Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

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

I mean medication sorry my spell check auto

GFinDC Veteran

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

Dwillis Newbie

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

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

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

Dwillis Newbie

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

^ 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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,159
    • Most Online (within 30 mins)
      7,748

    Laz
    Newest Member
    Laz
    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

    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
×
×
  • Create New...