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Finally Feeling Like A Break Thru...


Llamamama

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Llamamama Newbie

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

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MitziG Enthusiast

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!

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CanineGluten Newbie

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

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Bubba's Mom Enthusiast

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.

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IrishHeart Veteran

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.

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. There have been many posts on this subject on the forum, it is interesting to read of your experiences. Although I've not had TMJ, except from time to time have had a bit of mild tension in my jaw, I have had issues with my trigeminal nerve.  I read that sometimes a damaged nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.   Thank you again for your input.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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