Help! I Am Very New To This Disease And Feel Overwhelmed!

[twinflame2]

My biopsy's and blood tests came back negative. But my symptoms are so severe I am having a hard time understanding how this could be. I can't seem to get over bacterial infections that end up developing in my sinus area. Is it possible to be so damaged in the intestinal tract that you can not absorb antibiotic medications well enough to get well? I respond to IV antibiotic therapy while in the hospital but not the oral medications. My system has gotten so run down and deficient of the nutrients that Celiacs Disease causes I think that this may be the reason I am so ill often. I don't get well unless I am hospitalized. But my doctor wants me to be on the diet even though my tests were negative. I have pain in an area they have not been able to biopsy yet and if I am not doing better in two months I will be put in the hospital again for a more conclusive look at that area. I hope I make it to that point.

I almost died the first time I was admitted because I had an both an E Coli and Strep infection in my sinuses. I only responded to the IV medications. My doctor does not seem to feel that I need extra nutritional support while starting out on the diet to get better. What should I do to convince him that I think I do need this support. I am not scheduled to see the nutritional dietitian until March 25, 2008. That is half way through my two month trial period on the diet. He feels I need the instruction and help to fine tune my diet. Should I call him and let him know how long it will be. And my next appointment with him is not until April 12, 2008. He will be my main doctor to follow me during my recovery of this diseased state. But I don't feel like he is getting the whole picture of how bad my health has declined. What should I do to get the assistance I need. My insurance is not very good and most doctors don't even accept it so it also limits my options. I am afraid I may not make it to the two months mark without being admitted into the hospital again. Any advise would be very appreciated.

[RiceGuy]

I think you are correct that your doctor doesn't fully understand. However, you do not need a doctor's approval to take nutritional supplements. So I'd ignore him and take some of the things that will be recommended by the fine members here on this site. You've come to the right place IMO. Many did not seek an "official" diagnosis, but rather simply tried the diet and got well. If you feel you need to see someone in person, sometimes chiropractors are very knowledgeable in regard to nutrients. Also, perhaps a visit to your local health food stores may help, as sometimes the owners are well read on common allergic reactions and such.

As for nutrients, some of the most common deficiencies are magnesium, B12, calcium, iron, zinc, potassium, and B vitamins. There can be others of course, so I'd suggest reading various threads on symptoms, and see what you relate to.

Also, many here report increased sensitivity to other foods after starting the diet, and it is often suggested to avoid dairy in the beginning. Perhaps the best advice I can offer with this is to listen to your body, as it will be trying to tell you what works and what doesn't.

One impression I get is that you may have a yeast overgrowth, such as candida. It may be helpful to take caprylic acid capsules while avoiding all sugars, yeasts, and vinegars. A candida problem may not be part of your ills, but to me it sure sounds likely. Besides, many members have also had the very same thing happen, so it is not uncharacteristic of Celiac sufferers. Antibiotics also leave the digestive system vulnerable to yeast overgrowth, so that's another clue to this possibility.

Even if your doctor doesn't fully understand, at least he has suggested going gluten-free. It cannot hurt, and the benefits can be incredible. I'm sure you'll get a lot of valuable advice from the many members here.

Welcome to the board!

[holdthegluten]

I think you are correct that your doctor doesn't fully understand. However, you do not need a doctor's approval to take nutritional supplements. So I'd ignore him and take some of the things that will be recommended by the fine members here on this site. You've come to the right place IMO. Many did not seek an "official" diagnosis, but rather simply tried the diet and got well. If you feel you need to see someone in person, sometimes chiropractors are very knowledgeable in regard to nutrients. Also, perhaps a visit to your local health food stores may help, as sometimes the owners are well read on common allergic reactions and such.

As for nutrients, some of the most common deficiencies are magnesium, B12, calcium, iron, zinc, potassium, and B vitamins. There can be others of course, so I'd suggest reading various threads on symptoms, and see what you relate to.

Also, many here report increased sensitivity to other foods after starting the diet, and it is often suggested to avoid dairy in the beginning. Perhaps the best advice I can offer with this is to listen to your body, as it will be trying to tell you what works and what doesn't.

One impression I get is that you may have a yeast overgrowth, such as candida. It may be helpful to take caprylic acid capsules while avoiding all sugars, yeasts, and vinegars. A candida problem may not be part of your ills, but to me it sure sounds likely. Besides, many members have also had the very same thing happen, so it is not uncharacteristic of Celiac sufferers. Antibiotics also leave the digestive system vulnerable to yeast overgrowth, so that's another clue to this possibility.

Even if your doctor doesn't fully understand, at least he has suggested going gluten-free. It cannot hurt, and the benefits can be incredible. I'm sure you'll get a lot of valuable advice from the many members here.

Welcome to the board!

I suggest you get an appointment with A Naturaopathic doctor. They are much better at building up your immune system and running tests for things like candida overgrowth,parasites, bacterial dysbiosis,etc. Your insurance probably wont cover it, but just put it on a credit card and worry about it later. Your health is more important than money. Search this site and you will find valuable info.

[Littlejen]

So sorry to hear your health is troubling you. I'm beginning to get weekly IV vitamin therapy called a "Meyer's Cocktail". It's especially helpful for people w/ Celiac since it bypassses that poor wreck of a digestive system. Maybe that would help??

If you're feeling awful, it's hard to steer yourself toward the light, but it's there. READ READ READ. I'm pullin' for ya!

[ccrrgn]

My biopsy's and blood tests came back negative. But my symptoms are so severe I am having a hard time understanding how this could be. I can't seem to get over bacterial infections that end up developing in my sinus area. Is it possible to be so damaged in the intestinal tract that you can not absorb antibiotic medications well enough to get well? I respond to IV antibiotic therapy while in the hospital but not the oral medications. My system has gotten so run down and deficient of the nutrients that Celiacs Disease causes I think that this may be the reason I am so ill often. I don't get well unless I am hospitalized. But my doctor wants me to be on the diet even though my tests were negative. I have pain in an area they have not been able to biopsy yet and if I am not doing better in two months I will be put in the hospital again for a more conclusive look at that area. I hope I make it to that point.

I almost died the first time I was admitted because I had an both an E Coli and Strep infection in my sinuses. I only responded to the IV medications. My doctor does not seem to feel that I need extra nutritional support while starting out on the diet to get better. What should I do to convince him that I think I do need this support. I am not scheduled to see the nutritional dietitian until March 25, 2008. That is half way through my two month trial period on the diet. He feels I need the instruction and help to fine tune my diet. Should I call him and let him know how long it will be. And my next appointment with him is not until April 12, 2008. He will be my main doctor to follow me during my recovery of this diseased state. But I don't feel like he is getting the whole picture of how bad my health has declined. What should I do to get the assistance I need. My insurance is not very good and most doctors don't even accept it so it also limits my options. I am afraid I may not make it to the two months mark without being admitted into the hospital again. Any advise would be very appreciated.

Hi

What have you been drinking, and how did you get these bacteria in your sinuses, do you realize where these dacteria come from, E Coli comes from fecal matter. You have the best start right at your fingertips, info. There are many sites that can help you with nutritional info, check out natural infection fighters, they are your best choice and the safest, check out cranberries, capsules, dried or juice or all of the above, then try cabbage, garlic, goji berries, blueberries flax seed. Cranberries and flax seed= galic will flush the sinuses and the blood stream cranberries will fight the infection and flax seed freshly ground will help heal your sinuses boost your stamina as well as make you hair and nail beautiful.

[AliB]

Of course you need supplements - your body can't cope on its own. The reason you are having these problems is due to malabsorption issues caused by the gluten and almost definitely a very acute Candida overgrowth - you are suffering so much deficiency your body and immune system is unable to function properly. If your body was able to get what it needed just from the food you eat, you wouldn't be sick!

Any damage to the gut lining regardless of how miniscule it might be will obviously impact on its ability to absorb. A biopsy will not pick up damage until it has reached the stage where the gut has all but collapsed. It can only distinguish major changes, not minor ones.

The fact that you can't absorb oral medication says it all! I think a certain doctor needs his brain examined for deficiencies! The hospitalisation is not making you well, it is merely providing a temporary sticking plaster!

Going gluten-free is the best thing to do in the circumstances, but in order to get well you need to be doing more. Candida feeds on sugar and carbohydrate. Whilst some of the remedies are helpful, like Caprylic Acid, Pau D'arco, and Garlic, the only real way of controlling Candida is to seriously restrict its food supply - sugar and carbs. We think of sugars in products that are sweet, but forget all the hidden sugar we ingest, such as the fact that carbohydrate and some protein converts to glucose, milk and dairy provides lactose and we also get other sugars like maltose and dextrose from food sources.

We are overwhelmed with sugar and have developed a very sweet tooth. It is very, very bad for us. Our bodies cannot cope with the amount of sugar that is in the modern diet. When Candida gets out of control, it changes from a yeast into a fungus. In its mycelial form it sends out threads and spores, penetrating the gut wall and causing leaky gut syndrome allowing toxins through into the blood stream and setting the body up for intolerances and allergic reactions. Because the immune system is constantly battling with it, it becomes weak and no longer has the strength to fight off other invaders - hence your other overwhelming bacterial infections.

About a month ago, my digestion collapsed. After researching I realised that my body was so overwhelmed with both gluten damage and Candida that I had to do something drastic. I stopped gluten, dairy, most carbs, and sugars. I immediately got relief from the terrible stomach pain and constant diarrhea. I have been gaining more energy. Most telling though is the fact that I am going through withdrawal and detoxification symptoms. Over the last 2 days my liver has had a serious clear-out - pretty frightening, until I realised what was going on.

It got pretty sore but is feeling a lot better now. I lost 3lb overnight! Better out than in, as they say! I suspect it has chucked out sludge, possibly stones, fat and toxins. My body is finally having the opportunity to off-load all the crud I have been throwing at it for the last 50 years. It will take a while to really feel the benefit but I see improvement all the time. I am determined now to not allow this to happen again. I will continue gluten, dairy and sugar free and just stick to a paleolithic type diet of good organic meat, fish and fowl, fresh vegetables and fruit, non-gluten grains, nuts and seeds and plenty of fresh water. I am also making sure that I get a good variety of supplemental nutrients. Now I am no longer eating the sugar in any quantity, I no longer crave it, even more so knowing what it is doing to me.

The Meyers Cocktail sounds good - not quite sure where you would get that, but you would need to be supervised under a good practitioner who could test for and determine the depth of your deficiencies and tailor your support to your individual needs, if you can find or afford one. Might be worth asking on this forum on the doctors section if anyone knows of a good practitioner in your area who could give you the right support, and even might be able to wangle the insurance thing. I don't know, but anything's worth a try.

The advantage of the cocktail is that although it might be more expensive a treatment, it actually could be far more cost effective as your body would be able to absorb the nutrients more effectively rather than, as with the oral supplements, most of it going straight through you and out the other end. Eventually, hopefully, after your digestion has had time to recover and heal, you may not need to take the supplements, or at least could cut down as you would then be able to absorb more from your diet.

I really hope you can get some decent help - it sounds like it's about time things improved for you!

[Lisa]

You will probably get some rapid relief by taking the Indian spice turmeric. It's inexpensive and you can usually find it fairly freshly ground at your local health food store. Besides being an immune system enhancer it is also is good for some of the worst toxin producing enteric bacteria like some strains of E. Coli. It works because those bacteria can't grow when turmeric is present. You can add teaspoon - tablespoon amounts to your food or take it in capsules which you can buy. It may stain dentures so some people prefer the capsules. Golden Milk - turmeric with gluten free 'milk' and a sweetener like honey makes a nice drink. I use stevia powder.

The bacteria that produce the toxins that make you sick overgrow in your gut because it has been damaged and food does not go through you smoothly and often backs up. When it backs up these bacteia over grow the normal flora. As a result you fell awful and have a lot of gas. People take acidophilus to replace the good bacteria but milk free acidophilus is expensive. So people take probiotics which contain acidophilus and recently I discovered fresh sauerkraut which is loaded with this friendly bacteria in the health food store refrigerator. It's very acid and that helps the digestion too. I also take as many digestive enzyme capsules as I need to help digest my food.

I agree with the person who wrote you need to read a lot but it may be confusing unless you know what to look for. People recommend the CureZone website and there is The Dr. Clark Information Center online which will give you lots of information on how your body functions and how to correct problems.

Hope this helps.

People are not recommending the CureZone and Dr. Clark, at least not people from this site.

Open Original Shared Link

[cyberprof]

People are not recommending the CureZone and Dr. Clark, at least not people from this site.

Open Original Shared Link

Twinflame2, I would agree with Momma Goose and would not do things like liver cleanses when your health is so fragile. Focus on whole foods, made by you at home with few ingredients. In this early period, you might want to avoid eating out or at other people's houses. Perhaps you could add a gluten-free probiotic and some gluten-free vitamins like magnesium, Vit D, Vit B12 (sublingual), calcium to help you immune system get stronger.

Good luck.

~Laura

[twinflame2]

Re: Please Help post! I don't think I explained myself clearly enough. I am and have been taking very good vitamins form from a local health food store that are a capsule filled with liquid vitamins. And I still can not absorb things like one of the B family, potassium, calcium etc. They gave me injections of potassium through my IV this last time during my hospital stay. Because I was so dangerously low it had become a very real threat to my life. I was throwing up stomach bile and was to week to stand alone for long.

They kept me for eight days and I felt a little bit better, not completely healthy, but better. I had stopped drinking or eating anything for three days before being admitted. And now the doctor has just had a new test done for IBD. He ordered a IBD Diagnostic Panel. I just had the blood test yesterday so I dont know how it will come out yet. I am feeling very weak and ill once again and fear that I do not have very much time left before I will be forced to go to the hospital for help. It has been since Jan 10th since I was released and I think I am even worse this time. My doctor had told me that some people get so anemic that they do die.

I don't know what to do because I am on a very limited income because I cant work right now and I can not afford the kind of food I need to get better and maybe even live. Is there any kind of help out there for people like me. I have a seventeen year old son in his last year of high school and I need to be here for him. I have to feed both of us on this small income and simply can not afford to do what I need to to get well. I have actually become quite afraid of what will come of me fairly soon.

I do not truly have a positive diagnosis regarding if I am dealing with Celiacs Disease, or one of the many IBD's I have read about, or even cancer. I seem to be displaying symptoms that could very well be serious enough to be cancer. So why would he want to wait two more months before going in to take a real look at my intestines. If there is any cancerous areas in my intestinal track, two more months could prove fatal for me. That is if it may not already be to late if that is the case.

I have a thick white coating on the entire top of my tong, as well as places that feel like they are cuts in my mouth. I am guessing that this would be from the Candida overgrowth in my gut.

You guys I have been given the strongest antibiotic there is one the market today three times this year. The oral ones did not work, again only the IV administration. This medicine can kill the anthrax's and Bola infections and Aids infections that are severe as well. Please advise me in any way you can as I simply do not think that the doctors are seeing the big picture here and I have become extremely afraid of any good outcome for me through this situation. How do I make them listen and help me now while I need it before it may simply be to little to late.

[twinflame2]

Sorry I wanted to add a couple of things I forgot to mention. The e-coli got into my sinuses from cleaning my pet rats cage. I found out that their feces becomes airborne when dry during the process of cleaning the cage. I was already in a weakened state with the Staph or (MRSA) infection. I have had bacterial infections that are listed as the common types for the sinus area since this first illness.

I have lost allot of my hair and my nails are ridged with some having deep ditches in them. I also have another disease process that is complicating things.

I have a very advanced case of arthritis that has already severely deformed my hands. I was told that the doctors do not see this much damage or such an advanced state of this disease until a person is in their eighties. (I am 52). I will be finding out if it is Rheumatoid Arthritis when I see that doctor this week, or what kind he may feel I have.

So I have even more areas of concern than simply just the disease that is talked about here. Just wanted to give you a more complete idea of what I am facing. I am in allot of pain a good deal of the time.

Again any suggestions would be so helpful

[twinflame2]

I think you are correct that your doctor doesn't fully understand. However, you do not need a doctor's approval to take nutritional supplements. So I'd ignore him and take some of the things that will be recommended by the fine members here on this site. You've come to the right place IMO. Many did not seek an "official" diagnosis, but rather simply tried the diet and got well. If you feel you need to see someone in person, sometimes chiropractors are very knowledgeable in regard to nutrients. Also, perhaps a visit to your local health food stores may help, as sometimes the owners are well read on common allergic reactions and such.

As for nutrients, some of the most common deficiencies are magnesium, B12, calcium, iron, zinc, potassium, and B vitamins. There can be others of course, so I'd suggest reading various threads on symptoms, and see what you relate to.

Also, many here report increased sensitivity to other foods after starting the diet, and it is often suggested to avoid dairy in the beginning. Perhaps the best advice I can offer with this is to listen to your body, as it will be trying to tell you what works and what doesn't.

One impression I get is that you may have a yeast overgrowth, such as candida. It may be helpful to take caprylic acid capsules while avoiding all sugars, yeasts, and vinegars. A candida problem may not be part of your ills, but to me it sure sounds likely. Besides, many members have also had the very same thing happen, so it is not uncharacteristic of Celiac sufferers. Antibiotics also leave the digestive system vulnerable to yeast overgrowth, so that's another clue to this possibility.

Even if your doctor doesn't fully understand, at least he has suggested going gluten-free. It cannot hurt, and the benefits can be incredible. I'm sure you'll get a lot of valuable advice from the many members here.

Welcome to the board!

Thank You so much for your help. I was wondering is there a blood test that can determine what vitamin deficiencies a person does have. This would certainly help in targeting exactly what is needed. Also if the body cant absorb certain vitamins are there supplements that are developed that a person with this inability could take that would work.

[Respira]

I am 54, diagnosed with Rheumatoid Arthritis 20 years ago and Crohn's disease 10 years ago.

Yes, the damage done to your intestines affects how you absorb medications and vitamins. I know this from experience.

The only form my body will absorb as far as medications is non enteric coated tablets, capules or liquid. Unfortunately most medications prescribed are enteric coated tablets (because of their time release ability).

As far as Vitamins the best I have found for absorption is Viactiv Calcium and Viactiv Multi vitamin

P.S. Once I discovered that the root of all my problems was Celiac disease, the arthritis stopped cold, of course the bonse twisting that was already done is permanant but no further damage has occured. Crohn's is in permanent remission as far as I'm concerned.

[twinflame2]

I am 54, diagnosed with Rheumatoid Arthritis 20 years ago and Crohn's disease 10 years ago.

Yes, the damage done to your intestines affects how you absorb medications and vitamins. I know this from experience.

The only form my body will absorb as far as medications is non enteric coated tablets, capules or liquid. Unfortunately most medications prescribed are enteric coated tablets (because of their time release ability).

As far as Vitamins the best I have found for absorption is Viactiv Calcium and Viactiv Multi vitamin

P.S. Once I discovered that the root of all my problems was Celiac disease, the arthritis stopped cold, of course the bonse twisting that was already done is permanant but no further damage has occured. Crohn's is in permanent remission as far as I'm concerned.

Respira,

twinflame2 here, I was just wondering since you were diagnosed with arthritis so many years ago has it affected your spine? I mean do you have degeneration in that area because of the disease? I sure do! My spine seems to be very unstable and pops or cracks from top to bottom. You said staying on the gluten free diet has stopped your pain from the arthritis but not the deformities of the bones. The fact that you have had bone changes tells me that the disease is quite advanced in your body like it is in mine. But if following the gluten free diet has given you such wonderful relief from your pain I can hardly wait until I can experience the same kind of relief. When you posted this fact while responding to my post it made me feel so much hope again that my life may not be destined to be riddled with awful pain every day. Please tell me more about the relief you have gotten because this fact alone would make me want to follow the diet even if I did not truly have celiacs disease. I am so excited that there is something I can do regarding my diet that would give me relief from the awful pain I have lived with for so long.

So please tell me more if you dont mind ok.

[ravenwoodglass]

I just wanted to add that my experience with arthritis is the same as the Respira. I had severe arthritis and also carry the gene that is considered a RA gene here in the states. It is however a celiac gene in some other countries, Japan is the one that comes to mind first. Anyway the important thing to me is that I have now been in full remission from my arthritis for almost 5 years. As with the other poster the damage and twisting that has already been done is there for good but I have NO pain or progression of the disease. I was told 6 months before I was finally accurately diagnosed with celiac that I would be in a wheelchair within 6 months to a year. In fact we spent a small fortune remodeling our house and putting in a downstairs bathroom to prepare for it. Within 2 months on the diet my arthritis was in remission and within 6 months I could run up the stairs when needed. I had been on canes or dependent on walls to walk for years. I should note that was partially due to my severe ataxia. Anyway try the diet you have nothing to lose but your pain.

[Ginsou]

twinflame.....perhaps there is a food pantry or food bank in your area that you may be able to join.I was low income for many, many years and raised 2 sons by myself, so I know what you are going through financially. Even with food stamps,and government surplus food, life was tough. There are many more options available today than there was 30 years ago. One option is the angel food ministries, Open Original Shared Link This organization is not just for low income....it is for anyone regardless of income.I have too many food problems to take advantage of this organization, but with a teenage son, it might benefit you.

Since you only respond to IV treatment....it sure sounds like you have a malabsorption problem. When I first became sick I also thought perhaps I may have a life threatening illness......I ended up in the emergency room in great pain (no insurance) and all tests were normal, including a CT scan. Blood tests for celiac were negative. Testing by Enterolab was positive for several problems....celiac,casein,soy.I also have had lactose intolerance for years. At the end of this year I will have medical coverage, and it will be interesting to see what an endoscopy and colonoscopy will divulge. I took Flora-Q probiotic for several months, and it helped greatly. I no longer need it.

I stay on a strict gluten,soy,dairy free diet and my episodes now are less frequest and I am pain free. When I do have some discomfort, I can usually think back and figure out what I have eaten that has caused the problem.

This forum is the best for people reaching out to each other to try and come up with a clue about what your health issues may be.

[twinflame2]

twinflame.....perhaps there is a food pantry or food bank in your area that you may be able to join.I was low income for many, many years and raised 2 sons by myself, so I know what you are going through financially. Even with food stamps,and government surplus food, life was tough. There are many more options available today than there was 30 years ago. One option is the angel food ministries, Open Original Shared Link This organization is not just for low income....it is for anyone regardless of income.I have too many food problems to take advantage of this organization, but with a teenage son, it might benefit you.

Since you only respond to IV treatment....it sure sounds like you have a malabsorption problem. When I first became sick I also thought perhaps I may have a life threatening illness......I ended up in the emergency room in great pain (no insurance) and all tests were normal, including a CT scan. Blood tests for celiac were negative. Testing by Enterolab was positive for several problems....celiac,casein,soy.I also have had lactose intolerance for years. At the end of this year I will have medical coverage, and it will be interesting to see what an endoscopy and colonoscopy will divulge. I took Flora-Q probiotic for several months, and it helped greatly. I no longer need it.

I stay on a strict gluten,soy,dairy free diet and my episodes now are less frequest and I am pain free. When I do have some discomfort, I can usually think back and figure out what I have eaten that has caused the problem.

This forum is the best for people reaching out to each other to try and come up with a clue about what your health issues may be.

I am so sorry I must have missed your reply in my email emails. Thanks for the extra information on the food help programs. It is now May and I have gotten quite a bit more educated on the foods I can and can not eat. This has made the challenge much more manageable. I finally say my GI doctor again and he had told me that I did not show any positive biopsy's for celiacs. But now he has looked at my test results again and stated that I do have the lymphocytes and mucosa that is indicative of celiacs. He is going to do a more extensive biopsy culture by looking further into my upper GI tract this month. This is so I can get a definite diagnosis from him to try and get some of the help that is available to me.

I hope this finds you doing well with your multiple challenges regarding dietary restrictions. I am doing better but have caught a darn virus right now that has given me dysentery and a fever. So I will go lay back down and get some more rest. Take Care. TW2