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

Available Treatment?!?

Dwillis

Recommended Posts

Dwillis Newbie
Dwillis
Posted

Hello from Michigan. I have been diagnosed now for about 5 years..2 out of 3 of children are also celiac..ages 5 and 7 my 7 year old is high functioning autistic.. I have found that it is incredibly hard to explain to little kids why they can't have mcdonalds hamburger like their older brother...

Any way that's me and I started this because u wanted to know what people out tree are using for treatment...or what ever..my 60 year old has it bad as well and I got it pretty good..just looking to share ideas and get some new ones...

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

Celiac.com Sponsor (A8-M):


eatmeat4good Enthusiast
eatmeat4good
Posted

Your older son might benefit from giving up gluten as well.

There is a lot of information on the internet about Gluten and Casein free diets for Autism.

You might consider trying this for your older son, then gluteny McDonalds wouldn't be an issue for any of you.

As far as treatment, there is no treatment other than maintaining a gluten free diet for life.

Many people take their entire household gluten free even if they don't have Celiac or Gluten Intolerance.

Dwillis Newbie
Dwillis
Posted
  • Author

Ok thank you but I'm asking is how people cope with the discomfort and pain..what mess are u using if any

Dwillis Newbie
Dwillis
Posted
  • Author

I mean medication sorry my spell check auto

GFinDC Veteran
GFinDC
Posted

Hi Pepto Bismol can help some if you are in the USA. Aspirin might help a little too.

Dwillis Newbie
Dwillis
Posted
  • Author

I will tell you what I've tried and what works for me...

I've tried pepto , Xanax , aspirin , Dramamine almost everything u can think of to get rid of the constant feeling of the need to go to the bathroom..also the nausea for me in the mornings is the worst..it almost keeps me in the bathroom..but thankfully I live in a medical marijuana state..I either smoke a little or eat a cookie and my nausea and discomfort are gone....

JoshB Apprentice
JoshB
Posted

Ibuprofen helps a lot with joint and eye pain for me. I've not found anything that affects the stomach. Not tried mmj but I don't think I could use anything that would slow me down. To busy at work.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted

Are you getting gluten in your diet inadvertantly that is keeping you feeling poorly?

Dwillis Newbie
Dwillis
Posted
  • Author

No I'm not getting gluten..what it is is that my stomach lining is messed up because my ciliacs i went undiaognosed until I was 25...so my stomach is permanently messed up...I don't smoke MMJ befor I go to work and there lots of strains and the ones I like are considered working meds...it gets up and go..that's a commen misnomer about MMJ..when you smoke or eat a cookie or brownie tour not assed out for hours...I am able to get rid of nausea and stomach problems and go clean my house or go out and play with my kids when they get home or what ever....

shadowicewolf Proficient
shadowicewolf
Posted

^ makes me wonder if you have other problems besides gluten.

Anywho, i'd cut the oldest off of McDs or if that can't be done let it be a treat that he isn't allowed to tell. :<

Sarah Alli Apprentice
Sarah Alli
Posted

I find tramadol helps a little for the pain. It's prescription, though and when I'm gluten free I don't generally need it. I'm not super sensitive.

I use triamcinolone acetonide ointment when my rashes flare up. It doesn't get rid of them but at least makes them itch less for a while. Your mileage may totally vary as I have not been diagnosed with DH. Just have rashes that appeared at the same time as the rest of my symptoms.

lucia Enthusiast
lucia
Posted

This is interesting, because I've needed treatment beyond a gluten-free diet too. It seems everyone doesn't. So what does that mean?

My physical health suddenly collapsed at age 38. By the time, I stopped eating gluten, I had gastritis which meant my stomach was oozing blood, neuropathy so bad it was painful to walk, and periods with cramps that kept me on the couch for a week. My issues did not clear up by themselves. I'm still working on them now, a year and a half later. I suspect that's true for more than a few of us.

I went to the Celiac center at Columbia (the best, right?), and they told me what's been said here: you just need to stop eating gluten. When my issues didn't resolve, they gave me every test they could think of. Nothing was positive. The doctor said, with a question in her voice, fibromyalgia? But it's not that, because I know what that feels like having dealt with it since my 20s. This is different.

I've turned to the SCD diet and to Chinese medicine. I have followed a strict diet of whole foods, after following the stages of the SCD diet for 9 months. I'm lucky that I can afford acupuncture. The Chinese doctor seems to understand what is going on with my body. She has treated me for digestive issues (long after I stopped having pain), reproductive issues, poor circulation, and immunity issues. My issues have resolved at the times she predicted, so I take that to mean the acupuncture is working (and it's not spontaneous healing).

I wonder about other people's experiences.

Dwillis Newbie
Dwillis
Posted
  • Author

Well I have to tell you that after all the medication (pills) I'm am significantly more comfortable and my quality of life is better that I'm not taking pills. I get that cramp in my stomach like have to poop. And it's a constant thing even when I don't have to. I spend most my time in the bathroom. With the MMJ that time is reduced. Although it's not a cure all it helps with chronic pain. And what not

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

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

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.