On Gluten Free Diet And Still Feeling Sick - Help!

[Sunsoul10]

Hi,

I was diagnosed with bloodwork by my doctor in August 2007 - the doc, mistakenly told me I did not need the scope so I went straight to the nutritionist and started a gluten free diet. Within the first 2 months on a gluten-free diet I felt great and wondered how in the world I had functioned before. The biggest change I noticed was the lifting of the 'brain fog', relief of extreme fatigue, no more random gut pain, healthier stool, no acid reflux (along with runny nose etc that comes with it), aches/pains/headaches lessened.... so on and so forth.

I am 9 months into being gluten free now, and I find I am having some lingering problems - while I am feeling much much better, I am still not feeling 100% - the things that are concearning me most at the moment are aches and pains and fatigue. I have had back and neck problems since I was 16 and was treating them with massage, chiropractic and tylenol. I have needed these less since going gluten-free, but I am still in pain.

I recently learned that there are problems that arise from a celiac being on a gluten filled diet for a long time (in my case, they diagnosed me at age 25).

Does anyone know if my current troubles relate to any of the health problems that piggyback on celiac's disease? How can I get my doctor to screen me for these things?

Will these problems be easily reversed?

Any info would be great, as I am getting quite worried.

I'm glad to have my life back - but I want the last 25% of it back too!

[Guest AutumnE]

I had the same problems, I found I had other food intolerances that I was not aware of before. Once I started to heal the villi I started to absorb my foods and I found out I had many food issues.

Dairy and soy are very common intolerances. Branching out further but less likely might be nightshade vegetables, citrus fruits, corn, and rice among others. I would try dairy first and give it a bit then add soy to the mix and see if that helps.

[Sunsoul10]

  AutumnE said:

I had the same problems, I found I had other food intolerances that I was not aware of before. Once I started to heal the villi I started to absorb my foods and I found out I had many food issues.

Dairy and soy are very common intolerances. Branching out further but less likely might be nightshade vegetables, citrus fruits, corn, and rice among others. I would try dairy first and give it a bit then add soy to the mix and see if that helps.

So if there are other intolerances is there some sort of screening that can be done, or is it just the russian roulette of taking things out of my diet one at a time?

Thanks for your post!

[Guest AutumnE]

www.enterolab.com has testing but its cash pay which is the reason I decided to test myself through elimination diet. They can test for dairy, egg, soy, yeast and gluten. My niece and nephew tested for these and they were very accurate since we saw a huge difference in their behavior from removing the intolerances.

Your welcome I hope this will work for you.

[kbtoyssni]

If you were diagnosed via blood work, then there was really no reason to do a scope. I'm going to agree with your doctor here. I'd guess your lingering problems are from occasional CC or other intolerances.

[Sunsoul10]

  kbtoyssni said:

If you were diagnosed via blood work, then there was really no reason to do a scope. I'm going to agree with your doctor here. I'd guess your lingering problems are from occasional CC or other intolerances.

i was at the Canadian Gluten Intolerance Festival in Victoria this past weekend, and the docs there stressed upon having a scope and biopsy to rule out any other problems. But since I'm on gluten-free diet, a biospy will show no results now. there were experts from Canada and the US there who all said that same thing. that;s why i wonder if my problems could be something more.

[BRUMI1968]

Aches and Pains could easily be a nightshade problem (tomato, potato, eggplant, peppers [not black pepper], tobacco [not sweet potato]). These can not only leach calcium in their digestion, they can also cause lots of trouble for those with arthritis. Even aside from those things, lots of folks with joint/bone pain feel relief quitting those nightshades.

Fatigue. I have been plagued with this for years. I recently quit all grains and beans (along with dairy, soy, gluten) and after about two or three weeks, suddenly felt a whole new level of mental clarity, and some increased energy physically as well. It sounds quite extreme, but I don't find it so (once you get used to it, which takes about 3-4 days addiction-wise, a bit longer sociologically speaking).

Fatigue, of course, can also be problems of low iron or B12. If you have not had your B12 checked, it is well worth it. If you do have low B12, they can do shots or you can take pills, but find out about the newest thing, which I think is nasal spray - it is supposed to work best. Also know that B12 cannot be absorbed dietarily unless you have enough stomach acid, which is true of many nutrients (that is how our stomachs are meant to work). So folks with chronically low stomach acid may well be nutrient deficient in many ways. So that is worth getting tested as well.

Thyrdoid function should be checked as well. Celiac and thyroid issues often go hand in hand, so it's worth looking into.

Lastly, I'd consider candida. If you have any other symptoms that fit candida (check it out on the web), that could be the fatigue.

Biggest allergens: wheat, dairy, soy, corn, eggs. You might try making sure you're getting fewer of these, or cutting them out entirely.

I know it's a pain to keep thinking of foods NOT to eat - it can get demoralizing. But once you get the energy and mental clarity, then all that feeling can go away. Good luck.

[BRUMI1968]

  Sunsoul10 said:

i was at the Canadian Gluten Intolerance Festival in Victoria this past weekend, and the docs there stressed upon having a scope and biopsy to rule out any other problems. But since I'm on gluten-free diet, a biospy will show no results now. there were experts from Canada and the US there who all said that same thing. that;s why i wonder if my problems could be something more.

This reminds me of a book I'm reading: "Our Daily Meds", which is about the pharmaceutical industry and their chokehold on Americans. So far, really good book, and eye opening. I'm not on any meds, but most folks I know are on at least one thing.

Anyway, one thing they mentioned were tests, and how tests are another way both doctors (who took a big hit with the advent of managed care) and pharmaceutical companies (who probably have some "cures" for ills that can only be diagnosed with testing) benefit from testing more than you do. The amount of radiation you get from a mammagram, for example, is quite large. And the discover of breast cancer from mammogram is actually quite small. Self breast exam and annual exam are much better. that's just an example. But frankly, giving you a scope is another test that invasive, would force you to go back on poison, and is uncessary because you know that the gluten is giving you fits.

Just my rant. But the book is awesome and I think everyone in America should read it. (Already learned about how pharma companies invent diseases such as generalized anxiety disorder [which i was diagnosed with - but ooops, turned out to be gluten intolerance], overactive bladder, acid-reflux disease, and Premenstrual Dysphoric Disorder. ARG!)

[Takala]

  Sunsoul10 said:

i was at the Canadian Gluten Intolerance Festival in Victoria this past weekend, and the docs there stressed upon having a scope and biopsy to rule out any other problems. But since I'm on gluten-free diet, a biospy will show no results now. there were experts from Canada and the US there who all said that same thing. that;s why i wonder if my problems could be something more.

~~~~~~~~~~

Well.... (oh, and btw, welcome to the forum)

there is this problem in American medicine right now, which is the huge gap between reality of medical practice and what the American physicians think is going on with their patients, plus they're up there with a bunch of Canadian doctors who work under a vastly different system, which is non profit.

So the American doctors, every single thing they do, they are thinking of it in terms of dealing with the insurance companies. But this looks bad. So of course, if they're in a pickle, and when they get before a bunch of Canadian doctors, of course they are going to want to look as if they are being just as thorough. So if the Canadian doctors do biopsies with their bloodwork, by golly, the American doctors are going to say that's a good idea too.

Now, in reality.... every time an American see a doctor, the doctor's office assistants have pre screened that person to see how and what kind of insurance this person is going to use to reimburse them with. So the doctor, when he sees the patient, he or she is thinking, as the patient describes the problem, what sorts of tests is XYZ Insurance Company going to want to rationalize this diagnosis, and will they pay for it or hassle us over it.

Now, this is assuming that a blood test AND a scope has to show certain things for a person to be actually gluten intolerant.

Guess again. There's plenty of people here who flunk their various tests. This doesn't mean they aren't gluten intolerant, it means they just didn't test to show it.

I am one of them. I had no formal testing, I just went on the diet 5 years ago after developing increasing bad neurological problems and getting misdiagnosed and blown off by numerous doctors. I was in my late 40's, I had very bad arthritis, auto immune, and kidney problems, brain fog, and numbness in my hands and feet, lack of coordination, dizzyness, and visual disturbances. I still got blown off after telling (new) doctors I had changed my diet, but... now I was in control, and I had proof of my problems being food related because I knew that I responded well to a radical diet change. I cut ALL grains out of my life until this past year, then introduced some non gluten grains back in, but I'm still very low grain carbohydrate consuming compared to most people.

Of course, once one stops eating gluten, after a few months, if you are strict enough, you lose the blood antibodies to the proteins. Because I had several doctors still treating me like a nut ball case because I was telling them my "supposed MS" symptoms were going away on a no grain diet, I did not pursue a formal diagnosis. What would be the point ? I had no intention of ever eating enough wheat again to make myself that sick.

Last summer I was getting a lot of weird symptoms again, which resembled thyroid problems, (family history of, also) plus I have another ongoing problem with a certain joint. I went to the doctor, and asked for a thyroid test, they did it, and of course, it came back normal.

So I started doing a ton of internet research again, trying to figure out what other symptoms cause this, because I certainly had the stupid symptoms, and discovered that it is a good idea to also run not just the thyroid levels but the antibody test also, because this can be another auto immune thing. Your thyroid levels can spike up and down. Oh, goody.

So I called the doctors' office, and asked what tests they had run, and honest to gosh,.... they couldn't tell me and told me to come back in on an appointment to talk to the doctor about it. ($$$$$$)

I said, why don't you just read me what it says on that form, and then send it to me (they have to give you your test results, by law) and they did end up doing that. Of course, no antibody test.

So I make another appointment (dif doc, same practice) and tell them I need an antibody test because I have a higher probability of auto immune thyroid disease because of the gluten intolerance (that I don't officially have.) I tell the guy very clearly I have not eaten the stuff in 5 years. This is so they won't try to suggest I get scoped or something more ridiculous.

So what do they do. They run a blood test for the anti gliadin antibodies (to the wheat proteins) and of course, it comes out negative because I haven't eaten it in years, and the doctor's office calls me up and tells me I'm perfectly normal test wise. "you don't have celiac!"

Now, I'm trying to think why they would do such a dumb thing, and the most obvious answer is that the insurance company was going to complain if they ran the other thyroid test, so this covered their butt if they ordered a whole blood panel. But what this has also done, is made it more difficult for me to be taken seriously the next time I have to have a medical interaction with doctors.

This doctor also wanted me to go thru an awful lot of screenings for routine things that were not at all relevant to the other (joint)problem I have been plagued with for the past year. I turned it down. I'm tired of these wild goose chases that just waste my time. They just try to do this because they know this is something the insurance companies will pay for at age 50 or around that age. I based this on the extreme difficulty I had getting follow up testing I was supposed to have from this office for the problem they DID find, and I was supposed to keep getting checked on.

I think this is about the time I started to read thru an awful lot of the back posts here, researching and reading links, and also reading more thyroid sites.... and discovered that I might want to also give up soy pretty much, because it could depress my thyroid function. So I did that, and that improved a lot of the symptoms, didn't get rid of it totally, but it's much better.

In the meantime it seems I have developed something else going on, and now I'm waiting weeks for an appointment with another doctor in another practice who might be able to take me seriously.

It would have been two months but they took me on an "urgent" basis.

But getting back to you, if you had a positive blood test, and if you are feeling much better on a gluten free diet, then you at least have a gluten intolerance. The only reason to do a biopsy would be to see if you also had intestinal damage from eating gluten for a long time. Doctors cannot "officially" give the diagnosis with out both, in some situations. Well, guess what. The biopsy only takes a few little bitty areas out of all those feet of intestines, and it may not show any damage anyway, depending on how old you are and what you eat and your genetics and a lot of other things. The only real reason to do a biopsy would be to either give you an

"official" medical diagnosis, or

to satisfy the demands of the insurance company.

But look at it now from the official doctor's approach... they want tests, but they don't acknowledge that we the patients may not be benefitting from such tests, or having difficulty getting the correct tests.

But if you have a positive blood test, that's pretty much proof already. I don't know of anyone who had a fake positive blood test (other than laboratory error) and wasn't gluten intolerant.

So you know you are gluten intolerant, and you know that you need to eat a better diet. You may indeed have other things wrong, but we're all going to tell you the same thing..... it is more likely you're getting cross contaminated, and just need to fine tune your diet, and maybe you have another intolerance or two. (you may have to give up dairy for a while, or soy, or corn, or something.... or your lipstick. you'll figure it out)

You really need to get a little refrigerator to store food, they are not expensive. You have a medical necessity for this, if your dorm rules balk at this. You may also need a hot plate and a microwave. You need to eat lots of fruit and vegetables. And protein. And once you get yourself eating better, you will feel better. It takes time to heal up and start getting your food to be fully absorbed. Also try a gluten free B complex vitamin.

[AliB]

I am an analyst - by nature, not by profession. I have an overwhelming need to know WHY! I collate information in my brain for use at a later date.

One thing I have picked up on strongly from this forum is that this happens on a very regular basis. People either get a bit better but do not fully recover, or they get better but then go back down hill at a later date.

Like you, I fall into the 'better but not fully recovered' group. My tests came back negative but as soon as I had had the test I dropped gluten, dairy, most carbs and sugar (in for a penny........). Over the years I have recognised that I don't cope with carbs very well and that has been borne out by the fact that I went from having lots of hypos, to being diabetic.

Like you I have been doing a lot of research on the net and have recently come across the Metabolic Typing Diet. What it has shown up is that I am a 'fast oxidiser Protein type', who needs to have plenty of protein and very little carbs. I kind of knew this as I need protein every day or I get a headache, but till now I didn't know why.

When we go gluten-free we have a tendency to hunt around for alternative carb foods to eat. These foods are commonly not only high in carbs but often very high in sugar too. If we have a metabolism that does not cope with carbs very well then we essentially end up exchanging one set of problems for another. Yes, we have removed the gluten and that certainly helps, but it is only part of the problem.

Those who have more 'slow-oxidiser' carb-oriented metabolisms cope with the change fine and have little or no problems on the 'normal' gluten-free diet, but those of us at the opposite end of the scale are still struggling.

Like you I had a flash of energy and well-being 2 weeks or so after starting gluten-free but got knocked by a virus and haven't been able to get it back, but I have been on the 'Protein' regime now for 2 - 3 weeks and am beginning to see the benefit.

One of the most noticeable things is the vast reduction in external Candida manifestations - I am logically assuming that if the external are going then so are the internal. Things like Athlete's foot, dandruff and itchy scalp, no longer needing to wash my hair at least every other day, 'jock itch (what a charming name - couldn't someone come up with a less revolting one!), etc. Candida causes so many problems that the benefit will not occur overnight but at least I am moving in the right direction and my body is finally getting what it needs. My ability to cope with carbs has diminished even further since my digestion collapsed before I went gluten-free so this diet indicates even more that this is the way my body needs to go in order to function.

A worldwide survey done by one chap who traveled extensively over 20 years back in the early 1900's noted that those who stuck to their indigenous ancestral diet suffered very little in the way of problems. Where they deviated from that, even slightly, it was apparent that within 2 or 3 generations disease and malformation started to manifest. Our genetic structure dictates the type of food we should be eating - we have become such a melting-pot of genetic mixes that it is difficult for most of us to pinpoint our ancestral source, and in any case, it can only take one set of 'rogue' genes to throw us out of our assumed 'pool'.

My background is predominantly Anglo-saxon originating from the cold north where the diet consisted, and still does, predominantly of protein and animal fat. I find this fascinating and certainly a very strong candidate for the cause of the huge range of health problems that those of us who have 'lost' our ancestral root base are suffering from.

[katebuggie28]

  AliB said:

I am an analyst - by nature, not by profession. I have an overwhelming need to know WHY! I collate information in my brain for use at a later date.

One thing I have picked up on strongly from this forum is that this happens on a very regular basis. People either get a bit better but do not fully recover, or they get better but then go back down hill at a later date.

Like you, I fall into the 'better but not fully recovered' group. My tests came back negative but as soon as I had had the test I dropped gluten, dairy, most carbs and sugar (in for a penny........). Over the years I have recognised that I don't cope with carbs very well and that has been borne out by the fact that I went from having lots of hypos, to being diabetic.

Like you I have been doing a lot of research on the net and have recently come across the Metabolic Typing Diet. What it has shown up is that I am a 'fast oxidiser Protein type', who needs to have plenty of protein and very little carbs. I kind of knew this as I need protein every day or I get a headache, but till now I didn't know why.

When we go gluten-free we have a tendency to hunt around for alternative carb foods to eat. These foods are commonly not only high in carbs but often very high in sugar too. If we have a metabolism that does not cope with carbs very well then we essentially end up exchanging one set of problems for another. Yes, we have removed the gluten and that certainly helps, but it is only part of the problem.

Those who have more 'slow-oxidiser' carb-oriented metabolisms cope with the change fine and have little or no problems on the 'normal' gluten-free diet, but those of us at the opposite end of the scale are still struggling.

Like you I had a flash of energy and well-being 2 weeks or so after starting gluten-free but got knocked by a virus and haven't been able to get it back, but I have been on the 'Protein' regime now for 2 - 3 weeks and am beginning to see the benefit.

One of the most noticeable things is the vast reduction in external Candida manifestations - I am logically assuming that if the external are going then so are the internal. Things like Athlete's foot, dandruff and itchy scalp, no longer needing to wash my hair at least every other day, 'jock itch (what a charming name - couldn't someone come up with a less revolting one!), etc. Candida causes so many problems that the benefit will not occur overnight but at least I am moving in the right direction and my body is finally getting what it needs. My ability to cope with carbs has diminished even further since my digestion collapsed before I went gluten-free so this diet indicates even more that this is the way my body needs to go in order to function.

A worldwide survey done by one chap who traveled extensively over 20 years back in the early 1900's noted that those who stuck to their indigenous ancestral diet suffered very little in the way of problems. Where they deviated from that, even slightly, it was apparent that within 2 or 3 generations disease and malformation started to manifest. Our genetic structure dictates the type of food we should be eating - we have become such a melting-pot of genetic mixes that it is difficult for most of us to pinpoint our ancestral source, and in any case, it can only take one set of 'rogue' genes to throw us out of our assumed 'pool'.

My background is predominantly Anglo-saxon originating from the cold north where the diet consisted, and still does, predominantly of protein and animal fat. I find this fascinating and certainly a very strong candidate for the cause of the huge range of health problems that those of us who have 'lost' our ancestral root base are suffering from.

Do you have a website?