexpensive counseling so that I have somewhere to go each week and talk about me and my experiences and frustrations. I highly recommend that.

Stick to your guns and give your family some time. My dad is the most old - school skeptical man on earth. He thought this was some fad diet or made up thing. It has taken me 10 months of being gluten free and him seing HUGE changes in my life, heatlh and behavior. I could NOT believe it when he actually accepted a celiac brochure from me a couple of weeks ago and was even more in dismay when I received a call from him that he is now being tested for celiac Never give up hope!

You WILL be okay. It will be hard. And it will be easy. It will get frustrating, then you will find hope. You will find an amazing restuarant you can eat at then you will cross contaminate yourself on accident. Its a learning experience but it does get easier all the time. Its a roller coaster! The best advice I was given was to really focus on getting myself as healthy as possible so that if I DO happen to get glutened, my body is super strong and healthy to fight it. Best wishes to you and keep your chin up

Thank you. I have tried to make my house gluten-free ... replaced pots, pans, cutting boards, etc. I didn't replace things like plates or silverware. I checked all my personal care products and just realized last week that my cat's food - which I thought was gluten-free - actually isn't (which is a problem because he likes to rub himself on my face ...) so I'm in the process now of changing his food.

Most people do seem to think it's a fad diet. I have a relative who's now asked a couple of times, "So when someone stops eating gluten and then eats it again, they get sick?" And I have to explain again, "ONLY if they are already gluten-intolerant!" Why would I just eliminate all of my favorite foods for no reason so that when I eat them in the future, I would get sick? I guess part of the confusion is that I didn't seem sick, and if you're young and you look healthy, people assume you are.

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...

[IrishHeart]

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...

That's great, honey--having emotional support from loved ones is crucial! Best wishes to you!

[Skylark]

Thank you. I have tried to make my house gluten-free ... replaced pots, pans, cutting boards, etc. I didn't replace things like plates or silverware. I checked all my personal care products and just realized last week that my cat's food - which I thought was gluten-free - actually isn't (which is a problem because he likes to rub himself on my face ...) so I'm in the process now of changing his food.

Most people do seem to think it's a fad diet. I have a relative who's now asked a couple of times, "So when someone stops eating gluten and then eats it again, they get sick?" And I have to explain again, "ONLY if they are already gluten-intolerant!" Why would I just eliminate all of my favorite foods for no reason so that when I eat them in the future, I would get sick? I guess part of the confusion is that I didn't seem sick, and if you're young and you look healthy, people assume you are.

But, you'll all be happy to know that I've patched things up with my mom and hopefully things will be uphill from here ...

That's great. I'm glad you sorted things out with your mom and got all the gluten out of your house. Hopefully you'll be able to avoid any more bad glutenings for a long while.

Right now gluten-free IS a fad diet. Unlike Atkins or the other fads, when Hollywood moves on to another diet, as many as 6% of Americans may be permanently gluten-free from celiac or gluten intolerance.

[llama3]

Hi, I haven't been on this forum for over a month, but I thought I should give an update just in case someone remembered or came across the thread and wanted to know what happened. I've now been twice to a holistic doctor who has approved my diet (I'm basically doing the GAPS diet), accepts my self-diagnosis by elimination diet and agrees that with my various health issues I should not be eating gluten. I am feeling so much better digestion-wise though still having other problems. My family is being much more accepting and I was able to stay on the diet while visiting my parents for several weeks, with only one tense moment.

Thanks again for being so supportive, everyone.