Frustrated By Friend Who's Dh Is Supposedly Celiac!vent!

[LyndaCanada]

Hi Everyone

I'm sorry but I just have to vent. I have a good friend who's husband is supposedly Celiac for 7 years. Well, I went out for dinner with her last night and she drove me insane. Her dh has never had the biopsy, the bloodtest and does not have low iron. He may very well have some of the other symptoms of Celiac, not really my business but it's her advice is driving me NUTS!!

I was trying to explain to her that right now, I'm extremely sensitive to any gluten, I have been advised by the dietician to do the separate toaster thing, etc,etc. and she's trying to tell me it's not necessary. Because her husband doesn't react as extremely to the odd glutening I guess she figures it's no big deal if he accidently has some cross contamination. I always thought it didn't matter if you got a crumb of gluten in your gut or a whole loaf of bread that the damage is the same regardless of your reaction, am I right about this? She said there is 2 schools of thought " a little gluten won't hurt you" sort of attitude and the die hard, "don't let gluten near me" School of thought.

Anyway, I know she's trying to help me but I wish she'd respect the fact that I'm really freaked out by this and the fact that I have such violent reactions to gluten and I'm SCARED about the potential damage i could be causing.

She also disputed the fact that untreated Celiac can increase your chances of Cancer in the intestines. I mean how do I repsond to this? My own father told me recently that my Aunt had untreated Celiac for YEARS and she recently died of intestinal cancer.

I know that every person who has Celiac has take charge of their own eating habits and health but getting this kind of advice kind of scares me. Am I being overly paranoid or do I just need to tell her to lay off?

Is this something I'm going to have to deal with all the time? It's frustrating.

Thanks for letting me vent!!

Lynda

[tarnalberry]

Anyway, I know she's trying to help me but I wish she'd respect the fact that I'm really freaked out by this and the fact that I have such violent reactions to gluten and I'm SCARED about the potential damage i could be causing.

She also disputed the fact that untreated Celiac can increase your chances of Cancer in the intestines. I mean how do I repsond to this? My own father told me recently that my Aunt had untreated Celiac for YEARS and she recently died of intestinal cancer.

I know that every person who has Celiac has take charge of their own eating habits and health but getting this kind of advice kind of scares me. Am I being overly paranoid or do I just need to tell her to lay off?

Is this something I'm going to have to deal with all the time? It's frustrating.

Thanks for letting me vent!!

You hit the nail on the head - she needs to respect your decisions. She (well, more precisely, her husband) may choose different ones, but that doesn't mean you have to make the same decision he makes.

If you want to respond to her disbelief in the medical studies about the long term effects of untreated celiac, you could go to pubmed, print the abstracts for her, and give them to her. Or you could say "well, you can go look it up for yourself".

You aren't being overly paranoid at all, and you may have to deal with this from time to time, particularly if you don't already exude a very confident "this is my choice and I will give no one the option but to accept it, period" attitude. It kinda reminds me of those days, back when I was in elementary school, when they ran commercials - I think against drugs or rape - with the main tag line being "What part of NO didn't you understand?" It's much the same thing here.

[marciab]

"She said there is 2 schools of thought " a little gluten won't hurt you" sort of attitude and the die hard, "don't let gluten near me" School of thought. "

It is NOT really a "school of thought". It is a matter of real life experience.

Your friend needs to understand that YOU are very sensitive to gluten ... Her husband is evidently going to have to learn this the hard way ...

I will never touch gluten again. I had seizures and ataxia for 16 years and no classic signs of celiac other than IBS. Well, until 2005 anyway.

JMHO ... Marcia

[Rusla]

I would tell her that you do not choose to end up with a bag or cancer because of this disease. If her husband wishes to that is his decision. It is your decision to make not hers how you will eat, what you will eat and your choice not to contaminate yourself. Tell her to respect you and your health by trying not to contaminate you and you will do the same for them. Tell her thanks for her well-meaning advice but you have to do what is right for you.

[Ursa Major]

Sure, there are two schools of thought. The ignorant one, and the educated one. Apparently, hers is the ignorant one.

Her husband might be just as sensitive as you, but doesn't get obvious symptoms from cross-contamination. That doesn't necessarily mean that he isn't doing damage to his intestines every time he uses the same toaster as his wife, for instance.

[gf4life]

I have a friend I have know for more than 5 years. Her husband (ex-husband now) was diagnosed 30 years ago, when it was virtually unheard of and he doesn't think the diet is something he has to follow 100%. His main symptoms are DH and migraines, as well as severe mood swings. Well he thinks it is okay to pick the chicken out of a pasta dish or have a piece of regular cake if he feels like it, eat the filling out of the pie crust, or take the bread off a sandwich and eat the inside. In fact a lot of times he goes ahead and eats the sandwich bread and all. It used to make me crazy. My friend said when they first got together almost 20 years ago, she learned all she could about how to cook gluten free for him and she used to try to make gluten free meals, but he would get mad at her. He didn't think it was that big of an issue.

Well a few weeks after I went of the diet for good, they had a birthday party for their daughter at a local restaurant. I ordered a salad and got sick. He thought I was crazy. He ordered a sandwich and ate the bread. He didn't seem to mind having the rash and he didn't think the migraines were related at all. I hated to think about what his intestines looked like. No one else in his family has ever been tested either, even though they have a family history of mental health issues. Now you and I all know that gluten can attack the brain as well as the intestines and can cause "mental" problems. I would not be surprised if some of the rest of the family also had a problem with gluten!

I get a tiny microscopic amount of gluten and my rash breaks out, I get intestinal problems, brain fog, fatigue, and if I get too much (like I did in December) I start losing a ton of hair. It takes about 2 weeks for a mild glutening to completely heal, and about 2 months for the rash and other lingering issues to completely go away. I think I will stay as gluten free as possible thank you very much. I guess I am of the die hard "school of thought"!

[cajun celiac]

I am too irritated to say what I really think about your friend. I was just diagnosed this month and am currently working through explaining my new diet and the seriousness of it to my friends and family. While most are supportive (and usually have the look of "I am so glad it's you and not me") there are always those few who seem to know more then I do even though I am the one faced with this life changing situation. I guess this is just another celiac side effect...

[debmidge]

Sure, there are two schools of thought. The ignorant one, and the educated one. Apparently, hers is the ignorant one.

Her husband might be just as sensitive as you, but doesn't get obvious symptoms from cross-contamination. That doesn't necessarily mean that he isn't doing damage to his intestines every time he uses the same toaster as his wife, for instance.

If find the wife's attitude very curious...perhaps SHE's convincing her husband that a little gluten won't hurt him because if she doesn't that'll be the end of perhaps eating out, more burdens for her with regard to everyday things and vacationing. I sense a selfish motive - she's demeaning your choice of gluten-free life in order to maintain her selfish deception to her husband. Do you ever talk to him about being gluten-free and does he seem to follow everything his wife tells him or can he think for himself?

[jukie]

Her husband might be just as sensitive as you, but doesn't get obvious symptoms from cross-contamination. That doesn't necessarily mean that he isn't doing damage to his intestines every time he uses the same toaster as his wife, for instance.

So true, Ursula. It's also possible that her husband doesn't respond to cross contamination because he's never actually been gluten free. Just like many of us had some degree of tolerance before going gluten free, his reactions may still be tempered by his body's tolerance for the constant low levels of gluten he's ingesting on his "gluten light" diet.

[Sinenox]

If anyone had any question about whether gluten would affect them in the long term, I'd ask them to follow this tragic story in another part of the forum:

Open Original Shared Link

It's quite sad and all too real. It takes a barely competent doctor to explain that the effects aren't always obvious but are always potentially life threatening. I hope they get wiser.

[Celtica]

Because there are varying degrees of severity with Celiac, she may be right about her husband. I know that personally I do not need to have seperate toasters(not that I ever get to eat toast, for obvious reasons) etc than anyone else -I hadn't even heard of the idea until I read your post, but using the same appliances doesn't seem to hurt me, and I can eat a sandwich(wheat) and while i'll be bloated as heck and in pain for a day or so, it's not long-term pain, and it won't have me incapacitated. Not everyone has it severely, just enough for it to be a nuisance. It's not stupidity, it's a matter of severity of the condition, and possibly, it depends on what your doctor has told you regards 'treatment'.

[2kids4me]

Because there are varying degrees of severity with Celiac,

I beg to differ - there are varying degrees of symptoms in individuals with celiac. The damage to the intestine, however is severe with gluten in any celiac.

This truth was made crystal clear at biopsy -I have 2 children diagnosed celiac. the doctor never said - one is worse than the other, or go ahead and eat a little if it doesnt bother you.

He was emphatic about NO gluten and wants to see the children every year to address any issues about following the diet (teens have harder time than most, sometimes).

Matt - very few symptoms - mild stomach aches, joint pain (which we did not attribute to gluten before diagnosis). Biopsy - subtotal villous flattening, mitotic figues (cells in the middle of divsion - seen when cells are rapidly dividing). Doctor said the flat villi were obvious visually.

Kathryn - migaines, back pain, bloating, stomach aches.... missed a lot of school. Biopsy - patchy areas of flattening, not obvious visually but confirmed by histopathology showing flattened villi consistent with celiac sprue.

The one with the least outward symptoms had the most damage. Both responded to gluten free. Yes my son could probably have a"little gluten" and seem fine - not bothered much...but it would ravage his small intestine and initiate an immune response, thus stimulating the immune sytem and possibly triggering other autoimmune disorders. In fact - had the celiac been diagnosed at a younger age, Matt may not have developed diabetes - the ongoing immune stimulation and leaky gut has an effect.

Everyone is free to choose how they want to live and eat. If someone chooses to eat gluten because they dont see the big deal - that is a choice, but make it an educated choice.....and know what you are choosing and how it will affect you internally

If someone else chooses to eat gluten free (in every sense of the word), then respect that choice - they are wanting to do everything possible to avoid feeling ill, or risk other problems. If someone decides a little gluten wont hurt them - then they are making a choice too... probably based on old info when doctors used to say "you can outgrow it" or "if you feel fine - then eat it".

IMHO

Sandy

[Jestgar]

Very nicely said.

[Dedrasmom]

Hi Marcia, my husband was just diagnosed in December and I have been reading a lot here to try and learn as much as possible. Your mention of seizures caught my attention. My husband has seizures also. In fact, he did not have any of the classic symptoms of celiac until he became anemic several months ago. He has probably had it his whole life because when he was around 1 yr old he almost died because he wasn't absorbing nutrients. Then he was ok until he was around 18 when he started having seizures. If he hadn't started giving blood a few years back (which probably led to the anemia) I doubt we would have a diagnosis yet. (he is 53)

I would love to hear about your experience with celiac and seizures. Are you seizure free now? My hubby goes back to his neurologist next month and I would love to have some good info to share with him and for my hubby to possibly come off his meds or at least reduce them eventually.

Thanks for any info. Belinda in NC

"She said there is 2 schools of thought " a little gluten won't hurt you" sort of attitude and the die hard, "don't let gluten near me" School of thought. "

It is NOT really a "school of thought". It is a matter of real life experience.

Your friend needs to understand that YOU are very sensitive to gluten ... Her husband is evidently going to have to learn this the hard way ...

I will never touch gluten again. I had seizures and ataxia for 16 years and no classic signs of celiac other than IBS. Well, until 2005 anyway.

JMHO ... Marcia

[Jennas-auntie]

Just read recent research (can't find the paper now, sorry!) that 1/4 of one Triscuit or the equivalent amount of gluten is enough to cause the autoimmune reaction in celiac, whether or not the person is aware of a reaction. Therefore, new proposed guidelines are that if someone is consuming this amount of gluten per month, since it takes typically about 4-6 weeks for the body to heal, that they are not really following a gluten free diet and would be considered noncompliant with the diet. Therefore, the people who think, "Oh, I can just have a piece of cake today", if they have celiac disease, even if they are "only" doing this once a month, are really not on a gluten free diet.

[VegasCeliacBuckeye]

These issues are always tricky and everyone has an opinion.

Take mine for what its worth.

My perception on this issue is to look and see what the actual doctors who also have celiac disease and see what they say about it.

So far, I have not found ONE SINGLE DOCTOR that says they themselves intentionally eat gluten or think that "its not a big deal" or talk about "there are two schools of thought"...

Its nonsense and its usually espoused by people who are not symptomatic, who have not read up to date literature or do not have the will power to do what is best for their bodies.

If intentionally choosing to introduce a toxin like gluten into your body is not stupid then what is? I do accidentally get glutened every once in a while, but I haven't "cheated" since the summer I was diagnosed.

If they are consuming gluten because the doctor told them it was ok to do so, then its malpractice.

(Unless of course the Dr. was going to perform testing or an endoscopy)

[2kids4me]

If they are consuming gluten because the doctor told them it was ok to do so, then its malpractice.

well said....

To me its akin to telling an alcoholic to have a drink during holidays... so he doesnt feel left out

or as long as he feels okay while he's drinking - it shouldn't hurt him.

Telling the smoker who's trying to quit- that its okay if he/she smokes occasionally - it wont do enough damage to be worried about.

To tell the mom of a child with food allergies - try him/her with the food every few years because they can outgrow some allergies.

Tell the diabetic - its okay to have a hot fudge sundae, as long as you feel okay while you eat it - it must be fine. After all the only after effect will be thirst and frequent bathroom visits... and it can be corrected with more insulin.

Why would any doctor in this day and age tell a patient with celiac - as long as you feel okay - you can "cheat"....

But then lots of doctors smoke and we know that's not a healthy choice

Lots of diabetics dont follow their diet...

Sandy

[emmabetti]

I don't think you are being paranoid at all. My doctor told me stories about patient who had bread crumbs in their butter and it totally upset their system. She said that their are also others who aren't necessarily a celiac, but have an intolerance to gluten or wheat. Meaning that it wont damage their small intestines like it would a celiac, but just cause them to have a bad day or other side effects.

The individuals you were dining with just might be intolerant to gluten. Whereas you are a celiac. Keep to what makes you feel good and healthy. Don't let other influence your diet.