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Available Treatment?!?

Dwillis

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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...

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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.

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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

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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