Light Bulb Moment

[KAG]

My doctor said something interesting this past week when I was having my third colonoscopy/endoscopy. He did say that he saw some inflammation in my small intestine but when I pushed for more answers he said, "Let's not get ahead of ourselves, I don't want to condemn you to a diet that is hard to deal with." Well, first of all, I have been dealing with intestinal issues for over 12 years. I don't understand how I could be ahead of myself. Second, I have been dealing with this diet for over 4 years on my own. I already eat this way. I ALREADY EAT THIS WAY. I don't know how many times I have to say that. It does help. I just don't know if I've got something else or if I am so sensitive that I have to be extremely carefull. I need a little help here. I am not a doctor even though I feel like I know more about nutrition than any doctor I have ever met.

(I do have an appointment to visit with my doctor later this month to go over results though.)

If we were dealing with diabetes, we would have been diagnosed even BEFORE we had diabetes (new PRE-diabetes diagnosis).

Do you think that because the only cure/treatment for celiac is diet compliance and not more medication and procedures (like the money making diabetes diagnosis) doctors aren't more sympathetic? It would make it seem like doctors are only interested in making money. If a healthy diet and exercise help people to feel better, why aren't doctors spreading the word?

[Teacher1958]

I am fed up with doctors! I used to revere them and think that they were so knowledeable, but not anymore. The last time I was there, I had my doctor check my skin because I've been fading in places, so I was pretty sure I had vitiligo (same thing Michael Jackson has). I really just wanted to confirm my suspicions. Well, she said that I do have it, but then she said that it wasn't related to the celiac/gluten allergy. I had to correct her, because vitiligo is one of the conditions associated with celiac disease. Then she was explaining to me later why many doctors don't test for gluten allergies, and she said that they don't test because the diet is so hard to follow!!!!!!!!!!!!!! Shouldn't the patient at least be given the option of trying to follow the diet????? Anyone who has lived with these awful symptoms for years should at least be given an explanation and the chance to give the diet a try!!!! Personally, I think this is medical malpractice!

[elye]

I have a number of theories as to why the celiac diagnosis is still not given nearly as often as it should be (people wait on average, what, eleven years to be properly diagnosed? And one in 133 people--I think it's more than that--have it?):

Many doctors at every level are:

-Uneducated (still!). I'm still digging to find out why that is. Many don't have the time to keep up with the new, compelling research that continues to add to the manifestations of celiac disease. Some are stuck in the dark ages, and will only suspect the illness if the patient is wasting away and has obvious gastrointestinal symptoms.

-Motivated to diagnose another illness that is treated with expensive drugs. Who's motivating them? Those huge, scary pharmaceutical cartels who give the docs kickbacks for prescriptions doled out. Celiac disease threatens big profit losses for many: drug companies, the wheat industry, and certainly doctors themselves. The patients who realize that their exhaustion/depression/IBS/infertility/arthritis/ADHD can be eliminated with a dietary change will not be filling up the doctors' waiting rooms, and hence those doctors' pockets as well.

I think we need to get Michael Moore on this one.

[Guest micah]

It is hard to believe...which is harder - a diet change or severe pain and illness for the rest of your life?

Please explain vitiligo to me. I have white circles all over my arms. I assumed it was normal sun damage - is it not? And is it a symptom of celiac?

Thanks,

Micah

[Karen B.]

  elye said:

I have a number of theories as to why the celiac diagnosis is still not given nearly as often as it should be (people wait on average, what, eleven years to be properly diagnosed? And one in 133 people--I think it's more than that--have it?):

Many doctors at every level are:

-Uneducated (still!). I'm still digging to find out why that is. Many don't have the time to keep up with the new, compelling research that continues to add to the manifestations of celiac disease. Some are stuck in the dark ages, and will only suspect the illness if the patient is wasting away and has obvious gastrointestinal symptoms.

-Motivated to diagnose another illness that is treated with expensive drugs. Who's motivating them? Those huge, scary pharmaceutical cartels who give the docs kickbacks for prescriptions doled out. Celiac disease threatens big profit losses for many: drug companies, the wheat industry, and certainly doctors themselves. The patients who realize that their exhaustion/depression/IBS/infertility/arthritis/ADHD can be eliminated with a dietary change will not be filling up the doctors' waiting rooms, and hence those doctors' pockets as well.

I think we need to get Michael Moore on this one.

I think it's simpler than that. The doc sees a pharmaceutical rep every week talking about their miracle drugs. If they also saw a Celiac every week talking about how great they feel since they went gluten-free, they would have a balanced picture. Instead they only talk about the diet with the patient at the first when it is the most difficult and it usually doesn't come up again unless a gluten-free diet alone isn't working.

I've tried to educate and involve my doc to the extent I can at every visit and my local Celiac support group sent her a package of info specifically targeted to doctors. I'm reaping benefits now in the tests she runs and the fact that she now checks to see if I can take a drug before she prescribes it.

[tarnalberry]

I would encourage each and every one of us to correct our doctors when they say this fallacy. Tell them "Eh, it's really not that hard of a diet. Besides, it can be way healthier too. You wish everyone ate healthy, and that's hard, so why the hypocritic advice?"

Heh, maybe not the last line. That's just me being snarky.

Point being, they won't be corrected on this until they have a number of people with real experience correct them.

[nikki-uk]

  micah said:

Please explain vitiligo to me. I have white circles all over my arms. I assumed it was normal sun damage - is it not? And is it a symptom of celiac?

I wouldn't say the patches are a symptom of celiac disease per se.

Vitiligo is an autoimmune disease (as is celiac disease)

If you have one autoimmune disease you are more likely to get another (they like to run in packs!!!)

My son has celiac disease + vitiligo

My husband has celiac disease + rheumatoid arthritis.

[jmd3]

  nikki-uk said:

I wouldn't say the patches are a symptom of celiac disease per se.

Vitiligo is an autoimmune disease (as is celiac disease)

If you have one autoimmune disease you are more likely to get another (they like to run in packs!!!)

My son has celiac disease + vitiligo

My husband has celiac disease + rheumatoid arthritis.

Sometimes the more I read - see -know- the more scared I become....

[Karen B.]

  jmd3 said:

Sometimes the more I read - see -know- the more scared I become....

It's what keeps me on the gluten-freeway. :-)

[Ken70]

I was never a skeptic before but I certainly am now. I am amazed at how little our medical establishment knows about the health effects of the food we eat every day. Celiacs are the tip of the iceburg. I am thouroughly convinced that many of man's common ailments begin with a diminished immune system caused by the consumption of wheat, not just in those suffering with celiac.

I am not celiac thank god. I am thankful that I figured out my problems without the "aid" of modern medical assistance.

Since I am not Celiac please don't be insulted by what I am about to say. Foods with gluten in them are poison. I can't see it any other way. I've never felt better now that I understand (thanks in part to this site) what has been making me ill and more importantly what makes me feel well. I don't miss those foods because I am craving the high energy levels and the blissfully unaware of my bowels feeling that the caveman diet affords me. It's different for most of you because trace amounts of gluten can cause you incredible suffering. For this I wish there was a pill you could take.

PS - I had Red Bridge Beer tonight. It was outstanding!!!!!!

[Crystalkd]

I'm reading Living gluten-free for Dummies and understanding so much more! It's great! There are several things humans now eat that our bodies weren't designed for. Dairy is another one. We are the only mammals that drinkj another mammals milk. Hence the high incidents of Lactose intolorence. celiac disease isn't the only things medical science isn't clear on. Cerebral Palsy is another. As long as you're a child your cool andwell taken care of. Once you turn 21 it's less clear. It's only in the last 60 years that we've really started living into adulthood. When I first got sick I thought it was CP related and wasn't getting any answers. I searched for months and finally called United Cerebral Palsy and got in contact with some one who knew where to point me for docs that could help. I have an awesome team now. They also know about celiac disease. These doctors aren't however titled as specalist in adults with CP so I wasn't able to find them in my search. I have them now and wouldn't trade them for the world!

I also am not scared of any other medical problem that could pop up that I have no control over. I've learned through the last 13 years that this is the hand we were given and we can't trade it in. We have to learn how to deal with what we have and attitude will determine what we do with what is thrown at us. Don't get me wrong it sucks but if we let the trials of our lives beat us then in the end we haven't accomplished much!

As far as the diet goes. Make thedecison not to wait for my test results to start the diet wasn't hard. I'm still learning and it's hard but I'm soooo much better than what I was six weeks ago and for that I'm sooo greatful.

Another peice of advice. If you don't agree with a doc find a new one. It stinks to go from doc to doc but that was the only way I found the ones I have now.

[Fiddle-Faddle]

  elye said:

Many doctors at every level are:

-Uneducated (still!). I'm still digging to find out why that is.

-Motivated to diagnose another illness that is treated with expensive drugs. Who's motivating them? Those huge, scary pharmaceutical cartels who give the docs kickbacks for prescriptions doled out. Celiac disease threatens big profit losses for many: drug companies, the wheat industry, and certainly doctors themselves. The patients who realize that their exhaustion/depression/IBS/infertility/arthritis/ADHD can be eliminated with a dietary change will not be filling up the doctors' waiting rooms, and hence those doctors' pockets as well.

I think we need to get Michael Moore on this one.

I totally agree with you!

And think--who is TEACHING the med students? It ultimately goes back to big pharm, doesn't it?

So--how do we communicate withf Michael Moore?

[deesmith]

  elye said:

I have a number of theories as to why the celiac diagnosis is still not given nearly as often as it should be (people wait on average, what, eleven years to be properly diagnosed? And one in 133 people--I think it's more than that--have it?):

Many doctors at every level are:

-Uneducated (still!). I'm still digging to find out why that is. Many don't have the time to keep up with the new, compelling research that continues to add to the manifestations of celiac disease. Some are stuck in the dark ages, and will only suspect the illness if the patient is wasting away and has obvious gastrointestinal symptoms.

I agree with you so much on this! I went from a bad doctor to a worse doctor (Primary Care) recently. My new doctor is so ignorant about the whole matter, I really need to switch again. Here's some of what he said:

"Some people have Celiac just a little and can tolerate some gluten. I'm thinking you fit into this category because you don't seem that bad."

"You're not a typical classic case Celiac. If you open up any medical text book you will find diarrhea as a symptom, but never constipation."

"You don't have malabsorption."

I asked him to explain the last one. He said I don't look like I do because I'm not severely underweight. I said "I don't have malnutrition. But you've read my file, and I'm not absorbing many things, and that's malabsorption!"

What a twit. But I did try to education. But I still think I need to switch.

And I really agree with you that we need to contact Michal Moore and/or write a book called "Stupid Things My Doctor Told Me".

[little d]

  nikki-uk said:

I wouldn't say the patches are a symptom of celiac disease per se.

Vitiligo is an autoimmune disease (as is celiac disease)

If you have one autoimmune disease you are more likely to get another (they like to run in packs!!!)

My son has celiac disease + vitiligo

My husband has celiac disease + rheumatoid arthritis.

For me it will be hard because every time I go to a docotor Dermatologist that I just recently went to for my possible DH that flared up on my wrist no blisters so we are not going to do a biopsy, we will do a scratch test and some kind of blood test she went so fast I had a hard time keeping up. Come back in two weeks.

Orthopedica doc I asked for a bone density test for osteoporis, my foot is slow to heal, he asked me if I still had my monthly I said yes, he says you really don't need bone density test done but then he said ok we will scheduale that for next time, I guess he saw the frustration in my face and I said that I have been tested for celiacs or in the process of being tested. He knew what I was talking about.

My General Practice doc he is just a sweet doc know about your general stuff, upfront told me did not know anything about Celiacs last year to get my referral for my Gi doc, when i recently went to my GP he had my GI stuff in my file looked over and said that if my diet helps keep doing that, he did not know what or who he could send me to. So far this doc has been the greatest about everything. When I told him about my possible DH rash got it after eating Wheat by mistake he said well sounds like it is very well connected.

GI doc all he wanted to do was diagnose me with IBS give me meds and send me to another doc, but he is not convinced that I dont have celiac disease he says ok so diagnose me already.

So if I were diagnose I think that it might just look like this

Kick all docs to the curb + Gluten free diet + Love for people here

just kidding celiac disease + DH + osteoporis

donna

[Karen B.]

  Fiddle-Faddle said:

I totally agree with you!

And think--who is TEACHING the med students? It ultimately goes back to big pharm, doesn't it?

So--how do we communicate withf Michael Moore?

Actually, someone posted a YouTube link on this board recently of MM asking for people to contact him with their stories. I don't have time to do a search but I remember seening it a few weeks ago.

[elye]

Okay, I'm going to get on youtube after this and search MM out. A very effective way to approach this appalling problem of doctors not diagnosing gluten intolerance (due to ignorance, payoffs or whatever), is by addressing and educating the players who would BENEFIT financially from correcting it. One group is the rice industry, who would love to hear how damaging gluten is for so many. The other major players are the big insurance industries, who could free up the billions of dollars they are paying out for drugs they cover which are being needlessly prescribed...painkillers for arthritis, migraines and fibromyalgia, anti-depressants, hormone replacements, anti-inflammatories. And in Canada, our federal government could be saving billions in our already strained health care system by decreasing the gastrointestinal and cancer surgeries they must pay for and which can be simply the result of undiagnosed celiac disease. I remember Canadian Karen had a terrific form letter we could access and send to our insurance companies addressing this very problem. Karen, if you are around I would love to find this letter to send off to my big company.

[Fiddle-Faddle]

Great point about the rice industry, although the companies that produce gluten-free stuff specifically marketed towards us are charging 5-6 times what they should, simply because they know most of us are desperate enough to pay for it. We were chatting about this on another thread this week (the Walmart thread)--all those convenient gluten-free brownie, bread, pizza, and pancake mixes are nothing more than 70-80 cents worth of rice flour, cornstarch, potato starch, and tapioca starch, with a teaspoon or two of xanthan gum thrown in, and they are charging 6 bucks???

I also like your idea about the insurance industry, except I'm wondering if Big Pharm is ultimately behind the insurance industry, though... How do we find out if this is so?

[Fiddle-Faddle]

Found the letter (thank you, Canadian Karen!!!!):

To Whom it may Concern:

My name is ______ and I have had celiac disease for many years although not properly diagnosed until __ years ago. Unfortunately, my long road to proper diagnosis is all too familiar. I am part of a group of fellow celiacs who are earnestly trying to change that.

I am involved in a campaign to send out letters to insurance company representatives, requesting them to attend a Celiac Disease Conference in their area. It is our hope that once the insurance industry is properly educated about celiac disease and its financial implications of this disease not being properly diagnosed in a timely manner, they will take action to rectify this problem. We feel that if the insurance industry discovered how much money is wasted on medical tests, hospitalizations, lost work hours and disability claims, just because the medical establishment is woefully uneducated about this disease, that they will take action and start realizing that by just one simple blood test, a staggering amount of money could be saved. Not only would they benefit financially, but all those currently who have celiac disease and still have not been properly diagnosed just might have a chance to finally have the answer they have been searching many years for.

Please assist us in this endeavor by extending an invitation to insurance representatives in your area in an effort to educate them about this disease. They could become one of our most powerful advocates and if we secure their involvement in educating the medical establishment, we have gained a very powerful ally in our fight against this disease.

Attached you will find a copy of the letter that has been sent out en mass to insurance companies in an attempt to secure their involvement and assistance.

Thank you for your kind consideration.

Yours truly,

[Fiddle-Faddle]

Also found this (again, thank you, Canadian Karen!):

INSURANCE COMPANY

ATTN: DISABILITY CLAIMS DEPT.

To Whom it May Concern:

I am attempting to spearhead a campaign to raise awareness of Celiac Disease and its negative impact not only to hundreds of thousands of undiagnosed celiacs, but the financial impact this insidious disease has on your particular industry.

Celiac disease, also known as gluten intolerance, is a genetic autoimmune disease that affects 1 in 133 North Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, depression, osteoporisis, peripheral nervous system disease and malnutrition, to latent symptoms such as isolated nutrient deficiencies, but no gastrointestinal symptoms. In fact, celiac disease can manifest itself in any one of 200 various symptoms.

The medical establishment is woefully uneducated about this disease. In fact, Celiac Disease is listed as one of the most underdiagnosed diseases in North America. The average timeframe from onset of symptoms to final proper diagnosis is 11 years. That is 11 years of endless medical tests, hospitalizations, medications, lost work hours and disability claims. It is that important fact that I truly believe is of great importance to your industry and hopefully will spur you into action to start educating doctors about this disease in an effort to have this disease properly diagnosed at the onset of symptoms. This could save your industry countless dollars in unnecessary medical costs. This disease can be diagnosed by a simple blood test. One simple test. The amount of money that will be saved by your industry in the long term would be staggering.

I urge you to send a representative to the next Celiac Association Conference in your area. The knowledge you will obtain there could drastically affect future claims and significantly reduce the cases you currently have who actually have celiac disease and still are not aware of it.

If the medical community has this disease in the forefront, not only those affected by celiac disease, but your industry, would benefit greatly. Help us to educate the doctors who are on the front line to recognize this disease in its early stages.

Thank you for your time and consideration.

Kind regards,

Signed Here……….

[KAG]

Yes, having a positive attitude is the only way to get through many difficulties in life. I am so glad that I have a forum here to vent! (Thanks for listening.) I do have to be happy that my doctor now is willing to run tests on me. 12 years ago I just bounced around from prescription to prescription. (Each doctor thought his drugs were better!) All of us talking to people and doctors is having an effect

I am so amazed at how food effects us. I do feel good when I am eating healthy. I had a friend the other day say something to the fact of how everyone needs to find out what is best for them, meaning that a healthy diet is not necessarily going to work for everyone, and how these cholesterol drugs work for people. Well, everyone can benefit from a healthy diet. I can't believe how ignorant people are about food choices and I know that I used to be one of them. People really don't know what they are eating. Do people know the chemicals they are putting into their bodies?