Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dr. Kenneth Fine (enterolab)


Joe G

Recommended Posts

Joe G Newbie

Almost a year ago, Dr. Fine was a major topic of this board, and a "group letter" was sent to him requesting information about his research. Has anyone (other than me) heard from him since that time?

Well, I have heard from him. He sent me an email announcing (a) a private catered open house and health lecture update at the newly expanded and renovated Enterolab facility, and (B) a celiac disease-release party and concert featuring himself and his band. More specifically, the event tales place Dec 4-5 in Dallas, and consists of (a) gluten-free hors d'oeuvres/open house and (B) an "update of research, publication submission, and a lecture titled 'The Higher truth of Health.' The next day (Dec 5) he offers, at the Lakewood Theater, (a) cocktails and cash bar, (B) a gluten-free healthy organic dinner ($25), © a concert featuring Dr. Fine and his band (wth dancing), and © and after party cash bar.

This invitation seems to say that Dr. Fine is announcing publication of his research, but it is alittle vague on this subect. Has anyone else received this invitation? Does anyone plan to attend? I live too far way or I would be there. Please let us know. Thanks.

Joe


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lisa Mentor
This invitation seems to say that Dr. Fine is announcing publication of his research, but it is alittle vague on this subect.

Yes, vague. It seems more like a promo for his band, rather than for his research.

JennyC Enthusiast

Wow. He sounds very "well off" to be able to afford such events. I bet he got that way by selling tests for unvalidated assays. That's just sad.

ravenwoodglass Mentor

Anyone who has used Enterolab likely got this invite. I would go if I could as it sounds like fun and I would be interested in hearing him speak on his research. The only difference between this invite and the ones I get from folks like the GIG is that his band is playing during the event. I am thankful for Dr. Fine and his tests. I just wish I knew he existed during the many, many years I was misdiagnosed. It would have saved myself and my family a lot of pain and wasted years.

homemaker Enthusiast
Anyone who has used Enterolab likely got this invite. I would go if I could as it sounds like fun and I would be interested in hearing him speak on his research. The only difference between this invite and the ones I get from folks like the GIG is that his band is playing during the event. I am thankful for Dr. Fine and his tests. I just wish I knew he existed during the many, many years I was misdiagnosed. It would have saved myself and my family a lot of pain and wasted years.

I agree...I never knew that enterolab existed until I was on this forum. My belief is that there is still SO many things not understood as of yet regarding gluten sensitivities and celiac, and I believe that the medical community has a LONG way to go when it comes to diagnosing these disorders. When I look at my own family history, filled with Celiac and their related diseases, I could just cry.

So I CHOOSE to use enterolab as just ONE tool in my own personal health and wellbeing, just as I use traditional medicine as a TOOL.

I own my own body, and I make choices regarding it, so I am VERY glad that enterolab offers the services that it does.

There are many physicians that do use enterolab and endorse them...One example is below....

homemaker Enthusiast
:huh: Dr. Vikki Peterson is a chiropractor.

I understand that she is a chiropractor...she is part of a medical team....under the supervision of MD's

Open Original Shared Link

homemaker Enthusiast

There are many schools of thinking regarding Celiac Disease and gluten sensitivity...

AND there are many patients that have been helped by more open minded physicians.

I believe that someday the medical profession will look back at how we diagnosed Celiac

and related disorders and will be in awe at how archaic we were....

I am not an MD, I am a patient...no more....I applaud Dr. Fine for thinking outside the box..


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



chiroptera Apprentice

If we all knew how the medical insurance industry works from a doctors viewpoint (esp HMO's) I think people would be less likely to criticize Dr. Fine. Does everyone really think their traditional doctor has their best interest in mind? Seriously..????? Most, but not all, do not. Think about all the terrible times people on these forums have had with doctors... the thing that bothers me the absolute most is doctors saying it's all in people's head. Esp the children!

Most people do not want to walk about very sick and are making it up.

Our family chose to use Enterolab and in our experience he is correct.

Lisa Mentor
. Does everyone really think their traditional doctor has their best interest in mind? Seriously..????? .

Yes, I do. If I did not, I would find another one who does.

If Enterolabs is your chosen avenue, I think that's great. For those of you with time, educate yourself and make the best informed choice for you and your family, whatever direction that may be.

My opinion is not set in concrete. I still am anxiously awaiting independent peer review of Dr. Fine's work, which has been promised for many years now. There are those who are strong supporters of Enterolabs and an equal amount of those who are not. I am not a supporter, but I try to respect those who are.

sixtytwo Apprentice

HOMEMAKER----I just looked at all of those bits on U-Tube. Thanks. I have never heard a more thorough explaination of gluten sensitivity before. RESULTS...........doesn't make a lot of difference if you are celiac or gluten sensitive, you must stay off the gluten totally. I am one that thought that if you are gluten sensitive, then you could have a little bit here and there. I have so many of the ailments that he was talking about like thyroid, headaches and he didn't mention it as fibromyalgia, but he did say muscle/joint aches and pains. All considerably better when I am gluten free. My stomach hurts today so I am wondering what I ate yesterday that caused it. Thought I was being really good. Again, thanks for the tip, everyone should watch those videos.

Barbara

TrillumHunter Enthusiast
:huh: Dr. Vikki Peterson is a chiropractor.

What's your point with this?

homemaker Enthusiast
I don't go to a gastoenterolosist for a backache and I don't go to a chiropractor for a belly ache.

Chiropractors have NO business diagnosing celiac disease. They can't do a small bowel biopsy to make a proper diagnosis. They might have you do a spit test or something and tell you never to eat gluten again. But that isn't a diagnosis of anything at all. It's just a twist of Kenneth Fine's angle. And Yes, I am entitled to my opinion. ;)

If you all want to narrow your worlds based on what someone like Vikki Peterson tells you, that is just fine with me. You are adults. Please make sure your children have a proper diagnosis as they have no choice in the matter. I consider it abuse to deprive a child of gluten if they don't absoutely need to be gluten-free. By that, I mean biopsy diagnosed celiac. True villi damage!

You are entitled to your opinion....

wildwood Apprentice
I don't go to a gastoenterolosist for a backache and I don't go to a chiropractor for a belly ache.

Chiropractors have NO business diagnosing celiac disease. They can't do a small bowel biopsy to make a proper diagnosis. They might have you do a spit test or something and tell you never to eat gluten again. But that isn't a diagnosis of anything at all. It's just a twist of Kenneth Fine's angle. And Yes, I am entitled to my opinion. ;)

If you all want to narrow your worlds based on what someone like Vikki Peterson tells you, that is just fine with me. You are adults. Please make sure your children have a proper diagnosis as they have no choice in the matter. I consider it abuse to deprive a child of gluten if they don't absoutely need to be gluten-free. By that, I mean biopsy diagnosed celiac. True villi damage!

How do you explain those diagnosed celiacs like my daughter that have no villi damage? (she had two biopsies) If we went by villi damage and assumed because the negative biopsies meant gluten was not a problem she would still be suffering from chest pain, abdominal pain, constipation, rashes, and tingling in her limbs and the list goes on. She is 100% better gluten free. If she gets glutened she has severe stomach pain and is out of commission for a day or two. Her stomach became more sensitive to gluten once she was off of it. I do not know enough about Dr. Fine or Vikki Peterson to comment of them, but I just felt the need to point out that as much as some feel endoscopy and villi damage is the "gold standard", there are many that do not exhibit villi damage at least not right away.

wildwood Apprentice
Your daughter is legally an adult. She had a very positive ttg. Everything was done by the book. I also feel she does have a proper diagnosis. I do understand the damage is spotty. I just don't believe in making a minor child gluten-free unless there is overwhelming evidence of celiac disease.

I respectfully disagree.

homemaker Enthusiast

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...

JennyC Enthusiast
Please make sure your children have a proper diagnosis as they have no choice in the matter. I consider it abuse to deprive a child of gluten if they don't absoutely need to be gluten-free. By that, I mean biopsy diagnosed celiac. True villi damage!

I feel absolutely no obligation to attempt to validate my son's diagnosis to you, or really even to educate you regarding celiac disease, but you may want to look up latent celiac disease. Ignorance is not always bliss.

TrillumHunter Enthusiast
I consider it abuse to deprive a child of gluten if they don't absoutely need to be gluten-free. By that, I mean biopsy diagnosed celiac. True villi damage!

Thankfully, that is just an opinion. Otherwise, my daughter with a ttg less than five points from the cutoff would have continued to eat poison for "just another year." Instead we chose to make a simple dietary change that transformed her world.

The process of biopsy is flawed. Do you realize how sick some people are before they are able to find the damage?

It sounds as though you find the diet especially difficult. Perhaps if you being on this board will help you to find ways to better cope.

We do have many non-traditionally and self-diagnosed folks on this board. Please respect them.

sixtytwo Apprentice

SPRUSTER....you sound very rigid. I went to the site that Homemaker suggested and listened to all six of the parts of what he had on there and he is very knowlegable and right on the mark. In fact it made me realize that although I do not have full blown celiac, that I should still be eating gluten-free all the time and not cheating at all, due to all the other things that happen to a person when they eat gluten if they are sensitive. Sensitive covers a lot of territory and NOT celiac, which is just the tip of the iceberg. I had a lot of the complications that the doctor mentioned on there and the shoe fits. Thanks again to Homemaker for sharing.

Barbara

TrillumHunter Enthusiast

Funny, nobody has missed a party yet in my house.

Are you missing birthday parties and social occasions?

I will continue to make decisions for my kids without apology regardless of the difficulty involved.

Celiac is more than a GI disease.

psawyer Proficient

Spruster, I think you have made your point. You have more posts in this thread than any other contributor, yet your recent ones are just repeating the same point. If you have anything new to add, please do, otherwise let's move on.

still tiredofdoctors Rookie

Goodness . . .

Yes, there IS a difference between gluten sensitivity and Celiac disease.

I was gluten sensitive for many years -- diagnosed as "irritable bowel syndrome" and at one point, "ulcerative colitis". It wasn't until I encountered a tick that decided I looked somewhat like a delicacy and developed Lyme and three other tick-borne diseases that I subsequently began developing autoimmune diseases.

I have a rather long list of them, but in the process of all of this, I sero-converted from "gluten sensitivity" to true Celiac Disease. My intestinal villi? Very healthy.

I have Neurogenic Celiac. There is one protein on the Purkinje cell of the cerebellum that so strongly mimics gliadin that when your antigliadin antibodies are high - and you have sero-converted - it destroys those proteins. In the process, it also destroys your cerebellum's ability to maintain smooth transmission.

It is also known as "Sprue-Related Ataxia" and "Neurological Celiac Disease" among others.

Bottom line? I walk like a stumbling drunk. (Your cerebellum is what is affected most when you consume too much alcohol) I use a wheelchair for long outings, and I have a specially designed, weighted walker that I have just been able to get in order to try to walk without falling as much.

The damage is permanent. No healing, no second chance.

My son has developed two unusual autonomic manifestations recently. One is affecting his gut's inability to initiate peristalsis. Both are due to parasympathetic nervous system dysfunction -- routed through the cerebellum. He is 27 years old. He lives in Houston, TX. Because he disclosed my neurogenic celiac, he is having a full panel done. The MD understands that Celiac can manifest itself solely with neurological symptoms.

My granddaughter is 14 months old and is very sensitive to many things. At this point, my daughter is keeping her on a gluten-restricted, but not gluten-free diet. She is actually doing more "challenges" to determine if gluten is one of the causes of the difficulty. If she finds that is the case, my daughter's family will live a gluten-free lifestyle and she will ensure that Sarah not consume gluten.

If I knew then what I know now, the very minute that the neurologist said that I may have "Sprue-Related Ataxia", I would have gone on a strict gluten-free diet. Unfortunately, I waited almost eight months. The damage that was done to my cerebellum in that time, as I stated, is irreversible. You can see the changes chronologically when you look at my MRI studies. Then again, hindsight is 20/20.

Enterolab or no, if your body has a negative reaction to gluten -- even with challenges -- it is trying to tell you something extremely important. I wish I had listened.

homemaker Enthusiast

We all have differences regarding how celiac and related disorders be diagnosed, but you know folks? I guess we can all agree on this...

If gluten causes ya trouble .... you shouldn't be eat'in it! :P

Peace and Truce ....

(((((((((Hugs to all my gluten-free"ers))))))))))

ravenwoodglass Mentor
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.

And if the child happens to be a false negative on testing that you seem to think is the be all and end all of diagnosis you can watch your child fall farther and farther behind on the growth charts until your 15 year old struggles with the humiliation of being thought constantly to be 10 and any chance of a normal social life and dating is out of the question, or you can watch your child struggle and fall constantly and just assume they are for some reason unusually clumsy, you can listen helplessly while you child crys because his leg bones hurt so bad he can't sleep but nothing can be done because it is 'growing pains', or you can visit you child in the mental hospital after they try to commit suicide becase the gluten is attacking their brain and the child is clinically depressed or you can bring that yummy pizza into your childs special ed class because for some reason he can't retain the info that others his age are able to absorb easily because of 'brain fog' or you can do as one doctor suggested to my celiac daughter and let them keep eating gluten until their villi are totally destroyed instead of just blunted and the doctor will then diagnose and during that time you can wake up repeatedly and pick that child up off the bathroom floor where they are curled up in pain after having D and vomiting for hours.... I could go on as these what if's are all part of my families history for both my children and myself but.....

If there is one disease where 'rigid thinking' does not belong it is celiac or gluten intolerance.

chiroptera Apprentice

:o Child abuse because you don't let you child eat gluten???? WTH??????? :huh:

I consider it abuse to let them eat something that makes them so sick they cry and vomit and miss school and hold their tummy and beg to feel better...............

Well, I suppose I should just stuff 'em all with MSG, artificial colours and dyes, etc. too. That would certainly be the best.

WOW!!!!!!!

JennyC Enthusiast
I suppose we can all agree to disagree. I'm hardly ignorant. Don't go there!

Someday, your kids will want proof. They will miss a lot! Birthday parties,school parties, pizza after the football games and so many more social activities as well. 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.

The combination of biopsy and blood tests are at present the best way to ensure a proper diagnosis. Testing isn't perfect. The majority of celiac cases will be found with this combination.

As for you adults who decide on the gluten-free life, Of course I respect your decision! :) You have made that choice of your own free will. No one made it for you.

"The majority of celiac cases will be found with this combination [biopsy and blood tests]."

Well I suppose that depends on how you define diagnosed celiac. You likely define diagnosed celiac as villous atrophy, hence this statement is biased.

In regards to your other statement, my son has proof. He had all the classic celiac symptoms: falling off the growth charts, watery D three times a day that he struggled to control, bloating, pain, paleness, lack of appetite. He had a very positive IgA tTG (three times higher than the upper reference range). We went gluten free at the the recommendation of the pediatrician that ordered the tests, before we saw the pediatric gastroenterologist. The gastroenterologist held the same opinions you do. He was old, and it's hard to teach old doctors new tricks. In the time it took to get in to see him, all my son's symptoms disappeared and he was doing fantastic. Now it's three years later, and he's doing great. He also has a world class pediatric gastroenterologist from a renounced children's hospital monitoring his CELIAC DISEASE. I have no regrets. He has celiac. We have proof. Oh, and considering my genotype, he has at least one copy of the HLA-DQ genes associated with the development of celiac. It would be child abuse to put him back on gluten at this point.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748

    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.