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Still Having Problems :(


Lshetler

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Lshetler Rookie

At first I reduced gluten intake, but wasn't fully aware of the hidden sources. I noticed no difference, but when I went on a harsh elimination diet I noticed a huge change. I was in really bad shape, and at the time I couldn't even tolerate fruit. It's been almost a year now, and since then I've eliminated all gluten, dairy, corn, sucrose, nuts and seeds, garlic, red meat, legumes, and probably some other things that I'm forgetting. At first I was making good progress, and along the way there would be breakthroughs, like when I started taking HCL. For awhile I thought that I finally figured it out, but then I stop getting better.

I still have very bad malabsorption issues, and while I have far more energy than I had before, I'm still usually tired and a bit down. Not to mention the chronic, mild constipation and frequent mucus. I thought that I was able to tolerate fruit, but maybe I just got used to it again. Also, I've never eliminated carbs from my diet, and I have tons of rice everyday.

I'd like to think that there was a specialist that I could go to for definitive answers, but I don't think that's possible. That's why I'm posting here; you guys are extremely knowledgeable about this stuff. I'm basically looking at a diet consisting of lettuce, broccoli, chicken, fish, and water. I might try potatoes too? It might even be that my diet is fine, but my intestines just aren't healing. I would really like some advice or information on what I should do, and what foods I should eat. I'm also a bit concerned with the fact that my body doesn't produce any HCl, as I'm only 21 and should have plenty.

So yeah, any experiences or bits of information would be hugely appreciated. I'm going to make a strong commitment to my diet, and I really want to get it right.


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ShayFL Enthusiast

Check my siggy for my current diet.

I have been gluten-free since April....nearly 4 months. I have seen some improvements such as: Migraine relief, some scaly skin areas have finally healed, neuropathy is mildly improved, vertigo is mildly improved. My trips to the bathroom are greatly reduced.

BUT....I am not well yet. I did accidently gluten myself a few weeks ago and I had severe vertigo for 2 days and a lesser migraine a few days after that.

I have cut out soooooo many things that I am done cutting and have decided to focus on "healing" myself (the root of the problem) and just eating what I can for now.

Now I am on a probiotic made by Pure Encapsulations (no fillers or toxic stearates) and it is smooth sailing......The reflux is getting better already.

I am also taking a product called "Intestive" which is made by the SeaCure people. SeaCure is a pre-digested fish protein that is supposed to heal the gut...repair damage...and get rid of leaky gut.

I am taking PepZin GI which is a patented Zinc + Carnosine product that has been proven in Japan to heal the stomach lining.

I am taking probiotics (Lactobaccilus Sporogens) to crowd out any bad guys.

George's Aloe Juice.

Biotin 10 mg daily.

And I am 2 weeks into a parasite cleanse using Renew Life Paragon. No issues with it, but I did have 24 hours of liquid spew (TMI). I must have killed something.

ALSO GETTING RID OF ALL SUPPLEMENTS WITH TOXIC FILLERS: Silicon Dioxide, Magnesium Stearate, etc. I have found good replacements for all that had that junk in it except my Multi. Pure Encapsulations are great. ALL are gluten free and most are free of all common allergens including soy and corn. Only a few have soy and corn and they state that on the label if they do. No toxic fillers. Some of my supplements were already good. I also nixed the "rice flour" fillers too. I dont want to ingest rice everyday at every meal.

I actually feel pretty good lately.

Another thing I am doing to help me get better is that I am "getting out" more. For the past 5 years, I have only had one decent friend and she is always busy so I dont see her much. And then dinner parties with my Hubby's colleagues. It hasnt been enough. I work from home in a lonely art studio all day. Have been for 5 years and the isolation is unbearable now. So I put some ads on Craig's list and have already made a few new friends. Getting out and meeting new people for coffee. Just being an integrated human being again. Even if I dont feel great, I need to do this! And I am starting a book club to meet once a month. I need real friends in the real world. I believe it will be key to my healing.

I have NO family close by either and I am not a churchgoer. No woman is an island.

So this is my new healing routine. I will keep ya'll posted on my progress!!

Oh and I switched my iron supplements to Floradix (gluten-free) and Liver Tabs. The Solgar Gentle Iron was doing nothing for me.

But my Vitamin D is in normal range now.

feelingbetter Rookie

A few months ago I went to a workshop given by an MD who specializes in celiac disease. She herself is celiac. She told us that very few of her patients got better just going gluten free. She claimed that the ones who stuck to the Specific Carbohydrate Diet were the ones who got well.

I myself decided to go on the SCD after very little improvement after 2 mos gluten-free/cf. I have been on the SCD for 3 months and have had a very dramatic improvement.

I think the fact that you are eating tons of rice may be your problem.

gfp Enthusiast
A few months ago I went to a workshop given by an MD who specializes in celiac disease. She herself is celiac. She told us that very few of her patients got better just going gluten free. She claimed that the ones who stuck to the Specific Carbohydrate Diet were the ones who got well.

I myself decided to go on the SCD after very little improvement after 2 mos gluten-free/cf. I have been on the SCD for 3 months and have had a very dramatic improvement.

I think the fact that you are eating tons of rice may be your problem.

Not knocking the diet but it could also be a consequence of following something strict that eliminates CC as well?

I personally found food combining (a gluten-free Hay's diet) works for me and people who try say Atkins seem to also respond well but then Atkins is just a Hay's diet with no carbs ?? (In other words it is a Hay's diet by accident)..

I think all these approaches help and having something like the SCD to follow can make it easier./.

AliB Enthusiast

I keep seeing this. Some get better after the removal of gluten but there are many who don't. Often they just replace the high gluten-based carb diet with lots of high-carb non-gluten-based foods. The bacteria feeding on the stuff is not choosy. It doesn't care what the type of carb is as long as it is getting its fill.

That is why the SCD works. By removing the grains, starches and sugar, it removes the food source for the rogue bacteria. Once the gut is healed and the bacteria is under control and the gut is rebalanced then those foods, in moderation, can be returned to the diet, yes, even gluten.

Drugs - antibiotics, the Pill, NSAIDs, amongst many, all contribute to the imbalance. The imbalance then is exacerbated by the general high-carb, high-sugar 'Western' diet. we pop supplements like sweeties, further strengthening the nutrient chomping strains of rogue bacteria in our guts until the damage is so great our guts can hardly function.

Damage within the gut is not caused by gluten, but by rogue bacteria and/or parasites. The toxins given off by the bacteria can cause any amount of illness and disease both physical and mental. Those of us who are ill all suffer with different symptoms because we all have different vulnerabilities and different, but equally pathological, combinations of bacteria colonising our guts. The imbalance can start right from birth. If our parents have imbalanced flora then they will not have the right combination to pass on to us, and so it goes on.

The right combination of Bacteria in our guts is vitally important - without it we would die, unfortunately though, having the wrong combination is as bad as having none at all! 2,500 years ago, Hippocrates said 'all disease begins in the gut'. Way back then he was absolutely right - shame that was ignored and our knowledge hasn't progressed any further in the meantime!

boron Rookie

Celiac disease often goes with either lactose intolerance or fructose malabsorption. In the later, many (but noat all) fruits can't be tolerated, sometimes also vegetables like carrots, artichoke, asparagus, onions. Main culprit substances in these foods are fructose and sorbitol.

RiceGuy Collaborator
I keep seeing this. Some get better after the removal of gluten but there are many who don't. Often they just replace the high gluten-based carb diet with lots of high-carb non-gluten-based foods. The bacteria feeding on the stuff is not choosy. It doesn't care what the type of carb is as long as it is getting its fill.

That is why the SCD works. By removing the grains, starches and sugar, it removes the food source for the rogue bacteria. Once the gut is healed and the bacteria is under control and the gut is rebalanced then those foods, in moderation, can be returned to the diet, yes, even gluten.

Drugs - antibiotics, the Pill, NSAIDs, amongst many, all contribute to the imbalance. The imbalance then is exacerbated by the general high-carb, high-sugar 'Western' diet. we pop supplements like sweeties, further strengthening the nutrient chomping strains of rogue bacteria in our guts until the damage is so great our guts can hardly function.

Damage within the gut is not caused by gluten, but by rogue bacteria and/or parasites. The toxins given off by the bacteria can cause any amount of illness and disease both physical and mental. Those of us who are ill all suffer with different symptoms because we all have different vulnerabilities and different, but equally pathological, combinations of bacteria colonising our guts. The imbalance can start right from birth. If our parents have imbalanced flora then they will not have the right combination to pass on to us, and so it goes on.

The right combination of Bacteria in our guts is vitally important - without it we would die, unfortunately though, having the wrong combination is as bad as having none at all! 2,500 years ago, Hippocrates said 'all disease begins in the gut'. Way back then he was absolutely right - shame that was ignored and our knowledge hasn't progressed any further in the meantime!

It sounds like what you're talking about is intestinal yeast and/or bacterial overgrowth. We both know that many on this board have trouble in this area, and it is also true that the typical American diet is loaded with sugar - something which many don't seem to want to give up.

I know first hand how an intestinal yeast overgrowth can be truly debilitating. But even then, I didn't have to avoid complex carbs to get rid of it. That's not saying nobody would need to, but it apparently isn't always necessary. Sugar feeds bacteria/yeast directly, but as I understand it, carbs only make good food for them as our digestive enzymes break the carbs into simple sugars. So when there's malabsorption, perhaps the sugars hang around within the intestines longer than normal, feeding the beasties.

However, to suggest that gluten can be added back into the diet of a Celiac would be absolutely incorrect, so I hope you're not saying that. Rather, I hope you meant to suggest that there are some whom have concluded that gluten is the trouble, when it may not be.


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AliB Enthusiast
It sounds like what you're talking about is intestinal yeast and/or bacterial overgrowth. We both know that many on this board have trouble in this area, and it is also true that the typical American diet is loaded with sugar - something which many don't seem to want to give up.

I know first hand how an intestinal yeast overgrowth can be truly debilitating. But even then, I didn't have to avoid complex carbs to get rid of it. That's not saying nobody would need to, but it apparently isn't always necessary. Sugar feeds bacteria/yeast directly, but as I understand it, carbs only make good food for them as our digestive enzymes break the carbs into simple sugars. So when there's malabsorption, perhaps the sugars hang around within the intestines longer than normal, feeding the beasties.

However, to suggest that gluten can be added back into the diet of a Celiac would be absolutely incorrect, so I hope you're not saying that. Rather, I hope you meant to suggest that there are some whom have concluded that gluten is the trouble, when it may not be.

Mono-saccharides (vegetables, fruits, honey and live plain yogurt) convert straight to glucose within the body so can be used directly. Di-saccharides (sugar and lactose) and Poly-saccharides (grains and starches) have to be broken down by the digestive enzymes. That is all well and good, but the whole reason most people are on this site is because their digestive systems are not functioning properly. Most guts are so damaged they are not producing the enzymes necessary for the conversion, therefore the gut gets full of undigested or only partially digested food that does nothing beneficial for the body and just ends up as fuel for the little beasties.

It is true that sugar, lactose, grains and starches convert to glucose, but only in an efficient digestive system.

What I am saying about gluten is, what is Celiac? The original understanding of the condition was that these people cannot digest carbohydrate. It was found that withdrawal of carbohydrates for a while allowed the gut to heal and after a while carbohydrate (including gluten) consumption could then be resumed. This method was applied for some time with total success. Later though, for reasons only known to themselves, the 'powers that be' decided to abandon the winning formula and run with the 'gluten' theory. Those who were labeled as 'Celiac' were then herded into a very small category and the vast heap of everyone else with similar but 'undiagnosable' 'Celiac-type' symptoms were totally abandoned to their own devices.

There are a huge number of unexplainable anomalies under the current 'understanding'. As someone commented - "the more we learn, the more we realise how little we actually know".

How come there are so many who don't get better after removing gluten even though they have been diagnosed as 'Celiac'? How come some who have extreme reactions to it, find that after removing gluten from their diet for some time, they then can consume it without any apparent effects? What if those who continue to react to it are doing so because their guts are not healing due to continued carbohydrate consumption, albeit non-gluten? So little is understood about genetics - how can we be certain that 'Celiac' is not being made to 'fit' the genetic 'markers', and that it doesn't actually have anything to do with it at all? Even though these genetic 'markers' have been 'discovered', there still seems to be an awful lot of confusion about which genes fit what. What if there is no such thing as 'Celiac' - merely different levels of gut damage caused by rogue bacteria?

Because the bacteria can cause such havoc and untold damage within the body they could well be behind all the illnesses and 'auto-immune' diseases. They can access virtually any area of the body - Candida, being just one of many can act like dry-rot within the body, working its way through with its mycelial spores, even into the brain. Makes me feel sick just thinking about it.

We can stop eating gluten, but although that may halt the rise of the gluten-chomping bacteria, the other carbs we consume are continuing to feed other rogue bacteria. As I have posted before, shortly after going gluten and dairy free I experienced 2 or 3 days of the most incredible energy. It didn't last. Why? I believe the likely answer was probably where the gluten and dairy-chomping bacteria went into temporary decline and briefly stopped producing their toxic by-products which gave my body a healing spurt. But although I wasn't eating gluten I was still having carbs - actually non-gluten foods much higher in carbs and the little beggars just picked themselves up and re-adapted to their new environment. Out came the toxins again, and down I went.

At the moment my body cannot digest carbohydrate at all. I get bloating - a sure sign of rogue bacterial activity, stomach and back pain and dreadful fatigue. I will not get better whilst I eat carbohydrate, and there are an awful lot of people out there in the same boat as me. That is why the SCD works - because it removes carbohydrate until the gut is properly healed. Although I could not tolerate gluten a few months ago at all, I have been exposed to it recently enough to cause a reaction, yet did not react, so I am healing, albeit slowly. I will continue to restrict the carbs until I am well. Those who follow the SCD have found that they have been able to get their gut flora back into balance - it may have taken 2 years or more, but having done so they have then been able, in moderation, to eat a fairly normal diet, including gluten.

My research took me, gradually through a process of elimination, back to gluten and dairy, but, as an analyst I ask myself why these foods should be a problem? Although science has mucked about with them it is not the food that is the problem. It comes down to our inability to digest them. Why? Because our digestion is not working properly. Why? Because the one thing that is essential for our life and well-being, the life-forces that support our bodies are not in the right combination. Too much pathological and not enough physiological causes disease. The toxins that these little beasties produce will trigger virtually any disease.

Good bacteria is there for many and varied reasons but most importantly for digestive and immune support. The Gut and Psychology Syndrome book uses an analogy. If the first process on a production line is not done properly then despite the efforts of the rest of the team, the product will be inferior. Unfortunately though, within the body everything impacts on everything else and it is not just the first process that is the problem. Within the body, if the first process doesn't work properly then everything else that follows it cannot function effectively and may actually even be dangerous. Get the foundation wrong and the whole building is undermined.

RiceGuy Collaborator

Well, AliB, I think there are a number of things going on with various people. However, Celiac is autoimmune. There is no getting around that. The antibodies which destroy the body's own cells aren't produced by bacteria.

I suspect though, that just as it is possible for someone to get chicken pox more than once because the immune system "forgets" how to produce the antibodies, the same might be possible for a Celiac. In other words, suppose the immune system not only stops producing the antibodies responsible for the damage to the small intestine, but looses the "blueprint" for doing so? If this can happen, then it may be that Celiac would return if a trigger sets it off again.

Let's not forget too, that misdiagnoses happens all the time, be it by a doctor, or the patient. But there are plenty on this board who can eat all manner of carbs without the reaction caused by a tiny crumb of gluten. Some react much too quickly and/or severely for it to be bacterial. Besides, undigested carbs make a comparatively poor food for bacteria. They multiply too slowly on it to flare up the way many of us react to gluten.

Also, someone whom is not intolerant to gluten doesn't have the elevated antibodies, even if they have a bacterial or fungal overgrowth.

lizard00 Enthusiast
Well, AliB, I think there are a number of things going on with various people. However, Celiac is autoimmune. There is no getting around that. The antibodies which destroy the body's own cells aren't produced by bacteria.

But there are plenty on this board who can eat all manner of carbs without the reaction caused by a tiny crumb of gluten. Some react much too quickly and/or severely for it to be bacterial.

Well put RiceGuy (as usual... B))

That would include me. In fact, my body feels best when I eat rice, whole grains, fruit and veggies. Dairy just doesn't work.... I tried the hard cheese thing from the SCD. Breaks my face out, hurts my gut... And I actually feel weighed down and YUCKY if I eat too much meat protein. As long as I keep dairy and gluten out of my diet, I am fine. And the more whole foods I eat, the better I feel.

I do agree on the processed part of what was said. I think that when Celiac replace gluten foods with their non-gluten counterparts, the healing process is much slower. A damaged gut just can't deal with an overload of processed foods. That being said, as well as I think I'll ever feel, I don't believe I'll be able to tolerate gluten. And given the fact that it is an AI disease, and believe me, I have felt beaten up from the inside out, I am not willing to damage my gut all over again. I have family that believe "everything in moderation", and I have to say, they are always feeling less than good.

And for all the gut problems I have, someone with a stomach "bug" could literally throw up on me and the chances of me catching it are slim. (It's happened before) I've had a stomach "bug" no more than 4 or 5 times in my life. I do NOT have a candida problem.

I have Celiac. Simply stated. Gluten is what causes me to have GI problems.

lizard00 Enthusiast

NOW, to the OP...

Were you dx with Celiac? Please take that as no offense... I was gluten-free for 8 months before I was dx. I just mainly wanted to get an idea for other possibilities. And one of the criteria for Celiac is that you respond positively to the diet. There are a few folks around who have Lyme, metal problems, etc. All these things can make you tired; a lyme infection can hit your gut pretty hard, thus getting you down to eating only a handful of foods. Same with metals. And while I do not personally know your story, I would definitely check into some new things. Have they re-biopsied you to make sure you are healing properly, or ruled out refractory sprue?

Hope that helps maybe to get some ideas moving around :)

AliB Enthusiast
Well, AliB, I think there are a number of things going on with various people. However, Celiac is autoimmune. There is no getting around that. The antibodies which destroy the body's own cells aren't produced by bacteria.

I suspect though, that just as it is possible for someone to get chicken pox more than once because the immune system "forgets" how to produce the antibodies, the same might be possible for a Celiac. In other words, suppose the immune system not only stops producing the antibodies responsible for the damage to the small intestine, but looses the "blueprint" for doing so? If this can happen, then it may be that Celiac would return if a trigger sets it off again.

Let's not forget too, that misdiagnoses happens all the time, be it by a doctor, or the patient. But there are plenty on this board who can eat all manner of carbs without the reaction caused by a tiny crumb of gluten. Some react much too quickly and/or severely for it to be bacterial. Besides, undigested carbs make a comparatively poor food for bacteria. They multiply too slowly on it to flare up the way many of us react to gluten.

Also, someone whom is not intolerant to gluten doesn't have the elevated antibodies, even if they have a bacterial or fungal overgrowth.

Yes, but what is 'auto-immune'? It is the Medical Profession saying "for some reason the body is attacking itself, but we don't know why"! Why can bacteria not be behind it? Some of the pathogenic by-products produced by the rogue bacteria are extremely toxic to the body.

There are many different bacteria producing many different by-products, some of which can be beneficial in small amounts but become pathogenic when out of control. Yeasts are part of normal bowel flora and help in the digestive process when under control, but yeast overgrowth, for instance, diverts a proportion of the dietary glucose from carbohydrates and digests it through alcoholic fermentation into ethanol and acetaldehyde. There has been documented evidence of people being 'drunk' without having had anything alcoholic.

This constant supply of alcohol has a very detrimental effect on the body. It reduces the digestive ability to make stomach acid, degenerates the pancreas and pancreatic enzymes, damages the gut, causes malabsorption (where have I heard THAT before?), damages the immune system and the liver and impairs its ability to detoxify causing toxic accumulations within the body resulting in disease, affects and damages the brain and cognitive functions, causes nerve damage, weakens muscles, enhances drug and pollutant toxicity, and alters nutrient metabolism.

The effects of Acetaldehyde is even thought to be behind the majority of 'auto-immune' diseases. It blocks the body's ability to take up nutrients causing malabsorption issues. The gut damage and results of bacterial toxicity causes incomplete digestion and also allows toxins that would normally be confined to the gut, through into the bloodstream. When gluten and casein are not properly digested they turn into substances similar to opiates, yet more toxicity. These then affect different areas of the body, particularly the brain. The most common gluten reactions are neurological.

It is possible to supplement with enzymes, like DPP IV, but that is only one that we know about. How many more enzymes do the poor little damaged enterocytes normally produce when they are healthy that we know nothing about? Supplementing does not get to the root of the problem. The only way to deal with it properly is to restrict the foods that are encouraging the rogue bacteria, get them under control, repopulate the gut with 'good' bacteria and allow the damage to heal. Then none of these foods will be problematic any longer as long as they are not over-indulged in. Gluten should then no longer be a problem because the complete digestion of it would no longer produce the opiates.

The immune system doesn't 'forget' how to produce antibodies. If it did then people who are highly allergic to peanuts would find at some point that they aren't. If it is no longer producing antibodies to something, it is because that substance is no longer a problem to the body. Many who are following the SCD have found that after some time the diet has enabled their gut to heal and they can then eat, within reason, 'normally' because they have got the bacteria under control and they are no longer producing the toxic overloads that triggered the food reactions. Gas? Bacteria. Furry tongue? Bacteria. Mouth like a sewage pit in the morning? Bacteria. Thrush? Bacteria. You name it, bacteria is behind it.

If they no longer get a reaction to gluten, it is quite likely because the bacteria that reacted to it is now under control and no longer a pathogen. Those who no longer react to it have often found that they no longer react to it after 2 or 3 years. That would equate with the gut healing time. those who continue to react may well have other strains of bacteria that are being supported by the continued ingestion of other carbohydrates. Bacteria digest things, it's what they do. But in doing the digesting, they produce by-products, some beneficial, some pathogenic.

What if though an allergic reaction was simply the body trying to combat bacterial toxicity produced in response to the ingestion of a certain food? We know that bacteria digesting certain waste produces methane for instance. In some people eating certain foods triggers bacterial activity enough to make loads of gas, why not other toxins that could trigger a histamine response? Why accept that bacteria can cause one type of reactive by-product, but not another? As for speed, why could a bacterial reaction not be immediate? If the ingestion of gluten causes certain pathogenic bacteria - even living in the esophagus and stomach, to start chucking out a response, it could flood the body within minutes. I'm not talking about bacteria multiplying, I'm talking about them throwing out a reaction to the food. No-one knows what triggers a gluten response or why, or even what it is - it is not usually an 'allergic' reaction or histamine response, so what is it? This is as good a likely explanation as any other!

There are hundreds, if not thousands of different bacteria that can be present within the approximately 2 kgs of the millions of bacteria that inhabit our guts, some benign, some beneficial and some downright pathogenic. We only hear and know about just a few. We hear about E.Coli. It causes food poisoning. Yes, but that is only one of many strains of pathogenic E.Coli. There are also many beneficial strains of E.Coli. Some are beneficial in low numbers, but pathogenic when out of control. There are many strains of Candida, some 'good', some 'bad'. The same with clostridia, streptococci, staphylococci, enterobacteria, etc., etc.

At the end of the day we know very little about what is behind most of our illness and disease. What we do know is that bacteria are everywhere. We know that they digest things. We know that they give off by-products as a result of that digestion. We know that our bodies are inhabited by millions of the little beasties. We know that some are beneficial and some are not. We know that bacterial and/or yeast overgrowth is a problem for a lot of people. We know that many have a problem with it but don't know it. We know that there are some bacteria that can cause major health problems for a lot of people - MRSA, C.Diff, E.Coli, Tetanus, Candida, Streptococcus, Tuberculosis, Pneumococcus, etc., etc. What havoc are the bacteria that we know little, if anything, about, playing with our bodies???

pele Rookie

Hi Ali

I don't know how many people are reading this thread, but I'll bet you've rung a lot of bells when you talk about healing the gut and then being able to tolerate gluten.

My question to you is this:

How does one know that gluten is tolerated?

Gut symptoms are only one sign of gluten toxicity. What about the effect on the nervous system, endocrine system, skin, and so on, that may take years to develop?

I, for one, do not plan to ever mess with gluten again, no matter how "healed" I may someday feel from the SCD.

Boy, and to think I used to worry that someday I may be stuck in a nursing home where they serve Jello for lunch.

purple Community Regular

Here is a very good book:

"The Maker's Diet" by Jordan Rubin

On p.11, he states that he had the highest level possible of yeast overgrowth among his other symptoms...

He almost died. His cure was dirt- Homeostatic organisms. (on p.26)

He got sick in college eating all that junk.

He was 6' and went from 180 to 111lbs.

www.makersdiet.com

RiceGuy Collaborator

AliB: Though I'm interested in continuing the discussion, this thread is really not the place for it. But you could certainly start one dedicated to your theory.

AliB Enthusiast
AliB: Though I'm interested in continuing the discussion, this thread is really not the place for it. But you could certainly start one dedicated to your theory.

Well, it is and it isn't. The thread was about 'still having problems'. My 'theory' (and I fully believe that it is, and will prove to be, much more than just a theory!) is that many of us are still 'having problems' because of the bacteria.

Hi Pele - I will go back to my 'Gut Imbalance And Dysbiosis Behind Everything' thread and answer your question according to my 'theory' on there........................

Lshetler Rookie

Thanks all for the excellent posts, and sorry for such a late reply. I found all of this to be very helpful, and I was definitely not thinking in terms of bacteria. I take a multi-flora, as well as digestive enzymes.

I felt a bit stupid after posting, I did it primarily because I was in a terrible mood after eating something bad. I thought about what I could do, and I started taking more HCl. I was taking about four pills a meal before, now I'm up to 15 (680mg) and I still don't feel the acid. At first I started feeling really good again, but some mystery food has made me ill again. I eat the same food everyday, all homemade, but I think it was the organic tomato sauce that bothered me.

I'm going to see if cutting that out makes a difference, and if it doesn't I'll try the SCD, it sounds interesting. It would be very difficult for me, because I'm intolerant to most of the things in the diet.

And no, I don't have a diagnosis, and while I never said I had celiac disease, I probably do have it. I didn't have insurance, or else I would have been tested. I react very strongly to gluten; last time I had it, I lost 15 pounds in one day. I felt ill within 15 minutes of eating it, and there was a lot of blood...

It's the same with all the other food, my head starts to really hurt, and I get very depressed/hazy minded after about 15 minutes, and then my stomach starts to hurt shortly afterwards. The symptoms are just less severe.

I have insurance now, but I was under the impression that you needed to be eating gluten in order to obtain a diagnosis. After I had been gluten free for about six months, I finally talked to a doctor. He said that gluten intolerance and celiac disease were the same thing, and that the blood test would work even if I was gluten free. I told him that I had read otherwise and he got mad at me. I also told him I had a hernia, he checked and said I didn't have one. I knew I did, since I've had one before, so I went to a different doctor and sure enough I had a hernia. Needless to say, that doctor was awful (the test was obviously negative).

Anyways, I now have a pretty good idea of what to research, so thanks. The information on bacteria and the SCD is exactly the type of thing I was looking for.

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    • trents
    • CatS
      I understand your frustration about socializing while having celiac disease. I also have allergies to nuts, dairy, all forms of gluten including oats, strawberries and MSG. I get anxiety while grocery shopping and really take my time to read all labels. I always carry a magnifying glass with me wherever I go to read labels. Many products are labelled Gluten Free but contain Oats, and apparently this is becoming more common. I almost bought some gluten free flour but read that it contained oats. A certain percentage of Celiacs have this complication. I can’t help feeling offended and excluded when others act like I am being “high maintenance”. I am becoming better at being an advocate for myself.  I have had diverticulitis 3 times and each time hospitalized-once, the attending nurse didn’t know what celiac means-she had to research...  If others around me make comments I try to enlighten them, those who don’t get it are not my friends anymore. Be very careful about cross-contamination. I was sick recently for 10 days after a meal was contaminated while I was on holiday. If servers say they have gluten free buns or bread, ask if they use a toaster specifically reserved for gluten-free, or don’t chance it. On a positive note, I didn’t find out I had Celiac Disease until I was 60. Eating a gluten free diet means no more terrible headaches, hives, rashes, intestinal bloating and irregularity, Gastro Intestinal Reflux….when I follow a strict diet and mostly always eat at home, I feel great! I also weeded out “friends” who weren’t worth being around.
    • Kwinkle
      Thank you, Trents- are there any safe alternatives?
    • Scott Adams
      I agree with @trents, it's not typical for gluten exposure to cause symptoms as delayed as a week or two after ingestion. In most cases, reactions to gluten occur within hours to a few days, depending on individual sensitivity and how much gluten was consumed. The delayed symptoms you describe—stomach cramping in the mornings and flaky stool—might suggest that something else is contributing to your discomfort. Cross-contamination is a common challenge, especially when dining out, and it's great that you're doing your best to stay gluten-free. However, the inconsistency of your symptoms and the long delay between exposure and reaction could warrant further investigation. It's possible that another gastrointestinal condition, such as IBS, a food intolerance, or a reaction to something else in your diet, might be contributing to your symptoms. You might consider keeping a detailed food and symptom diary to identify potential patterns or triggers. Additionally, consulting your gastroenterologist could provide clarity. They may suggest testing to rule out other issues, such as small intestinal bacterial overgrowth (SIBO), microscopic colitis, or other sensitivities. If you suspect cross-contamination is a significant issue, you could also ask for follow-up bloodwork (e.g., tTG-IgA) to check if your antibodies are elevated, which might indicate ongoing gluten exposure.
    • Scott Adams
      Good to know, here is their website: https://polly-o.com/
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