Hi I'm new to this forum and would appreciate any advice. I've been Gluten Free for 3 years but REALLY want testing done to see if I'm Celiac or just Gluten Intolerant. I know for sure I have to eat Gluten free as I get EXTREMELY sick when I eat it. I've never been able to get tested because I've heard you have to be consuming Gluten for at least 2 weeks for the tests to be accurate. My problem is I throw it up when I consume any amount and get all the other symptoms that go along with it! I would like to know if my genes are prone to Celiac to know if I need to watch for any other autoimmune diseases? It would also be nice to know since I have an identical twin sister who has all the symptoms as well. My other question is what tests can my doc perform to see if I have a malabsorption problem? If anybody can tell me ANY tests I can get done to check my vitamin and mineral deficiencies because I KNOW I'm deficient in something! I'm currently on disability for my illnesses. I'm desperately seeking any help!!! My main concern is I'm SOOO Fatigued I'm on 80mg of extended release Adderral a day just to stay awake and I'm to the point where that doesn't even work anymore. I'm only 24!! I'm at a loss on what to do! My doctors seem to not take me serious what so ever and I'm suffering depression and Bipolar as well as Extreme Anxiety with a lot of other problems! I feel helpless and just want answers! I also think I have Many more food intolerance's but don't know exactly how to go about figuring those out either....I would love any feed back as I feel my body is shutting down....
You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two. The genetic tests are not terribly useful as far as telling apart celiac vs. gluten intolerance since you can be gluten intolerant with DQ2 and celiac without the so-called celiac genes.
As Beachbirdie says, you need thyroid testing. Probably also iron, B12, vitamin D, and a lot of naturopaths are starting to look at zinc deficiency as a problem for some people. You probably also need to be tested for lyme disease, mono, and other common causes of chronic fatigue.
You might consider an elimination diet for a couple weeks. Lamb (or turkey if you can't afford lamb and don't eat turkey often), rice, and pears is a pretty classic allergy elimination. If you feel better eating only a few foods that don't tend to cause people problems you know there is a food intolerance involved.
Have they given your thyroid a good going-over? That can contribute greatly to fatigue, depression, and anxiety.
The only panic attacks I ever had in my life were when my thyroid was crashing.
Thanks for your response. I'm not quite sure what you mean by giving my thyroid a good going over? I have my test results in front of me and it says my TSH results that I had done in January is 0.88 mIU/L and I'm assuming the other number 0.34-5.60 is the normal range. I'm not sure what this exactly means as the docs say my thyroid is fine. Are there more tests I should ask for? All your help is very much appreciated!
Have you checked to make sure all the meds you are on are gluten free? Many times the script bottle will have the maker on it and a quick search using their name and the words contact info should get you a phone number.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45 Blood tested and repeatedly negative Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002 Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56 Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007 HLA-DQB1 Molecular analysis, Allele 1 0303
You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two. The genetic tests are not terribly useful as far as telling apart celiac vs. gluten intolerance since you can be gluten intolerant with DQ2 and celiac without the so-called celiac genes.
As Beachbirdie says, you need thyroid testing. Probably also iron, B12, vitamin D, and a lot of naturopaths are starting to look at zinc deficiency as a problem for some people. You probably also need to be tested for lyme disease, mono, and other common causes of chronic fatigue.
You might consider an elimination diet for a couple weeks. Lamb (or turkey if you can't afford lamb and don't eat turkey often), rice, and pears is a pretty classic allergy elimination. If you feel better eating only a few foods that don't tend to cause people problems you know there is a food intolerance involved.
Thank you Skylark for your response again I can use any advice. I've been reading a lot of your posts on here and am intrigued by your knowledge! I just had blood work done again and the docs say everything looks normal...my question is, what's normal?? Does it vary from person to person? What if my normal is different than what the docs say is the "normal range"?? Is this possible? My chiropractor gave me a Health Appraisal Questionnaire from Metagenics called MET423. Are you familiar with this company at all? My results were off the charts! It says I'm in the "High Priority" in almost every category of the body...My point is the doctors all say I'm in perfect health by all my lab work but I KNOW there's something going on with my body I just don't know exactly where to start to figure it out??... I have done a lot of researching about elimination diets...I just don't know which one to go by! How do you pick one? I'm leaning towards the SCD diet at the moment...although I am concerned with basically everything I eat..My biggest thing is I TRULY believe I have Leaky Gut and Systemic Candidiasis.... Do you have any suggestions on helping with either one of these conditions? Also, I'm looking into EnteroLab testing. The only thing is the cost. I'm currently on Medicare and State Medical Assistance for insurance so I'm sure I wouldn't get reimbursed. I would LOVE to be tested for all other food intolerance's! What's your personal opinion with EnteroLab? I see a lot of people on here have been tested through them and curious to whether that would help me or not?... Again your feedback is MUCH appreciated!! I'm Tired of being soooo Tired!!!
I'm in your shoes. Feel awful, all tests normal. They don't test enough and you're absolutely right that your "normal" might not be "normal". If you're sure you have leaky gut and candidiasis, SCD or even GAPS (http://www.gapsdiet.com) is probably a good first thing to try. Pay attention to how you feel after the sauerkraut or yogurt - it might help but fermented foods give me trouble because they are high in amines.
I wouldn't bother with ANY intolerance testing, especially if money is an issue. You will not get reimbursed for Enterolab becasue it's not a valid diagnostic test. All intolerance testing is very prone to false positives. As I said earlier, elimination is much more reliable than the testing and it's free.
You can't be tested for celiac without eating a fair amount of gluten, which doesn't sound like a good idea. Two weeks is not even long enough. Chicago Celiac Center tells people to challenge for three months, other clinics say two.
I absolutely agree that consuming any amount of gluten is not a good idea for erikamarie.
Thanks for your response. I'm not quite sure what you mean by giving my thyroid a good going over? I have my test results in front of me and it says my TSH results that I had done in January is 0.88 mIU/L and I'm assuming the other number 0.34-5.60 is the normal range. I'm not sure what this exactly means as the docs say my thyroid is fine. Are there more tests I should ask for? All your help is very much appreciated!
My TSH was in range also. My doctor prescribed Armour eventually anyway. It really helps. She told me to take it every 4 hours, and if I'm late, I absolutely crash.
I KNOW there's something going on with my body I just don't know exactly where to start to figure it out??... I have done a lot of researching about elimination diets...I just don't know which one to go by! How do you pick one? I'm leaning towards the SCD diet at the moment...although I am concerned with basically everything I eat..My biggest thing is I TRULY believe I have Leaky Gut and Systemic Candidiasis.... Do you have any suggestions on helping with either one of these conditions? Also, I'm looking into EnteroLab testing. The only thing is the cost. I'm currently on Medicare and State Medical Assistance for insurance so I'm sure I wouldn't get reimbursed. I would LOVE to be tested for all other food intolerance's! What's your personal opinion with EnteroLab? I see a lot of people on here have been tested through them and curious to whether that would help me or not?... Again your feedback is MUCH appreciated!! I'm Tired of being soooo Tired!!!
I can really relate to being sick and tired of being sick and tired. A former coworker even wrote, sang and recorded a song about that for me. You are on the right track with all of this: the leaky gut, the candidiasis, the scd, the tests you want. I knew I had the leaky gut and candidiasis before I heard of gluten. Listen to your body.
I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more. Most of my food intolerances cause myalgia for 5 days or more, starting within 2 to 12 hours after eating them. These run the gamut of foods, but are every category of related food allergies I've heard of, like nightshades, and I've recently understood that I can't handle any cruciferous vegetables. I had to eliminate all herbs except oregano.
Obviously you can't afford all these tests, and they won't be covered. I have heard that 66% of celiacs are self-diagnosed. It's no wonder, with how sick we get and how unhelpful most doctors and health insurance is.
I was very happy with my enterolab testing, which I did a month after going gluten-free, including stool for antibodies to gliadin and tTG, fecal fat content, casein intolerance, and gene test. My doctor, an MD with more than 20 years of experience with gluten issues, diagnosed me based on the results. But I had my doubts after a couple of months of being gluten-free, until I got glutened in a restaurant, and got sicker than ever. Like Dr. Fine says, that is the best test.
I just had a positive blood panel, 4.5 years after diagnosis. I only eat meals I prepare from scratch from whole foods, and a few (right around 3 that I stick to) prepared foods, don't go into restaurants, and eat small samples of food prepared by a very experienced and knowledgable celiac chef every few months at a support group cooking class. But I was gluten symptomatic when I had the blood drawn. My doctor told me about a case where a patient of hers had a negative blood test, then had a positive one after being gluten-free for a year. The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.
Erikamarie, do you think you have the gluten successfully eliminated? How long has it been since you think you got contamination? Do you live with gluten consumers?
An elimination diet is pretty simple really. You don't need to read a lot of theories about it or prescribed foods to eat etc. Just pick out 5 foods that you don't think will bother you and eat only those foods. After 2 weeks if you feel better then you are most likely ok with those foods. So pick out one additional food to add to your diet, again something that you don't think you will react too. It your same diet with plenty of that new food for 3 days. If you get sick then that new food is probably the reason. So eliminate it and try again.
Everything counts though, coffee, tea, sodas, spices, vitamin pills, meds, etc. Anything you consume is a potential problem, not just food.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it." Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me. Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
I have heard that 66% of celiacs are self-diagnosed.
Joe, This is a very specific statistic....where is this documented? thanks!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
The so called truths about testing for celiac are not true for everyone. It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.
It's very political. There are labs and researchers who know that celiacs have a different, altered metabolism, and there are metabolic markers, even after being gluten-free for years.
Again, is this statement based on ANY scientific data?
WHICH labs and researchers "know this"??
You keep posting statements as if they are "facts" and using random statistics and do not provide anything solid in support.
In the Blood Transfusion thread, too.
May I remind you of Board rule #5.
"Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I spent thousands of dollars on tests, out of my own pocket, and they all helped, especially the really expensive food intolerance one. It is hard to find one with as many intolerances as me. Generally, the older you are at celiac diagnosis, the more food intolerances you are likely to develop from leaky gut, but I know one woman who is much younger than I who had more.
again....?? I also had IgG testing done by an "integrative doctor" and paid out of pocket, but the reality is...we may have been "had". Mine said I had no "gluten antibodies", but I was a raging celiac. Sick to death.
This does not mean that some Celiacs will not develop secondary intolerances (lactose or egg, for example) as a result of blunted villi. I did myself.
Here is a recent article that busts these claims:
"Claim: The IgG blood test is 95 percent reliable.
Reality: The test is prone to false positives and not considered reliable by any U.S. or European allergy or immunology society."
This is found in the following article....
Be wary of food intolerance tests — they may not live up to their claims Published: April 19. 2012 4:00AM PST
If you’re considering taking a food intolerance test, it’s best to read the company’s marketing materials with a critical eye.
A quick scan of websites selling food intolerance tests revealed some inaccurate statements.
Here are some of the most common:
Claim: Food intolerances are caused by eating a repetitive diet; this overloads the immune system and the body responds by rejecting those foods.
Reality: “The gut-associated immune system is well-equipped to deal with loads of antigenic material, and there is just no evidence that it may become overloaded by exposure to large amounts of the same antigen,” said Stefano Guandalini, founder and medical director of the University of Chicago Celiac Disease Center.
Claim: The number of Americans with food allergies may have risen to a whopping 60 to 75 percent.
Reality: Food allergies, which are different from food intolerance, affect 5 percent of U.S. children younger than age 5 and 4 percent of older children and adults, according to the Centers for Disease Control and Prevention.
As many as 1 in 3 people think they have a food allergy, but only about 1 in 28 have a food allergy that has been confirmed by a health care official, the National Institute for Allergy and Infectious Diseases says.
Claim: Most insurance covers food intolerance testing.
Reality: Not true.
Claim: Hair sampling is a safe and noninvasive method of revealing nutritional deficiencies.
Reality: Hair is made up of a protein, keratin, that can be analyzed to determine its mineral content.
That data can be used to find out if the body is lacking in certain minerals, but it can’t tell you whether you have food intolerances, allergist Lee Freund wrote in “The Complete Idiot’s Guide to Food Allergies.”
Double-blind studies haven’t shown any diagnostic value for this test.
— Chicago Tribune
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
My main concern is I'm SOOO Fatigued I'm on 80mg of extended release Adderral a day just to stay awake and I'm to the point where that doesn't even work anymore. I'm only 24!! I'm at a loss on what to do! My doctors seem to not take me serious what so ever and I'm suffering depression and Bipolar as well as Extreme Anxiety with a lot of other problems! I feel helpless and just want answers! 
