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

Pain


Crimson58

Recommended Posts

Crimson58 Newbie

I'm new here. I was diagnosed with Celiac (nontropical sprue) in 2008 after a colonoscopy. I have tried every bit of advice given by a gastroenterologist,not to mention my family doctor. Spent a small fortune on gluten free products in stores. Seems I can go for 4-6 weeks without any flareups,then it hits me again. The damn pain is unbearable. I am also prone to getting diverticulitis,so my doctor always has a CT done to rule out that,since the pain is similar in nature in the same areas. I was prescribed hydrocodone one time for the pain. It barely helped for about 2-3 hours,then it returned. Once it leaves,I'm good for a month or two.I can't deal with it anymore. Any suggestions here how to stop an attack.Is there something over the counter all natural I can buy? Is there even a surgery for this? I would do it in a heartbeat.TIA for any advice


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

peacequeen Newbie

I posted a comment on this by mistake, so I deleted it. I'm new here..so sorry!

Crimson58 Newbie

Honestly, my best, completely uneducated guess would be you are getting gluten contamination when things go bad. If that's the case, there's not much you can do to stop an attack except get really, really careful.

IF it's gluten? There's no surgery, nothing to do but make sure you avoid all gluten, although I have heard some people have some minor relief from daily doses of aloe vera juice after they get glutened, if they are prone to severe abdominal pain. Just for a week or so, if I recall right.

It didn't help completely, but it seemed to make the pain go away faster, in the people I know who recommended this to me. I have seen this stuff at health food stores and Whole Foods, in their supplements section.

Re: potential gluten - how many gluten-free products do you eat on a daily basis, would you say? Because they are not actually zero gluten, the small amounts of gluten in gluten-free products can sometimes add up, if you are eating enough of them, and you get glutened anyway, even though you are sticking to the diet.

Dropping the processed foods down to a minimum can help if this is an issue.

What other things do you do to help avoid gluten cross-contamination? What do you usually eat? If you give some details, I'm sure that some here can help point out any potential risk areas and maybe help you finally not have to go through this anymore.

Wishing you good luck!

shauna

I usually stay on a protein diet,mostly white meat chicken. Turkey,Ham,nothing fried of course. I do eat Gluten free bread,and cereal as well.My problem is,I work in the Gulf of Mexico,and don't see land for weeks.So,I have to take some items with me because once we are offshore,I have to eat what is available on the boat.But that is usually mostly chicken,pork,turkey. Also,I usually eat 3-4 small portions a day,as opposed to anything big due to colon issues. The gluten free items I buy,I would say I use only once daily,sometimes twice,then some days not at all. I just had a CT last week because I feared I might have diverticulitis again. I did not,it was the celiac. Swelling,vomiting,bloting,and immense abdominal pain. I will say though,it seems to attack more when I am home from my job than on the job,possibly due to eating more portions,I can't say. I was not even aware there was gluten in shampoos till I starting researching it more. At any rate,it renders me almost helpless until it passes,which is 24-48 hours on average. Thank you for your response.I'll be outa range for a while,but feel free to reply if you come up with any more possible solutions.Have a nice day!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,995
    • Most Online (within 30 mins)
      7,748

    Naner4
    Newest Member
    Naner4
    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

    • knitty kitty
      @sleuth, Has your son been checked for nutritional deficiencies?  All of those symptoms can be caused by malnutrition.  I had severe malnutrition that went unrecognized by my doctors.  Intense fatigue, brain fog, depression, anxiety, and gastrointestinal distress are symptoms of deficiencies in the eight essential B vitamins, especially Thiamine B1, which becomes low first because the demand is higher when we're sick.     Celiac Disease causes inflammation and damage of the intestinal lining which inhibits absorption of essential nutrients.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease.   Is your son taking any vitamin supplements?  Most supplements contain thiamine mononitrate which in not readily absorbed and utilized by the body.  Benfotiamine is a form of thiamine that is shown to promote intestinal healing.  Benfotiamine is available over the counter.  Benfotiamine is safe and nontoxic.   Is your son eating processed gluten-free foods?  Gluten-free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.   Is your son following a low histamine diet?  Histamine is released as part of the immune response to gluten and other foods high in histamine.  High levels of histamine in the brain can cause anxiety, insomnia, and depression.  The body needs the B vitamins to make the enzyme Diamine Oxidase (DAO) to break down and clear histamine.  DAO supplements are available over the counter.  Vitamin C helps clear histamine as well.  Some people find over the counter antihistamines helpful as well, but they're not for long term use.   Nicotine has antihistamine-like properties, but can also irritate the gut.  Tobacco, from which nicotine is derived, is a nightshade (like tomatoes, potatoes, peppers and eggplant).  Nightshades contain alkaloids which affect gastrointestinal permeability, causing leaky gut syndrome.  Nicotine can cause gastrointestinal irritation and alter for the worse the microbiome. Safer alternatives to Nicotine that have antihistamine properties include Lemon Balm (Sweet Melissa),  Passion Flower, Chamomile, and Bilberry.  They can be taken as supplements, extracts, or tea.  These will help with the anxiety, insomnia and depression in a much safer way. Oolong tea is also helpful.  Oolong tea contains the amino acid L-Theanine which helps the digestive tract heal.  (L -Theanine supplements are available over the counter, if not a tea drinker.)  Tryptophan, a form of Niacin B3, also helps calm digestive symptoms.  Another amino acid, L-Lysine, can help with anxiety and depression.  I've used these for years without problems.   What ways to cope have you tried in the past?
    • Scott Adams
      They are a sponsor here, and I did noticed a free shipping coupon: GFships
    • Scott Adams
      In general if it is labelled gluten-free then it should be ok for most celiacs, however, those who are super sensitive (which is most who have dermatitis herpetiformis) may want to eat only certified gluten-free items, which are supposed to test down to 10ppm (but don't always!).
    • Wheatwacked
      Have faith, you will survive. I get mine from Pipingrock.com.  500 capsules of 10,000 IU for $22.  That is almost two years worth for me.  250 caps 5000 IU for $6.69 if you only take 5,000 a day.  It's like half the price of Walmart.
    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
×
×
  • 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.