It's Just A Marketing Fad, Just Like Atkins!?

[wantsomedammpizza]

I have been gluten-free for nearly a year. I was initially real excited to have a diagnosis and not puke everyday, but now its setting in that I will never have certain food items.

What really irks me though is that when I eat with certain extended family and friends, they make comments about how the diet is a marketing ploy, or a silly fad, or how fifty years ago, no one had celiac. I also get comments that I shouldn't burden my husband with having to buy such expensive food items (not really true at all- I do the diet very cheaply). I really feel that the same extended family members that tease me, are actually carrying genes for celiac. Quite a few people in my family have had colon cancer, and other serious digestive disorders. There is no way I could convice them to go in for a test, if they insist the gluten-free diet is just marketing.

So can anyone offer me some tips on how to respond? I usually just say that I'm happy that I am healthy, not throwing up, and weigh over 95 pounds for the first time in years.

[Ahorsesoul]

50 years ago Mayo did a study. Print it and hand it out to them. They may or may not believe it but you can provide them the information. Then just stick to your diet. Remember what they won't believe only hurts them. They may always decide to always be ignorant.

Open Original Shared Link

[wantsomedammpizza]

50 years ago Mayo did a study. Print it and hand it out to them. They may or may not believe it but you can provide them the information. Then just stick to your diet. Remember what they won't believe only hurts them. They may always decide to always be ignorant.

Open Original Shared Link

Wow, that is amazing. Thank you so much for this link, and the advice as well.

[tmbarke]

My families response was - well, guess it's fruits and veggies for you!

I wanted to slap them........hard.

Being insensitive is one of the cruelest and selfish acts of anyone to make someone feel worse than you already do having to go thru such a life changing event.

Gloat! Stand tall knowing that you have the answers to your misery and are able to do something about it!

Your journey is yours and yours alone. You're doing this for you because it's your life.

Prove to yourself that you can succeed - they'll follow along eventually with encouragement because at this time, they're too narrow minded to be be supportive.

If this comes up again, politely ask them to pick a different subject - or just redirect it somewhere else.

You can't argue with (pardon me) 'idiots' cuz no one will be able to tell the difference.

Stay strong and conquer!

I'm routin' for ya!

Hugs!

[tarnalberry]

"Yeah, it's a fad diet, like diabetes. And like peanut allergies. Totally a fad, with no basis in medical science. What can I say, I like pointless fads that have no link to reality. Makes life more interesting, especially with conversations like this."

Well, perhaps I'm a bit snarky...

[psawyer]

Well, perhaps I'm a bit snarky...

Yeah, but you know we love you for it.

[Yup]

I have been gluten-free for nearly a year. I was initially real excited to have a diagnosis and not puke everyday, but now its setting in that I will never have certain food items.

What really irks me though is that when I eat with certain extended family and friends, they make comments about how the diet is a marketing ploy, or a silly fad, or how fifty years ago, no one had celiac. I also get comments that I shouldn't burden my husband with having to buy such expensive food items (not really true at all- I do the diet very cheaply). I really feel that the same extended family members that tease me, are actually carrying genes for celiac. Quite a few people in my family have had colon cancer, and other serious digestive disorders. There is no way I could convice them to go in for a test, if they insist the gluten-free diet is just marketing.

So can anyone offer me some tips on how to respond? I usually just say that I'm happy that I am healthy, not throwing up, and weigh over 95 pounds for the first time in years.

The Calgary Children's Hospital just did some research on Celiac. They tested 1000 random children and 17 were celiac, that is 1 out of 58. The is 90% more gluten in wheat today then a hundred years ago.

[carsondcat]

I have been gluten-free for nearly a year. I was initially real excited to have a diagnosis and not puke everyday, but now its setting in that I will never have certain food items.

What really irks me though is that when I eat with certain extended family and friends, they make comments about how the diet is a marketing ploy, or a silly fad, or how fifty years ago, no one had celiac. I also get comments that I shouldn't burden my husband with having to buy such expensive food items (not really true at all- I do the diet very cheaply). I really feel that the same extended family members that tease me, are actually carrying genes for celiac. Quite a few people in my family have had colon cancer, and other serious digestive disorders. There is no way I could convice them to go in for a test, if they insist the gluten-free diet is just marketing.

So can anyone offer me some tips on how to respond? I usually just say that I'm happy that I am healthy, not throwing up, and weigh over 95 pounds for the first time in years.

It bothers me that you're bothered by what they think.... Celiac Disease was first described by the medical profession as a disease as early as the 1800's it just wasn't given the name Celiac Disease at that time but the symptoms were recognised and it was known that feeding infants with different food alleviated the symptoms of the disease...... failure to thrive has been the biggest easiest signal for everyone to see and it astounds me that there are still so many people undiagnosed. AlthoughI wasn't diagnosed until i was 42 the first sign of celiac disease came when at the age of 18 months i appeared to stop growing, i was head and shoulders shorter than any of my peers I would eat as if I'd never seen food before and was stick thin. my family bless them were envious of my slenderness, but they never saw me rolling around the floor in agony from the pain after i ate or sweating buckets as i leant over the toilet bowl throwing up, or not able to walk down the street without falling over because my iron levels were zero and my haemoglobin levels were in my boots, not to mention the horrific headaches that would last days and days...

Diagnosed by blood tests and biopsy I have been Gluten Free now for 5 years and FOOD is my MEDICATION, i would never knowingly eat anything that would put me back in such poor health, so don't think about gluten-free as going without. More i count my blessings when i see people of my age overweight and ageing quickly, gluten-free is a very healthy way to eat, my husband eats the same as i do (because it's easier than trying to seperate gluten-free from non gluten-free) and he is slim and healthy and looks a lot better than other men his age. I don't miss what i used to eat at all because it is associated with being very malnourished and extremely unhealthy. My Grandmother died from bowel cancer and we believe she was an undiagnosed Celiac i remember when as a child i would see her rocking back and forwards rubbing her stomache and she was also short and very thin......... what can i say failure to thrive enough said....

Except ignore the comments, as a community we all know differently.

[YoloGx]

I agree--at this point they know the score as much as they are willing to, so just ignore their comments and change the subject. Alternatively, just don't eat dinner with them any more if they prove to be too obnoxious.

I have had to do this latter choice since several family members have actually made me ill by spreading flour dust in the air and then blamed me. Their obnoxious disrespect is more than I want to deal with. So for me I have had it; its just not worth the pain. I just tell them either I have already eaten or have other plans and need to leave or whatever.

If there is any "explanation" for their rude behavior its that often untreated celiac can make people crabby, anxious and mean, amongst other problems. I think also they are afraid of having to be "different" They don't want to endure the social inconvenience. This is understandable in some ways--however its not my choice or undoubtedly yours since the social misfit part is far less of a problem for the likes of us than ill health.

Eventually your own good health compared to their ill health may penetrate their consciousness--or not. So far its their choice to ignore it and suffer, and your choice to not ignore it and be healthier. Celebrate your own good fortune to not be so pig headed! And let all that family stuff go!

Bea

[ang1e0251]

We always criticize the faults we secretly see in ourselves. Maybe when they "tease" and minimize your illness, they feel less afraid of it happening to themselves. Why is it important to them what you eat? Are they afraid you might eat their share of vegetables? Maybe they feel you do it to get attention and they don't want to share the spotlight?

I sit back and look at how many of my relatives have diabetes and other health conditions and how little they do to manage it. I feel lucky that I was forced to eat in a healthier way and now it is no big deal. When I have had to make other food restrictions, I could do it without trauma. If they were asked to do it, I think they would first, faint, and then go running to the nearest denial closet!

[Ahorsesoul]

Why is it important to them what you eat? Are they afraid you might eat their share of vegetables?

What an excellent comeback!

[jerseyangel]

We always criticize the faults we secretly see in ourselves. Maybe when they "tease" and minimize your illness, they feel less afraid of it happening to themselves.

This is so true--definitely the case with several of my relatives.....

[still tiredofdoctors]

Given that my reputation somewhat precedes me , I simply tell it like it is.

If someone says, "Oh, you have that food allergy." I say, "No, actually, it is an autoimmune disease. Like Rheumatoid Arthritis or Lupus. It is very serious and potentially very dangerous."

If they say it is a fad, I say, "Yes . . . Like Diabetes."

When I asked my sister to please NOT cut angel food cake around the strawberries that I could eat, she rolled her eyes and said, "Oh yes -- I forgot -- no GLUTEN for you." I swiftly smacked her at the bottom of her skull -- where the cerebellum is. She said, "What was THAT for?" I said, "Why don't I continually smack you there until you sustain the same damage to your cerebellum that gluten has done to mine. Then, when you can't coordinate your movements and you need to be in a wheelchair like me, I will ask you if you want me to hit you there some more. Do you now understand WHY I don't want more gluten?"

My answers are swift and to the point. At times they are educational, and at times they are mean-spirited -- depending upon the first comment's delivery.

What I have found in the years that I have been gluten-free is that the general population -- by and large -- does not WANT to know about Celiac, Gluten Intolerance or Gluten Sensitiviy. There are a few wait staff that I have encountered that have been outstanding -- and certainly gone the extra mile. Subsequently, I ask for their manager, tell him/her what an outstanding employee they have -- and tip 25%. When the wait staff then thanks me for doing that, I tell them that they are one of the rare type of people I encounter, and I appreciate them very much. It works well for me.

Celiac has definitely gotten more attention since I first began living a gluten-free lifestyle. While by and large it has so VERY much helped us, occasionally it does work against us. That's just how it is, though.

Another thought: I do carry with me the cards from GIG -- that explain to wait staff and management what Celiac is, why it is important that I do not ingest gluten and the dangers of cross-contamination. They are handy for those who don't know about Celiac but are interested.

Hope this isn't too harsh an approach, but I also hope it helps!

[Ahorsesoul]

still tiredofdoctors!, Love you approach! Sometimes that's exactly what it takes for people who think it's a fad diet.

[YoloGx]

Dear "Still Tired of Doctors!"

I love your approach! Wish I had the cahungas to smack my siblings on their heads etc. Instead I yelled at them after they did what I asked them not to do and got repeatedly ill afterwards due to CC. It didn't get through however. In the end I am deemed both too sensitive and too crazy. So I just avoid them in that area. No more Birthdays, Thanksgiving or Christmas dinners with them after what happened last year let me tell you!

I have also had similar experiences with doctors. For the most part I try not to use them unless its absolutely necessary. And even then I need to watch them like a hawk. If I don't unfortunately I usually end up wishing I had...like recently when I got antibiotics for an ear infection. The antibiotic was worse than the infection! I am still recovering, almost a month later... He faked me out since he seemed charming and said his best friend has celiac...

Bea

PS--it would be great for you to write a humorous short story (or more) about some of these experiences...

[AKcollegestudent]

I have also had similar experiences with doctors. For the most part I try not to use them unless its absolutely necessary. And even then I need to watch them like a hawk. If I don't unfortunately I usually end up wishing I had...like recently when I got antibiotics for an ear infection. The antibiotic was worse than the infection! I am still recovering, almost a month later... He faked me out since he seemed charming and said his best friend has celiac...

Glad I'm not the only one with idiot doctors. My doc prescribed an antibiotic for a sinus infection and I ended up really sick until we figured out there was gluten in it. (In her defense, it was actually idiot pharmacists. But I'm still not feeling well so I'm a bit pissy still.)

[chasbari]

Eventually your own good health compared to their ill health may penetrate their consciousness--or not. So far its their choice to ignore it and suffer, and your choice to not ignore it and be healthier. Celebrate your own good fortune to not be so pig headed! And let all that family stuff go!

Bea

Unfortunately I see denial even with this. I am in better health than I have ever been. Yes, I lost a lot of weight initially and yes, I am still hungry and healing ...but... I would have never imagined that I could be healing from such significant damage and see my other autoimmune diseases disappear and yet now everyone seems to think I am so sick and that it must be so terrible to have to eat the diet I now follow... I chose to eat this way because it is making me so much healthier but folks around me seem to re-frame it as some sort of death sentence. I see a number of people in my family I know would be far better off gluten-free that will never consider it because they are in denial and they reinforce it by trying to pity me.....give me a break.

[ang1e0251]

When I asked my sister to please NOT cut angel food cake around the strawberries that I could eat, she rolled her eyes and said, "Oh yes -- I forgot -- no GLUTEN for you." I swiftly smacked her at the bottom of her skull -- where the cerebellum is. She said, "What was THAT for?" I said, "Why don't I continually smack you there until you sustain the same damage to your cerebellum that gluten has done to mine. Then, when you can't coordinate your movements and you need to be in a wheelchair like me, I will ask you if you want me to hit you there some more. Do you now understand WHY I don't want more gluten?"

Love it! Sometimes I would dearly love to smack some of them in the head.

[still tiredofdoctors]

The antibiotic was worse than the infection! I am still recovering, almost a month later... He faked me out since he seemed charming and said his best friend has celiac...

Bea

PS--it would be great for you to write a humorous short story (or more) about some of these experiences...

Bea,

I have had some pretty awful experiences with physicians. The reason I sero-converted to the neurogenic celiac vs. gluten sensitivity (which I didn't know I had) was because in October of 2002, while hiking in New Hampshire's White Mountains I was bitten by a tick. Evidently, I must have looked like a delicacy! AND a good place for this little bug to purge Lyme, Babesia, Bartonella and Erlichia. FOUR TICK-BORNE DISEASES!

These predisposed me to developing what I NOW know is the very COMMON "watershed" of autoimmune diseases (I have a bunch , , , ) and the neurogenic celiac was the third one I think. It also predisposed me to being susceptible to the mycoplasm that is a bacteria that emerges after TOXIC MOLD spores burst. Yep -- we had that in our house, and had to move. I have "mycotoxicosis" -- and it has caused damage on several parts of my brain that show up as "white spots" -- 'BUT DON'T LOOK LIKE MULTIPLE SCLEROSIS!" (direct quote from one MD). I have actually been fired from a doctor because I told him that "I couldn't give a rat's (arse) if I ever saw HIM or another doctor again IN MY LIFE." He punched my buttons -- long story.

I am on 15 prescription medications regularly -- daily. I also receive IV meds through the port in my heart twice daily. When I am given a prescription, I INSIST that the pharmacist either a) call the manufacturer of the company that produces the medication or hey -- that was supposed to be a "B"! give ME the phone number so that I can call. The experiences I have had with my medications, at least, is that the manufacturers of their generic "knock-off" use gluten-containing ingredients as the binding substance because it is less costly. I check the manufacturer of the name-brand as well as the manufacturer of the generic that the pharmacy carries. If the generic brand's representative even WAFFLES when I am talking with them, I call my doctor and ask they add "Dispense As Written" or "Name Brand Only". Legally, you can also insist on the name brand, as well. Don't let the pharmacy fool you. You have that right. In my case, however, if I insist on name brand vs. my doctor, my co-pay is a LOT more.

I also have to take 12 different supplements and the other occasional prescription meds brings the scripts up to 23. I try to stay diligent about continuing to call the manufacturers to ensure that they are still NOT using gluten as a binder. Sometimes it feels like a full-time job . . . but, because I don't have a GI reaction, I won't know I've been "glutened" until more damage is done to my cerebellum -- as diagnosed by further degeneration on an MRI. It takes about 9 months before that appears.

I have "weeded out" the physicians that I don't care for. I have decided that I am not going to waste my insurance benefits nor my money going to someone who isn't helpful and supportive. I see my "tick" doctor (!) in NYC -- and give regular updates via email and my primary care doctor who is teetering on the edge of being replaced!

We are consumers, whether it's groceries, medication, take-out food, dining in or physicians. We deserve respect and dignity throughout all those arenas. If we do not get it, we need to graciously insist upon it. I used to be the most passive person I knew. When I was in PT school, it was DRILLED into us that WE had to be the advocate for our patients with physicians -- and that we WOULD do battle with them. (I nearly pooped my pants when they first said that!)

Through advocating for my patients, though, I learned to advocate for MYSELF. It isn't easy, and every now and then it isn't very pretty -- but I do it because it is necessary. When you think of it in those terms, it gets a little easier . . . and a little easier . . . and a little easier.

Please take care of yourself,

Lynne

P.S.: Mtndog has been after me for years to write a book . . .

[mbrookes]

I hope it is the experiences some of you have had that are unusual and not mine. Every person, family member or friend, that I am in contact with has been very concerned about my health and they knock them selves out trying to be helpful.

A woman I work with but don't even know away from the office brought me a pkg of gluten-free biscuit mix. She saw it while shopping a thought of me.

No one has said a single mean or belittleing comment.

Surely more people have this kind of experiences. I cannot imagine being that cruel and unfeeling toward a stranger, much less a family member or friend.

[YoloGx]

Bea,

I have had some pretty awful experiences with physicians. The reason I sero-converted to the neurogenic celiac vs. gluten sensitivity (which I didn't know I had) was because in October of 2002, while hiking in New Hampshire's White Mountains I was bitten by a tick. Evidently, I must have looked like a delicacy! AND a good place for this little bug to purge Lyme, Babesia, Bartonella and Erlichia. FOUR TICK-BORNE DISEASES!

These predisposed me to developing what I NOW know is the very COMMON "watershed" of autoimmune diseases (I have a bunch , , , ) and the neurogenic celiac was the third one I think. It also predisposed me to being susceptible to the mycoplasm that is a bacteria that emerges after TOXIC MOLD spores burst. Yep -- we had that in our house, and had to move. I have "mycotoxicosis" -- and it has caused damage on several parts of my brain that show up as "white spots" -- 'BUT DON'T LOOK LIKE MULTIPLE SCLEROSIS!" (direct quote from one MD). I have actually been fired from a doctor because I told him that "I couldn't give a rat's (arse) if I ever saw HIM or another doctor again IN MY LIFE." He punched my buttons -- long story.

I am on 15 prescription medications regularly -- daily. I also receive IV meds through the port in my heart twice daily. When I am given a prescription, I INSIST that the pharmacist either a) call the manufacturer of the company that produces the medication or hey -- that was supposed to be a "B"! give ME the phone number so that I can call. The experiences I have had with my medications, at least, is that the manufacturers of their generic "knock-off" use gluten-containing ingredients as the binding substance because it is less costly. I check the manufacturer of the name-brand as well as the manufacturer of the generic that the pharmacy carries. If the generic brand's representative even WAFFLES when I am talking with them, I call my doctor and ask they add "Dispense As Written" or "Name Brand Only". Legally, you can also insist on the name brand, as well. Don't let the pharmacy fool you. You have that right. In my case, however, if I insist on name brand vs. my doctor, my co-pay is a LOT more.

I also have to take 12 different supplements and the other occasional prescription meds brings the scripts up to 23. I try to stay diligent about continuing to call the manufacturers to ensure that they are still NOT using gluten as a binder. Sometimes it feels like a full-time job . . . but, because I don't have a GI reaction, I won't know I've been "glutened" until more damage is done to my cerebellum -- as diagnosed by further degeneration on an MRI. It takes about 9 months before that appears.

I have "weeded out" the physicians that I don't care for. I have decided that I am not going to waste my insurance benefits nor my money going to someone who isn't helpful and supportive. I see my "tick" doctor (!) in NYC -- and give regular updates via email and my primary care doctor who is teetering on the edge of being replaced!

We are consumers, whether it's groceries, medication, take-out food, dining in or physicians. We deserve respect and dignity throughout all those arenas. If we do not get it, we need to graciously insist upon it. I used to be the most passive person I knew. When I was in PT school, it was DRILLED into us that WE had to be the advocate for our patients with physicians -- and that we WOULD do battle with them. (I nearly pooped my pants when they first said that!)

Through advocating for my patients, though, I learned to advocate for MYSELF. It isn't easy, and every now and then it isn't very pretty -- but I do it because it is necessary. When you think of it in those terms, it gets a little easier . . . and a little easier . . . and a little easier.

Please take care of yourself,

Lynne

P.S.: Mtndog has been after me for years to write a book . . .

Oh Lynn, maybe we are not so very different. Though incredibly perhaps I have been a little "luckier". I too have been bitten by ticks and had strange recurring fevers, panic attacks and dizziness and even have had visions and degraded nerves--and of course no one could figure out why. By "luck" a few years later I developed a frozen shoulder. Of course standard treatments did not work.

However I saw an alternative practitioner recommended by a friend. He used this Pap Imi machine and incredibly after 10 sessions it worked not only for the frozen shoulder but he also discovered I had lyme's disease--which his treatment also cured! Look it up if you have a chance. Helped against my chronic systemic fungi too. This physicist from the Univ. of CA in LA invented it for some other purpose but then found out his cancer was cured. Herb Cain used it to good effect I recall. But now I think you have to go overseas to use it.

I have also "lucked" into using herbs--which were popular when I was young. They meanwhile have helped keep life and limb intact despite having celiac since I was 4 months old. I almost died from chronic kidney disease in my mid twenties also from the celiac it turns out and eventually developed nerve problems (myelin sheath down to 1/2 on my nerves plus a rattly heart--now fixed by taking co-enzyme B vitamins). Got Rocky Mountain Spotted Fever from another tick a few years ago but fortunately caught that more in time so the antibiotics worked (2 courses) after a dreadfull winter/spring taking forbidden herbs like chapparal since it was the only thing that worked and Kaiser was no help (once again!!). I finally got my dentist to help me out. I thought it was some kind of infection in my teeth. Afterwards I discovered it was probably the tick bite since the recurring red blotchy mottling on my hands went away. At any rate the two courses of antibiotics worked though after that of course my fungi got more obnoxious.

Meanwhile however I was not told I had already been diagnosed with celiac sprue as an infant until a year and a half ago after I finally figured it out myself with the aid of this site and a heads up from my eldest sister (also considered to be crazy by the rest of my family--but who cured her "fibromyalgia" through going off all trace gluten). Initially when I experienced CC effects I became seriously ill and my old lung and kidney problems resurfaced a year ago this last spring. I recovered through again the use of antibiotics and herbs.

Since I got over the kidney infection I have been very well--except this last month when I developed that ear infection (basically from too much stress and over work) and saw yet another doctor who just didn't get it. He gave me a prescription for antibiotics that would knock out an elephant and is known to be bad for both the kidneys and the intestines. I got chronic D a week later after the antibiotics were done--which apparently is a common side affect of the drug. However I was not warned about the delayed possible effects. Thought I had parasites but it turns out it was the antibiotic. Fortunately meanwhile I was treating myself herbally for my kidney irritation...so I didn't get a bad bacterial infection in my colon even though it was pretty awful with mucous and fungi.

In the course of all this however I am now convinced that olive leaf is a godsend--as well as neem leaf tea--since they appear to be excellent against my chronic fungi--which got really bad with the fulminant colitis the drug caused. Fortunately these herbs plus marshmallow root and enterically coated acidophilus have turned the colitis around. Am now progressed to where I can take apple pectin and ground up flax seed to good effect. Am almost normal again, though my energy is not quite up to where I would like it to be.

So I keep adding to my arsenal and overall am getting healthier all the time. Am also going to start taking this salt "sole" using celtic sea salt (or himalyan) next week just for kix since its supposed to be good for the nerves and cell electrical system in general.

Meanwhile I have vowed to work on a book too. Maybe we should compare notes--eh?

Bea

[YoloGx]

Unfortunately I see denial even with this. I am in better health than I have ever been. Yes, I lost a lot of weight initially and yes, I am still hungry and healing ...but... I would have never imagined that I could be healing from such significant damage and see my other autoimmune diseases disappear and yet now everyone seems to think I am so sick and that it must be so terrible to have to eat the diet I now follow... I chose to eat this way because it is making me so much healthier but folks around me seem to re-frame it as some sort of death sentence. I see a number of people in my family I know would be far better off gluten-free that will never consider it because they are in denial and they reinforce it by trying to pity me.....give me a break.

I tried repeatedly to get through to my relatives about all this--but unfortunately now the result is that they all think I am nuts. So now I desist and just do my own thing overall. If that is a cop out so be it. I can only take so much beating. I find its better to put my energy elsewhere where its more appreciated. I have noticed meanwhile that if I feel more whole then it seems others regard me better too--despite my weird family and sensitive body. Not everyone here experiences this lack of support from others, and I wonder sometimes if in part some of us don't bring it out with our own unhealed issues. Have decided to do some co-counseling on this. And meanwhile with my family, as much as I can, just let it go since how they live their lives is their own business after all.

[ravenwoodglass]

damage on several parts of my brain that show up as "white spots" -- 'BUT DON'T LOOK LIKE MULTIPLE SCLEROSIS!" (direct quote from one MD).

What those white spots likely are is 'UBO's, or unidentified bright objects. My neuro was clueless about them also. If he hadn't been I would have been diagnosed celiac years sooner. UBO's are recognized as being associated with neuroimpact celiac disease, especially when there is ataxia. When my neuro saw them he just shrugged his shoulders and said they meant nothing after he had done a spinal tap on me to make sure it wasn't MS. Finding UBO'S is diagnostic of celiac, in some other countries and in particular in children.

[Gemini]

I hope it is the experiences some of you have had that are unusual and not mine. Every person, family member or friend, that I am in contact with has been very concerned about my health and they knock them selves out trying to be helpful.

A woman I work with but don't even know away from the office brought me a pkg of gluten-free biscuit mix. She saw it while shopping a thought of me.

No one has said a single mean or belittleing comment.

Surely more people have this kind of experiences. I cannot imagine being that cruel and unfeeling toward a stranger, much less a family member or friend.

Then you have indeed been supremely lucky because the VAST majority of Celiacs get exactly this type of crappola, most notably from family members. They behave like this for a number of reasons easily understood but still difficult to endure. My mother, older sister and brother have all treated me badly, including purposefully contaminating my food so I can no longer eat it, rolling their eyes in exaggerated fashion when they see how anal I am about CC and making fun of the foods I do eat, acting like I am ingesting dirt and making repeated remarks about how tough it must be for me, having to eat stuff like that. All 3 have other autoimmune diseases linked to Celiac, can't go to the bathroom to save their lives (that is, when they aren't suffering from diarrhea), and have many other symptoms which tell me they have a problem also. It's their pathetic defense mechanism......how sad for them.

I have gotten to the point where I do not eat any holiday meals with them and bring my own food when I have to suffer their company. Their houses are a mine field of CC and crumbs. I would honestly say that a full third of my large family have a gluten problem, judging from symptoms and diseases acquired yet I am the only member, save my 16 year niece, who stick religiously to a gluten-free diet. My niece doesn't even have a diagnosis yet her symptoms were destroying her life.

So, you could say, that the 16 year old is smarter than the whole family combined.....well, excluding her auntie, of course!

[ang1e0251]

What those white spots likely are is 'UBO's, or unidentified bright objects. My neuro was clueless about them also. If he hadn't been I would have been diagnosed celiac years sooner. UBO's are recognized as being associated with neuroimpact celiac disease, especially when there is ataxia. When my neuro saw them he just shrugged his shoulders and said they meant nothing after he had done a spinal tap on me to make sure it wasn't MS. Finding UBO'S is diagnostic of celiac, in some other countries and in particular in children.

My sister had a brain scan that scared the horse hockeys out of her last year. She was in tears when she finally told me about the "white spots", UBO's. She was especially upset when she couldn't get into the neurologist for 8 weeks. I read up on it and tried to reassure her but she would have none of it. She lives for the drama. When she went and the dr blew it off, she wouldn't have any of a celiac indication. No surprise, she's diabetic and hasn't changed her diet at all. I've told her from the beginning to be tested for celiac disease because she's my first degree relative but she won't. Her daughter's health is precarious but she won't test either. I just have stopped bringing it up. We seldom talk anyway so I don't see the point.