Finally Feeling Like A Break Thru...

[Llamamama]

This is my first post and I have no idea where it should go. This will be long, but I want to share the whole story.

My stomach has hurt for as long as I can remember. My mom was single, I was latchkey at 3.. I ate what I could reach. Lots a sandwiches, microwavable things, fast-food. At 6 my grandparents brought me to Houston children's hospital and paid for days of tests out of pocket. Id spend hours rocking on hands and knees from the gas. Horrible constipation. I had enemas and transit markers, seats, cts.. Yadda yadda.. Her colon is full, but besides that...oh, her parents just divorced? Sometimes kids do this to get attention...maybe take her to therapy?

Age 11, I pass out in a mall from holding back the urge to go (it had likely been weeks).. The xray shows a "man sized colon" but nada else so they took out my appendix and tell my parents btw, I'm overweight. So I'm put on a restrictive very messed up diet..

Enter years of anorexia and binge eating. Loved loved loved wheat and dairy. Or large meals of starches.. Fried rice, plate of pasta, sub sandwich...chocolate cake.. Paired with modern medicine's rabbit hole of birth control, antibiotics, painkillers, NSAIDs, etc... And you get..

3 laproscopies looking at you left ovary (it was my colon, duh)

An abdomen full of adhesions

80lbs of excess weight

But then I became an adult.

I stopped going to the Drs.. Started eating "better". Whole grains.. Lots and lots of grains.. But super "healthy".. And I lost weight, and hair and probably bone mass...I totally fried my digestive system..then enter two pregnancies. Such incredibly dangerous times for un dxed celiacs. Your immune system is naturally suppressed.. But the damage I was doing! To myself and my kids! The genes were activated.. Your immune system learns alot in utero. It was actually my 2nd baby's colic that finally distilled for me that I was reacting to everything. Id had yellow diaharreah alternating with constipation for years, a bloated painful stomach, skin reactions(non biopsied dh, hives, eczema,yeast, exhaustion, ataxia...I broke three bones in my feet in 2 months, my balance was off. I was scared i had ms. I went to naturopaths.. Did elim diets, candida supplements..went to gastro ( declined more scopes and exploratory missions).. Got sicker. Finally, I decided it was enough and I had to do something.

Anyway..I thought I went gluten-free at various times and never really felt that much better. I believe now it was because I just subbed other high starch food sources to the bacterial overgrowth occurring in my gut from years of undxed celiac. Biofilm are quorum sensing and therefore highly adaptable. Enter leaky gut, candida, biofilms, dysbiosis.

So, I tried to starve it all out first. Grain free, low sugar.. Fodmaps diet with no starches, dairy, grains, etc

And I started feeling better. I had such rapid weightloss from losing the inflammation that the allergens and bacterial overgrowth were causing I started counting calories to make sure I was eating enough. But I was. 1700-2200 a day. Awesome. But the severe limiting of my diet (at this point I'd narrowed it down to - wheat and dairy as primary allergies/ intolerances.. Starches, sugar, onions and garlic also produced reactions likely because they were feeding the bad stuff) did not feel sustainable and all the meat, even with digestive enzymes, was overwhelming my system. I needed more fiber and greater variety. By now I was dealing with constipation predominantly with episodes of yellowish bile salt d when I'd indulge in something starch or sugar rich. I kept the food journals but the reactions just weren't making sense. It was frustrating. I was tired of working so hard at it and seeing so little improvement in 9 months. I owned restaurants but I was so sick of obsessing over food and having to make everything I put in my mouth!

So, I kinda went on strike. I slowed my eating and all he'll broke lose. All those lingering bacteria needed every stitch of food.. Making drier more compact stool.. I was taking shiploads of probiotics, but from what I understand now, very little colon specific ones. I had healed alot of my upper intestines. The damage from celiac.. But now I needed to deal with the ileum and colon.

Plan of attack was to continue a low carb diet, but introduce more of a paleo slant.. More grok foods.., less red meat tho.. Because my body just can't digest it well still, even with enzymes..

I chose to do a series of 3 colonics to get a jump start on reducing the bacterial numbers in my colon and hit the right probiotics.. I think we are going to find that some of these mass marketed multistrain probiotics aren't necessarily good for us. More living probiotic foods. Raw kraut with every meal, water kefir, bifido 80 bill probiotics, 30 bill acidopholius. I highly recommend the colonics. I thought about them for years but they single handedly have had the largest impact in giving my that jump start to repopulate with good bacteria

Plus an antibacterial/anti fungal protocol.

Candidaclear, candex, proteolytic enzymes, peppermint oil, gse

And supplements

A good liquid multi vitamin/mineral

Fish oil

Calm

L- glutamine

Digestive supplements with meals during healing

CHIA is so healing to my digestion.

WATER

I really have felt so much better the last month on this protocol and wanted to share. I put this here because ill never eat gluten again so they can do the scope an somedays I don't know if it was the celiac or the dysbiosis that came first.. But I feel the best I can ever remember. I still have my days.. This IS autoimmune.. But I really think the key for ME is gut flora and healthy diet and lifestyle.g

[MitziG]

Good for you for being your own dr! So many of us here can relate to your story- years and years of missed diagnosis and MISdiagnosis! It sounds like you are definitely on the right track, so don't give up!

[CanineGluten]

Try IF. Intermittent fasting. It seriosuly speeds healing.. and allows for more "error" .its good

[Bubba's Mom]

Congratulations on getting it all worked out! Many of us find that we need more than just gluten-free. Most Dr.s don't see it that way, and are useless in finding/treating the imbalance in gut flora. Working out what you need is difficult and takes time, trial, and experimentation. It's not a fast process.

I've gotten the Celiac DX, but going gluten-free I continued my weight loss and downward spiral. I had to cut out several other foods too. Finally, 2 additional scopes, 3 trips to Mayo Clinic, and lots of tests later I was told I "probably" have a severe bacterial overgrowth too.

I was given 2 rounds of Rifaxamin, followed by a round of Neomycin with no improvement. When I talked to the Dr.s office via phone and said the antibiotics didn't make a bit of difference, other than I have a headache all the time now, I was told to stop taking them. The original plan was to keep me on various ones, on a rotation, but I was told to stop taking them..with no other treatment mentioned. I guess I'm on my own again?

I foolishly stopped taking my probiotics while on the antibiotics thinking they would just be killed off with the med anytway. Now I'm back to trying to rebuild my system all over again.

When I questioned if intestinal yeast should be treated, because I seem to have a problem with recurring "female" yeast problems, the idea was dismissed. It seems every Dr. I've mentioned it to, seems to think that yeast in the digestive tract just doesn't happen?

Your story is encouraging. I hope one day I can write a similar post about my triumph over the debilitation that Celiac/gut dysbiosis cause.

[IrishHeart]

It is wonderful that you have found what works for you.

But I have to add that colonics, cleansings and fasting are CONTRAINDICATED in celiacs who are already malnourished from long UnDXed Celiac.

The gastrointestinal lining is already damaged and inflamed.

People with certain conditions, such as celiac, diverticular disease, ulcerative colitis, Crohn's disease, severe hemorrhoids, blood vessel disease, congestive heart failure, heart disease, severe anemia, abdominal hernia, gastrointestinal cancer, recent colon surgery, and intestinal tumors should not have a colonic.

Pregnant women should not have a colonic as it may stimulate uterine contractions.

Although infrequent, complications may include perforation of the abdominal wall, electrolyte imbalance, and heart failure caused by excessive absorption of water.