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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,955
    • Most Online (within 30 mins)
      7,748
    AnnaLousGFBakery
    Newest Member
    AnnaLousGFBakery
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.