Celiac Sprue & Doctor Too!

[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

Ann:

I appreciate you posting me back in your "freetime". I think that you put the pin on the head......there is no money in research, because gluten intolerance can be controlled by diet, and no money to feed the phar.industry.

Thank you so much for passing the word with patience as well as professionals in your field. You truely are a ground breaker in the field of Celiac Disease.

Our Thanks, Lisa and everyone here.

[Canadian Karen]

. 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.

Ann

You are so right about this, Ann......

Awhile back, I wrote a letter that I sent out to insurance companies (I also posted it on here and many members also sent it out to insurance companies in their areas). I figured this would be the best angle to tackle the problem of this disease not getting the recognition we so desperately need it to... After all, nothing talks more than money, right? Especially for insurance companies......

Here is a copy of the letter:

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……….

I also created a cover letter to send out along with this letter to celiac associations requesting them to extend invitiations to insurance companies in their area to educate the insurance industry about this disease, in the hopes that the insurance companies will be the ones to push the doctors to test more often for this disease..... (I can't find a copy of that letter right now though! I am going to have to search!)

Karen

[mamabear]

You are so right about this, Ann......

Awhile back, I wrote a letter that I sent out to insurance companies (I also posted it on here and many members also sent it out to insurance companies in their areas). I figured this would be the best angle to tackle the problem of this disease not getting the recognition we so desperately need it to... After all, nothing talks more than money, right? Especially for insurance companies......

Here is a copy of the letter:

I also created a cover letter to send out along with this letter to celiac associations requesting them to extend invitiations to insurance companies in their area to educate the insurance industry about this disease, in the hopes that the insurance companies will be the ones to push the doctors to test more often for this disease..... (I can't find a copy of that letter right now though! I am going to have to search!)

Karen

Beautiful response for insurance companies!! I would like to think they have a collective conscience, but the only place you can reach them is the bottom line. Making them see how they may save $$$ might work. I'll check back to try and get the letter.

[Canadian Karen]

Found the letter to celiac associations:

CELIAC ASSOCIATION OF…………..

To Whom it may Concern:

My name is Karen and I have had celiac disease for many years although not properly diagnosed until 4 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,

Your name……..

Karen

[rez]

Wow!! This message board is great. Ann, it is wonderful to get your perspective on things. We have a family doctor who has Celiac disease himself. It's been a God send. I have been battling with my son's issues and found a doctor on the internet in Iowa who has the disease! We drive 3 hours round trip just for our office visits, but it's worth it. He's the only person to come close to knowing ANYTHING about this disease. I noticed you mentioned thyroid problems. My grandma and aunt both have those. My son has a double copy of DQ2, but the medical community here screwed up all our testing and my husband and I researched on our own and put him on a gluten free diet out of desperation. The tests our doctor ran were the wrong ones and now he's been gluten free for 3 months and it's too late to get a concrete diagnosis. It was looking for a traditional allergy, not a celiac panel. It's so hard and depressing that I don't have that for sure piece of paper. His symptoms were constant mouth ulcers and terrible stomach pain. It has greatly improved, but now I'm wondering if dairy is an issue as well. Have you heard of anyone having a problem with casein and gluten. My new doctor DOES NOT reccommend putting him back on gluten. He wants him to stay gluten free until he challenges it or wants the biopsy for his own knowledge. I struggle every day with this. Part of me wants to put him back on gluten and see if his body goes haywire. He had a really bad stomach ache last Tuesday and then Wednesday woke up with 8 canker sores. They are so painful and his mouth looked terrible. Now today he's got the painful cracks in the corners of his mouth. Would you continue on for further testing or just stay the course. It's so easy to get down. Thanks so much! Kandi

[angst2amity]

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.

Took myself to an ENT for chronic sinus infections after being on 5 anti-biotics this time.

ENT found my right Spenoid Sinus to be filled with things that needed to be removed. ENT sent me to allergist to find out why I am having sinus problems.

ENT performed R. Sphenoid/ethmoidectomy but refused to culture what was in the sinus - even when I begged him because I was having underlying problems. (I think I might have not infection but aspergillus in my head - which seems to be triggering celiac) Even suggested aspergillis, I think he laughed and called me neurotic. So if he exacerbated this problem, do I plot to kill him?

Sinus reinfected 4 times.

Became gluten, sugar, dairy intolerant.

Allergist/Immunologist found that I don't have significant allergies but low IgG antibodies, boosted with Pneumovax. Sent me to University Infectious Disease specialist due to chronic infections.

Infectious Disease specialist tested me for HIV, Hepatitis C, and tested ANA. ANA was 1:640 so I was sent to University Rheumatologist.

I didn't have enough factors,symptoms for RA or Lupus. Rheumatoligst sent me to University Allergy/Immunologist.

U A/I said sinus was filled again with polyps & cysts. Said I need a new ENT because he didn't culture and didn't put me on nasal steroids to prevent inflammation and sealing off of the sinus. Put me on nasal steroids.

NP put me on antibiotics again and steroids for extreme joint pain.

Took myself to University ENT. They want to do surgery ASAP. They are actually doing an MRI first to rule out tumors and seem very thorough. Took me off all antibiotics and steroids. MRI 12/1 surgery 12/8. Would not give pain medication.

Went to primary (who is an internist) that I had been avoiding because after 500 antibiotics - don't you think she would have tried to find the underlying condition. I caught her up on my journey of specialists. She suggested celiac sprue and gave pain medication. Ended up three times at ER to rule out menigitis, complications of lumbar puncture, and facial numbness & swelling and my primary thought it was the fasted way to get a CT scan for the U ENT.

I have not seen a neurologist yet, but has been suggested.

I am going crazy, sorry. Does anyone know - if you kill aspergillis or systemic candida, can you stop being gluten intolerant?

I absolutley can not eat gluten, any sugars including plain fruit, or I think dairy.

I am new so I am probably posting this in the wrong area - maybe I should move it to new and undiagnosed.

Thanks for any help

[mamabear]

Wow!! This message board is great. Ann, it is wonderful to get your perspective on things. We have a family doctor who has Celiac disease himself. It's been a God send. I have been battling with my son's issues and found a doctor on the internet in Iowa who has the disease! We drive 3 hours round trip just for our office visits, but it's worth it. He's the only person to come close to knowing ANYTHING about this disease. I noticed you mentioned thyroid problems. My grandma and aunt both have those. My son has a double copy of DQ2, but the medical community here screwed up all our testing and my husband and I researched on our own and put him on a gluten free diet out of desperation. The tests our doctor ran were the wrong ones and now he's been gluten free for 3 months and it's too late to get a concrete diagnosis. It was looking for a traditional allergy, not a celiac panel. It's so hard and depressing that I don't have that for sure piece of paper. His symptoms were constant mouth ulcers and terrible stomach pain. It has greatly improved, but now I'm wondering if dairy is an issue as well. Have you heard of anyone having a problem with casein and gluten. My new doctor DOES NOT reccommend putting him back on gluten. He wants him to stay gluten free until he challenges it or wants the biopsy for his own knowledge. I struggle every day with this. Part of me wants to put him back on gluten and see if his body goes haywire. He had a really bad stomach ache last Tuesday and then Wednesday woke up with 8 canker sores. They are so painful and his mouth looked terrible. Now today he's got the painful cracks in the corners of his mouth. Would you continue on for further testing or just stay the course. It's so easy to get down. Thanks so much! Kandi

I am very reluctant to gluten challenge a patient who has clinically improved on a gluten-free diet. However, if it is a child or young adult who will be looking at a lifetime of dietary change, I like to see a biopsy to confirm it. We all know biopsies can miss a celiac diagnosis, as can the blood tests, so it makes it very difficult to always be sure . As far as I can figure out, if the blood tests are positive and you get improvement, you can retest to check for a normalization of the antibodies. I don't always feel the need for invasive testing when the"shoe fits" !! I do offer that to my patients , and provide them with a knowledgable GI doc. Repeated retest/challenge may very well send a cascade of other autoimmune disorders. Dr Alessio Fasano in Maryland recently published an article about these connections. A lot more research needs to be done. SO, back to your situation, I'd follow the lead with your son's doctor. There will be inadvertent gluten challenges that come his way(sounds like he already had one with the mouth eruptions) and he can have serologies repeated after a few weeks of continued distress. One thing that may help the mouth ulcers are B vitamins. Check with his doctor for recommendations. Re: the casein...I have not specifically read in the literature of it being a problem, but in life, all things are (nearly) possible. Elimination diets can give a clue, but they are hard to do with children. Good luck to you and yours.

[mamabear]

Took myself to an ENT for chronic sinus infections after being on 5 anti-biotics this time.

ENT found my right Spenoid Sinus to be filled with things that needed to be removed. ENT sent me to allergist to find out why I am having sinus problems.

ENT performed R. Sphenoid/ethmoidectomy but refused to culture what was in the sinus - even when I begged him because I was having underlying problems. (I think I might have not infection but aspergillus in my head - which seems to be triggering celiac) Even suggested aspergillis, I think he laughed and called me neurotic. So if he exacerbated this problem, do I plot to kill him?

Sinus reinfected 4 times.

Became gluten, sugar, dairy intolerant.

Allergist/Immunologist found that I don't have significant allergies but low IgG antibodies, boosted with Pneumovax. Sent me to University Infectious Disease specialist due to chronic infections.

Infectious Disease specialist tested me for HIV, Hepatitis C, and tested ANA. ANA was 1:640 so I was sent to University Rheumatologist.

I didn't have enough factors,symptoms for RA or Lupus. Rheumatoligst sent me to University Allergy/Immunologist.

U A/I said sinus was filled again with polyps & cysts. Said I need a new ENT because he didn't culture and didn't put me on nasal steroids to prevent inflammation and sealing off of the sinus. Put me on nasal steroids.

NP put me on antibiotics again and steroids for extreme joint pain.

Took myself to University ENT. They want to do surgery ASAP. They are actually doing an MRI first to rule out tumors and seem very thorough. Took me off all antibiotics and steroids. MRI 12/1 surgery 12/8. Would not give pain medication.

Went to primary (who is an internist) that I had been avoiding because after 500 antibiotics - don't you think she would have tried to find the underlying condition. I caught her up on my journey of specialists. She suggested celiac sprue and gave pain medication. Ended up three times at ER to rule out menigitis, complications of lumbar puncture, and facial numbness & swelling and my primary thought it was the fasted way to get a CT scan for the U ENT.

I have not seen a neurologist yet, but has been suggested.

I am going crazy, sorry. Does anyone know - if you kill aspergillis or systemic candida, can you stop being gluten intolerant?

I absolutley can not eat gluten, any sugars including plain fruit, or I think dairy.

I am new so I am probably posting this in the wrong area - maybe I should move it to new and undiagnosed.

Thanks for any help

I sure wish I had an answer for you. I can imagine how frustrated you must be. The new studies ordered for this coming week may shed some light. A culture from your sinuses would help. As to whether eradication of systemic fungal infection would stop the gluten intolerance, I have no clue. Maybe the other message board will have someone who has dealt with a similar problem. I definitely think a University neurologist might have some ideas. Did you say you have been tested for celiac yet?

[mumseyh]

For GFMemphis: Do you also believe you can be gluten intolerant with a negative biopsy and positive blood work? My GI doc doesn't believe this is possible. My primary doc is the one who discovered this with me, after discovering it with himself. I have most of the same syptoms including anemia. The GI doc did the biopsy and proclaimed that I don't have celiac. He could have me try yet another IBS medication. He told me that if I don't like gluten, don't eat it. He did discover Barrett's Esophagus in the EGD. It is no surprise since every time I ate in the past, I had a constant gurgling in that area. Since being off gluten, that has stopped. So has the indigestion. I would like to reduce the 80 mg of Nexium I take each day. I applaud you for finding the patients with celiac. Hopefully you can help educate the GI docs out there. There is definately a lack of continuing education. I am still trying to find the words to say to the GI doc on the next appointment since the EGD. I have a lot more faith in the primary doctor who is on top of all of the latest information.

[mamabear]

For GFMemphis: Do you also believe you can be gluten intolerant with a negative biopsy and positive blood work? My GI doc doesn't believe this is possible. My primary doc is the one who discovered this with me, after discovering it with himself. I have most of the same syptoms including anemia. The GI doc did the biopsy and proclaimed that I don't have celiac. He could have me try yet another IBS medication. He told me that if I don't like gluten, don't eat it. He did discover Barrett's Esophagus in the EGD. It is no surprise since every time I ate in the past, I had a constant gurgling in that area. Since being off gluten, that has stopped. So has the indigestion. I would like to reduce the 80 mg of Nexium I take each day. I applaud you for finding the patients with celiac. Hopefully you can help educate the GI docs out there. There is definately a lack of continuing education. I am still trying to find the words to say to the GI doc on the next appointment since the EGD. I have a lot more faith in the primary doctor who is on top of all of the latest information.

I have no doubt in my mind that the biopsies can miss the diagnosis. I have a patient whose duodenal biopsies were negative, but was found to have the typical photographic abnormalities found on capsule endoscopy by the same GI doc. I sent her back to him when she continued to lose weight and have diarrhea in spite of being gluten free. It turns out she was not 100% compliant with the diet initially;partly due to hidden glutens. I am happy to say that she had regained 4 pounds of weight on her last visit. Her serologies returned to below normal prior to the endoscopy. Also her unusual rashes(not DH) are resolving now. So, I hope your GI guy reads his current literature! There is a huge review article in Gastroenterology Journal published the first of this month. I want to see how the AGA addressed the need for diagnosis and treatment updates. Since I don't subscribe to it, I'll have to borrow one from one of the GI's. Let us know how the return visit goes.

Oh, TIMING is everything in medicine.....if your gut had recovered before the biopsy, it could easily have been read as normal. Also there is some discussion in the literature as to loosening the pathologic diagnosis by calling it earlier when the lymphocytes are infiltrating the villi and not after they are blunting. So, maybe ALL of us celiacs are getting something happening in the celiac world!

[mumseyh]

Thanks gluten-free. I wish there were more doctors like you and my primary doctor. Staying up on the latest articles is very important. I am going to see if there is any way I can track down this article. I agree that it is time to overhaul the methods that are used to read the biopsies. Based on the diet alone, there is no doubt that my situation has improved dramatically. Best of luck to your patients and your practice. I will update in mid December after the follow up.

Nancy

[Guest nini]

gluten-free Memphis! I applaud you!!!! You are the kind of Dr. we need!!!! Why aren't there more like you??? Why isn't capsule endoscopy used more often? One lady I know who had been gluten-free for several years, had one and STILL had damage even though she was convinced she was 100% gluten-free... turns out she wan't 100% compliant... I think the capsule endoscopy is far less invasive and seems to show a lot more detail... is this true?

Several of the local and national experts that I have spoken with also agree that the pathologic dx needs to be loosened, that early signs of gluten intolerance/celiac need to be recognized as just as important as total villous atrophy. Why wait until there is complete damage? Why wait until so many other health issues have cropped up because of this? Why are they still clinging to the biopsy as gold standard of dx when it so clearly misses so many cases? If the blood work indicates Celiac, what else could it possibly indicate that would make them doubt it? I thought the complete Celiac panel was Celiac specific and if positive, that is all it could be...

[happygirl]

mumseyh,

there are many, many doctors who understand that celiac damage can be easily missed. Even the leading experts, who push for the gold standard biopsy, fully acknowledge that intestinal damage is patchy and can be missed (Dr. Green even discusses it in his book, which is referenced in my signature...along with Dr. Fasano, he is a leading Celiac physician, researcher, and expert) So, yes, it is entirely possible...and happens quite often. I'm sorry that your doctor is not up on the latest research.

A biopsy can rule IN celiac, but it can't rule it OUT.

Laura

[angst2amity]

I sure wish I had an answer for you. I can imagine how frustrated you must be. The new studies ordered for this coming week may shed some light. A culture from your sinuses would help. As to whether eradication of systemic fungal infection would stop the gluten intolerance, I have no clue. Maybe the other message board will have someone who has dealt with a similar problem. I definitely think a University neurologist might have some ideas. Did you say you have been tested for celiac yet?

Thanks for your input and compassion. I really am becoming more positive that I have aspergillis/candida some type of fungus in my head. The gluten is just a good food for it. I think the MRI will show whether it is or not tonight - I understand it has a different heat signature or something. My DR suggested Celiac but wants to wait to explore until after next sinus surgery. I sent for enterolab because I can't wait. I have a lot of the same issues as others reporting here - multiple pregnancy loss, teeth crumbling out of my head, etc. etc. - but maybe the malabsorption is from this fungus. Been on long term broad spectrum antibiotics for years. Sorry to keep going on, Just wanted to say Thanks!

[Jestgar]

I am very reluctant to gluten challenge a patient who has clinically improved on a gluten-free diet. However, if it is a child or young adult who will be looking at a lifetime of dietary change, I like to see a biopsy to confirm it.

I find this approach curious.

If a child/young adult came to you and one of his parents had a familial propensity towards high cholesterol/atherosclerosis, would you hesitate to prescribe a diet low in fried foods and high in fiber before seeing any evidence of damage? Same question, but substitute type II diabetes.

It's just food. The diet can be annoying and time consuming and expensive, but so is eating fresh fruits and vegetables when compared to fried potatoes.

This is not a prison sentence. All we have to do is eat healthier.

[Canadian Karen]

I find this approach curious.

If a child/young adult came to you and one of his parents had a familial propensity towards high cholesterol/atherosclerosis, would you hesitate to prescribe a diet low in fried foods and high in fiber before seeing any evidence of damage? Same question, but substitute type II diabetes.

It's just food. The diet can be annoying and time consuming and expensive, but so is eating fresh fruits and vegetables when compared to fried potatoes.

This is not a prison sentence. All we have to do is eat healthier.

Although this diet is certainly not a prison sentence, to a great many, it is more than just annoying. For some, going back on gluten brings on such violent, drastic reactions, it sends them into the hospital. The gluten challenge is like putting some people literally through hell and back, and I can understand the reluctance to do so.......

[Jestgar]

Although this diet is certainly not a prison sentence, to a great many, it is more than just annoying.

True, but you could say the same about any diet with restrictions. My point is, if you react badly to gluten, why does a physician insist on seeing physical damage before agreeing that this is a problem?

[mamabear]

True, but you could say the same about any diet with restrictions. My point is, if you react badly to gluten, why does a physician insist on seeing physical damage before agreeing that this is a problem?

Maybe I wasn't very clear about this particular instance. I think that following the diet for this child is very important. I was worried about directly challenging him with gluten in order to repeat his testing. I believe that will occur inadvertently anyway, and repeat testing...as far as a small bowel biopsy...can be done later. Sometimes there is a positive slant to the negative testing. One may intuitively KNOW that gluten is the problem;you haven't made a paper diagnosis;you can follow a gluten-free diet ;and you don't have the insurance companies rating you. Sometimes patients and doctors want to have the final diagnosis pinned down(biopsy) . I personally believe that the serologies give us the story. Antigliadin IgG,Antigliadin IgA are very sensitive but not specific test. Antiendomysial antibodies are sensitive,but more specific and tissue transglutaminase antibodies are considered the most specific in the GI world. There are false positive and false negative results for TTA unfortunately. I have a patient who had only AGA IgA positive ...all symptoms fit celiac...I sent her for upper endoscopy and colonoscopy as she had blood in her stool on examination...the GI told her he doubted she had celiac...the biopsy was positive. He was amazed.....Goes to show it takes all kinds! And you have to be stubborn to keep looking for it. But as you put it, you can just go gluten free.....I have patients that do that,too. Saw two of them today who fit the clinical picture, but don't have the lab diagnosis. I think it makes it harder for them to stay gluten free for the long haul .....they may start slipping with the diet and without the hard evidence....some fall off the wagon. Makes it all quite a challenge. There are articles in the world literature that address doing gluten-free diet without a "proper" diagnosis. I'll try and find some and see if I can post a link. I'm "computer challenged" with some of this!

[rez]

Anne, I greatly appreciate you responding to all these emails. You are a wonderful addition and resource to this board. I definitely agree with you 100% in my son's case. I would love to see the biopsy proven results just because it's hard to differentiate between "accidental glutenings" and "is this really working". Thanks so much for your expertise and educated advice. I think a lot of people can relate to this situation. With my own body, it would be easier, but when it's your child you can't tell EXACTLY what they're feeling. Thanks again for the reply. Sincerely, Kandi

PS. Wanted to add that I don't know if we will ever get the biopsy proven answer we want because my son's not willing to do a challenge. I'm just saying hypothetically I would love to have the proof on paper. I didn't want people to get upset thinking we were heading to Krispy Kreme and Pizza Hut tomorrow. :):) I'm going to plug away a little more with his diet before I resort to any further testing. :)

[Canadian Karen]

PS. Wanted to add that I don't know if we will ever get the biopsy proven answer we want because my son's not willing to do a challenge. I'm just saying hypothetically I would love to have the proof on paper. I didn't want people to get upset thinking we were heading to Krispy Kreme and Pizza Hut tomorrow. :):) I'm going to plug away a little more with his diet before I resort to any further testing. :)

This is another area that is soooo confusing about this disease. It would be so easy if, once going gluten-free, a button was pushed somewhere in our bodies where we saw immediate results. Unfortunately, this is not the case. Many times, one must plug away for a year or more with this diet before damage is repaired and results are finally seen. All too many times, people give up during this period, assuming this is not the answer to their problems. In this respect, a definitive answer (biopsy and/or bloodwork) would help in their resolve.

Karen

[Jestgar]

I didn't want people to get upset thinking we were heading to Krispy Kreme and Pizza Hut tomorrow.

I think you'll find that people here are supportive, even if they disagree with your descions . At worst they'll be ranting at you because YOU are going to Krispy Kreme and THEY are not!

[mumseyh]

GFMemphis (Ann):

You mentioned an artice in an upcoming G. I. Journal. I did a google search on these, and came up with several different publications. Do you have the name of the journal? I realize I am not a doctor, and it may be a stretch to read, but I am a teacher, former paramedic and current nursing student (at age 51). I can usually get a feel for what I am reading. I would love to take some articles to my appointment in 2 weeks. I would love even more to take you with me!! You are a wonderful asset to this board. I hope we aren't picking your brain too much. I believe more than anything else, that a positive response to a gluten-free diet is really all that matters. Getting a formal dx could inhibit getting insurance in the future. Thanks for your help, and I hope you are getting help from being here as well.

Nancy

[mamabear]

GFMemphis (Ann):

You mentioned an artice in an upcoming G. I. Journal. I did a google search on these, and came up with several different publications. Do you have the name of the journal? I realize I am not a doctor, and it may be a stretch to read, but I am a teacher, former paramedic and current nursing student (at age 51). I can usually get a feel for what I am reading. I would love to take some articles to my appointment in 2 weeks. I would love even more to take you with me!! You are a wonderful asset to this board. I hope we aren't picking your brain too much. I believe more than anything else, that a positive response to a gluten-free diet is really all that matters. Getting a formal dx could inhibit getting insurance in the future. Thanks for your help, and I hope you are getting help from being here as well.

Nancy

It is the "Gastroenterology" journal...Nov.4 ,2006. It is only available as a subscription yearly, and that is $$$$$. This is the official journal of the American Gastroenterology Association. I am going to try and get a copy from my own GI. His office is close to mine. Thank you for your kind words and I AM getting a LOT from being here! I like the company I'm in.......it's such great reinforcement for me in so many ways.

Back to the journal.....I wanted to see how far the GI policy makers have come with current thought. They must be getting up to speed if their most recent boards were peppered with celiac questions. But we still have a long way to go with hematologists(one article said 25% of iron deficiency is from sprue); rheumatologists(comorbid conditions like Sjogren's,fibromyalgia,RA,lupus,etc...) and neurologists( comorbid conditions like MS,peripheral neuropathy,ADHD,autism)...all of this is in current medical literature or buried in old studies/articles. I asked a neuro friend of mine who had called about an unrelated patient and asked if he ever screened for celiac. He said he has not, but after I tossed a lot of ideas at him, he said he would start. Check the National Library of Medicine website for recent and older articles. If you put that in a search, it will give you a link. It's a long web address and I just have it on my favorites. If you can't find it, I'll try and make a link....key phrase is TRY....I'm not that savvy on links. Most of it is available only as abstracts, but it is usually all you need.

[Lisa]

Ann:

You joined us because you have Celiac Disease. You also joined us as a Doctor. You have also been very willing to post in your position as a Doctor, and be informative as much as you can to answer many questions.

I would rather hope, instead of us asking you questions.....the turn-around.

You ask us the questions, to further your knowledge of our experiences. What you learn here, pass it on to your colleagues. Write a paper...you have the subjects.

We want you to stay and not be hammered by dx's questions...

How can we help you get the word out.

Thank for your time and your true dedication.

Lisa

[ckaloha]

True, but you could say the same about any diet with restrictions. My point is, if you react badly to gluten, why does a physician insist on seeing physical damage before agreeing that this is a problem?