A Question About Enterolab

[Canadian Karen]

Does that mean when I was pregnant with the twins, I was excessively pregnant?

I don't think IMResident is just trying to "rile us". I think he sincerely is looking at all angles but the cutting edge way of thinking in regards to celiac doesn't fit well with someone trying to fit into the typical "doctor mold". Perhaps if more residents starting delving deeply into this like IMResident, then we would have more forward thinking doctors whose "lightbulbs went off" to properly diagnose people.

One thing that I do hope IMResident doesn't get into the habit of doing though is staying with the belief that what is scientifically proven now is what will always be the best way. There is room to explore the possibilities by leaps and bounds in regards to the far reaching ramifications of gluten intolerance. One thing to keep in mind, if Banting and Best hadn't done labour intensive, exhausting research in the diabetes field, where would diabetics be today? It's a good thing they didn't have the mindset that "Oh well, we know all there is to know about diabetes........"

Food to ponder (gluten-free, of course.....)

Karen

[IMResident]

I'm beginning to think Mr. IMresident is just having some fun with us.

Cara

I don't know where you got that impression from but I am genuinly trying to help. There's a reason why I dislike enterolab so much. First, I want to tell my personal story because this might put things in perspective. So sorry but this is going to be a long post.

I think you, or maybe someone else asked me what my personal interest in this board is and I said that both my mom and brother have celiac disease, well that's not entirely true. The truth is that my mom and to a lesser degree my sister had depression that they thought was celiac disease. I think their story is all too familiar.

I am going to describe my mom because it was more serious for her. She had diarrhea every day, fatigue, inability to get out of bed, sometimes insomnia, lack of motivation and anxiety. So of course my mom constatntly went to the doctor who found nothing wrong with her, including negative antibodies for celiac. They tested for hyper/hypothyroidism/Addison disease/Cushing syndrome/ pituitary tumor, in other words everything. I think she saw about 10 different doctors in about a year, and all of them told her that she has anxiety or depression. It seemed pretty obvious to us that she had major anxiety and she wasn't as happy as she used to be. Unfortunately she was the only one not to reognize this. At this point she started researching on the internet and found celiac disease and started on a gluten free diet. This diet worked miracles, unfortunately only for the first 2 weeks. After this she thought her food was being contaminated by wheat from the dishwasher, and that other foods besides gluten were making her sick, like casein, and than later corn cereals. She even stopped eating eggs. All of this continued for 2 years, until one day when she felt especially bad and went to doctor to try antidepressant as a last resort. After about a week and a half of taking antidepressants we noticed that her mood returned to normal, she started eating gluten again, her anxiety and diarrhea were gone. She took celexa for a year and latter enrolled in congitive-behavioural therapy, and never had diarrhea/depression/fatigue since (maybe a little bit of anxiety). Later she told me that sometimes before the treatement she was thinking about commiting suicide and was pretty close to carrying it out!

Now don't get me wrong there are some genuinly sick people here with ataxia, growth stunting, neuropathy, hypothyroidism, failure to trhive not to mention classic celiac disease, but it is also my personal opinion that about 30% of the people on this board have depression/anxiety disorders and not celiac disease. I am saying this because most the of the stories I've read are exactly like my moms, and I am saying this to help people not to insult them. It makes me feel sad to see other people go through what my mom did and not even recognize it.

Unfortunately in mild/moderate depression people don't even realize that they feel sad instead they feel all their symptoms are physical and then they start to look for physical causes and this leads to a dangerous spiral. Doctors are trained to reognize people who are anxious or depressed by the way they look, dress or talk, and many times, another person, like a doctor or a friend can tell things about a person that even he/she might not be aware of.

This brings me to why I dislike enterolab so much. I feel its misleading people into thinking that they have a physical disease, and makes it harder for them to recognize the real cause of their problems.

[ravenwoodglass]

I don't know where you got that impression from but I am genuinly trying to help. There's a reason why I dislike enterolab so much. First, I want to tell my personal story because this might put things in perspective. So sorry but this is going to be a long post.

I think you, or maybe someone else asked me what my personal interest in this board is and I said that both my mom and brother have celiac disease, well that's not entirely true. The truth is that my mom and to a lesser degree my sister had depression that they thought was celiac disease. I think their story is all too familiar.

I am going to describe my mom because it was more serious for her. She had diarrhea every day, fatigue, inability to get out of bed, sometimes insomnia, lack of motivation and anxiety. So of course my mom constatntly went to the doctor who found nothing wrong with her, including negative antibodies for celiac. They tested for hyper/hypothyroidism/Addison disease/Cushing syndrome/ pituitary tumor, in other words everything. I think she saw about 10 different doctors in about a year, and all of them told her that she has anxiety or depression. It seemed pretty obvious to us that she had major anxiety and she wasn't as happy as she used to be. Unfortunately she was the only one not to reognize this. At this point she started researching on the internet and found celiac disease and started on a gluten free diet. This diet worked miracles, unfortunately only for the first 2 weeks. After this she thought her food was being contaminated by wheat from the dishwasher, and that other foods besides gluten were making her sick, like casein, and than later corn cereals. She even stopped eating eggs. All of this continued for 2 years, until one day when she felt especially bad and went to doctor to try antidepressant as a last resort. After about a week and a half of taking antidepressants we noticed that her mood returned to normal, she started eating gluten again, her anxiety and diarrhea were gone. She took celexa for a year and latter enrolled in congitive-behavioural therapy, and never had diarrhea/depression/fatigue since (maybe a little bit of anxiety). Later she told me that sometimes before the treatement she was thinking about commiting suicide and was pretty close to carrying it out!

Now don't get me wrong there are some genuinly sick people here with ataxia, growth stunting, neuropathy, hypothyroidism, failure to trhive not to mention classic celiac disease, but it is also my personal opinion that about 30% of the people on this board have depression/anxiety disorders and not celiac disease. I am saying this because most the of the stories I've read are exactly like my moms, and I am saying this to help people not to insult them. It makes me feel sad to see other people go through what my mom did and not even recognize it.

Unfortunately in mild/moderate depression people don't even realize that they feel sad instead they feel all their symptoms are physical and then they start to look for physical causes and this leads to a dangerous spiral. Doctors are trained to reognize people who are anxious or depressed by the way they look, dress or talk, and many times, another person, like a doctor or a friend can tell things about a person that even he/she might not be aware of.

This brings me to why I dislike enterolab so much. I feel its misleading people into thinking that they have a physical disease, and makes it harder for them to recognize the real cause of their problems.

Thank you for posting this history it helps folks to understand better where you are coming from. I am sorry your Mom had to go through so much. It is well accepted that in some cases depression does present with physical symptoms. I am also sorry your Mom suffered so long before she realized that she was not helped on the diet. Just as there are multiple causes for the development of things like arthritis there are also multiple causes of brain chemical inbalances.

Unfortunately for undiagnosed celiacs some of the medications used to treat depression and anxiety can have very serious and detrimental effects on the brain. I am a firm believer that celiac should be ruled out first before any meds are given. For some of this requires proof beyond what out body tells us in the first few months gluten-free.

I know you believe Enterolab has a bit too high of a positive rate to be comfortable with but you need to remember that most who consult enterolab have been sick for a while and are symptomatic. For those of us who have celiac there is a strong chance it has been passed on to our children. Those children may simply present as small for their age, fussy or tempermental, we may be told they are disruptive in school or the opposite that they are withdrawn. Many use Enterolab in part because it does genetic testing. Being forwarned is being forarmed. If you know your child carries the genes for celiac or guten intolerance you can be more aware of the need to monitor that child for indications that it is becoming an active rather than a latent problem.

We need to be more proactive in the prevention of the serious issues that go with celiac that presents in 'unusual' ways. For many our lives are negatively impacted by the non GI issues for a long time before we become the 'typical' celiac presentation.

If Enterolab, which many conventional doctors are now starting to accept by the way, helps people before their villi and lives are destroyed why would that be a bad thing?

[mle-ii]

Fresh this month~

Open Original Shared Link. PMID: 16960894 Sept 2006

And in July~

Anti-tissue transglutaminase IgA antibodies in peripheral neuropathy and motor neuronopathy.

Open Original Shared Link

Antibody to Tissue Transglutaminase May Fall Short for Accurate Triage of Celiac Disease

Open Original Shared Link (must register, but its free)

Strongly positive tissue transglutaminase antibody assays without celiac disease.

Open Original Shared Link

False positive reactions for IgA and IgG anti-tissue transglutaminase antibodies in liver cirrhosis are common and method-dependent.

Open Original Shared Link

couple more false positives~

IgA and IgG tissue transglutaminase antibodies in systemic lupus erythematosus.

Open Original Shared Link

Tissue transglutaminase autoantibodies in patients with non-Hodgkin's lymphoma. Case reports.

Open Original Shared Link

Thanks! Gotta figure out how you found those. I couldn't figure out a very good query for finding them.

So here we show that anti-ttg is not specfic. So therefore we should throw out these results using the same line of thought on stool testing. Clearly something we should NOT do.

But again I'm going to bring this up as no one has really commented on this yet. Look at the substrates involved in the diseases above (the tissues that are involved). Ttg binds to those and binds to other substrates. Some of those other substrates include Exogenous proteins (those that come from outside sources). Again imagine what is being bound to what and then imagine the bodies response to this "attack". How would the body remove these proteins bound to self proteins? It has to involve the immune system and cell death. So what ever tissue these proteins are bound to is going to be killed until the pathogen is gone. Even in a person who is NOT Celiac (again whatever that means). Keep ingesting the "pathogen" of gluten and the body senses a constant infection that doesn't go away. What is the bodies response to a chronic constant infection? This part I don't know yet, but I imagine it involves stress to the regulatory mechanisms of the immune system, including the thymus (whose responsibility it is to not produce antibodies to self tissue).

I don't know where you got that impression from but I am genuinly trying to help. There's a reason why I dislike enterolab so much. First, I want to tell my personal story because this might put things in perspective. So sorry but this is going to be a long post.

I think you, or maybe someone else asked me what my personal interest in this board is and I said that both my mom and brother have celiac disease, well that's not entirely true. The truth is that my mom and to a lesser degree my sister had depression that they thought was celiac disease. I think their story is all too familiar.

I am going to describe my mom because it was more serious for her. She had diarrhea every day, fatigue, inability to get out of bed, sometimes insomnia, lack of motivation and anxiety. So of course my mom constatntly went to the doctor who found nothing wrong with her, including negative antibodies for celiac. They tested for hyper/hypothyroidism/Addison disease/Cushing syndrome/ pituitary tumor, in other words everything. I think she saw about 10 different doctors in about a year, and all of them told her that she has anxiety or depression. It seemed pretty obvious to us that she had major anxiety and she wasn't as happy as she used to be. Unfortunately she was the only one not to reognize this. At this point she started researching on the internet and found celiac disease and started on a gluten free diet. This diet worked miracles, unfortunately only for the first 2 weeks. After this she thought her food was being contaminated by wheat from the dishwasher, and that other foods besides gluten were making her sick, like casein, and than later corn cereals. She even stopped eating eggs. All of this continued for 2 years, until one day when she felt especially bad and went to doctor to try antidepressant as a last resort. After about a week and a half of taking antidepressants we noticed that her mood returned to normal, she started eating gluten again, her anxiety and diarrhea were gone. She took celexa for a year and latter enrolled in congitive-behavioural therapy, and never had diarrhea/depression/fatigue since (maybe a little bit of anxiety). Later she told me that sometimes before the treatement she was thinking about commiting suicide and was pretty close to carrying it out!

Now don't get me wrong there are some genuinly sick people here with ataxia, growth stunting, neuropathy, hypothyroidism, failure to trhive not to mention classic celiac disease, but it is also my personal opinion that about 30% of the people on this board have depression/anxiety disorders and not celiac disease. I am saying this because most the of the stories I've read are exactly like my moms, and I am saying this to help people not to insult them. It makes me feel sad to see other people go through what my mom did and not even recognize it.

Unfortunately in mild/moderate depression people don't even realize that they feel sad instead they feel all their symptoms are physical and then they start to look for physical causes and this leads to a dangerous spiral. Doctors are trained to reognize people who are anxious or depressed by the way they look, dress or talk, and many times, another person, like a doctor or a friend can tell things about a person that even he/she might not be aware of.

This brings me to why I dislike enterolab so much. I feel its misleading people into thinking that they have a physical disease, and makes it harder for them to recognize the real cause of their problems.

Let me ask you this, not that I think it's the cause in this particular case, but what are some of the causes of depression or anxiety? I'm talking about chemical/nerological/biological. This is a leading question by the way.

[Jestgar]

it is also my personal opinion that about 30% of the people on this board have depression/anxiety disorders and not celiac disease. I am saying this because most the of the stories I've read are exactly like my moms, and I am saying this to help people not to insult them. It makes me feel sad to see other people go through what my mom did and not even recognize it.

Just as most people here with Celiac disease see the symptoms in almost everyone they care about, you read people stories and see the symptoms you have the most knowledge of.

"To a guy with a hammer, everything looks like a nail."

It's easiest to assume that a person's problem is something you know a lot about, but physicians don't have that luxury. They need to assume that they have a lot to learn about a person's problem.

[gfp]

I don't know where you got that impression from but I am genuinly trying to help. There's a reason why I dislike enterolab so much. First, I want to tell my personal story because this might put things in perspective. So sorry but this is going to be a long post.

I think you, or maybe someone else asked me what my personal interest in this board is and I said that both my mom and brother have celiac disease, well that's not entirely true. The truth is that my mom and to a lesser degree my sister had depression that they thought was celiac disease. I think their story is all too familiar.

I am going to describe my mom because it was more serious for her. She had diarrhea every day, fatigue, inability to get out of bed, sometimes insomnia, lack of motivation and anxiety. So of course my mom constatntly went to the doctor who found nothing wrong with her, including negative antibodies for celiac. They tested for hyper/hypothyroidism/Addison disease/Cushing syndrome/ pituitary tumor, in other words everything. I think she saw about 10 different doctors in about a year, and all of them told her that she has anxiety or depression. It seemed pretty obvious to us that she had major anxiety and she wasn't as happy as she used to be. Unfortunately she was the only one not to reognize this. At this point she started researching on the internet and found celiac disease and started on a gluten free diet. This diet worked miracles, unfortunately only for the first 2 weeks. After this she thought her food was being contaminated by wheat from the dishwasher, and that other foods besides gluten were making her sick, like casein, and than later corn cereals. She even stopped eating eggs. All of this continued for 2 years, until one day when she felt especially bad and went to doctor to try antidepressant as a last resort. After about a week and a half of taking antidepressants we noticed that her mood returned to normal, she started eating gluten again, her anxiety and diarrhea were gone. She took celexa for a year and latter enrolled in congitive-behavioural therapy, and never had diarrhea/depression/fatigue since (maybe a little bit of anxiety). Later she told me that sometimes before the treatement she was thinking about commiting suicide and was pretty close to carrying it out!

Now don't get me wrong there are some genuinly sick people here with ataxia, growth stunting, neuropathy, hypothyroidism, failure to trhive not to mention classic celiac disease, but it is also my personal opinion that about 30% of the people on this board have depression/anxiety disorders and not celiac disease. I am saying this because most the of the stories I've read are exactly like my moms, and I am saying this to help people not to insult them. It makes me feel sad to see other people go through what my mom did and not even recognize it.

Unfortunately in mild/moderate depression people don't even realize that they feel sad instead they feel all their symptoms are physical and then they start to look for physical causes and this leads to a dangerous spiral. Doctors are trained to reognize people who are anxious or depressed by the way they look, dress or talk, and many times, another person, like a doctor or a friend can tell things about a person that even he/she might not be aware of.

This brings me to why I dislike enterolab so much. I feel its misleading people into thinking that they have a physical disease, and makes it harder for them to recognize the real cause of their problems.

Thanks for being up front over that, it really does help.

One thing you experienced, albeit through your mother is the merry go round of uninformed GP's. In your mothers case it was something else but most celaics have gone through similar and many of us have after 25 yrs and more of being ill finally been diagnosed.

Obviously I don't know your mom but I know mine and being assertive and telling MD's which tests to run is not her, especially if depressed. Also many of the people are diagnosed "officially as well"... myself and my mother included.

The real problem for your mother was in a way not being able to be tested officially both for depression and to rule out celiac disease. In many ways its sad but the way many actually get officially diagnosed is by telling their MD they have a positive enterolab and then the MD has to balance malpractice against just ordering a set of blood tests! In my mother's case she had already been referred to physchiatrists for treatment of hypochondria BEFORE her blood tests were positive and then her biopsy and I'm sure many here share that experience.

[jcc]

IMresident, thanks for your post. It helps to understand where you are coming from. We all form our opinions and biases based on our life experiences. The flip side to your experience also happens, and I hope you can appreciate that.

Recognizing celiac disease on the basis of the various manifestations of the disorder is difficult. In a study20 of 228 patients with adult-onset celiac disease, it was found that 42 were diagnosed at age 60 or later. Seven patients with dermatitis herpetiformis were excluded, leaving 35 patients in the analysis. Fifteen of the 35 patients had been seen--with unexplained symptoms and abnormal blood tests--for an average of 28 years by their family physicians or in hospital outpatient departments before the diagnosis of celiac disease was made.

A national survey35 of 1,937 members of the Canadian Celiac Association addressed the issue of previous missed diagnosis of celiac disease. Of 686 patients with biopsy-proven celiac disease, 299 (43 percent) had previously been given the following incomplete or missed diagnoses: anemia, 47; stress, 45; nervous condition, 41; irritable bowel syndrome, 34; gastric ulcer, 23; food allergy, 19; colitis, 13; menstrual problems, 13; edema, 9; gallstones, 9; diverticulitis, 6; dermatitis herpetiformis, 4 and other, 36.

Open Original Shared Link

Open Original Shared Link

And how about this one?

The purpose of this study was to explore how women with ambiguous chronic illness, such as celiac disease and interstitial cystitis, cope with the difficulty of being diagnosed and the subsequent realities of daily life. A convenience sample of 15 women with chronic ambiguous illness in 4 geographic areas was interviewed via qualitative methods. Data were analyzed using conceptual coding and constant comparative methods. These categories were identified: persistence in obtaining a correct diagnosis, trivialization and stigmatization, embarrassment, being an inconvenience, and ways of coping. Women were misdiagnosed for years (R = 2 to 11) and felt dismissed as being depressed or hysterical. Yet, they emphasized that persistence in obtaining a correct diagnosis is essential even though it may mean suffering embarrassment and inconvenience. Suggestions for community health nurses to improve the lives of women with ambiguous chronic illness are offered.

Open Original Shared Link

PMID: 16863401 Fall 2006

Now, to clear up a few other things~

Neurological disease within the context of celiac disease is not new. It's been in mainstream literature for decades. Celiac Disease is listed in the

Open Original Shared Link

as a cause for neuropathy, and studies have shown as many as 16% of all small fiber neuropathy is related to celiac disease. Neurological disease, including seizures, peripheral neuropathy and ataxia within the context of celiac disease, is also highlighted in these very mainstream publications~

Open Original Shared Link

Open Original Shared Link

What is NEW is that gluten sensitivity might contribute to some of these disease processes outside of biopsy proven celiac disease, with or without villous atrophy. The research is early and ongoing, but it is moving fast and making great strides to prove this. Time will tell, but it seems prudent to test patients with these conditions for gluten sensitivity/ celiac disease and treat them if there is any sign of gluten sensitivity. You think it better to forego a perfectly safe treatment~ and risk permanent brain or nerve damage? I know people on both sides of the fence here...early treatment that resolved the condition, and late identification with little hope of improvement, only hope for slowing the progression. As a patient, I sure would hate to find out I was in a wheel chair because my doctor never mentioned this possibility and I was never given the opportunity to try it.

As I mentioned earlier, I met a pathologist several years ago on Delphi who sufferend debiliating depression for years and years, and after finally being dx'd with celiac disease...was quite upset on the flip side that none of his doctors treating his depression had tested him for celiac disease. He consequently suffered years and years, no drugs helped him. Treating the celiac disease did.

Please be careful that your feelings about the validity of Enterolab do not cause you to say things like

It is a large mistake to tell people with depression, neuropathy, diarrhea , asthma, pneumonia (and 99% of these are not related to celiac) that the cause of all their symptoms is celiac. Because than these people would never get treatement for the ilness and this not only prolongs suffering (imagine years and years with depression) but could also be dangerous and fatal in the long term.

That was a very strong statement. If it wasn't intended to rile, then it is a statement showing a lack of understanding of the subject matter and/or misrepresentation of what others are saying. I've been in the forum business for some time, and ocassionally there are people who just enjoy the process of getting others to look things up and defend their position. Sort of sending them on wild goose chases for amusement. I apologize if I wrongly jumped to this conclusion about you. Well, now, I better understand you made that statement through the lenses of your mother's experience...but still... try be careful to chose your words carefully.

While there is solid longstanding scientific evidence that celiac disease causes wide ranging neurologic and neuropyschiatric disease, and well, diarrhea in 50-60%, there is little scientific evidence regarding celiac disease and asthma. But, the anectdotal reports of asthma improving or completely resolving after instituting a gluten free diet are many. This doesn't suggest all asthma is related to gluten sensitivity, but rather it might be a symptom that resolves if someone has underlying celiac disease/gluten sensitivity, or nutritional deficiency (B6 and magnesium, in particular).

I agree with you that most people should begin with the celiac bloodtests, the COMPLETE panel. However, because there are limitations to blood testing, I don't think it should end there. I see no harm in a dietary trial, only possible benefit. If people see NO IMPROVEMENT, then of course, they should seek additional help if they still aren't well. I'm sorry that your mother didn't, but that might have more to say about the treatment (or lack of) she has received over the last ten years by her doctors.

I say most people should begin with bloodtests because I respect that everyone must make there own decision in regard to testing. Some people are just sick to death of doctors who haven't helped them for decades and don't want to bother any more with mainstream tests which haven't gotten them anywere. Others are perfectly willing to take a preventative approach, and would rather err on the side of caution when it comes to gluten...particularly if they've watched other family members suffer greatly. You need to read around these forums for a few years to appreciate just how often that happens.

We have to understand that sadly celiac disease has not been on the radar screen until very recently. Why, is another story. It took a European doctor to come over and shake things up a bit. I never fault a doctor for not knowing something he never learned in medical school. But, then, there are doctors who are willing to learn new things, and doctors who are too smug to~ and I find fault with the latter.

As for Enterolab, as I said, I cannot validate the tests any better than the next guy. I can't disprove them either. The blood tests are not perfect by a long shot in identifying those who might benefit from the diet. In the end, the best test probably is one's response to the diet, but I do recommend blood testing first just in case "the GOLD" can be reached. I have no problem with people using Enterolab. I've known many who have been helped based upon the results. People do need to know that Enterolab does not diagnosis Celiac Disease, nor do they purport to. People should also know that if they tested positive to blood antigliadin antibodies, there is no need to do the stool test, because it will also be positive. Dr. Fine told me this himself, as we already had a positive blood test (albiet the weakest indicator). Imagine that...he told me "no need to order the stool test".

Almost forgot, I know several people who turned to Enterolab because their doctor REFUSED to test them because of atypical presentation (PN, obesity, elderly).

I have had the opportunity to hear Dr. Fine speak, as he coincidentally spoke at the Wisconsin Celiac conference in my home city the very year we had begun a gluten free diet. Everything he said made sense to me, and it did validate my family's misfit presentation of gluten sensitivity. There are many of us misfits being ignorned by the medical community. Thankfully, we can unite and be heard in places like these. People with Celiac Disease have a hard enough time being diagnosed, but those of us who fail to meet that criteria are really in trouble.

I hope you will take the time to read The Gluten File, and feel free to contact me through my contact info there if you have any questions about the material I present. BTW...only about 2% is personal comment and the rest are links to articles and abstracts and other sources. I don't want anyone to take my word for anything. That is a horrendous responsibility I don't take lightly. I want people to read for themselves and then make an informed judgement.

Hope we have a better understanding of each others point of view.

Cara

[CarlaB]

I'm glad to know where you're coming from now, IMRes. I think Jestgar has a good point, especially considering that depression is a symptom of celiac.

One thing about Enterolab is that there is genetic testing that complements the sensitivity testing.

Since I know I'm one the people you suspect could have depression and not gluten intolerance, I need to say, it could be both. I am not doing great, but I am not as bad as I was. I am no longer having the stomach pain I have had my whole life. I also do not have chronic diarrhea any longer and have put back on much of the weight I have lost. In many ways I am healthier than I was, and I'm also not like your mother in that I'm not constantly looking for hidden sources of gluten. My food just isn't making me sick anymore. It seems that being sick for so long and pushing myself beyond my limits has just taken a toll on me. I've actually looked up the symptoms for depression and they do not match mine much at all. People who see me, those who don't see me very often, invariably comment on how different I look (for the better), that my face isn't so gaunt, I don't look so sick.

I do still feel really bad, but I do think gluten inolerance is the root of it. I appreciate the concern you have for all of us here, but I also think you're writing off Enterolab too quickly. It sounds like your mom had dietary response that lasted a couple weeks -- could that be she was eating healthier, or could it have been a psychological response? -- but in the end, dietary response did not prove she was gluten intolerant. For many of us here, that is not the case -- gluten actually makes us sick, whereas we are healthy not eating it.

[sagemoon]

Hi Dafadilly,

There is also another wheat free soy sauce that is carried in many stores - San-J Organic Tamari Wheat-Free Soy Sauce. Look fo it in the specialty foods area if they don't carry it in the regular sauce section. Or ask your local grocer to carry it. I wrote to San-J this past winter because all of the local sushi restaurants only carried Kikkoman. They sent me samples of their new individual packs and said that they expected them to be in the markets or available online soon.

Really sorry to hear about your grandkids. Hope they get the help they need soon.

[daffadilly]

Hi Sagemoon, I have the other Soy sauce but we all prefer the Kroger brand. Thanks for the sympathy on the grand kids!! I just heard from the d-i-l yesterday that my son (the one that keeps his head stuck in the sand) has now found some new chips that he bought, Michael's brand (I have not tried them yet), they just happen to say on the package gluten free, MSG free & no additives, & I think no trans fat. There is a bar b que flavor, sour cream & onion etc & d-i-l said they were all gluten-free Just a matter of time !

IMRESIDENT: I just want to repeat what I tell everyone - get the GENE test. From what you have said about your mom, I would bet that she has two DQ1 genes. They come with all the neurological stuff, yes we can tend to be a little paranoid, plus the depression.

Check my post on the allergy thread for some background on me. Everyone in my family is mostly depressed & or on antidepressants. I am 60 & am very sensitive to meds, so I do not take antidepressants, but I do take a B12 everyday. I am soooooo happy & mostly upbeat all the time, at work they say I am a delight to have around if for nothing else just because I am always in a good mood (been here 6 years). It is my opinion that if you have the DQ1 genes and you are eating gluten or have been that there is no way that you are not going to be depressed on some level. I also have no symptoms while I am gluten-free & I have tons of energy, no one can keep up with me.

I will say that although I went through a year of recovery from a bad broken knee that at the 2 year mark Gluten free I did notice a little bit of improvement & I keep thinking, how much better can I feel!!!!!!!! When I thought I felt fine already. I have had to give up dairy, but I had to do that one time when I was mostly just wheat free & ate wheat about once every three months.

So back to your mom, it is obvious that she needed antidepressants from the beginning. Just because you have celiac & go gluten-free does not mean that you do not have to take antidepressants. Also, I do not know the age of your mom, or if she had a completely gluten-free kitchen, but I find it doubtful that she was completely gluten-free. I spend a lot of time on the internet educating myself about the gluten-free issues but also with my local support group. For instance do you know that the Hershey minature candy bars are not gluten-free but the regular size ones are? And, if your mom was trying to continue to eat as she always did but substituting the gluten-free bread etc., it is my opinion that she was not eating a good diet & was getting cross contamination from all the replacement grains. IS she eating differently now that she is taking the meds & feels like cooking etc. OR is she eating less because she is up & out doing things?

If she is taking the meds & eating gluten again, be ready, something will happen to her health. Sometimes when you are on the gluten-free diet although not completely gluten-free it gives you an abatement of symptoms for a while. My grandchildren for example, 3 of them mostly gluten-free for 6 months, last Sept 2005 they go back to eating gluten, they were very healthy thru the winter & the fall allergy season. This year they started getting things about June & now in September, one year later & allergy season they are all seriously ill.

You could check with your mom on her symptoms & see if they are really gone or if she is ignoring them or if they were already gone but she did not tell you because in her depressed state she wanted your sympathy.

Also, you need to check all her vitamin and mineral levels. Get a copy of the report yourself. & read up on B12 & all the B's. Anyone that has celiac and has a normal B12 needs to be taking a B12 anyway everyday, they will see loads of improvement. I do not know why this is, but I am sure you could research it & let us know. I would also bet that along with the two DQ1's that your mom has a low B12.

Note to everyone you should mostly feel utter joy in your soul everyday, have a passion in your life that you cannot wait to get up to get to it, enjoy your life, do nice things for yourself everyday, have a great wonder about new people and situations, and laugh. If you do not you should think about taking an antidepressant, a B12 everyday, & check all your vitamin & mineral levels & get a copy of the results yourself, check your diet to make sure you are getting the proper ratio of carbs, protein, fat, etc, stay gluten-free and cut out any grains that are making you even remotely brain foggy or sick !!!!!

[jcc]

daffadilly,

You make a good point, and after I left this thread this morning... I did wonder if in the ten years IM's mom's doctors told her she was depressed, if they ever tested her B12 level, and what the result was. Normal isn't good enough. Both B6 and B12 deficiency can contribute to depression and anxiety, and sometimes even correcting the diet does not correct that problem entirely (if one has co-existing pernicious anemia or some other reason for B12 absorption problems, or a need for more than normal B6 like my older daughter does). And, yes, even despite a gluten free diet and proper supplements, somoe people require medication for depression or any other number of conditions. A gluten free diet isn't a cure all for everybody, and some times other co-existing conditions need to be addressed. B12 deficiency not only causes depression, but GI symptoms as well (and of course cognitive problems, ataxia, and a whole lot more if left untreated).

Cara

[Matilda]

..

[Matilda]

..

[Shalia]

IMRes,

Then there are those of us with exactly the opposite problem as your mom.

For at least 8 years I haven't slept. I've had a sleep study done where I could prove that... I never reached higher than stage 2 sleep for more than 2-3 hours a night for three nights. I didn't sleep. Even on hard drugs like Dalmane. (And that induced psychosis R us.)

Gluten free, I sleep. For the first time in years, I'm not taking sleeping pills to sleep 2 hours a night. Can you imagine what a blessing that is?

I've taken THIRTY SIX psychiatric medications in three years. THIRTY SIX. They've all failed for one reason or another. (Mostly for making me psychotic!)

Now, yes I still take meds, but my mood is STABLE. It's been years since I've been able to claim that!

I've lost months of my life to hospitals. I've lost over a year of work to short term disability. Now I can function. With simple diet change.

Why couldn't I get anyone to test me? Why did I have to change my diet on my own and finally get a "diagnosis" based on diet response instead? Why wouldn't people listen?

Because I wasn't skinny? Because I'm bipolar (which I don't doubt)?

But can't I be celiac TOO? Especially when it's cleared up SO many problems for me? When I'm not running to the bathroom anymore, when I'm finally SLEEPING (I feel like crying right now thinking about my life before...) when I'm finally able to concentrate and think and I don't feel stupid all the time. No headaches daily... not a single migraine in 3 months... And freaking FOOD was doing it to me?

I'm sorry your mom went through hell. Really, I am. But so many of us here have gone through the opposite hell. We've been labeled crazy, hypochondriachal loons just trying to get another label when we really have a PROBLEM.

And if all it takes is cutting out gluten, I don't CARE if I begged the doctor for the wrong diagnosis, I won't go back. I have a life. It's been years, but I finally have a life. I'm thankful for every second of it now. I'm gluten free by choice.

Shalia

[Matilda]

Deleted double post

[AndreaB]

Shalia,

I'm sorry you had to go through all of that. I'm glad you found this forum, it's great! I'm also glad that you are doing so much better.

Floridian,

Very well put. Please don't put yourself down, you are a great contribution to this forum.

[Shalia]

Shalia,

I'm sorry you had to go through all of that. I'm glad you found this forum, it's great! I'm also glad that you are doing so much better.

Thanks, Andrea.

I enjoy reading here, I learn a lot.

Shalia

[jcc]

Cara, do you know the reason why low-normal isn't considered good enough? Also, my neurological symptoms coincide closely with glutening - at least twitches, numbness and tingling get worse when I have diarrhoea. It's too fast for me to think it's nutritional. Do you have an explanation for that?

Hi Matilda,

All lab ranges vary a bit, but typically lows are set around 150, when there is evidence that some people begin experiencing neurological and other deficiency symptoms with levels in the 200-300's. Rarely, B12 deficiency can be present with levels 400 and higher, for reasons too complicated for me to address here (or really understand myself). Again, this is in the literature and has been for some time. Some labs here in the US have started footnoting that low normal levels may indicate a problem in a symptomatic patient. In Japan, they use a cut off of 500, or so I hear from my most reliable source. Because a B12 deficiency can cause so much damage, and because treatment is safe, the recommendations is treatment in questionable cases. Why they don't raise the lower range limit.... I don't know!

Other tests that can better determine a B12 deficiency at the tissue level are:

Methylmalonic acid

Homocysteine

An elevation in either can indicate a B12 deficiency despite normal B12 levels, although these tests also may not be elevated~ despite a B12 deficiency. Are there any diagnostic tests without pitfalls?

Anyway, for 24 hours only , I have highlighted the pertinent references in red under The Experts Speak section. Open Original Shared Link

The AAFP and eMedicine online articles are both good.

As for your neuropathy symptoms worsening after gluten ingestion, both immunological and nutritional factors can cause neuropathy. I've known others who do notice symptoms upon gluten (sometimes casein) ingestion. And if I miss my B12 for more than a few days, I start to experience symptoms, too!

Floridian, I couldn't agree more. We are all different, and as there are many similarities that shine through, there are also variances. And you are right again, that everything is a bit circular. As much as there are common associations, some may present before others, and different things present in different people. It is just important to keep on truckin' (wow...am I showing MY age) until we are finally well~ keep trying to find the better doctors and other ways to help ourselves, and in the meantime manage what ails us the best that we can.

Cara

[Nancym]

In some ways, I think IMResident's story really unscores my frustration with doctoring these days. If someone is sick and passes all the usual tests then the automatic diagnosis is depression. So many unusual or difficult diagnosises are missed because of doctor's refusing to think of Zebras when they hear hoofbeats.

Strangely enough, for every disease except depression, you have to have bloodwork outside a range. But depression, no... we don't need stinkin' lab tests. We can tell within that 10 minute visit whether or not a patient is depressed.

You could just about replace most doctors (except for their mechanical services) with a computer program that works like this:

$patient_is_crazy = 5;  # Safe to assume they're all somewhat nuts

foreach $standard_bloodtest (@list_of_everyday_bloodtests)

{

	  if ($standard_bloodtest within lab_range)

	  {

			  $patient_is_crazy++;

	  }

	  else

	  {

			  $patient_is_crazy--;

	  }

}


if $patient_is_crazy > 0

	prescribe_antidepressants();

else

	diagnose_with_virus();	


renew_malpractice_insurance();

[Shalia]

LOL! That's funny Nancy.

[Jestgar]

A small thought on lab test ranges.

We do research using blood from normal volunteers whe have no symptoms of illness. For each person a CBC is sent to the lab to determine cell counts.

Almost every person's WBC count is at or under the low end of "normal". For a while the research nurse was calling everyone to report this "anomoly" until it occured to someone that the "normal" ranges were determined over time from people who came in to the doctors office because they were sick....

It makes me wonder if, for example, the range for B12 isn't off because most people that are tested are being tested because they feel that they might have a deficiency. So the whole range is shifted downward.

Kinda like grading on a curve in a class. If everyone is dumb, the highest scorer still isn't that smart.

[mle-ii]

A small thought on lab test ranges.

We do research using blood from normal volunteers whe have no symptoms of illness. For each person a CBC is sent to the lab to determine cell counts.

Almost every person's WBC count is at or under the low end of "normal". For a while the research nurse was calling everyone to report this "anomoly" until it occured to someone that the "normal" ranges were determined over time from people who came in to the doctors office because they were sick....

It makes me wonder if, for example, the range for B12 isn't off because most people that are tested are being tested because they feel that they might have a deficiency. So the whole range is shifted downward.

Kinda like grading on a curve in a class. If everyone is dumb, the highest scorer still isn't that smart.

Exactly, who knows what ranges are really valid. I was thinking about another example of this the other day when looking at calorie formulas. Who's to say that someday down the road we find out that gluten or some other food pathogen causes malabsorption in the majority of folks, so those numbers for calories (or some other measurement) are higher that what would be required if one were to not eat gluten. I'm not saying this is the case, but more of a what if. The same as with B12.

One other problem with measuring vitamin/mineral levels in the blood is that the body does a pretty good job of making sure that it gets what it needs. Calcium being top on the list. So you measure calcium in the blood and it's fine and dandy, but the problem is that the body gets calcium from the bones if it doesn't absorb it via the GI. So all the while your bones are being absorbed by your body and your calcium levels in the blood are always measuring correct. I wonder what other measurements might be like this.

Mike

[mle-ii]

And here's some further evidence for problems of blood testing for Celiac:

Immunoglobulin A autoantibodies against transglutaminase 2 in the small intestinal mucosa predict forthcoming coeliac disease.

Open Original Shared Link

AIM: To investigate whether determination of intestinal transglutaminase 2-targeted autoantibody deposits would detect early developing coeliac disease better than previous methods.

CONCLUSIONS: Endomysial antibodies with normal histology indicates early developing coeliac disease. Transglutaminase 2-targeted intestinal autoantibody deposits proved the best predictor of subsequent coeliac disease.

Endomysial antibody-negative coeliac disease: clinical characteristics and intestinal autoantibody deposits.

Open Original Shared Link

CONCLUSIONS: Negative serum EmA might be associated with advanced coeliac disease. TG2-targeted autoantibodies were deposited in the small bowel mucosa even when absent in serum. This finding can be utilized in the diagnosis of seronegative coeliac disease when the histology is equivocal. It also seems to be helpful in differential diagnosis between autoimmune enteropathy and coeliac disease.

And just for kicks:

Small-bowel mucosal transglutaminase 2-specific IgA deposits in coeliac disease without villous atrophy: a prospective and randomized clinical study.

Open Original Shared Link

CONCLUSIONS: Clinically pertinent coeliac disease exists despite normal small-bowel mucosal villous architecture. Mucosal transglutaminase 2-specific IgA deposits can be utilized in detecting such patients with genetic gluten intolerance.

What was that again??? No "gold standard" positive biopsy but we have Celiac Disease. Perhaps I'm mistaken and someone could correct me.

Thanks,

Mike

[IMResident]

Strangely enough, for every disease except depression, you have to have bloodwork outside a range. But depression, no... we don't need stinkin' lab tests. We can tell within that 10 minute visit whether or not a patient is depressed.

You don't need lab tests to diagnose depression because it's not a disease caused by physical factors. OR I should rather say it's caused by both a combination of neurochemical and psychological factors. The psychological part of depression is just as important and many times depression is just caused by psychological factors. For example most depressed patients tell themselves that they'll fail at a task, before they even try, while most non-depressed people don't think like this. This is just one example. Loss of a relative/childhood abuse can also cause depression later in life.

>In some ways, I think IMResident's story really unscores my frustration with doctoring these days. If >someone is sick and passes all the usual tests then the automatic diagnosis is depression. So many >unusual or difficult diagnosises are missed because of doctor's refusing to think of Zebras when they hear >hoofbeats.

But the overwhelming majority of people who are identified by doctors as depressed or anxious are helped by antidepressants or therapy. Yes, some people are also misdiagnosed, for example you could have someone with depression as the ONLY presenting symptom of celiac, but this is rare. There aren't many physical diseases that produce depression, only a couple come to mind: Cushing syndrome, Addison disease, hypothyroidism, brain tumors, anemias, interferon therapy, celiac disease, hyper/hypoparathyroidism, kidney disease, and vitamin deficiencies (the last one only in the setting of malnutrition or inadaquate diet as in anorexia). All of these can be detected using standard blood tests, while malnutrition is rare and has other charatheristic signs. Most of the time depression is just depression without a physical cause.

[mle-ii]

You don't need lab tests to diagnose depression because it's not a disease caused by physical factors. OR I should rather say it's caused by both a combination of neurochemical and psychological factors. The psychological part of depression is just as important and many times depression is just caused by psychological factors. For example most depressed patients tell themselves that they'll fail at a task, before they even try, while most non-depressed people don't think like this. This is just one example. Loss of a relative/childhood abuse can also cause depression later in life.

So which is it? Chicken or the egg? Am I sick because I'm depressed or am I depressed because I'm sick? How about admitting that both are valid reasons. Not in in all cases are both the case, but you can have one without the other. I'm not pulling this out of thin air, just do a pubmed search on sugar malabsorption and depression for example.

I DO however agree that the phychological aspect of this needs to be addressed.

But the overwhelming majority of people who are identified by doctors as depressed or anxious are helped by antidepressants or therapy. Yes, some people are also misdiagnosed, for example you could have someone with depression as the ONLY presenting symptom of celiac, but this is rare. There aren't many physical diseases that produce depression, only a couple come to mind: Cushing syndrome, Addison disease, hypothyroidism, brain tumors, anemias, interferon therapy, celiac disease, hyper/hypoparathyroidism, kidney disease, and vitamin deficiencies (the last one only in the setting of malnutrition or inadaquate diet as in anorexia). All of these can be detected using standard blood tests, while malnutrition is rare and has other charatheristic signs. Most of the time depression is just depression without a physical cause.

In fact this is where I will again disagree. Especially with this:

But the overwhelming majority of people who are identified by doctors as depressed or anxious are helped by antidepressants or therapy.

The numbers indicate otherwise, the numbers point more towards therapy alone or therapy AND drugs, but not therapy OR drugs. Drugs only cover up a symptom. Without finding the cause you are just asking for trouble. That cause could be chemical or could be phychological or both.

Given that we're on a website where the majority of folks do have malabsorption issues, it is no longer rare. Given that folks who have malabsorption issues and have relatives who might have the same it is no longer rare. We're talking about a subset of folks here.

And given that sugar malabsorption and depression are linked, and given that there are a large number of folks who are lactose intollerant, who's to say that there aren't a good amount of these folks who are depressed because of a physical reason and not a mental reason?

Finally, standard blood tests would not pick up all physical reasons for depression. Let's see lactose intollerance isn't a standard blood test. Good luck finding a place that tests for fructose or other sugar malasorption issues. Small intestine bacterial overgrowth also causes sugar malabsorption, and tell me how often a SIBO test is done, definitly not a standard blood test.

In fact tell me what standard blood test would give me this information? I can't think of many. B12 maybe so long as it's not like calcium where it can look normal but is not. What else?

Mike

EDIT Oh, and prove this to me "Most of the time depression is just depression without a physical cause." I bet you can't. Especially given how little we really do know about the brain and body.