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Dr. Kenneth Fine (enterolab)

Joe G

By Joe G
in Doctors

Recommended Posts

sixtytwo Apprentice
sixtytwo
Posted

Gosh, there is a lot of good information in this thread. Everyone should go back and see the videos that Homemaker put on a link to. I think I learned more looking at and listening to that doctor than I have heard or read in the five years that I have been eating gluten-free. I have a granddaughter that is a diagnosed celiac for 10 years and I have the gene/via Enterolab. That along with the videos Homemaker has put up there for all to see, is enough for me. It has convinced me to eat totally, totally gluten-free forever and ever. By the way, I was 59 when we finally figured it out for me, never too late, and I sure have been healthier sinced then. Everyone would do well to listen up before it is too late.

Barbara

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Mtndog Collaborator
Mtndog
Posted

Since you have agreed to disagree, I suggest the topic move back to what it is supposed to be about- Dr Kenneth Fine and Enterolab. A member contacted me today and wanted to know the following info:

Back to Dr. Fine, have any of the signers of the "group letter" sent to him last winter read my note? (I was a signer) And can we reasonably expect him to publish his research--based on his words that I quoted from the email he sent me? Also, did other signers get the email? Am I the only one? Let me know please?

Thanks!

ENF Enthusiast
ENF
Posted

The best tests that Dr. Fine's company has are the genetic tests for Celiac and Gluten Sensitivity. If you don't have Celiac genes, it is impossible to get villi damage from gluten.

still tiredofdoctors Rookie
still tiredofdoctors
Posted

I can't remember which newscast aired this, but researchers have discovered ANOTHER gene that when tested showed significant implication of its contribution to Celiac. I'll have to do more research to find the journal citation. Wish me luck, because I am NOT the master of the internet that Beverly, Karen, Patti, Peter et al are!

From what I remember, they are trying now to determine whether it alone can predispose an individual to celiac or if it has to work in concert with one of the HLADQ genes . . .

mushroom Proficient
mushroom
Posted

From what I understand, in Europe there are more than one additional genes that are considered to be celiac genes but are not recognized as such in the U.S. Maybe only Europeans get celiac from these genes?? :P Nora would have answers for you on this, I would think.

ravenwoodglass Mentor
ravenwoodglass
Posted
From what I understand, in Europe there are more than one additional genes that are considered to be celiac genes but are not recognized as such in the U.S. Maybe only Europeans get celiac from these genes?? :P Nora would have answers for you on this, I would think.

There are actually 7 more genes that have been recognized as being associated with the development of celiac. It is about time the US got up on this but most doctors done realize it. It is also starting to be recognized that there are celiacs, folks with DH are a prime example, who don't get villi damage until very long into the disease process, if at all. I believe there has been a topic or two posted on this. I think Dr. Fine is far ahead of most of the doctors in the US in recognizing those other associated genes. I also hope he publishes soon, but would rather he publish later rather than sooner. The more info he collects the better in terms of research. I know I don't put much stock in research that is done on samples of only a few folks. His research could save a lot of folks from months of damage when their doctor, like mine, tells them they are diagnosed and to go gluten free and then the person gets sent to a GI who demands they do a challenge and destroy any healing that has aready been done so they can 'officially diagnose' by their criteria. Of course the ideal would be for the doctors here to adopt the mucosal challenge they use in other countries, bypassing the gut and the need for a challenge altogether. But from what I understand those tests are considered to be too sensitive here and show too many positives.

EJR Rookie
EJR
Posted
There are actually 7 more genes that have been recognized as being associated with the development of celiac. It is about time the US got up on this but most doctors done realize it. It is also starting to be recognized that there are celiacs, folks with DH are a prime example, who don't get villi damage until very long into the disease process, if at all. I believe there has been a topic or two posted on this. I think Dr. Fine is far ahead of most of the doctors in the US in recognizing those other associated genes. I also hope he publishes soon, but would rather he publish later rather than sooner. The more info he collects the better in terms of research. I know I don't put much stock in research that is done on samples of only a few folks. His research could save a lot of folks from months of damage when their doctor, like mine, tells them they are diagnosed and to go gluten free and then the person gets sent to a GI who demands they do a challenge and destroy any healing that has aready been done so they can 'officially diagnose' by their criteria. Of course the ideal would be for the doctors here to adopt the mucosal challenge they use in other countries, bypassing the gut and the need for a challenge altogether. But from what I understand those tests are considered to be too sensitive here and show too many positives.

Would you be able to provide a little more information about the 'mucosal challenge' that you refer to. Where is this being done? How does it work? Is there information regarding this kind of testing available?

I recently had testing done by Enterolab. I would very much appreciate your thoughts on them.

Thank you so much,

Emma

Before the testing I had been gluten free for almost 1 1/2 years (except for about 8 pieces of toast and 2 servings of pasta and possibly some cross contamination). I have been dairy free for about 4 years; also soy and egg free. Since gall bladder surgery in Dec. 07 have been unable to eat nuts and many other foods including wheat.

EnteroLab

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ENF Enthusiast
ENF
Posted

I tried to post a short video about Celiac Genes, by Dr. Alesio Fasano, but this site's system won't let me. It is not an advertisement.

ravenwoodglass Mentor
ravenwoodglass
Posted
Would you be able to provide a little more information about the 'mucosal challenge' that you refer to. Where is this being done? How does it work? Is there information regarding this kind of testing available?

Here is a link to a past post about the rectal and oral challenges.

https://www.celiac.com/gluten-free/index.ph...aded&start=

EJR Rookie
EJR
Posted
Here is a link to a past post about the rectal and oral challenges.

https://www.celiac.com/gluten-free/index.ph...aded&start=

Thank you so much for providing this. In my mind the rectal mucosal challenge studies seem to lend support to Dr. Fine's stool testing for gluten antibodies. Or am I pipe-dreaming?

Forgot to mention that I also received the invitation posted at the beginning of this thread.

If anyone would like to comment on the Enterolab results I recently received and posted I would appreciate it very much. I will be doing an hour telephone consult in the near future with Phyllis at Enterolab so may be able to get some answers to some of our concerns. Will let you know.

Emma

Lisa A Newbie
Lisa A
Posted
I do not think it is abusive to put a child on a gluten free diet without a diagnosis. A parent knows his or her child, and they are entitled to make decisions for that child....If the child improves, then what more proof would a parent need...

No parent wants to see their child in discomfort...

I have a degree in Child Development and Family Relations and I see no abuse in a gluten-free diet...

(Well sorry to revisit this but I had to put in my two cents worth).

I agree! If gluten-free is abuse, then what do you call it when you let your children eat junk food? Geez. What do you call real abuse? These words are chucked around too freely.

There seems strong evidence that both celiac disease and NCGS can be equally devastating to the body. Villi damage is not the be all and end all. I apparently do not have celiac disease but it takes about one crumb to make me ill for days. I run my life as if I have celiac because otherwise I spend my life sick. Incidentally I also have Hashimoto's, which was diagnosed 5 years before the gluten problem became obvious.

SO no, it's not just people with official gold standard celiac diagnosis who need to avoid gluten. And a parent can know what's best for their child, which may be a gluten-free diet without the celiac diagnosis.

Spruster seems to have disappeared from this forum entirely.

still tiredofdoctors Rookie
still tiredofdoctors
Posted

I had debated as to whether I was going to post this, but as a lot of people know -- I can't control my impulsive fingers!

Approximately 20 years ago, I had a friend whose two year-old was diagnosed with Celiac disease. It was confirmed with all three blood tests, endoscope and diet elimination.

With ALL OF THAT, the pediatrician diagnosed my FRIEND with Munchausen's by Proxy!

My friend was divorced, her husband would NOT recognize the pediatric GI's diagnosis, refused to adhere to the gluten-free diet and reported her to Child Protective Services. At one point, they took this child away from her and gave full custody to her father.

After much legal involvement -- and a LOT of money -- she was able to regain custody and her ex-husband then had to have supervised visitation because he endangered the health of the little girl.

We may -- or may not -- have come a long way since those days.

jerseyangel Proficient
jerseyangel
Posted
With ALL OF THAT, the pediatrician diagnosed my FRIEND with Munchausen's by Proxy!

Lynne, that is horrifying!

Lisa A Newbie
Lisa A
Posted

Yikes what a story. At least it worked out in the end.

We are a wheat-based culture and people sure do like their wheat. Anyone who goes against that is regarded with suspicion.

shayesmom Rookie
shayesmom
Posted
What are you going to provide them with? A solid diagnosis from a gastroenterologist or a spit test or even a fecal test. Do it right and you won't have anything to apologize for later on.

Last I checked, the University of Chicago Celiac Center was offering a

homemaker Enthusiast
homemaker
Posted
Last I checked, the University of Chicago Celiac Center was offering a

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    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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