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Desperate To Sort This Out


Spunky007

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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.


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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

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      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
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