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

Anyone Read This Book


confused

Recommended Posts

confused Community Regular

From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

I just wanted to know if anyone read this book, I am really interested in what he has to say about all of this.

So is it possible one day that they will inclute DQ! as a gene for celiac i have found many other articles of people with DQ1 who test positive celiac in blook work or biopsy.

What does eveyone else think?

paula


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



Celiac.com Sponsor (A8-M):



larry mac Enthusiast

deleted/lm

happygirl Collaborator
From "Gluten sensitivitiy as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

I just wanted to know if anyone read this book, I am really interested in what he has to say about all of this.

So is it possible one day that they will inclute DQ! as a gene for celiac i have found many other articles of people with DQ1 who test positive celiac in blook work or biopsy.

What does eveyone else think?

paula

Dr. H is one of the (if not THE) leading researcher in terms of gluten/neurological. His work is often cited by the other "big" Celiac researchers. There is evidence that there are gluten problems that don't cause GI damage, but instead 'damage' us neurologically (similar to how DH affects our skin).

Can you post the other articles you have found about DQ1 people? I would apprecaite it.

confused Community Regular
Your confused? I can't even understand the authors name, much less what you said. And what does Dairy Queen have to do with Celiac?

best reagrds, lm

Sorry i meant DQ1 gene, some of my keys on my keyboard are stuck.

I was just saying do u think that someday there will be more genes that show celiac besides dq2 and dq8,

paula

confused Community Regular
Dr. H is one of the (if not THE) leading researcher in terms of gluten/neurological. His work is often cited by the other "big" Celiac researchers. There is evidence that there are gluten problems that don't cause GI damage, but instead 'damage' us neurologically (similar to how DH affects our skin).

Can you post the other articles you have found about DQ1 people? I would apprecaite it.

I will go threw all my articles i have saved tommorow and post them.

So have you read a lot of his work?

paula

Nantzie Collaborator

This is actually not a book (that I know of anyway). It's an article in a medical journal, which you can usually look at a small excerpt of (an abstract) on www.pubmed.gov. Which is a neat site to look at if you're into medical stuff.

This one was published in the Journal of Neurology and Neurosurgery in May 2002. I was actually trying to look at this study a couple months ago on pubmed, but it's one of the ones they don't have an abstract for :rolleyes: .

DQ1 seems to be one of the most common non-celiac genes around here. So that study saying that DQ1 may make up 20% of people with celiac, but just with different symptoms, makes SOOO much sense doesn't it? I have two copies of DQ1, subtype 6. I had GI symptoms for 18 years, and neuro symptoms for about three years.

It's frustrating that a study that came out almost five years ago hasn't seeped into the knowledge of the medical community. But then again, many of them don't know much about what to look for in classic cases either.

I think that's why message boards like this one are so important. Without regular people exchanging information, we'd all be sunk. :blink:

Edited:

I just did a search and found this site, which is by one of our members I believe -

Open Original Shared Link

On there, she has a link to the full text article of the study you mentioned

Open Original Shared Link

Here's the main page of her site - Open Original Shared Link

Very informative. Lots of information. I had come across her page a long time ago, but lost the bookmark.

Nancy

confused Community Regular
This is actually not a book (that I know of anyway). It's an article in a medical journal, which you can usually look at a small excerpt of (an abstract) on www.pubmed.gov. Which is a neat site to look at if you're into medical stuff.

This one was published in the Journal of Neurology and Neurosurgery in May 2002. I was actually trying to look at this study a couple months ago on pubmed, but it's one of the ones they don't have an abstract for :rolleyes: .

DQ1 seems to be one of the most common non-celiac genes around here. So that study saying that DQ1 may make up 20% of people with celiac, but just with different symptoms, makes SOOO much sense doesn't it? I have two copies of DQ1, subtype 6. I had GI symptoms for 18 years, and neuro symptoms for about three years.

It's frustrating that a study that came out almost five years ago hasn't seeped into the knowledge of the medical community. But then again, many of them don't know much about what to look for in classic cases either.

I think that's why message boards like this one are so important. Without regular people exchanging information, we'd all be sunk. :blink:

Edited:

I just did a search and found this site, which is by one of our members I believe -

Open Original Shared Link

On there, she has a link to the full text article of the study you mentioned

Open Original Shared Link

Here's the main page of her site - Open Original Shared Link

Very informative. Lots of information. I had come across her page a long time ago, but lost the bookmark.

Nancy

Nancy thank you so much for all that information. I found it very informative. If you ever find any other articles will you let me know. I want to learn as much on the medical side as I can. I took lots of psychology classes, and how the brain works and so forth in college, and it always fascinated me. It is sad to say i dont remember much from the classes over 10 years ago, and i doubt we even talked about celiac disease anyway. I was going to call one of my old professors today, we still talk from time to time and see if he knows of any articles.'

paula


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,366
    • Most Online (within 30 mins)
      7,748

    caroljben
    Newest Member
    caroljben
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.