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

Recommended Posts

Spunky007 Apprentice

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

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
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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      12

      Related issues

    4. - Known1 replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,456
    • Most Online (within 30 mins)
      7,748

    MBelknap
    Newest Member
    MBelknap
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I take Niacin, bilberry, Omega threes, zinc, selenium, and Vitamins C and A for eye health, skin health and digestive tract health.  The skin, digestive system and eyes are all derived from basically the same sort of cells.  Niacin is extremely important to keeping these tissues healthy.    Niacin has be shown to prevent cataracts and improve eye health.  Niacin is turned into tryptophan which is necessary to heal the digestive tract.  Tryptophan is used to make Serotonin, a very important neurotransmitter in mood regulation.  Those with Niacin insufficiency become irritable and easily upset, angry, even. Niacin improves skin health.  The flushing of Niacin opens the smallest blood vessels in the skin so that waste products can more easily be removed.  I have Dermatitis Herpetiformis.  Niacin helps drain away those built up antibodies in the blisters and improve skin health.   Bilberry contains lutein and zeaxanthin and other anthocyanins,  potent antioxidants that help protect the eyes from macular degeneration and cataracts.  Bilberry has sGLT1 and GLUT2 which help to lower glucose levels by removing excess glucose from the bloodstream.  High blood glucose levels are bad for eye health.   Omega Threes are important to provide relief in dry eyes.  You are familiar with how oil floats on water.  Same thing happens with eyes.  Omega threes provide the oily layer that protects water from evaporating from the eyes causing dry eyes.  Omega threes in olive oil, sunflower seed oil,  and flaxseed oils will help improve dry eyes. Vitamin A and Riboflavin B2 are important in this function as well.   None of the medications I was given improved my dry eyes.  I increased my Omega threes and Vitamin A, and had improvement very quickly. Selenium and zinc are important in skin and eye barrier functions, too, and are important to preventing infections. When I take 100 mg of Niacin every three hours (but not more than 500 mg/day), my skin and eye health improves.  If one is deficient in Niacin, the flushing effects may be uncomfortable, but ride it out, continue taking Niacin and the flushing goes away as niacin stores inside cells are repleted.  When flushing, don't scratch!  Use pressure applied over a bigger area above the itch.  I wrap up in a towel or blanket to create the counter pressure.  The flushing goes away the longer one takes Niacin.  Don't use Niacinamide (the non flushing form of Niacin).   Other vitamins that improve eye health are Vitamin E and Pyridoxine B6 and Thiamine B1.  Most Vitamin E sold is derived from wheat germ, so find another source of Vitamin E.  I used Evening Primrose oil, also a source of healthy Omega threes and helps with female problems like perimenopause  and menopause symptoms. Do be aware that antifungals and antibiotics (as are frequently prescribed) destroy Thiamine.  Immunosuppressive drugs can suppress production of tTg antibodies.  Supplementing with thiamine above the RDA is safe and nontoxic.  RDA were set as the lowest amount to prevent illness.  Optimal health is seen in higher amounts.   Do talk to your doctor and dietician about supplementing essential nutrients.   References: https://pubmed.ncbi.nlm.nih.gov/39183990/ https://pubmed.ncbi.nlm.nih.gov/41156490/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7602486/
    • Jmartes71
      Thankyou. I have cyclosporine 0.05% OP single use drops and Erythromycin ophth ointment 3.5 Gmail for eyes. Dermatologist gave Pimecrolimus cream 1% and Clobetasol Propoonate USP 0.05% it doesn't help at all.i do see a difference taking Yarrow Pom but its too expensive!
    • Wheatwacked
      I've added NAC, N-Acetyl Cysteine; "crucial for replenishing glutathione—the body's master antioxidant." I used Clear Eyes 1% NAC lubricating eye drops for several years until the FDA forced them off the market.  In 2015 I had cataracts in bofh eyes.  In 2019 my left eye was clear, right eye was improved.  They are back now.  I discovered new companies with the drops at higher NAC but went with 500 mg NAC capsules.  Spread the cheer 🤓. My impression so far is the NAC is doing good.  Best with meal.
    • Known1
      When the pizza was dropped off she told me it had a Udi's certified gluten-free crust.  Even so, I am trying to play things as safe as possible for at least the next 6-months.  With that said, I returned the two slices to my neighbor and asked her to thank her mom for the pizza.  😊  I will likely bump into my neighbor's mom sometime next week.  She shuttles my neighbor's son, a freshman, to and from high school.  As mentioned, she is very kind so I am sure she will understand.  Heck, at least it went back to her family members and not in the trash.
    • Jmartes71
×
×
  • 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.