The ignorance - even from specialists! [Archive]

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Ellen

01-21-2007, 12:39 PM

From a friend who said I can share her email:

Greetings:
I just posted this to celiac@childrenwithdiabetes.com (celiac@childrenwithdiabetes.com), so if you subscribe to that group, hit delete!~
If you don't, thought you might be interested in "revisiting" the celiac landscape through my eyes, as it's evolved in only the past few years......I wrote this in response to a mom who commented:
I’ve had a Gastroenterologist tell me that, if the food doesn’t give my daughter a belly ache, she ought to be allowed to eat gluten. He insisted that celiac caused nothing worse than stomach discomfort and there were no long-term risks involved in the failure to remain gf. He said, “It’s not like you can eat gf anyway”.
The single BEST aspect of cyber-connections is strength in NUMBERS. Collectively we moms CAN effect changes, even in the face of arrogant docs & uninformed restaurateurs. Three years ago, a pediatric endocrinologist at Children's in Phila told a mom he wouldn't screen her 5 yr old for celiac because THAT'S A HORRIBLE DIET & NO ONE CAN KEEP THEIR CHILD ON IT!! Today all the type 1 patients there ARE screened. So - that's progress! I once read it takes DECADES for medical "beliefs" to change.... Interestingly, a friend whose now 22 yr old son was dx'd as a child ( he does NOT have diabetes) responded to my e-mail : .... Here's what she wrote: Each time I hear you talk about Dr. Verma I smile. She was the one who diagnosed *** at CHOP when she was completing her fellowship in gastroenterology. She was the only one who listened to me without patronizing me, and she was the only one who listened to me report his (classic) symptoms and instantly said "sounds like celiac." She also added that after forwarding my e-mails to her son at college, he went out in search of GF beer! LOL.....
Lastly, hats off to all you proactive moms who DO go the extra mile and DO put up with the "ignorance" of strangers, relatives etc and DO help other moms adjust to a GF way of life ...because I would hate for anyone's type 1 child to have to suffer as my daughter did because the celiac was overlooked. *** became very ill her senior year in high school & "all" the doctors could find was "maybe mono", despite an elevated sed rate & elevated liver tests, both of which indicated "inflammation". Meanwhile she was anemic, lost weight, had zero energy & missed the last 6 wks of high school.
She recovered that summer ( in my "South Beach"-oriented kitchen where we ate very little gluten anyway now that I think of it!!) & went off to college in NYC where she lived on pizza, bagels, beer, pasta, red licorice, etc etc etc.......If the celiac had been "considered" the previous year, given the fact that she had had diabetes since she was 9, I do believe her college years would have been completely different. Yes she wouldn't have been able to "indulge", but she also wouldn't have struggled academically because she was sleeping 16-18 hrs daily!
So..even when people say and do STUPID things at birthday parties or whenever, just remember the child you advocate for today is the future adult who WON'T suffer from years of insidious damage. The hardest part for me to swallow ( bad pun) post-dx was finding so many posts at http://www.pubmed.com/ (http://www.pubmed.com/) from European journals back in the 1980s that recommended screening all type 1s for celiac. Back then they thought the prevalence in type 1s was about 6% - as you saw in my recent e-mail from the new ADA care guidelines, it's now believed to be as high as SIXTEEN percent .To have had ***'s esteemed endo in NYC LAUGH at me when I mentioned celiac testing in February 2003 still makes my skin crawl, as does hearing *** say for months afterwards "it's not normal for a 20 yr old to be this tired"..................
sigh.......

p.s....and for those who struggle with GF cooking, check out these wonderful blogs:

http://glutenfreegoddess.blogspot.com/ (http://glutenfreegoddess.blogspot.com/) great photos & lots of GF cooking hints
http://glutenguide.blogspot.com/search/label/Diabetes (http://glutenguide.blogspot.com/search/label/Diabetes) last week's post about Catherine's dual dignosis & how she suffered until the celiac was dx'd...also lots of yummy photos in her blog
http://gluten-free-blog.blogspot.com/search/label/Pizza (http://gluten-free-blog.blogspot.com/search/label/Pizza) more photos & a yummy-looking THICK crust GF pizza

rmccully2000

01-21-2007, 01:32 PM

Ellen

01-21-2007, 03:35 PM

I'm certainly NOT going to flame you. I fully respect that you have given very careful consideration to this issue. Further, I must mention that my children have thusfar tested negative for celiac...so you have done exhaustive research and come to conclusions that are proper for your family.

I do think there are many things to consider for each family faced with the daunting decisions about whether or not to treat asymptomatic celiac, which is indeed a gray area as you pointed out.

So I'll just add a couple of links here for anyone who is interested.

Univ of Chicago's program: http://www.buffaloglutenfree.org/articles/article/1288898/31720.htm (http://www.buffaloglutenfree.org/articles/article/1288898/31720.htm)

North American Society for Ped Gastro...
http://celiachealth.org/pdf/celiac8.pdf

Endocrinological Disorders and Celiac Disease
http://edrv.endojournals.org/cgi/content/full/23/4/464
....There is some evidence that the dietary treatment improves the quality of life in silent celiac disease (266 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R266)), and that even asymptomatic patients with celiac disease may suffer from osteopenia or osteoporosis (252 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R252), 259 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R259)). The natural course of silent celiac disease remains poorly understood. It is not yet unanimously accepted that population-based screening programs for celiac disease should be carried out. However, it is a different issue to employ screening in individuals known to run an increased risk of the disease. For several reasons, autoimmune endocrine diseases belong without doubt to such a risk group. First, it is expected that screening will yield positive results in this group more (3–5%) than in an unselected population (0.3–1.0%). Second, it is often possible to confuse symptoms of thyroid dysfunction, for instance, with those of celiac disease. Third, both patients with endocrinological disorders and those with celiac disease run an increased risk of osteopenia, which is possible to prevent and even treat by means of a gluten-free diet, provided that the proper diagnosis of gluten intolerance is made. Moreover, gluten-free dietary treatment, in some cases, will be of benefit in associated conditions, e.g., in infertility or miscarriage problems (152 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R152)). Nor can the risk of lymphoma be ignored (6 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R6)), although its likelihood would seem to be low in symptom-free celiac disease (267 (http://edrv.endojournals.org/cgi/content/full/23/4/464#R267)); the same applies to neurological complications....

Jackie UK

01-21-2007, 03:59 PM

Ok.. flame away at me, but I have found very little conclusive evidence that asymptomatic (silent) celiac is dangerous to our children. I don't have time to link to all the studies I have found but I'm not convinced that this is something everyone with antibodies should do, when there are no symptoms.

The only thing I could conclusively find was a slight increase in osteoporosis in adults and a stature loss of 2 cm in silent/undiagnosed celiacs.

They tried to prove the behavioral aspect and tested adolescents at a mental health clinic. They did not find that the troubled teens had a undiagnosed celiac greater than expected.

Mason had one positive and one negative test for the antibodies and I want to know why I should put him through invasive tests. I am not afraid to make difficult decisions if it is in the best interest for my children (I opted for a fully invasive skull surgery although a neurosurgeon insisted this surgery would be cosmetic and not help her head pain. He was wrong and my gut instinct was right)

If the damage is silent and doesn't seem to cause pain, malnutrition, cancer, etc.... why go gluten free? I don't see the harm in taking a wait and see approach, and making sure he gets plenty of calcium and vitamins. What is the rush in biopsies and gluten free diet? If he does start showing symptoms, the damage can be reversed within a year of gfd. This seems to be the only conclusion that most studies agree on.

For every study out there suggesting (and most of them are not conclusive) a link between celiac and this/that, I can find a different study suggesting the opposite.

Anyway, that is just my opinion and everyone has to follow their own gut instinct as a parent. I just don't like this kind of blanket statement that EVERY child should follow the same course of treatment.

Becky, Mom to Mason ^

Ok, Ive calmed down a little.. maybe I overreacted here. I have just felt pressure from others to not follow my gut on the celiac issue and I went off about it here. Obviously if there are serious symptoms something should be done.

Entrenched belief is never altered by the facts.....

By the time you see symptoms the damage is done. One of my identical twins has type 1 diabetes and celiac. She had started to suffer from severe hypoglycaemia and the insulin regimen that had worked before, suddenly seemed to be causing severe problems. My daughter had 7 seizures at night over 18 months due to the damage caused to the gut which cause very poor absorbtion. Even fast acting glucose didnt absorb properly. She had no stomach pain, no weight loss, no amemia, no significate difference in bowel movments. The absorption was erratic so I could never be sure what was going on. Life was hell for a long time for her and us. I live in the UK and at the time children with diabetes were not routinely screened. I googled the symptoms found several things that pointed to celiac. The diabetes clinic who were saying things like you have said and ignored us. Saying that she wasnt ill enough and other rubbish. I spoke to other parents on the CWD New Zealand and Aus list. Met another parent on that list with a child with both conditions. When I went through the things that were happening I realised that Sasha probably had celiac. I managed to get blood tests done when I insisted. The blood tests were positive. My other twin daughter (who doesnt have D) who had no symptoms was tested and she too was positive. The twins had biopsies. Which are very simple procedures. It only takes about 15 minutes and the tissue samples taken are smaller than the size of the head of a pin. My twins were recovered awake and eating again within two hours. We returned home four hours after the biopsy. Beckie had coeliac too. She showed no symptoms because she dosent have diabetes so we wouldnt have problems with a mismatch of absorption and insulin.

There has been some research that appears to show the early diagnosis amd treatments of celiac might prevent diabetes from happening in suseptible people.

I post on a GF message board where there are female adults who are infertile and that has been attributed to having had undiagnosed and untreated celiac disease for many years. Other adults have suffered a lifetime of ill health and having been diagnosed in adulthood although they are now GF their health has never recovered.

I think that you need to review the evidence.

Mother of identical twins with celiac and one with diabetes

Jackie

Laura

01-22-2007, 07:30 PM

When my son was diagnosed he didn't have any of the normal Celiac symptoms that I thought he would. When our doctor started testing all the kids I was sure he would be negative. 2 blood tests later all I had was a weak positive. His endo convinced me to do a biopsy. The biopsy was positive. The GI told us he was in the very early stages of Celiac. I asked about the diet and whether or not we should start it. She said we could either start it now or wait until he was sick enough to make me want to start it. Eventually, she said, it would get worse. I immediately started the diet. I decided it is easier to change a child's diet the younger they are.

Almost immediately after starting the diet his insulin needs changed a lot. He is using much less insulin a year later even. His behavior is completely different. Before when he would act up or get emotional really easy I always blamed diabetes and thought maybe it's because he's low, or high, or hungry or whatever was going on at the time.

The food change is hard at first but we have found gf replacements for everything he loves. When we first changed his diet I thought it was going to be impossible but it's not. He has accepted it very well. When he goes to a birthday party he just brings a gf cupcake and has a great time being a kid.

Now that he has been gluten free, there is a huge difference when he accidentally has gluten. It's only happened 2 times but both times I have seen his blood sugars shoot way high and had the hardest time getting them down for about 3-4 days. His behavior changes as well.

I am in no way ever going to judge the decision of another parent when it comes to how to take care of their child. This disease is a pain in the behind. The way I looked at it was, even if there was just a slight chance this disease could alter his life, I should do everything I possibly could to take that chance away. He already has enough going against him with diabetes. Why risk it when I know he's positive.

aklap

01-25-2007, 04:09 PM

Mason had one positive and one negative test for the antibodies and I want to know why I should put him through invasive tests.

Do you know what specific tests were done on Mason? Was a complete Celiac Panel done? Many times docs will only order 1 or 2 tests, which will not give you a full picture. Was a Total serum IgA done? This rules out IgA deficiency. If one is IgA deficient, it will skew the test results. The other question - how old is Mason? Children younger than 2 [I've also seen 5], do not test reliably because they don't produce the antibodies at that age. More info on Celiac Testing (http://www.celiacforums.com/viewtopic.php?t=217).

Edit to add: Also be aware that a single test does not clear you for life. Followup testing should be done, as CD can develop later in life. Since Mason had 1 positive test and 1 negative test - I would not let CD be swept under the carpet so quickly. If you haven't done so already, please get copies of your labwork. Many, many times, things are never reported to us, or they are reported as "normal". I see this way too often. It never hurts to be proactive in your own healthcare.

Prevalence of Silent Celiac Disease in Patients with Dyspepsia. (Jan 2007)

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17235704&query_hl=2&itool=pubmed_docsum

1: Dig Dis Sci. 2007 Jan 20; [Epub ahead of print] Links

Ozaslan E,
Akkorlu S,
Eskioglu E,
Kayhan B.

Department of Gastroenterology, Numune Education and Training Hospital, Ileri Mah. Mektep Sok. No: 7/10, Kurtulus, 06660, Ankara, Turkey, er72@hotmail.com.

Celiac disease (CD) has become more common than in the past, although it frequently remains undetected for long periods of time. One reason for this is failure by health care professionals to recognize the variable clinical manifestations of CD and to perform the appropriate tests to make the diagnosis. Although dyspepsia may be part of a clinical spectrum in CD patients, there are scarce data about its prevalence in silent CD. We aimed to determine the prevalence of CD in otherwise healthy dyspeptic patients by means of serologic screening followed by endoscopic biopsies if appropriate. Anti-endomysium antibody assay was positive in 3 of 196 patients. All 3 were female, ages ranged from 19-52 years (mean +/- SD age, 36+/-16 years). Duodenal biopsies were compatible with CD in all, whereas abnormal endoscopic findings were noted in 2. Therefore, a 1.5% prevalence of CD was observed in this study group. The odds ratio for CD was 2.57 (95% confidence interval) in comparison with the general population. CD should be kept in mind as a cause of dyspepsia during clinical activities. The association between these 2 conditions is, at most, weak, but a gluten-free diet may still bring symptomatic relief for dyspeptic symptoms in CD. During endoscopic examination for dyspepsia, if indicated, endoscopists should carefully inspect the duodenum for CD findings. Although routine serologic screening can not be recommended, it may be appropriate for the patients with refractory dyspepsia, especially females.
PMID: 17235704 [PubMed - as supplied by publisher]

My point in posting this study is that damage does occur in Silent Celiac.

Celiac Disease is Celiac Disease - whether you have symptoms or not. Judging CD solely by symptoms is not a good thing. Just because someone isn't reacting doesn't mean damage isn't being done. Mucosal damage can be slight enough that it will not show on blood work - that only way it's detected is by biopsy.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1435993

Celiac disease is diagnosed typically in early childhood around age of 2 years. A second peak is found around age of 40 years [3]. Most symptoms are due to malabsorption of nutrients and vitamins [13,14]. However, the clinical manifestations differ greatly, depending on each case and ranging from asymptomatic (silent) [15] to full blown (symptomatic, clinically overt) celiac disease [16]. The severity of symptoms is not necessarily proportional to the severity of the mucosal lesions and patients with total villous atrophy can be asymptomatic or present with subclinical symptoms such as iron deficiency or muscle cramps. Nowadays, more subjects present with asymptomatic or mild celiac disease than with the classical symptoms of severe malabsorption [4,17].

Personally, I feel people DO have symptoms, they just aren't aware of them [or fail to acknowledge them]. I have a good friend that has a family history of CD, his wife & I made several requests of him to get tested. He said "No - I feel fine". Finally he did relent and get tested, sure enough positive blood work and positive biopsy. After he'd been GF for awhile, he said he noticed subtle changes. Things that he just thought were "normal". This was all after they removed his brain tumor. I often wonder if the two weren't connected...but we'll never know.

Celiac disease is currently classified into four subphenotypes:

Classical celiac disease - manifests with classical GI symptoms of diarrhea and weight loss from malabsorption. Both serological and biopsy results confirm the diagnosis, and symptoms improve on a gluten free diet.

The most commonly described form. It describes patients with the classical features of intestinal malabsorption who have fully developed gluten-induced villous atrophy and the other classic histological features. These patients present because of GI symptoms, and are identified as CD sufferers through the investigation of these symptoms. This group can also be said to have symptomatic CD.

Celiac disease with atypical symptoms - features a predominance of extraintestinal manifestations with few or no GI symptoms. As with classical celiac disease, diagnosis is made with positive serology and biopsy samples and amelioration from a gluten free diet.

Appears to be one of the most common forms. These patients generally have little to no GI symptoms, but seek medical attention because of another reason such as iron deficiency, osteoporosis, short stature, or infertility. These patients generally have fully developed gluten-induced villous atrophy. Because these patients are “asymptomatic” from the GI perspective, if their atypical CD feature is not recognized, they may be difficult or impossible to distinguish from “true” silent (asymptomatic) CD patients.

Silent celiac disease - is categorized by individuals being completely asymptomatic, but testing positive with serology and biopsy. Detection is usually from screening of high risk groups, or when biopsies and endoscopies are performed for other reasons.

A very common form of CD. Refers to patients who are asymptomatic but are discovered to have fully developed gluten-induced villous atrophy after having undergone serologic screening or perhaps an endoscopy and biopsy for another reason. These patients are clinically silent, in that they do not manifest any clear GI symptoms or associated atypical features of CD such as iron deficiency or osteoporosis. These patients can be confused with atypical CD if their atypical features are not recognized in an early stage. As well, Fasano et al.15 have shown that many of these patients do not manifest fully developed villous atrophy.

Latent celiac disease - is associated with positive serological tests, but negative biopsy results. While asymptomatic at the time of diagnosis, in the future symptoms usually develop and/or histological changes are evident upon repeat biopsy.

Represents patients with a previous diagnosis of CD that responded to a GFD and who retain a normal mucosal histology upon later re-introduction of gluten. Latent CD can also represent patients with currently normal intestinal mucosa who will subsequently develop gluten-sensitive enteropathy.

Refractory CD. For the purpose of this review, patients with refractory CD are patients with true CD and villous atrophy (i.e., not a misdiagnosis) who do not, or no longer, respond to a GFD. Although the most common reason for failure to respond to a GFD is dietary indiscretion or unknown exposure to gluten, refractory CD also occurs in patients on a GFD who have developed a complication such as ulcerative-jejunoileitis, or enteropathy-associated lymphoma. Patients with refractory CD do not necessarily have positive serology for CD. Refractory CD was reviewed in the context of the requested objectives.

----------------------

Symptomatic celiac disease is associated with considerable morbidity due to chronic gastrointestinal symptoms and malabsorption of nutrients, weight loss, metabolic bone disease, anemia and general debility. The significance of the disease in the majority of individuals with silent celiac disease is less clear. However, most patients with silent celiac disease have occult manifestations of the disease, including reduced bone density, iron or folate deficiency and associated autoimmune diseases that are frequently more clinically significant. Celiac disease results in an increased risk of the development of various malignancies including lymphoma at any site, not only the small intestine. There is also an increased mortality rate in celiac disease, exceeding that of the general population by a factor of 1.9 to 3.8. The increased mortality is mainly due to malignancies. The excess mortality is reduced after 1 to 5 years on a gluten free diet, demonstrating protection by the gluten-free diet.

aklap

01-25-2007, 10:36 PM

The only thing I could conclusively find was a slight increase in osteoporosis in adults and a stature loss of 2 cm in silent/undiagnosed celiacs.

Here's a study [I wish it was newer] that found iron-deficiency anemia, short stature in children,cutaneous lesions of dermatitis herpetiformis in adults, other diseases, Diabetes and atopy. This is pretty hard to ignore - particularly in people that "don't have symptoms" ;).

The clinical pattern of subclinical/silent celiac disease: an analysis on 1026 consecutive cases.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=10086653

1: Am J Gastroenterol. 1999 Mar;94(3):691-6. Links

Bottaro G,
Cataldo F,
Rotolo N,
Spina M,
Corazza GR.
I Pediatric Clinic, Catania University, Italy.

OBJECTIVE: The demographic, clinical, and epidemiological features of subclinical/silent celiac disease in Italy were analyzed in a multicenter study carried out with the participation of 42 centers, in the years between 1990 and 1994.

METHODS: One thousand twenty-six subclinical/silent patients (644 children and 382 adults, 702 women and 324 men) were considered eligible for the study.

RESULTS: The prevalence of the subclinical/silent form increased significantly during the study both in adults (p < 0.001) and in children (p < 0.005), but its prevalence was always lower (p < 0.001) in children than in adults. This increase appears more likely due to a greater diagnostic awareness and to a better use of screening than to a higher number of subclinical/silent cases. Whereas in 1990 a significantly higher proportion (p < 0.001) of subclinical/silent celiac patients was diagnosed in Northern Italy rather than in Southern-Insular Italy, both in adults (46.7% vs 17.2%) and in children (22.0% vs 9.0%), in 1994 such a difference was no longer conspicuous. Both in children and in adults, iron-deficiency anemia appeared to be the most frequent extraintestinal symptom, followed by short stature in children and cutaneous lesions of dermatitis herpetiformis in adults. In 25.9% of the cases another disease was present, with a significantly higher frequency (p < 0.05) in adults (30.1%) than in children (20.7%). Diabetes and atopy appeared to be the most frequently associated conditions both in children and in adults.

CONCLUSIONS: This study has provided an analysis of the largest series of subclinical/silent celiac disease reported to date. In Italy, this form is most frequently recognized in adults, and prospective studies will clarify whether the lower frequency observed in children is a real or apparent phenomenon.
PMID: 10086653 [PubMed - indexed for MEDLINE]

They tried to prove the behavioral aspect and tested adolescents at a mental health clinic. They did not find that the troubled teens had a undiagnosed celiac greater than expected.

While the studies on behavioral issues and gluten are lacking. I know many parents that notice a huge in their kids behavior when they are on gluten [accidental exposure] and off gluten. Night and day differences. I think the studies they need to be doing are more dietary in nature. Put these kids on GF [and possibly Casein Free] diet and track their behavior. Now that would be interesting! :)

The problem that exists currently, is that by today's standards CD is dx'ed by villi damage. If there's no villi damage, there's no CD. If there's no CD, you can continue to eat gluten. "Crunch all [the gluten] you want - they'll make more". There are doctors/researchers that feel CD is just the tip, a small slice of the Gluten Sensitivity Spectrum. They are finding that gluten affects the entire body [even the nervous system] (http://renegadeneurologist.com/?p=11), not just the gut. I am living proof if this. Gluten does affect me, yet I do not have CD [no damaged villi]. Oh boy does gluten affect me! I spent 1.5 years feeling like garbage and the medical community did not have any answers. After doing the research, and after dietary trials, I found that gluten does indeed not agree with me.

What needs to happen is that docs need to widen their thinking on CD. Think outside the box a little bit. Sadly, that will take some time.

aklap

01-29-2007, 06:41 PM

Some one posted their story on Delphi Online Celiac Support Group (http://forums.delphiforums.com/n/main.asp?webtag=celiac&nav=messages&msg=58686.1&prettyurl=%2Fceliac%2Fmessages%3Fmsg%3D58686%2E1) about their battle with Silent Celiac and what cheating does. I just wanted to wanted to pass this along.

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