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RKB_MD

Celiac Sprue & Doctor Too!

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While peanut allergies may not be rarer than celiac disease, they are certainly rarer than gluten intolerance.

And I am certain that there is more celiac than ever and at earlier ages because people are eating more gluten than ever in the typical American diet.

That may be true. It is sad that there are so many people with autoimmune problems these days . . . but because dietary restrictions are becoming *so* common maybe companies will start to realize that they can very easily win very loyal customers by accomodating people with dietary restrictions of all types.

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That may be true. It is sad that there are so many people with autoimmune problems these days . . . but because dietary restrictions are becoming *so* common maybe companies will start to realize that they can very easily win very loyal customers by accomodating people with dietary restrictions of all types.

How would that ever be possible? No one company could accomodate dietary restrictions of all types.

Even an airline - they would then have to get their lunches from dedicated lines to prevent cross contamination (peanut free, or gluten free or casein free, or soy free or additive free etc., , then have fat free and/or sugar fee meals for those that are restricted with fat and sugar...have kidney disease? - then you need low protein....

And even if an airline or other company offered you a meal - we would worry about cc because it didnt come from a dedicated facility or it was stored next to or on top of a gluten meal.

Any time you have groups of people - it is impossible to accomodate everyone - so life threatening allergies (anaphylaxis inducing) are addressed while others are not...

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That may be true. It is sad that there are so many people with autoimmune problems these days . . . but because dietary restrictions are becoming *so* common maybe companies will start to realize that they can very easily win very loyal customers by accomodating people with dietary restrictions of all types.

Wegmans does this to some extent. They mark all their gluten-free food, also stuff that is vegetarian, dairy free, fat free and low sugar or no sugar added. They make gluten free shopping real easy. I reach for their stuff on almost everything cause I have learned they are quite trustworthy, I have never had a CC issue with their stuff. Hopefully others companies will do the same. It is so nice not to have to spend 2 hours in a store reading labels.

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How would that ever be possible? No one company could accomodate dietary restrictions of all types.

Even an airline - they would then have to get their lunches from dedicated lines to prevent cross contamination (peanut free, or gluten free or casein free, or soy free or additive free etc., , then have fat free and/or sugar fee meals for those that are restricted with fat and sugar...have kidney disease? - then you need low protein....

And even if an airline or other company offered you a meal - we would worry about cc because it didnt come from a dedicated facility or it was stored next to or on top of a gluten meal.

Any time you have groups of people - it is impossible to accomodate everyone - so life threatening allergies (anaphylaxis inducing) are addressed while others are not...

I didn't mean that quite literally. And I'm one of the people they wouldn't be able to accomodate (among other things can't have corn/wheat/soy/egg/nuts/peanuts/most raw fruit and vegetables.) What I meant is that there should be an awareness in general that people have dietary restrictions and companies should provide some snack options so that they are at least making an effort to feed most people . . . me not included. there *could* be non-peanut gluten-free snacks (in closed packages) . . .

Meals are another issue. I'm aware of cross contamination issues. . . have to be because of the food allergies. . . but some people are willing to take some risks even if death ensues on account of a mistake. I think people should have the option.

As things are, the whole system makes it difficult for people with dietary restrictions. Anyone ever try to order a meal on the plane with multiple food allergies? (Not a good idea in any case--better to take your own.) But my sister was told by British Air that they would be able to get her a special meal, but multiple allergies blow their computer system . . . the one time she got a nut free meal but she was given fish which also would have killed her just as effectually. Another time something got mixed up and her meal never made it on board . ..

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Guest Doll
While peanut allergies may not be rarer than celiac disease, they are certainly rarer than gluten intolerance.

And I am certain that there is more celiac than ever and at earlier ages because people are eating more gluten than ever in the typical American diet.

Celiac is not an allergy, and thus is not caused by more exposure to gluten in general or exposure at earlier ages.

I do agree that the increased cases are due to better diagnoses, and the fact that Celiac's are now able to reproduce. Celiac was often fatal and often a pregnancy was not possible prior to the gluten-free diet. There is a strong genetic component.

We still also don't know the initial trigger for Celiac. We know you need to have specific genetics to develop it, and we think that you need to be exposed to an initial trigger (virus,bacteria, etc.) before your body begins to develop the "leaky gut" that allows whole foreign gluten proteins in, thus triggering the autoimmune response.

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Celiac is not an allergy, and thus is not caused by more exposure to gluten in general or exposure at earlier ages.

My mistake. I thought celiac was caused by a gluten-intolerant person eating gluten. So you are saying it has a different cause, or no cause at all, and just "happens"?

If this were true, then there would be no point whatever in giving up gluten until a person is at death's door, yet suddenly, at that point it becomes the cure? Celiac is always preceded by gluten intolerance, and its development is arrested by stopping consumption of gluten.

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Guest Doll
If this were true, then there would be no point whatever in giving up gluten until a person is at death's door, yet suddenly, at that point it becomes the cure? Celiac is always preceded by gluten intolerance, and its development is arrested by stopping consumption of gluten.

That's not what I'm saying. Sorry if I confused you. I am saying that the mechanism (initial reason) behind Celiac Disease is not caused by exposure to gluten. The SYMPTOMS of Celiac are caused by gluten, the disease itself is not. I hope this is clearer.

Actually Celiac is NOT always preceded by gluten intolerance (without intestinal damage), and many if not most people who have GS/GI never develop Celiac or intestinal damage, because they have different genetics.

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Guest Doll
My mistake. I thought celiac was caused by a gluten-intolerant person eating gluten. So you are saying it has a different cause, or no cause at all, and just "happens"?

Yes. There is a broad spectrum between Celiac and GS/GI in some cases. Some people who seem to have GS/GI seem to have the "leaky gut", and allow whole gluten in, but either have different genetics that don't seem to code for intestinal damage, genetic protection from one parent, have only an "allergic" response, or, as you said, are Celiac's who do not yet have intestinal damage. These are all possibilities.

Now, most people with GS/GI symptoms have high antibody levels but maybe not a positive biopsy. I consider those with high antibodies to be Celiac. Usually your antibody levels correlate with the amount of intestinal damage, so I assume many biopsies simply got an area that has yet to be damaged, but the damage is there. Or, they have genetic protection from one parent against intestinal damage.

For those people who seem to get negative tests across the board, the evidence seems to be that another mechanism aside from Celiac (NOT Celiac) is at work. Possibly an allergy. These people may be affected by an increase in societial gluten exposure. As we discover more about the genetics and process of GS (that differs from Celiac), we will have more answers.

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Next: For those with Egg and Soy allergies. Let your anesthesiologist know. Reason is that one of the main drugs we use is called Propofol (fabulous for endoscopy sedation). It is a drug that is used for sedation procedures, but also is used to induce a state of anesthesia for total anesthesia. Propofol is delivered in a lecithin and soybean oil suspension. There are substitutes, we just need to know.

quote]

Welcome..hope we can be of some help to you. Our board is super supportive.

Question. My GI is a co worked and is a dear personal friend. He did my one and ONLY 'colonoscopy' :ph34r: We thought I had IBS (of course) because I was obese...not skinny and frail....

and he kept appologizing that he couldn't put me out more (It was done in his office in the hospital. The pain during the procedure was unbearilbe..I felt every twist and turn..! :blink::o:(

Now I'm wondering since being gluten-free for 16 months ...and now soy and dairy intollerant....could it have been the soybeans in the aneth..that made the colon go into spasms so he couldn't do the procedure. He's a good dr. very well thought of. Said he gave me the max amount of pain meds during procedure.

Your insight will be appreciated.

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Yes. There is a broad spectrum between Celiac and GS/GI in some cases. Some people who seem to have GS/GI seem to have the "leaky gut", and allow whole gluten in, but either have different genetics that don't seem to code for intestinal damage, genetic protection from one parent, have only an "allergic" response, or, as you said, are Celiac's who do not yet have intestinal damage. These are all possibilities.

Now, most people with GS/GI symptoms have high antibody levels but maybe not a positive biopsy. I consider those with high antibodies to be Celiac. Usually your antibody levels correlate with the amount of intestinal damage, so I assume many biopsies simply got an area that has yet to be damaged, but the damage is there. Or, they have genetic protection from one parent against intestinal damage.

For those people who seem to get negative tests across the board, the evidence seems to be that another mechanism aside from Celiac (NOT Celiac) is at work. Possibly an allergy. These people may be affected by an increase in societial gluten exposure. As we discover more about the genetics and process of GS (that differs from Celiac), we will have more answers.

"Celiac" is generally defined as "having intestinal damage". This is not the definition you are using, what is yours?

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Yes. There is a broad spectrum between Celiac and GS/GI in some cases. Some people who seem to have GS/GI seem to have the "leaky gut", and allow whole gluten in, but either have different genetics that don't seem to code for intestinal damage, genetic protection from one parent, have only an "allergic" response, or, as you said, are Celiac's who do not yet have intestinal damage. These are all possibilities.

Now, most people with GS/GI symptoms have high antibody levels but maybe not a positive biopsy. I consider those with high antibodies to be Celiac. Usually your antibody levels correlate with the amount of intestinal damage, so I assume many biopsies simply got an area that has yet to be damaged, but the damage is there. Or, they have genetic protection from one parent against intestinal damage.

For those people who seem to get negative tests across the board, the evidence seems to be that another mechanism aside from Celiac (NOT Celiac) is at work. Possibly an allergy. These people may be affected by an increase in societial gluten exposure. As we discover more about the genetics and process of GS (that differs from Celiac), we will have more answers.

"Celiac" is generally defined as "having intestinal damage". "Gluten intolerance" is "eating gluten bothers you with no intestinal involvement". These are not the definitions you are using, what are yours?

Perhaps that is why we are having trouble communicating. My feeling is that if people who are gluten intolerant continue to eat gluten, their health will likely deteriorate, and they may get very sick. What you are saying seems to indicate that these categories you divide people into mean that eating gluten is unrelated to the level of illness. But clearly we got sicker when we were eating it and we improve when we stop eating it. We all do, test results or no test results. I see the two as irreconcilable.

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Back to the original question:

Fast food surprises have been for me: Taco Bell taco meat has oats, Taco Time taco meat has wheat, Arby's curly frys have a wheat batter (this is a DUH for me - I should have known), A&W regular fries have wheat on them.

Not fast food, but a Milky Way candy bar has gluten. I had a mini, which had no ingredients on it but listed allergens, and did not list gluten. Made me sick, so checked their website, which verified the gluten.

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"Celiac" is generally defined as "having intestinal damage". This is not the definition you are using, what is yours?

I hesitate to speak for Doll, but it seemed apparent to me that she is assuming intestinal damage based on the antibodies.

Now, most people with GS/GI symptoms have high antibody levels but maybe not a positive biopsy. I consider those with high antibodies to be Celiac. Usually your antibody levels correlate with the amount of intestinal damage, so I assume many biopsies simply got an area that has yet to be damaged, but the damage is there. Or, they have genetic protection from one parent against intestinal damage.

So it would seem that you have at least similar definitions, if not the same.

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In some of the posts, I suspect that the term "allergy" and "celiac disease" are being conflated. A person who is celiac is not "allergic" to wheat unless they also have a wheat allergy. The autoantigen associated with celiac disease is not present in the blood of a non celiac with a wheat allergy . . . . while an allergic reaction may cause some inflammation of the GI tract, it does not cause the body to attack the intestine specifically. Both celiac disease and allergies involve an immune system response, but the responses are different (although *some* of the symtpoms overlap.)

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Yes, I have it,too and I'm also an MD. I found out 3 1/2 years ago after an EGD for ferritin deficiency. The duodenum was normal to the naked eye, and I was very surprised to get my diagnosis. Back then, it was just being known to be 1 in 133 Americans, not the 1 in 5000 just a few years before! I had been having intermittent gut problems for about 2 years....I thought it was a lot of bad chicken! But the bloating and gas were different and I figured something was up after continued ferritin loss and over 3000mg of iron in one month. I credit the European study who showed our genetics/incidence was no real difference from theirs, and they opened up a lot of eyes in the GI world. I have been diligently trying to find my patients who have celiac in my practice, and with serologies alone, there are over 30.....so far. Many patients do not want the small bowel biopsy, and have gone gluten free instead. I am happy to say it has made a big difference in many of their lives. I have mother/daughter; grandmother/granddaughter; niece/aunt who have been identified. Thinking of celiac as a diagnosis when there are comorbid conditions of autoimmune disorders,anemia, ANY thyroid condition is a must. I look forward to participating in this forum.

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Dear Doctors: Thank you for sharing your diagnosis and your progress with us. Welcome to our board.

As you know by now, it's very important to share info with one another about products, restaurants, etc. You have the unique opportunity of sharing celiac info with your peers which we as non doctors do not have. I urge you to make headway into that area on our behalf.

A number of us spread the message of celiac disease through friends, relatives and leave brochures wherever they go. We try our best to get others to accept this as a bona fide health disease and to find out if they too have it (when symptoms present themselves).

Feel free to take any topic/section on this board for a spin. You'll meet a lot of caring and friendly fellow celiacs and their families.

It's great to have new people aboard.

Take care.

D.

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Hi Ann and welcome to the board!

I'm so glad that you got your diagnosis and that you are so didigent in looking for this in your patients. How lucky they are to have a doctor like you!

Glad you found us :D

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Thanks Patti,Laura and D.

I work hard at getting other docs to consider celiac sprue.....bend their ears quite a bit. I found out the most recent GI Boards had many,many questions re:celiac....so if the new GI's weren't too knowledgable before...guess they will be soon! I think around here they know it is a real diagnosis, but it is really hard to pin it down sometimes...and it takes TIME to thoroughly question and examine patients. I have offered to be a Q&A subject for a large group of gastro's here...so far, they haven't taken me up on the offer. Having celiac helps me to maneuver the myriad of symptoms and signs more easily than someone who has only read about it. I'm sure most everyone here has felt they could offer their physicians a lot of advice .....and they should. Since there is more mainstream information getting into print,TV shows,etc.., ALL of us celiacs need to keep out the word to help identify the other 97% of our estimated 3,000,000 population!

So once again, I am delighted to have found this board.

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Ann:

If I may offer a question? Why is it that many doctors are so ill informed on Celiac when it goes 97% undiagnosed?

Upon dx's by a GI, I was so unhappy with my PM Doctor, after 20 year, and chose another. He ran blood work on me after being gluten free for three months, which of course resulted in a neg. test. (I was confirmed by a biopsy and endoscopy). He told me that he had no clue was was wrong with me, because my blood work was negative........well, duh. He then suggested Lexipro. <_<

Why is it so difficult for doctors to consider Celiac? Millions of people have been told that they have IBS and simple blood work could possibly save a life. I am totally mystified.

I appreciate your listening and grateful for your presence.

Lisa

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Ann:

If I may offer a question? Why is it that many doctors are so ill informed on Celiac when it goes 97% undiagnosed?

Upon dx's by a GI, I was so unhappy with my PM Doctor, after 20 year, and chose another. He ran blood work on me after being gluten free for three months, which of course resulted in a neg. test. (I was confirmed by a biopsy and endoscopy). He told me that he had no clue was was wrong with me, because my blood work was negative........well, duh. He then suggested Lexipro. <_<

Why is it so difficult for doctors to consider Celiac? Millions of people have been told that they have IBS and simple blood work could possibly save a life. I am totally mystified.

I appreciate your listening and grateful for your presence.

Lisa

Lisa,

Most of the doctors who had graduated or done their residencies before the landmark study in 2002 from the European doctors have no clue this is also an adult disease. That is probably 90%+ of all practicing physicians. When I was diagnosed, I was incredulous that I had sprue. Having initially trained in Pediatrics, I was familiar with celiac sprue but as a diagnosis for failure to thrive in infants. I thought my GI guy was playing a practical joke on me(he had done the biopsy on April Fool's Day), and I quickly got the idea. That first night before work, I was online until 2 AM trying to get a grasp of what I was up against. He told me to educate myself, that there wasn't much available in our area ;and it was much more than avoiding bread and pasta. Since April of 2003, I considered sprue in my patients, but in the same context as my presenting symptoms( weight loss, diarrhea,iron deficiency). As you well know, we are all different in our condition, and when I couldn't find any positive serologies in my patient base, I knew something was missing. When I was found to have autoimmune thyroiditis, I cross searched it with celiac sprue on the National Library of Medicine website, and there were over 300 hits. I then started searching for patients with autoimmune conditions and asking about related gut symptoms,charleyhorses,easy bruising,cracks in the corner of mouths,mouth ulcers. But the big tip was figuring out when you ask a patient how their bowel movements are....many celiacs(pre-diagnosis!) say "fine...the same". That 's because we've always been that way!! Now I ask them to DEFINE what they mean by "fine"....I do get some odd looks at times from my patients, but frequently when I've pieced it together, it's like a light bulb goes on . This a long response as to WHY doctors don't know about us....also there is virtually no money in research because going glutenfree does not involve pharmaceuticals! At least, not yet. It takes knowledge, TIME to ask all these nosey questions and a desire to solve a problem....not just patch something up.And we all know how frustrating it is to not have everything gel at once...positive serologies and biopsies. So many combinations....+blood work with neg biosy does NOT necessarily mean it's not there!! And vice versa,etc.....it's a frustrating condition for the docs to understand,too. So I hope to continue to spread the word and be an active member of his board. Hope this gave a little insight .

Ann

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Hi there.

I am not quite diagnosed yet. I had sinus surgery on Oct 11, 2006. Ever since then anytime I eat wheat or sugar (I think), I spike a fever, have joint pain, my face swells, turns red, iritability/mood swing hits, and I have severe pain in my spenoid sinuses and skull base (seems to be in my brain - cerebellum area). I also have breast pain, chest pain, and a deep burning maybe in my intestines and all of this pain and fever go on for hours. I have seen every kind of doctor at the local university. I don't have AIDS or Hepitis C. Had scratch tests. Had an apparent immune deficiency to all strep strains but was able to mount some antibodies after a vaccination. I now have an ANA of 1:640 but no real factors or enough symptoms of RA or Lupus. I have to have the sinus surgery again now because the sinus is filled up right away with polyps or something. My primary said hey maybe you have Celiac Sprue and I said "Celiac What?" I also have had neurological issues. The pneumo vax made me convulse and injected Toradol made me convulse and my neck stiffen. I got two lumbar punctures out of that. :blink: Now that I have spent many hours researching - I think that I have had CS for many years but I have hit the point of no return - actually have felt close to death many days.

My question to the doctors and everyone else is - Has anyone seen or experienced neurological problems (inflamed CNS)? How dangerous is this? I am going gluten free but I seem to make so many mistakes or I am intolerant of other things. If I eat an organic apple - 1/2 hour later fever, etc, etc... I convulse with Reglan (anesthesia) as well, so maybe an allergy?

Having an MRI soon before 2nd sugery to rule out tumors. Contacted enterolab for testing because my primary says go gluten free for now, lets worry about the test later - lets deal with your head for now. I want results now because I have concerns about my 3 kids - if I show positve, I can get moving on them.

Sorry about going on and on....but everyone hear seems so nice and compassionate about becoming.

Thanks

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Hi there.

I am not quite diagnosed yet. I had sinus surgery on Oct 11, 2006. Ever since then anytime I eat wheat or sugar (I think), I spike a fever, have joint pain, my face swells, turns red, iritability/mood swing hits, and I have severe pain in my spenoid sinuses and skull base (seems to be in my brain - cerebellum area). I also have breast pain, chest pain, and a deep burning maybe in my intestines and all of this pain and fever go on for hours. I have seen every kind of doctor at the local university. I don't have AIDS or Hepitis C. Had scratch tests. Had an apparent immune deficiency to all strep strains but was able to mount some antibodies after a vaccination. I now have an ANA of 1:640 but no real factors or enough symptoms of RA or Lupus. I have to have the sinus surgery again now because the sinus is filled up right away with polyps or something. My primary said hey maybe you have Celiac Sprue and I said "Celiac What?" I also have had neurological issues. The pneumo vax made me convulse and injected Toradol made me convulse and my neck stiffen. I got two lumbar punctures out of that. :blink: Now that I have spent many hours researching - I think that I have had CS for many years but I have hit the point of no return - actually have felt close to death many days.

My question to the doctors and everyone else is - Has anyone seen or experienced neurological problems (inflamed CNS)? How dangerous is this? I am going gluten free but I seem to make so many mistakes or I am intolerant of other things. If I eat an organic apple - 1/2 hour later fever, etc, etc... I convulse with Reglan (anesthesia) as well, so maybe an allergy?

Having an MRI soon before 2nd sugery to rule out tumors. Contacted enterolab for testing because my primary says go gluten free for now, lets worry about the test later - lets deal with your head for now. I want results now because I have concerns about my 3 kids - if I show positve, I can get moving on them.

Sorry about going on and on....but everyone hear seems so nice and compassionate about becoming.

Thanks

Sorry I can't give specific advice, but there are definitely neurologic symptoms of sprue as well as associated neurological conditions. I am not sure how to figure in all your fever with any direct celiac cause. I would hope you have a neurologist,infectious disease specialist,rheumatologist, internist and ear/nose /throat guy... You have a complex array of problems and good luck to you. Please keep us posted as to your evaluations.

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