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

My Rhuematologist Floored Me Today!


Nancym

Recommended Posts

Nancym Enthusiast

I just got a diagnosis of Anklosing Spondylitis and my rhuematologist mentioned he thought it was associated wtih leaky gut, which could be caused by celiac disease. I was so surprised because I didn't expect a "mainstream" doctor to acknowledge leaky gut syndrome. He says the drug sulfasalazine should help with that and my various joint pains.

I'm just really impressed with this guy!


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

Wow, that's amazing!

Nancym Enthusiast

This is a must read for anyone with food intolerances and arthritis!

Open Original Shared Link

jerseyangel Proficient

That is impressive, Nancy--he sounds like a 'keeper'! :D

debmidge Rising Star

My goodness!! There's still hope for the medical community!

teankerbell Apprentice

My Rheumatologist couldn't really specifically say that I have RA after my RA factor and inflammatory numbers started going down after several blood tests. But she said I have some sort of auto-immune problem for sure. And that was that. Couldn't really help me much more. But quite mysterous because why do I feel so bad and what is going on that is causing my blood tests to "kind of" point to RA, but not really.

But thanks to my step-daughter, Dani (who is on this site alot), got me to read Dangerous Grains and things started making sense.

I have been gluten-free for only 4 weeks now so I don't expect to see the symptoms go away for a while, but I am very hopeful. And my Internist has been supportive on my decision to go gluten-free based on the stool test as well as DH. He feels that test results are not always reliable and if you feel better going gluten-free, then you have your answer.

jerseyangel Proficient

You're Dani's stepmon? Danikali? I didn't know that. Dani is so sweet--we've been trading notes lately on our rice problems! I agree that if you feel better gluten-free, then that is the way to go. None of the Celiac tests are perfect, and as a person who was sick for 20 years before being diagnosed, I do believe that this leaves us open to autoimmune problems. I have read several books on the subject, including Dr. Green's new one, and I think Dangerious Grains is the absolute best! Best of luck :)


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



Celiac.com Sponsor (A8-M):



Nancym Enthusiast

My rhuemy is putting me on sulfasalazine which is an antibiotic and also helps with RA and ulcerative colitis and I think also crohn's disease. I suspect I have more going on with my intestines than just food intolerances because I am eating a very controlled, careful diet and still getting flare-ups.

Well, I really hope this works!

I did read it takes 1-3 months before it kicks in though.

teankerbell Apprentice
You're Dani's stepmon? Danikali? I didn't know that. Dani is so sweet--we've been trading notes lately on our rice problems! I agree that if you feel better gluten-free, then that is the way to go. None of the Celiac tests are perfect, and as a person who was sick for 20 years before being diagnosed, I do believe that this leaves us open to autoimmune problems. I have read several books on the subject, including Dr. Green's new one, and I think Dangerious Grains is the absolute best! Best of luck :)

Hi Patti,

What is the name of Dr, Green's newest book?

Yes, I am Dani s in DaniKali's step-mom. She has been really helpful with this whole gluten thing for me. I am no where as sick as she is with celiac disease. Right now we live about 1,000 miles away from each other but I hope she feels some sense of support from me on her difficult situation.

Good luck Patti! :-)

Laura

jerseyangel Proficient

Hi Laura--The name of the book is--Celiac Disease--A Hidden Epidemic. It just came out, I believe, the first week or so of March. It's great that you're a part of the group--hope you are doing well!

teankerbell Apprentice
Hi Laura--The name of the book is--Celiac Disease--A Hidden Epidemic. It just came out, I believe, the first week or so of March. It's great that you're a part of the group--hope you are doing well!

Thank you Patti for the information and thank you for the support. The message board has been so helpful to me!

I think I will try to get the book, soon and pass it on to my family. My parents feel that since they are symptom free, there is no concern. I told them that one of them passed the gene to me and (dad has had polups in the colon, mom skin cancer, arthritis) could be conected to some of their issues. So they brushed it off and said at their next check up they will mention it to their doctor. I tried to educate them a little on the testing but they aren't listening or really seem to care much that I have it.

Laura

jerseyangel Proficient

Unfortuantely, I got the same response from my family members. My sister, at least, told her daughters' ped. that their aunt was dx. with Celiac, but no one except my mom got tested. And even her doctor was not familiar with the correct panel of tests. She ended up going through her GI, but he did not give her the whole panel! She does not want to hear any more about it--as far as she's concerened, she dosen't have it, even though she has unexplained anemia, bruising, C, had 3 miscarriages, hair loss, and an autoimmune blood clotting disorder. The one test they did on her was neg. and she's sticking with it. Everybody else has no major symptoms, so they won't get tested either. Frusterating, but you can only say so much because they're all adults and you can't force them. :angry:

teankerbell Apprentice
Unfortuantely, I got the same response from my family members. My sister, at least, told her daughters' ped. that their aunt was dx. with Celiac, but no one except my mom got tested. And even her doctor was not familiar with the correct panel of tests. She ended up going through her GI, but he did not give her the whole panel! She does not want to hear any more about it--as far as she's concerened, she dosen't have it, even though she has unexplained anemia, bruising, C, had 3 miscarriages, hair loss, and an autoimmune blood clotting disorder. The one test they did on her was neg. and she's sticking with it. Everybody else has no major symptoms, so they won't get tested either. Frusterating, but you can only say so much because they're all adults and you can't force them. :angry:

Right, I feel I did my part to let them know and it is up to them now to decide what they want to do with the information. I can't wait till Easter to see how my mother will handle my food requirements. It will be the first major holiday for me. I have a contingency plan to bring my own stuff, if I find that my mom is getting too bent out of shape with the menu. Which she tends to get anyway. My mother-in-law is a different story - she is more accomodating than my mother.

But, my mother and I are like oil and water - on completely different planets on the majority of subjects and issues. (I have spent years trying to resolve) So I don't expect much support, empathy or much of anything.

I ordered the book from Amazon.

Thank you again!

jerseyangel Proficient

I'll bet we could have some interesting discussions about our mothers <_< . Anyway, I do understand. Glad you got the book! Enjoy the rest of the weekend :)

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.