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Dwillis

Available Treatment?!?

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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...

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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.

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

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

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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....

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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.

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

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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....

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^ 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. :<

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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.

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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.

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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

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