Dietary Changes - Celiac Disease?

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Apr 8, 2009.

  1. Shananegans

    Shananegans New Member

    How many of us have been misdiagnosed?

    After a massive amount of research over the past few weeks I have come to the conclusion that it is possible I have been misdiagnosed. For a refresher, I was diagnosed with FMS in 2000 after at least 2 years of noticeable pain and muscle malfunction in mostly my legs. I couldn't walk for more than 5 minutes without being in so much pain I felt like I was going to pass out. This was discovered while going to college and living on campus. I had to walk from one end of the campus (the dorms) to the other (my classes), and the longer I was there, the worse it got, so I finally went to the doctor. After multiple typical elimination tests, my doctor concluded it must be FMS. I have all 18 tenderpoints, muscle spasms, muscle tension, migraines, sensitivity to light, scents, noise, chemicals, etc, fatigue, low immune response, bowel issues and now (since 2005) multiple food allergies. But here's the strange part, I'm not allergic to all the foods all the time. It comes and goes and that is just not possible when it comes to food allergies and this is the reason I feel I was misdiagnosed.

    I have been reading all over the internet along with books and medical articles and have decided that I more than likely have Celiac Disease. The first food "allergy" that came up was lactose intolerance (yes, I know this isn't actually an allergy) which started when I was 18. Next was rice, yes rice, in 2005. And then all of a sudden, wheat shortly after the rice. So I went to an allergist. The allergist proceeded to tell me that all of my tests came back negative (except my seasonal allergies) so according to the tests I wasn't allergic to food. But I knew for a fact that rice put me in the hospital twice, just plain, nothing on it, white rice.

    So I decided to cut both out of my diet. Then I did some research and found out it might not just be wheat, it might be gluten, so I cut all gluten out of my diet (not an easy feat by any means). After a few months, I started to improve greatly, but I had also decided to go on MS Contin at this point so I wasn't sure what made me better or maybe it was a combination of both. But then, do to finances a few years later (2007 ish) I started eating gluten again. At first it was okay but then I started getting worse again after about a year of eating gluten.

    After my recent research I have found out that many times Celiac goes undiagnosed because the blood tests will come back negative and most doctors won't go any further than this. Some people live with it for 20 years or more without ever knowing what is causing their suffering. So I have recently decided to cut the gluten back out of my diet and hope for the best. I am also cutting out all other foods that cause me any sort of digestive issues. I can't even eat a hamburg without repercussions (even with no bun!). So I will be a gluten free vegan. I am also weening off the MS Contin as I can't take it ruling my life any more. And it never stopped all the pain anyways.

    I will keep everyone posted as to my improvements (or if it doesn't work for that matter).
    I think we should all get tested for food issues, especially Celiac disease. What if most of us could function just by changing our diet and we never know? I have suffered for years with chronic pain and what if it all could have come to end if I had one doctor who wanted answers instead of just treating the symptoms? Research Celiac and you'll know exactly what I am talking about. Everything that is wrong with me fits the symptoms of Celiac, most of the symptoms for CFS and FMS (including the immune system problems) fits Celiac. What if it's grossly being overlooked?

    Sorry for the long post but I had to get this off my chest and I wanted to let other people be aware, you could have this too and with a few changes (no they are not easy changes) you could feel better. I haven't had gluten in a week and already I feel better.

  2. ruti

    ruti Member

    I have a similar situation. My daughter has celiac (which is genetic and I know we have another person on my side of the family)
    I was not diagnosed as celiac but also decided to go gluten free.

    It is possible that no food allergies appear on the test due to very low antibodies (low immune system). This is what happened to me.
    You can do 2 tests that will be very helpful here that are not based on antibodies as in the blood test.
    Ask to do breath test for Lactose and for Fructose (they do it separately)

    It turns out that the weat also has much Fructose in it. So it might be the Fructose you are reacting to (and some syrop for the meat such as corn syrop that has tons of fructose). Honey has lots of fructose, an apple and a pear.
    It is hard to find the fructose breath test and doctors don't send you to do it - it is usually in a hospital - I had to go all the way to Prof. De Meirler in Belgium to get his advice to check for Fructose intollerance.

    It is better if you can get a diagnosis before going on gluten free and you need to have the blood test after a period of eating gluten.

    You also might want to check for candida which also would explain a lot of your symptoms.

    Ypu defentely has FS and the problems you describe are very typical for it - I have them all.

    If you want more details you can also write me for my email

  3. xchocoholic

    xchocoholic New Member

    Here's an article by the NIH on how celiac can be missed ... it states that CFS is a common misdiagnosis ..

    Now, I don't know how the NIH relays info to the public, but how many of you have seen this info ? or anything else by the NIH ?

    FWIW .. you may want to go ahead and try the leaky gut, Paleo or candida diet. Many are finding that just giving up gluten isn't enough and that we actually have a more severe case of leaky gut than someone who is just a celiac.

    There's no doubt that the carbs from the gluten free grain products can hinder your recovery by keeping your BG levels erratic and by feeding candida.

    But, go easy on foods that are high oxalate such as rhubarb, spinach, nuts, etc. Those with leaky gut often have problems with these too. Improper regulation of oxalates causes kidney stones, vulvodynia and FM. Just google oxalates to see the list of foods you need to go easy on ... and to learn more about oxalates.

    HTH ... Marcia

    [This Message was Edited on 04/09/2009]
  4. Shananegans

    Shananegans New Member

    thank you for your post. i would love more info. not sure how to send out personal messages on here for an email addy tho. Help? I am always looking for info on anything to do with this topic as I would love for a doctor to tell me I'm right for once. :)

    thank you for pointing the leaky gut out. Just wanted to let you know that although I focused on Celiac in my topic, it's not just Celiac I am dealing with.

    I have made the choice to also go completely vegan (as I have dairy issues and most meats upset my stomach anyways) and as close to yeast free as I can get. I also do not consume much sugar (never really have) and I use as many natural products as I can get.

    I also do not eat processed or pre-made foods as I am allergic to preservatives too. So I hope that makes you feel a bit better on the issue of "paying too much attention to just gluten." I focused on that because it is the hardest part of my diet change. I love bread and anything involving carbs so it's been quite the adjustment to the new flours and textures.

    It's like learning to cook all over again as if I've never done it before. But again, thank you for point leaky gut out, I will also pay close attention to that as a possibility and keep it in mind when I go grocery shopping this weekend!

  5. xchocoholic

    xchocoholic New Member


    Love the name btw ...

    I posted the thread on celiac vs leaky gut about 2 weeks ago on my GF board so it wasn't just for us. We see people all the time over there who feel better when they finally give up grains .. me too ... It took me a couple of years to figure all this out so I was just trying to save people some time ...

    granted .. I enjoyed those GF goodies too but if you want to heal faster, chances are they're just going to slow you down ...

    My plan is to try them again once I'm totally healed from leaky gut ... it's possible I'm stuck with some of the symptoms from this DD since my OI/PEM and hypoglycemia could be the result of permanent damage which is probably from years of eating gluten, etc.

    Good luck to you ... marcia
  6. ruti

    ruti Member

    Hi. I also don't know how you get to a personal email.

    The diet you are doing is too harsh and you don't have a good diagnosis and you might get too strick with yourself. Did you do the celiac blood test? (after a period of eating gluten?) Did all 2-3 measures are negative?

    Do the breath test for the Lactase and you will know for sure if you need to get off milk. (you can also add lactose enzemes to milk)
    it is a good idea to add mult enzemes to your meals and take a good probiotics.

    See if you can get a diagnosis for Candida ( a center that tests for saliva or stool) or do a more expensive but very important analysis in a good lab such as smokie lab (stool test) or Diagnos-Techs in Tukwila Wa
    tel 4252510596
    You might need to order it through a health person. I did a stool test that Prof De Meirleier from Belgium sent me to do the a stool test in this US lab and they discovered things that the local labs here didn't find.

    Try to get a candida evaluation - you might need a candida diet and not gluten free,
    You need a source of protein and the vegen diet is problematic. If you are not vegeterian by belief it is important to eat some meat (maybe chicken, fish, turkey) eggs are a great source of protein, soy beans / tofu

    Before you get a reseanable diagnosis the diets are not always useful. If you do have celiac it is very important to know it since then you stay on a strick gluten free diet for life and it is absulutely important.
    Sometimes if you have low IGA (and they can't detact much antibodies they can look at IGE (?? I am not sure but not just the regular Celiac tests)
    Tell me some more about your symptoms - intestense, diarria, gas, bloating? swollen belly? do you have a furry white tounge?
    do you suffer from fungus on your nails? vigiana?
    Do you have toxins feelings? very bad feeling in stomach? head ackes, flare like days?
    What are your most severe symptoms?

    Hope you feel better and find out a good direction
  7. Shananegans

    Shananegans New Member

    Thank you for your concern, I do appreciate. I've known for years that I'm lactose intolerant, that one a doctor told me when I was somewhere between 15 and 18.

    I also know I do not have a candida issue. No fungus issues either.

    As far as my symptoms go, first directly gluten related - I pass out (pretty much fall asleep) when I eat anything with gluten in it for an extended period of time, like a couple of days in a row or sometimes just once. I experience stomach cramps, diarrhea, constant bloating, gas, swollen belly (I constantly have a little buddha belly), and sometimes vomiting when ever I eat it. I also experience sinus discomfort, excessive phlegm and a sore throat.

    Other symptoms: Migraines (which have actually been under control the last few years), body aches (mostly muscle), muscle tension, joint pain. I don't really have long term flares any more. I do have bad days where I usually sleep all day or am just in more pain that usual, but it usually only lasts a day or two at most. My body also retains excess iron. I try to avoid foods high in iron as they make me sick when I eat them.

    As far as the protein in vegans go, most vegans know how to get plenty of protein. Meat isn't the only source of protein. I was a vegetarian for years and got plenty of protein. Other sources are Nuts, Soy foods, such as tofu, tempeh, miso, and soy milk, Sprouted seeds, Grains, especially amaranth and quinoa, Beans and legumes. Lack of protein is a misconception about veganism.

    I am well versed in the language of nutrition and I know what my body needs and what it doesn't and where to get it. People live everyday on all sorts of animal free diets, even raw diets and they do just fine. I do massive amounts of research before I make decisions. I never do anything hastily. But again, thank you for your concern.

  8. xchocoholic

    xchocoholic New Member

    Wow .. you and I sound a lot alike when it comes to gluten. I have to be sooo careful about cross contamination. Do you know about the dedicated GF facilities like Kinnickkinnick, Glutino, etc ? I was trying to eat these but finally gave up .. for now anyways .. lol ...

    Not to rock the boat ... I totally respect your commitment to being a vegetarian, but I've read that people with CFS need the protein found in meat because we can't absorb the other proteins as well. I can't remember which of the researchers determined this. But I've mostly read articles by Myhill, Titlebaum and Cheney.

    I feel like crap if I don't eat red meat. I tried to go vegan for awhile but it didn't work for that reason. Maybe when I heal a bit further though ... personally, I really don't care what I eat as long as I eat ... if I could feel good eating Cheetos 24/7, I would ... lol ...

  9. Shananegans

    Shananegans New Member

    I was not aware of the protein issue with us not being able to absorb other proteins. Thank you for bringing that to my attention. I will definitely keep an eye on the situation. Unfortunately I can't eat too much red meat because of the iron. My body holds enough for 2 healthy females. I get sick to my stomach if I eat a steak. Although I love them so! That was actually the main reason I went vegetarian. I never really liked pork, chicken or turkey and since I couldn't have the meat I wanted, I figured the heck with it... I just wouldn't eat any.

    Thank goodness I'm not allergic to soy! I use it a lot, tofu, soy milk and strange enough, I love it! I also love beans, another trick to staying healthy for those of us that don't eat meat.

    I too could live off of Cheetos! I'm a food-a-holic! I love food but unfortunately food does not love me. lol.

    I have found in my journey that most pre-made gluten free breads are well... for lack of a better word... gross. So now I am playing with baking at home. I have found a bunch of recipes and haven't perfected anything yet but hopefully I will come up with something. The tough part is I can't use rice flour as I am allergic to rice. Makes life fun doesn't it? hahaha.

    We'll have to keep in touch and see how things go!!!

  10. Shananegans

    Shananegans New Member

    Unfortunately they have not ruled out hemachromatosis completely. The last time I had blood drawn, my iron levels were acceptable so we are keeping an eye on it. No one seems to want to take it seriously so I wait.... and wait... and just avoid things that don't agree with me.

    Thank you for the book recommendation. I will definitely check it out!

  11. ruti

    ruti Member

    Your strong reaction to gluten is so that you would think it will be diagnosed as a child. Did you get a celiac diagnoses? were the blood test positive? it is worth doing the endoscopy to see how the villis look like.
    alergy to rice is very surprising since it is usually very easy and neutral for people. The GF diet is really based on rice.
    How do you know you don't have candida? it might be not gluten but any carbo food.
    Check the Fructose intolrance - that can also explain the sensitivity to wheat.
    When I had candida I developed many allergies including to medications. Much of it has gone now.
    I also have issuses with sinuses and allergic nasal.
    The meat it can be something else you are reacting to and not necessary iron.
    Have you checkes sensitivity to sodium glutamat? (not because of the meat but the strong ractions you have)

    I hope you find what is good for you to eat
  12. Shananegans

    Shananegans New Member

    35 to 50% of people in Asian countries are allergic to rice. It's not rare, it's rare in the US. People who eat rice (or any food for that matter) as a regular part of their diet have more of a chance of becoming allergic to it then others. If my life, I've eaten a lot of rice due to lack of funds and enjoying rice, so now I'm allergic.

    Like I said in my original post and further throughout the posts, I've done A LOT of research and I know what I am looking for. I may have not been dx with celiac as a child because no one around here even thought of looking at the food allergy option. I didn't even know I was lactose intolerant until I was 15 or so.

    And the meat is the iron. I know it's the iron because a doctor of mine told me it was probably the iron.

    I know don't have candida because I've been tested for candida and it came up negative.

    And a GF diet is not based on rice. There are a ton of other grains and flours out there and I can eat them all.

    I know you think you are trying to be a concerned person but I don't need someone else in my life doubting everything I say.

    I shared my story to possibly help others, not to be judged.
  13. ruti

    ruti Member

    I am sorry if you got the feeling I am critizing you. It is defenitely not my intension. I tried to understand the facts.

    I respect very much finding what is good for you by learning and trying.

  14. shelbo

    shelbo New Member

    where you write:

    There's no doubt that the carbs from the gluten free grain products can hinder your recovery by keeping your BG levels erratic and by feeding candida.

    Thanks, Shelbo :)
  15. Shananegans

    Shananegans New Member

    Thank you, I really can't handle being doubted or questioned.
  16. xchocoholic

    xchocoholic New Member

    There was a study done recently on the Paleo diet where they put several people in a zoo and fed them only meats, fruits and veggies ... these people all had problems with their BG levels and by the time they came out, their levels looked much better ... I'm trying to think of where I have that study link ... I'll bet if you google zoo Paleo you'll find it ..

    About the same time I saw that study, I found an article by Dr. Myhill that stated that most of her patients with CFS have chronic hypoglycemia and she recommends this same diet to them.

    This article is in the Prohealth library and can be found by searching Myhill.

    HTH .. marcia

    PS. My BG levels stabilized quite a bit just by going on the Paleo diet. My GTT was normal this last time and I no longer feel weak when I get up in the am ... it doesn't happen overnight so you have to give it time ...

    When I noticed I still had a problem with this while running errands, I had my doctor test my chromium levels and that came back low. Chromium helps regulate BG levels. But, I've been supplementing with that since Sept 2008 and I'm still struggling with this. I just found out that other nutritional supplements (one of the B's) and omega 3 help this too. So it's a bit more complicated than I realized.

    Within the last week, I started taking 2 Candidase + 1 Virastop 3 times a day and this is helping too ... I've yet to google it but I suspect a link between hypoglycemia and candida.

    Sorry this is so long .. I have a ton of energy this morning ... Marcia

    [This Message was Edited on 04/11/2009]