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

Desperate To Sort This Out

Spunky007

By Spunky007
in Food Intolerance & Leaky Gut

Recommended Posts

Spunky007 Apprentice
Spunky007
Posted

Hi:

I don't even know where to begin to introduce myself, but I am desperate to figure out what is going on with me-and a solution-and I really need support.

I have had issues going to the bathroom for as long as I can remember, but as a child it was mostly just that I had to go all the time. During college it got worse to a point of constant discomfort, especially when eating. Since graduating I've developed a rectal prolapse and the problems and flareups have gotten much worse and more constant.

Additionally, I am quite underweight. This has held me back as an athlete and left me not only feeling disgusting [vanity] but also often labeled Anorexic or Bulemic. More importantly, while I have considerable good strength and energy [i am an athlete] for someone my size, I wonder how long I can last like this I am not medically healthy at such a low weight. Plus, this last year blood tests have shown I am now Anemic and have low blood counts.

I have gone on several weight gain diets over the years, but it usually takes 4000+ calories consistently for me to gain, something very hard to do when it causes so much grief. Nonetheless, i have fought to keep my intake at 3-4000 cals despite the distress--but at this point I feel like I'm just surviving as my condition gets worse and affects more and more of my life.

This past year I've tried several eliminations in case of Celiac's or other food intolerances, especially since so many of my "issues" are triggered when I eat. I know I have a problem with lactose and to some extent soy, but solely eliminating those two didn't help much. Playing around with different eliminations and "levels" of fiber intake and whatnot haven't helped at all as my flareups overall are completely random--something that settles ok one day will leave me with a worst episode the next.

Currently I am trying to completely rebuild my diet from ground zero. Ideally I'd live off of coffee, lactaid milk and cottage cheese--the only things I've found that actually help my gut. I can't be quite that extreme, so I'm settling for trying to get 3500 cals worth of those items + anything free of heavy spices, gluten, soy, or lactose, and also any fruits and veggies that have worsened things in the past.

I'm on my second day and so far it's about the same. I know it's been barely a chance, but I really want to do this right and I also could use support. I am not entirely sure how I'm going to go from here--I know i need to "test" one item at a time, but I wonder if I'll ever even get a normal working gut to start testing on!

I'm sorry about the long post, but if any of you have any advice or experiences to share I'd be so appreciative.

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

Celiac.com Sponsor (A8-M):


Spunky007 Apprentice
Spunky007
Posted
  • Author

I should also add that I had biopsies done that ruled out Celiac Sprue. And I am currently without insurance so can't receive additional testing. Someday I hope I can get that-but until then I have to do what I can on my own--one reason I am on here seeking suggestions besides the "see a doctor" [which didn't help much anyways the last few years with a couple Doc's].

pele Rookie
pele
Posted
I should also add that I had biopsies done that ruled out Celiac Sprue. And I am currently without insurance so can't receive additional testing. Someday I hope I can get that-but until then I have to do what I can on my own--one reason I am on here seeking suggestions besides the "see a doctor" [which didn't help much anyways the last few years with a couple Doc's].

Hi there,

First off, biopsies (and blood tests) do not rule out celiac sprue because they are notorioulsy insensitive, meaning there are high rates of false negatives. So you might have celiac disease, and even if you don't you might be gluten intolerant and/or lactose/casein intolerant. You may have gut damage that is exacerbated by an overload of unfriendly bacteria.

I would suggest eating only foods that are unprocessed and were part of the human diet in the pre-agriculture days. No grain, no sugar, no soy, no corn. Try the Specific Carbohydrate Diet and do the 5 day chicken-carrot soup intro.

breakingtheviciouscycle.info

Best wishes!

AliB Enthusiast
AliB
Posted

Yup, I'm with Pele there - you are absolutely completely and definitely NOT alone. There are thousands struggling with similar issues.

Many are discovering the Specific Carb Diet (SCD) and getting better. It is not a weight loss diet, it is a healing diet. There is plenty to eat - it just cuts out the foods that are contributing to the gut dysbiosis that is causing the health problems.

Have a look at the SCD thread on this section - on the current last page (62) Chaty has given the most fantastic little testimony of how well she is feeling after just 2 months on the SCD - if I could, I would put it at the top of all the forum sections for people to read before they post yet another story of their misery and plea for help........

bigapplekathleen Contributor
bigapplekathleen
Posted

I agree with the previous 2 replies, and would like to add that perhaps even the paleo diet might help. Check out the book 'THE PALEO DIET" by L. Cordain. There are some great websites, too. SCD might help you heal.

FYI: I was diagnosed as being wheat-intolerant by a French doctor after having repeated infections. She was right, and my celiac blood tests were positive. However, I do not carry the GENES for celiac, but have been seen by one of the top celiac docs in the world and he agrees with the diagnosis of gluten intolerance. BUt i know that I do TERRIBLY when I eat dairy or grains. Once in a while, I start to eat gluten-free baked goods, and then I usually end up getting sick (infections, etc).

good luck -

K

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,109
    • Most Online (within 30 mins)
      7,748
    Kathy001
    Newest Member
    Kathy001
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • RMJ
      need help understanding testing result for Naked Nutrition Creatine please

      By RMJ · Posted

      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      need help understanding testing result for Naked Nutrition Creatine please

      By TheDHhurts · Posted

      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      Insomnia help

      By cristiana · Posted

      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      nothing has changed

      By wellthatsfun · Posted

      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
×
×
  • 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.